3/31/25

One member shared that he did have a urology test with a camera and he has an enlarged prostate pushing on his bladder.  It could explain his stomach/side pain.  There is a procedure that can be done, but the doctor said that they don’t recommend it for persons 75 years and older and/or if life expectancy is less than 10 years.  The doctor said that at his age, the procedure could damage his prostrate more and cause more problems.  So, he is not sure what he will do.  He said the recovery is 6 weeks too so he would really have to plan for it.  Someone suggested getting a second opinion to see if he might have more options.  He said he does have some other tests ordered by the neurologist that could explain his stomach/side pain.

Another member shared that she has been very busy merging her medical practice with a physician group that will take care of her patient appointments and billing, but has been having to work full time even though they told her that when she joined that it could be part time.  So she is trying to work through it.  She said she started taking Low Dose Naltrexone 8 mg, Abilify 10 mg, and Modafinal to help with her fatigue and brain fog a couple weeks ago.  She said she didn’t do the step up for LDN and Albilify. She thinks the meds might be helping her get through the day, but is still wiped out by the end of the day.  She also went on hormones, but they gave her horrible headaches so she stopped taking it.  She said she did start using the UV Light to kill the fungus in her home, but it has been slow as you have to leave it in place for about an hour. She said this is the same UV light that was used in the hospitals to kill COVID.

One member shared that she is in the study and is in the control group for the PEM study.  She was hoping to be in the un-controlled group as she knows the activities are going to be hard, but the doctor told her that they do appreciate her being in the control group as they do need patients with Long COVID in this group for the study to work.  She said she does get paid for being in the study.  She said she gets $350 each time she goes into the office and $75 each time she gets a doctor phone call.  She is expecting to go into the office and get a phone call on a weekly basis.  She said the study runs tor 6 months.  We expressed our gratitude for her being in the study.  Another member inquired about getting into the study in the LA area, but it was already full.

Article shared this meeting:

2025-03-31 Ensitrelvir Shows Promise for COVID prevention – find this in the Vaccines folder

3/24/25

One member shared how her Long COVID seems to be getting worse as she approaches her 5 year mark next month of having Long COVID. She shared her brain fog is especially worse and it’s been harder to do things like having lunch with a friend and taking more time to recover.

Another member shared that he is continuing to keep up his cardio exercises and is feeling a bit better each time.

Another member shared that she is doing okay and her knee is healing as she continues diligently with her physical therapy.

We discussed our daily challenges and supported each other.

Article shared this meeting:

2025-03-24 A Clearer Picture of Covid – find this in the Doctor Guide folder

2025-03-24 What do we know about long COVID_ _ Pittsburgh Post-Gazette -  – find this in the Doctor Guide folder

3/17/25

No meeting notes taken this day.

No articles shared this day.

3/10/25

We welcomed a new member this meeting.  She got COVID last June and has been suffering Long COVID symptoms that got worse in Nov of last year.  She shared she has had Lupus for awhile and is on Prednisone a lot.  When she got COVID, she took Paxlovid and it made her symptoms worse.  She has also taken the COVID vaccine and had a bad reaction to it.  Since getting COVID, she now suffers with ears feeling plugged, has gall stone issues, been losing weight as she has trouble eating, is nauseous a lot, has esophageal issues and spasms, has heart palpitations, and sleeps poorly.  She is feeling quite depressed with this heavy load of medical issues since getting COVID.

We discussed Low Dose Naltrexone and how it has helped some of members,mainly with brain fog and a little with energy.

One member shared that she signed up for a study led by Duke University with the goal to improve exercise intolerance and PEM (post exertional malaise) in hopes that people will be able to exercise like they did before.  She said it’s a six-month study and she passed the first 15 minute screening test and will be going in for a slew of tests – she has to wear a fit bit, take blood/stool tests, and cardio tests to see if she can participate in the study.  You also have to prove that you had COVID by taking a test called SARS-CoV-2 Ab, Nucleocapsid test.  It tests for antibodies from COVID and not the vaccine.  Only the Nucleocapsid test can test for the real COVID antibodies distinguished from the vaccine.

All members shared their Long COVID stories and symptoms to the new member to let her know she is not alone in her frustration and challenges of new health issues.

Article shared this meeting:

2025-03-10 Chronic inflammation - ways to reduce – find this in the Inflammation folder

3/3/25

One member said she wasn’t in last week’s meeting as she got really sick and had to go the doctor. She got a 103.9 fever for 3 days and the doctor tested and said she had Influenza A.  She got a sore throat, congestion, coughing, and body aches. Apparently, Influenza A is the worst flu to get as it is worse than B & C and is very contagious.  She said she is a lot better, but still quite fatigued yet. She said she did take Tamiflu right away, but it made her sicker and the doctor had to also prescribe anti-nausea meds as she wasn’t able to keep the Tamiflu down. The doctor also had to prescribe an inhaler.  It came up that you can get home tests now that not only test for COVID, but Influenza A & B as well.

One member shared that she went out to lunch on Saturday, had a good time, but got so wiped out and seems to be taking more days to recover from a lunch outing.

One member shared that her knee did get fractured, and it is slowly healing.  She is wearing a brace now and still using a walker. She said she has been getting good sleep lately.

One member shared that he is still suffering a lot of pain which is making his fatigue worse and making it hard to do thing, but tries to get out when he can.

One member shared that he is still having back and leg pain, but can’t do anything about it yet due to his heart stent surgery.  He has a few months more to wait before treating his pain.

One member shared that she finally got her ultraviolet light delivered yesterday and will start using it to kill the mold in her home.

We had a discussion on trying psilocybin (psychedelic drug) for Long COVID as there are articles saying some people have had success with getting rid of their Long COVID symptoms.  It is recommended that if people choose this, they should do it with a doctor’s supervision as it is not an approved treatment.

Articles shared this meeting:

2025-03-03 COVID shots protect kids from long COVID – find in Research folder

2025-03-03 Psilocybin to treat Long COVID – find in Medicines folder

2/24/25

One member shared she overdid it the previous weekend.  She had lunch on Saturday, then helped a friend with her finances on Sunday, on Monday went shopping at one store and got wiped out.  She normally does only one thing on the weekend but sometimes it’s hard to plan it that way.

One member said that work had been really busy for her and she is still dealing with her fungal infection.  She just learned that there is type of ultraviolet lamp that gives out light waves that will kill the fungus in her home.  She recently ordered it and is waiting for it.  She said she had missed 3 days of her fungal medication due to waiting for her prescription to be filled and it did her in.  She felt like it really set her back.  She is looking forward to the ultraviolet light so that she can get rid of the fungus in her home permanently.

One member said he has been more tired and fatigued than normal and that his neuropathy is worse.  He has been waiting for his appointment with his neurologist in March.

One member said that he is recovering well from his heart attack and has been keeping up his exercises and enjoying the weather out here in the desert.

We discussed diabetes and how it affects daily life.  One member recently started wearing a patch to help her monitor her levels so she can be more proactive.

We discussed how so many doctors still don’t understand PEM and that slowly increasing our exercise time doesn’t work for people with Long COVID.

2/10/25

One member shared that she had a two year follow up for a neurological brain scan and received good news that there are no signs of Alzheimer’s or dementia.  On the down side, she fractured her knee recently, had testing, and is awaiting diagnosis and treatment from the orthopedist.

One member shared that she knows of a 23 year old who got COVID twice and after the second time, it gave her seizures.  She was healthy before and had no history of seizures. We discussed how COVID seems to be bringing out diseases when it wasn’t there before.

One member shared that he had to stop the pain medication that was easing his side pain since his foot pain got severe.  He went back to taking the previous medication that helps with his foot pain which is now better.  He can’t take both medicines and feels the side pain is easier to deal with.  He is hoping his appointment with the neurologist will get him help with the side pain.   He said his diabetes is under control, so that’s a good thing.

One member shared that he is now here in the desert with us and will be enjoying the better weather down here.  He has been looking into places where he can continue his cardiac exercises and found a couple possibilities to look at.  He is planning to select a place next week.

Articles shared this meeting:

2025-02-10 Most People With Long COVID Do Not Recover in Second Year of Illness – find in Research & Studies folder

2025-02-10 Women Face Higher Risk for Long COVID – find in Research & Studies folder

2/3/25

One member shared her new aches and pains in her right hip thinking it may be from pinched nerves as it moves around.  She also has been having pain during the night and various areas of her body and massaging them away doesn’t work anymore and has to get up and if she uses her CBD pain cream, that makes it go away.  She also said the pain in her left hand has gotten worse, especially at night.  Another member suggested the Omnilux red light therapy glove to wear that helps with pain and inflammation.

One member shared his ever ongoing neuropathy pain. The doctors think that the neuropathy is spreading to other parts of this body and that’s why he is having his stomach issues and pain.  The doctor also think his bladder issues are from the neuropathy and that is causing his frequent trips to the bathroom. He is still waiting for his appointment with the neurologist next month.  He tried another medicine and said the pain in his side is better, but the pain in his feet got worse.  He did say that his diabetes is under control.  For the first time, his A1C was 6.0. His score is usually over 7.0 but he has learned to manage his diet and shots better which has helped a lot.

Another member said that she had her first anesthesia test shot into her sac between her spine and hips and it relieved her pain.  She now has to schedule the second test shot with anesthesia and if that works again, then the insurance will pay for the actual steroid shot to relieve her pain. She said the PA was actually the one who diagnosed what treatment she needed.

One member shared that she has been pretty tired.  She has a crash last week, but noticed that instead of getting nauseous as before, she got loopy, almost dizzy so a new symptom has occurred for her.  She thinks her work stress and some family stress have been draining her energy.  She shared that she is now using mouth tape when she sleeps.  It keeps her mouth closed so she doesn’t open her mouth while sleeping.  She also went up to 6.0 mg Low Dose Naltrexone.  She is also considering starting CBD gummies too.  We discussed that CBD and Naltrexone are supposed to be synergetic.  One member said she takes them both before bed together.

One member shared that he has completed his cardiac PT and will be making the trip to our area in the desert very soon.  He is still dealing with his back pain and can’t get any treatment for it because of the stents he had put in.  He said that you have to wait a year after putting stents in before doing any back pain treatments.  He said he has about 7 more months to wait.

Article shared this meeting:

2025-02-03 Long COVID and Grapeseed Extract – Hedberg Institute – find this in Medicines folder

1/20/25

One member shared that he is still suffering with his side pain.  His doctor still thinks it has to do with his neuropathy and is waiting for his appointment with the Neurologist.  He called to get on the waiting list and his appointment got moved up to March so just a couple more months to wait. He said he tried a heating pad, but not cold pads, so he might try that.  He said it’s been rough, he may have a couple of good hours in the day.  He did say that his headaches are way better because of the Nurtec working so well.

One member shared that she increased from 2.0 to 4.0 mg of Naltrexone a couple days ago and thinks her brain fog is a little better. She said she hasn’t been struggling as much with words.  She shared that she got to see Wicked with her family and enjoyed it quite a bit. 

One member shared she’s doing the same, but overdid chores this weekend. She shared that sometimes she just wants to get stuff done and pushes through when she shouldn’t.

We discussed that there are times when we feel “normal” and will do stuff and then suffer later.  We over do it and then pay for it afterwards.  Depending on the severity of overdoing it, it can take days or weeks to recover. 

We discussed CBD gummies.  One person said she is up to taking two CBD gummies with CBN for 120 mg, for help sleeping, but it mostly helps with pain and sleep a little bit.  She takes it with Naltrexone as it supposedly works synergistically with Naltrexone.  She said the Naltrexone has helped with her brain fog unless she overdoes it.  She said the CBD-CBN she gets costs $70 for 30 gummies but waits for sales and coupons. She gets them from the Your CBD Store and it does have some THC in it, just a little and enough to help the body’s receptors to accept the CBD better. Another member said she gets 30 regular gummies for $12.99 in Oregon.  She said it’s organic and has something to do with metal bonding.  She said there is another one from WYLD CBD and each gummy is only 25 mg but the bottle is for 250 gummies and she only takes 25 mg.  She said it’s made from the whole plant.

One member takes Magnesium with her Naltrexone to help her sleep.  She said her Stanford doctor said the Magnesium could help her sleep better.  Another member said he has been taking it as well as his UCLA doctor suggested it for better sleep.  She said you can buy it on Amazon and suggests taking the capsule instead of the tablet as the tablet is really large and hard to swallow.  She said the doctor said it should come with Lysinate Glycinate Chelate  The brand she gets is Doctor’s Best High Absorption Magnesium Glycinate Lysinate, 100% Chelated, Non-GMO Vegan Gluten & Soy free, 105 mg per serving, 120 count.  She gets it on Amazon, it’s currently $15.99. One member said to be careful and to not take more than 200 mg.  If you take too much it can give you diarrhea. She’s had patients take like 800 mg and over and suffered with diarrhea.  One member said that you can buy this in a spray as well and spray it on your skin. Another member said he has been taking it for a while and thinks it helps, but it’s hard to say as he takes so many different drugs, but he still takes it. One member said she also got some gummies from a winery and were about $20 a bottle.

One member shared that she is taking baby aspirin at night and in the morning. She said she is back to using her CPAP with moisture now which seems to be helping. 

Another member shared she was feeling a little off today and has been a little dizzy.  She doesn’t know why but is doing okay otherwise. She said she is seeing her Infectious Disease doctor at the end of this month for her fungal infection as it will have been three months on just the oral medication.  He had wanted her to be treated with IV antibiotics for 2 to 3 weeks, but you have to have your heart and kidneys monitored and she cannot afford to take three weeks off from work.  She thinks the fungal infection is getting better as she can see that the fungus is not blocking her nostrils anymore.  She said the interval between her headaches have gotten a little longer in between. She said if she doesn’t catch her headaches right away, her Tylenol/Ibuprofen regimen won’t work right away and then she’ll have to lay down for like an hour before it kicks in. She said her sinus infection seems to have cleared up.  She said she’s worried that there might be more fungus spores in the apartment as she is only cleaning sections at a time and that is what could be causing her to have more fatigue, insomnia, and shortness of breath.  But with that said, she said she is definitely feeling better in regards to her shortness of breath. She said the fatigue is about the same as it was before the sinus infection, so it's still there.  Having a little bit of insomnia, but it’s not as bad.  Another member suggested that she could look into taking Nurtec as it has really helped him.  He said it is a migraine medicine and you can take it preventively and that it is the only thing that helps him.

We discussed taking flax seed and turmeric. A research study said to take one tablespoon of flax seeds, actual seeds per day. It may boost the immune system. One member said she takes kale and doesn’t drink any more juice and just eats fruits now and eats more seeds and grains.

Another member shared that he is almost done with cardio rehab and then he can pack and head to the desert. He said his daughter is still searching for a cardiac program he could participate in with his insurance in the desert.

One member shared that her back pain seems to get better when she sleeps better.  She said she takes one CBD gummy before sleep and another one when she wakes up and it helps to have better sleep. 

1/13/25

One member shared that the pain in his side has gotten worse in the last few days and the doctor doesn’t know what’s going on. For the last few months, it would come and go but in the last four nights, the pain has been bad all night. After the doctor discussed this with his neurologist, they think that it may be from his neuropathy and spreading to more parts of his body.  They think it could also be aggravated by Long COVID. His doctor put in a referral to see the neurologist and is hoping it won’t take long to get in.  Someone suggested to him to call them after the referral gets in and get on the waiting list for when they have cancellations as the wait can be for months and to call every so often to see if you can get in earlier.  We agreed we have to be our own advocates.

One member shared she has been having a harder time with her neck arthritis and not sure why. She said she’s been very religious about her neck exercises and has been getting massages, but is struggling with the pain. She currently has been using a heating pad for the neck and shoulders and that has helped some in the last couple weeks.  This brought up a discussion of using CBD gummies for pain and she said that she is already up to 2 gummies for pain, but doesn’t want to take anymore because of the cost.  It does seem to help with her other pain in other parts of her body, but the neck arthritis seems worse.  We also talked about Biofreeze and that helps too, also using Voltaren gel, but she doesn’t like to use it too often since it’s a NSAID and can cause kidney and liver issues, but will use it when the pain gets really bad.

One member shared that she got a sinus infection and started antibiotics on Saturday, so, she is starting to feel a bit better.  Before this sinus infection, she shared that she felt like she was doing better with her health considering she is still dealing with her fungal infection which messed up her breathing, but now with this sinus infection, she feels like she is backsliding. She has been a lot more short of breath lately and is not supposed to use her steroid nebulizer because of her fungal infection, but, may have to use it for a couple days, just to breathe better.  She shared that she uses a neck massager/heating thing and will send over information on it.  She said it really helps her.  She is also a physician and is always offering possible solutions to all our medical issues and that she really listens and is such a wonderful and caring person and we feel so bad that she deals with all the medical issues she has on top of Long COVID. We discussed how we are all going through so many medical issues and that it's wonderful how we can meet and commiserate with each other.

One member shared that she returned to work today after being off for three weeks and dealt with a massive amount of emails and work to catch up on. She said she is still at the 2.0 mg of Naltrexone and plans to move to 4.0 mg as it hasn’t helped her like when she was at 6.0 mg.  She has not started the low dose Abilify yet and is still researching it.  We discussed that the Abilify supposedly helps with the fatigue and the Naltrexone helps more with the brain fog.  She said the doctor said if she gets to 6.0 mg and wants to try the 8.0 mg, that she will need to ask him.  She said her doctor said it should be safe to take Naltrexone and Abilify at the same time.

One member said that usually Mondays are her good day as Saturday and Sundays are really bad days after her chemo on Thursdays.  She said that she doesn’t feel much pain lately because she has to take steroids which are part of her weekly pre-chemo package of meds. So, she’s enjoying less pain right now, but is paying a high price with the chemo.  She is wondering once the whole chemo process is over, if her pain will return.  She shared that when she can, she walks but can get really wiped out and doesn’t know if it’s from the chemo or the Long COVID!  She shared that she tells people that having long COVID was like training for the side effects from chemo because she has already been through the whole fatigue thing and having new limitations.  She thinks if she didn’t have Long COVID, the side effects from chemo would have been an absolute shock of how she feels so useless. We said that is such a wise observation and attitude!  She said she has a total of 6 months of chemo because it's triple negative cancer which is harder to treat.  She said that she had her first injections due to her white blood cell count being low and is now not supposed to eat any raw fruits or vegetables.

One member shared that she had a terrible cold last week and probably thinks it was from the babies she takes care of at church so has stopped providing baby care during church services. 

Another member shared he’s been doing good and has a couple more weeks left of cardiac PT and has purchased his plane tickets to come to the Valley.  He discovered that he won’t be able to do any cardiac PT at Eisenhower as he has an HMO and would need a PPO to be able to go to Eisenhower.  He may have to sign up at a gym after all, but his daughter is talking to some of her doctor friends hoping they may be able to find some kind of program for him here.  He said he enjoys cardiac PT being around others who are in the same situation.  The only Long COVID thing he is still dealing with is his loss of taste and it still hasn’t come back yet.

One member shared she is having a hard day because she interviewed for a part-time job taking care of a woman with dementia as she really needs a job.  She interviewed and visited her and it seems ideal, so she spent time with her on Friday and then met the son on Saturday and he wanted to hire her.  Then on Sunday she had some activities and today, Monday, she could barely get out of bed.  The job is supposed to be four mornings a week in a row. It seemed ideal because the time was only 10:00 to 2:00 and she usually takes a nap at 2:00 so it seemed perfect.  And the lady with dementia is only half a mile from her house and has a really sweet disposition.  She is wondering if she won’t be able to do the job after getting wiped out this past weekend.  She said she wasn't able to leave the house today.  She said the job wouldn’t start till the middle of February so she will have to decide what to do.

We had a discussion on taking NAC (N-acetylcysteine) and Guanfacine for brain fog.  No one in our group uses it, but it does come up in articles.  One member uses Modafinil to keep her from getting sleepy.

We discussed how pacing is important and if you want to try exercising and do other activities, you have to remember pacing and reduce one or more activities to avoid overdoing it. Some members shared that if they over do it, they feel it right away and sometimes they feel okay doing something and then crash a day or two later as they overdid it. 

We also discussed not sleeping well and using CBD for help.  Another member said she used the CPAP for a few days, it helped and then it doesn’t anymore and still wakes up with a headache and doesn’t feel rested.

Articles shared this meeting:

2025-01-13 COVID adverse effect on kidneys – find this in the Kidneys folder

2025-01-13 Rise of Superfungi – find this in the Fungal Infections folder

2025-01-13 State by State variations – find this in the Statistics folder

1/6/25

One member shared that he is on schedule to complete his cardiac PT the end of this month and is working on continuing a cardio rehab program at Eisenhower when they come to visit the desert in February for a while.  He said he was told that he would be able to get a preferred status at Eisenhower and will be working on all the details later this month.  He also said the pulmonologist gave him the official word to stop using the oxygen bottles and they are picking the machine and bottles up for good!  He said he is feeling a little bit better each day.  He said his blood pressure has been good. He still is dealing with the pain in his back and leg, but it’s the least of his worries right now.  He said he is officially retiring on January 15th.

Another member shared she is back on Naltrexone at 2 mg.  Her doctor said to try it a dose lower than 6.0 mg in the event 2.0 mg or a lower dose is enough since she now knows what 6.0 mg did for her before.

Another member said she was doing great but has a new medical situation she is dealing with.  She is having pain in her right hip and has to use a walker all the time. She said the doctor did some tests and at the end of this week, she will have her appointment to find out what's wrong and is hoping she won’t need another surgery. She also said that the day after tomorrow will be her one hundredth day of losing her memory.  She said some of it is coming back. 

Another member said she got a diagnosis for her back pain called Iliac spondylitis and the doctor will treat it with a shot directly into her sacroiliac nerve.  She is waiting for her appointment to be scheduled. They will inject the nerve where the sacrum and iliac (pelvis) join.  She said that Dr Cassim’s P.A. actually diagnosed it. She said when she went back to her physical therapy and told them of this latest diagnosis, they adjusted her exercises specifically to this new diagnosis and has already seen improvement.  She said the Modafinil has kicked in and has helped to keep her more awake and feels like she is thinking better.  The group noticed that she was grasping for words much less than normal and she was happy to hear that.

Another member shared that a couple of weeks ago she saw her PA and was sent to the ER. The PA was surprised that no one ever suggested her getting an echo cardiogram as her blood pressure was up to 154/94.  She had the test and got the results saying that everything was fine, no abnormalities but they put her on statins, then on beta blockers which aggravated her vertigo and nausea to an extreme. She said she kept taking the blood thinner. She will see the PA on Friday to follow up. She also shared that she does regenerative yoga and has helped her to feel more relaxed. 

One member shared how much pain he is enduring.  He said he was diagnosed with Sjogren’s syndrome about three years ago and took medicine for it back then, but now all of a sudden, it seems to be back in full force. He is having severe dry mouth and dry eyes that also sting and hurt.  This is on top of his neuropathy pain, stomach pain, and side pain.  The doctor looked at his eyes and said they could put tear ducts in his eyes but is not sold on doing it at this time. Someone suggested wearing steam masks over his eyes and he said he may have to start doing that again.  The group discussed that if you have cataract surgery, it can cause dry eyes too. 

One member talked about using a CPAP machine for sleep apnea. Apparently, there is a pill now that one can take for sleep apnea. Someone else said that losing weight also helps with sleep apnea.  Another member said he has been using a CPAP machine for years as he stopped breathing while sleeping so it helps with that, but he doesn’t feel more rested when he wakes up in the morning. 

One member shared she went out to lunch on Saturday and is still recovering from her outing, but did have a good time with her friend.  She said her work schedule will be reduced in February and is looking forward to that.

One member said he did make it to the Film Festival on Saturday.  He said he did suffered for it on Sunday, but really enjoyed the films and Q&A sessions.

A member shared she has had two bad colds from Church where she takes care of babies while their parents attend the church service.  She said she often needs to hold the babies in her arms or lap. She said she really enjoys this but can’t afford to keep getting sick from them.  She said these frequent colds are interrupting her sleep too much.  She said she tried wearing face masks, but the babies kept pulling them off. 

Article shared this meeting:

2024-01-06 COVID adverse effect on kidneys – find this in the Kidneys folder

12/30/24

One member shared how her chemotherapy for her breast cancer is going.  She said Mondays are kind of her day to crawl back out from the weekly chemo effects. She is happy to have this week off from a chemo treatment.  She gets her chemo on Thursdays and her bad days end up being Saturday and Sunday.  She said it's like having a bad flu every Saturday and has to take a lot of anti-nausea medication.  She noticed she doesn’t have much stamina on Mondays and Tuesdays.  She said her chemo infusions are scheduled through the end of April and has had six infusions in the last two months. She said the effects seem to have been cumulative. She said she will get a month off after the chemo infusions are done and then they will do radiation for a month. She said they are giving her an aggressive treatment since she has an aggressive cancer and to make sure it doesn’t come back.  She said radiation supposedly feels like you have a bad sunburn and will make you really tired. But she doesn’t really know where her being tired is really coming from, probably both the chemo and Long COVID!

One member shared that he is not feeling the greatest. He said he’s just tired of having so much pain which drains his energy. Things are a bit better after he stopped using the insulin pump and returned to using injections.  It’s a little harder to keep his blood sugar level at its optimum, but it’s way easier than managing the insulin pump.  He said his neuropathy pain is now in his bladder besides his legs and feet and he doesn’t know why he is having pain in his stomach and side. He is still waiting to see the neurologist. He’s had a stomachache for two months and the doctor has no diagnosis yet. He also has some kind of side pain when he sleeps on his left side for which he had a CAT and PT scan and they didn’t find anything and are saying it’s the neuropathy. He said he has tried every drug out there with no success in pain relief. He said he has an implant which sends electricity through his legs and feet, but the pain seems to be spreading to the rest of his body.  He said one of his stimulators broke, but to take it out and replace it requires surgery which would be near his spine and he doesn’t feel up to going through all that.   He said when he has a bad day, he’s just down and when he can get up and get dressed and shower, he wants to do something even if it’s going to the grocery store, He said he wants to get back into his photography as he enjoys it and helps to give him hope.

One member said she is feeling somewhat better than a year ago during this time. She said she had much more pain and couldn't get out of bed back then. She wasn’t able to feed herself, could barely walk, wasn’t hungry, eyes and ears always running. Her pulmonologist put her on a CPAP, not because he said there was anything wrong with her lungs, but because she wasn't sleeping through the night. She said they gave her a CPAP in the office and within minutes, she was able to breathe fully for the first time in two years.  Another member explained that a CPAP is a continuous positive pressure machine. It delivers positive pressure to keep your airway open.

One member shared that she decided to reduce her work hours to make her days more manageable.  She is tired of struggling every day and is hoping working less will make each day a little bit easier to get through. 

One member shared she saw her Neurologist and he increased her Modafinal which helps to keep her awake and be more alert.

One member shared how his cardiac PT is going.  He said his next one is tomorrow and they have been slowly increasing the difficulty and time and it gets a little bit more strenuous each time. He said next week, he sees his pulmonologist and is hoping he can get off the oxygen bottles. He said he still isn’t anywhere near the stamina that he used to have. He said he still has back pain, but he can’t get a pain shot for about a year as he would have to lay on his stomach and he can’t do that after having put stents in per the doctor. The only good thing about his heart attack was that he lost almost 20 pounds which he needed to do.  He said he still hasn’t gotten his taste back since getting COVID years ago.

We discussed how hard it can be when seeing a doctor and to keep them on track and make time to get all your questions answered.  One member said when she was diagnosed with breast cancer and was prescribed a host of drugs, she asked her neurologist if there would be any issues taking these drugs with her Long COVID and he said to do exactly what the oncologist said to do.

One member shared that she read an article that Valley fever is going around and is on the rise. It can be in the dust in the air.  It’s a big problem in Bakersfield because of the Indian burial grounds. The article recommended that people who have any kind of asthma or any kind of issues with breathing, that they don’t go out when the dust is bad and when the wind is bad and to wear face masks all the time when they're outside because it affects one’s breathing. Apparently, it is a fungus which is causing Valley fever.  It can be common among construction workers who are digging, it’s also in Arizona. So, we have to be careful here in our desert climate.

No articles shared this meeting.

12/23/24

One member said she saw her doctor and did some tests and was put on Metoprolol, a beta blocker, but it made her more tired and so stopped taking it.  She said since she doesn’t have high blood pressure or arrythmia, she felt okay to stop taking it.  Another member mentioned her Cardiologist put her on Metoprolol due to having too many heartbeats and is taking 25 mg daily and didn’t notice any side effects.

One member shared that she seems worse and is grasping for words more and her symptoms just seem worse but recently started taking Naltrexone and Modafinil again and is hoping it kicks in soon as it seemed to help before.

We talked about one member’s doctor at Stanford saying that they are prescribing up to 8.0 mg now for Low Dose Naltrexone and you don’t have to do titrate it anymore if you were on it before and had no side effects.

We discussed taking CBD, one member said she takes a CBD gummy a day.  Another member said she takes 2 gummies (total 120 mg) of CBD-CBN for pain and help to sleep better.  It seems to have helped her sleep 3 hours instead of just 2 hours straight.  She would love to be able to sleep for more hours straight. She also mentioned that she read an article where if you take Low Dose Naltrexone and CBD they can work synergistically together to ease Long COVID symptoms.

We had a discussion on using sleep aides, such as Trazodone, Melatonin, and Benadryl.  Someone tried taking all 3 at different times as each would work only for about a week and then would cycle through the next one.

One member shared how she wished someone would invent a shower where you just walk in and it just shoots some kind of beams or lasers or something that sucks all the dirt and perspiration off so she wouldn't have to exert any energy in the shower. It'd be so great to walk in a shower booth where it zaps you and poof you're clean. We also discussed the use of shower chairs and bars to use.

One member also shared that she thought about blending her food so she wouldn’t have to chew using more energy, but it just wouldn’t taste the same. 

One member shared how she feels she gets out of balance more and seems to be way more clumsy and drops things more.  Other members agreed that they notice this too.

We discussed how easy it is to get distracted now while doing a task, then get distracted and moving to another task, and then on to the next without getting anything done.  Focusing and concentration is harder now.  One member shared that it helps to live in the moment and be in the moment 100%.  For example, if you are putting your car keys away, you look and tell yourself that you are putting your keys away in the key place.

One member shared that she is still enduring her fungal infection and how hard it has been to deal with it as it constantly keeps showing up in her home no matter how much she cleans.  She said it’s everywhere in her house and around her home.  She’s even had to throw away clothing that she can’t get the fungus out of regardless of how many times she washed them.  The fungus gives her sores and makes it harder to breathe.  It’s overwhelming and frustrating as she cleans and then by going outside, more of it gets in the house.  We discussed moving or having the landlord do a thorough cleaning, but she would have to vacate for at least 30 days and where would she go and how would she pay for it.  One member suggested that apartment landlords are required to remove hazardous items such as mold and through this process, may have to pay for her temporary housing until it’s cleaned.

Articles shared this meeting – find all of these in the Research & Studies folder

2024-12-23 Long COVID affects 8.4% of U.S. adults

2024-12-23 Studies-COVID vaccine protect against long COVID

2024-12-23 About 8% in U.S. has Long COVID

2023-12-23 Study details mechanisms underlying severe COVID

2024-12-23 Variations in Long COVID by U.S. State

12/16/24

One of our members saw her doctor at Stanford about her Long COVID and had a very fruitful and informative appointment with him.  She shared what they discussed. They discussed the following:

1.    PEM – Post exertional malaise – he confirmed that yes, we have limited energy and can only do so much exercising and or living daily life.  He said to try and learn the signs you get before overdoing it so you can stop before overdoing it and take the time to stop and take a break in a calm environment.

2.    He said she can go back on LDN (Low Dose Naltrexone) at the 6 mg level.  He said no slow step up needs to happen since she has already been on 6 mg before.  He said they only recommend a slow start up in dosage to make sure a person won’t get side effects so once you get to 6 mg and do fine, it’s okay to go back at that level if you had to stop for some reason.  He also said that they have been prescribing up to 8.0 mg now.

3.    He also suggested taking low dose Abilify.  It is an anti-psychotic and theory is that it helps increase serotonin in the body.  There was supposedly a big study done showing that it improved brain fog and fatigue for Long COVID patients. The doctor said it seems to help more with brain fog.  Low dose Abilify is taken as a liquid in a very low dose.

4.    He also suggested taking Ketotifen, an asthma/allergy medication – it may help reduce inflammation as it decreases cytokines.

We discussed different medications being used by Long COVID patients and Ozempic is one that some people are using.  We also discussed improving our gut biomes by eating fermented foods like kimchee, kombucha, kefir, sauerkraut, probiotic yogurt, tempeh, and tofu.  One person talked about trying Singular for her Long COVID symptoms but it didn’t do anything for her.

One member shared she had to go to the ER and the doctor said she has AFib and should take a statin and baby aspirin.  She said she doesn’t have heart symptoms and is unsure of whether she should really take heart meds.  She said she did have elevated blood pressure. She also expressed frustration in some family members not understanding what Long COVID is and one member’s family members said she had COVID 5 times and is fine and doesn’t believe in Long COVID.  We understood her frustration that there are people who still don’t believe in Long COVID.

One member said she wasn’t able to get the ablation for her back pain as the test she took beforehand indicated that it probably wouldn’t work.  They do a test with anesthesia to see if pain is still felt and she still felt the pain so they told her the ablation probably wouldn’t work.

One member shared a study she found out about for PEM (Post exertional malaise) being done by Duke University in 38 locations and are recruiting now.  The closest California city to most of us in the group is Torrance, California.  This study can be found at:  https://clinicaltrials.gov/study/NCT06404047

Articles shared this meeting:

2024-12-16 BCG Vaccine May Protect Against Long COVID Symptoms – find this in the folder – Medicines\BCG Vaccine

2024-12-16 One third teens with Long COVID not recovered after 2 years – find this in the Research & Studies folder

2024-12-16 The Push for Off-label Rx for Long COVID – find this in the main Medicines folder

12/9/24

One member who had a heart attack is happy to report he is finally off the oxygen tanks!  He is also feeling good about his cardiac PT.  He hasn’t seen the doctor yet about the spots in his lungs, but the doctor did speculate that it is probably from when he had COVID.

Another member said when she got COVID it, really got in her lungs and there were a lot of spots on her lungs and as time passed, the spots went away.  She has been having check ups every 6 months of her lungs.

Another member shared that using the pump for his insulin has been hard to adjust too. Today, he had really bad low sugar with the pump saying “user error.”  He is trying to give using the pump some time, but may talk to the doctor about getting his insulin a different way.  We all noticed that he did seem much more stable with his blood sugar before he started using the pump.

One member said she is doing okay and has her next doctor follow up on her shoulder surgery and will probably get the go ahead to return to work.  With that said she is planning on officially retiring soon and is looking forward to that.

One member shared that she struggled with calls from a couple of her cousins who had no clue about how Long COVID affected her daily life and weren’t very nice to her not understanding her new limitations.  It takes a lot to explain to people how living our daily lives have changed and how they just don’t get it.  Other members shared that lots of family and friends have a hard time understanding and don’t believe in our struggles. We discussed how frustrating that is.

One member is still dealing with her back pain and has an appointment this week to get a nerve block where it will kill the nerve endings thus easing the pain she is feeling.  We asked if it was a permanent solution, but apparently, the nerves will eventually get feeling again and it just depends on the person.  Another member said he had it done for his back and has had relief for quite awhile so far.

The member getting a nerve block has been suffering from more fatigue lately and is considering using the nicotine patches to see if it helps.  No one in the group has tried it yet.  There are a few cases where people with Long COVID have used the nicotine patches and it has eased their symptoms.  We also discussed that some people use Paxlovid, caffeine, monoclonal antibodies-but this cost at least $15,000.00.

One member said she uses Modafinal 200 mg a day and it helps with her fatigue along with Low Dose Naltrexone 6 mg.

 No articles shared this meeting.

12/2/24

A member shared with the group a video on COVID Clots that talked about how doctors are discovering around the world that when doing autopsies on people who had COVID that they are finding very large whitish and very thick and long clots that they are pulling out of people’s brains.  This is just being found and doctors aren’t sure what this means yet and are alarmed on the size and thickness of these clots as they haven’t seen anything like this before.

One member shared that sometimes her head feels like it might be swollen now and then as her glasses will feel tighter.  Another member said she would feel that too once in awhile and will get a sensitive stop over her right ear and it comes and goes too.

We discussed how COVID is affecting many organs in the body.  The member who had a heart attack recently said that he used to be out of breath before COVID, but does wonder now if getting COVID exacerbated any mild heart issues he may have had.

One member shared that she finally had an x-ray of her right hip for her hip pain and is waiting on the results.  Otherwise, she is doing okay.  She noticed certain activities will interfere with her sleep while others don’t bother her sleep.

One member shared that she is still dealing with her fungal infection.  In order to rid her house of the fungus, she used bleach and then later found out that fungus likes bleach!  She also learned that while cleaning, she now has to wear a mask so that she doesn’t breathe in more fungus. Fungus is proving very difficult to kill and get rid of. She has been having a very challenging time especially with her long covid symptoms.

One member also shared some research she did on frequent urination and found some articles that there are people with Long COVID who are now having frequent urination issues – overactive bladder and interstitial cystitis which can be treated with Elmiron 100 mg twice a day.

One member shared that she has been diagnosed with left thalamus damage and was told to take a statin but statins can cause dizziness, nausea, balance and speech issues.  We discussed statins and it’s side effects and someone shared that there is a drug called Gemfribrozil, but it is not a statin.

One member shared that he has been doing his cardiac PT and is slowly weaning off his oxygen and is down to half a liter.  He is still waiting on the Pulmonologist about his lung concerns.

Articles shared this meeting:

2024-12-02 Heightened risk of autoimmune disease after COVID - Find this in Doctor guides folder

2024-12-02 COVID Risk for Autoimmune Autoinflammatory disease - Find this in Doctor guides folder

2024-12-02 Younger Patients More Neurologic Manifestations of Long COVID - Find this in Brain folder

11/25/24

One member shared that he is still waiting to hear from the Pulmonologist, been hard to get a hold of and his next Cardiologist appointment is not till May.  He did start his cardiac PT last week and will be doing that for a couple months.

Another member shared she is doing okay, but more fatigued than normal, feeling like she is coming down with something as she can feel fluid moving around in her sinuses .

One member shared she has new pain in her thigh and is getting an x-ray to find out what’s going on.  She also shared that she read a book where a patient who got COVID was dying and the doctors weren’t able to do any thing more for him and they asked for prayers and he was healed!

One member shared that she had another UTI, her fourth since May of this year and has been having trouble getting a hold of her Urologist. Another member who has been getting recurrent UTI’s too shared that she also got another UTI and went back on the daily low dose antibiotic, called Cefaclor.

One member said she now has a pulmonary condition as well. She said the doctor also confirmed that she did have a stroke in the summer.

One member’s neuropathy pain has worsened and may have affected his bladder. He said he went to the bathroom 22 times in one day.  He has an appointment with a Urologist, but has to wait till March.

We had a discussion on wondering if COVID is just messing up all our organs one by one.  One member shared that she got diabetes only after getting COVID and that diabetes can make a person more susceptible to UTI’s.

One member shared that she tried taking NAC 90 mg for awhile to help with Long COVID.  NAC is N-acetylcysteine.  We hadn’t heard of this yet.  But she stopped taking it and doesn’t remember if it helped.  She said she will research and send us an article on it.

No articles share this meeting.

11/18/24

One member shared her continued struggle with her fungus infection on top of her Long Covid.  She is on an oral anti-fungal medication and said that the symptoms she is experiencing is very similar to Long Covid, so she is not really sure what is causing her symptoms.  Her doctor told her that due to her compromised immune system, she probably got it from where she lived and discovered that the plants around her home have the fungus that she caught.  She has been thinking of taking Naltrexone but thought 4.5 mg was the max, but we all shared with her that most of us are taking 6.0 mg.  We also shared with her that due to Naltrexone being expensive, one member found a place where it was less expensive: Care First Specialty Pharmacy, 844-822-7379, www.ctspharmacy.pharmacy

One member shared her first chemo infusion has left her feeling really out of sorts and suffering some side effects.  She said her head feels like it’s full of cotton.  She is feeling low and trying to steel herself as she has 18 weeks of weekly infusions to do.

One member is having to remind herself to pace as it’s so easy to feel better then over do it and crash.  She said her memory seems to be better and is using her walker so she won’t fall due to her osteoporosis.  She is continuing to work on puzzles.  She said she is getting less headaches.  She is still having problems with forming words she used to know.  She said her brain scan showed some areas where she has lost her memories and in those areas, she has to make new memories like re-learning people’s names that she knows.

Another member said she is feeling better than the last few weeks.  She is still dealing with personnel issues at work but management is supportive and she can work from home when she needs to.

One member shared that the Pulmonologist cleared her as the haven’t found anything wrong from all the tests they took.  They didn’t have an explanation for her getting out of breath easily.  She was disappointed in the doctor telling her that she had to keep exercising and to keep increasing it. We discussed how some doctors still don’t understand exercise intolerance and PEM (post-exertional malaise) for those with Long COVID.

One member shared she is planning for a trip and is worried about travelling.  Another member said she used a nasal guard at the airport and airplane on her last trip.  We discussed using this.  It’s a product that coats the inside of the nasal passages and provides a barrier to viruses, contaminated air, mold/pollen, pet dander/dust mites.  Apparently, it will kill any viruses that get in.  The brand she bought was Nasal Guard-Airborne Particle Blocker found on Amazon.

Article shared:

2024-11-18 One in 5 People Could Have Long COVID – find this in the Research Studies folder

11/11/24

I missed some of the meeting and wasn’t able to take notes as usual. Members shared how they were feeling and dealing with Long COVID and all their ailments day to day.

Video shared this meeting - This video is about someone who took serotonin and how it helped improve his Long COVID symptoms. Find this in the “ARTICLES” section of this website - link is called “Video on how Serotonin helped someone with Long COVID.”

11/04/24

One member shared that he just returned Saturday from a 10 day trip and is quite exhausted and may have a little cold.  He said this trip seemed to be more tiring than others.

One member shared that she seems to be doing better and is not grabbing for words, has been doing puzzles and will continue to do them.

One member shared that he is feeling better from his heart issues and will be getting the plan soon for his cardiac PT and will be having pulmonologist testing and seeing the doctor about the unknown spots they found in his lungs.

A new member joined and has had Long Covid since July 2022 and shared her symptoms:  daily headaches, insomnia, fatigue, shortness of breath, cough, chest pain, diarrhea, memory issues, vision change-harder to see up close now.  One member shared that he uses Nurtec for his daily headaches and can be taken preventively every other day and works well for him.  She said that Excedrin has been working for her but has to take it as soon as it starts or it doesn’t work as well. She said she also uses a cold cap on her head and it helps with the headaches. She also said she got a plant fungus infection that people don’t normally get but those with compromised immune systems can get more easily.  She thinks it may have infected her eye as well.

One member shared she is feeling better and having some doctor appointments and tests.

One member shared that she will be starting her chemo next week for her breast cancer.  She shared that she does have an aggressive form of cancer, but they did catch it early and is hopeful that the chemo and radiation will take care of it.  She mentioned that they prescribed a bunch of nausea medication and she is hoping she won’t need it!

One member shared that she is feeling better as her employer is now allowing her to work from home as needed.  This has helped her a lot in reducing the stress, strain and fatigue.

Articles shared:

2024-11-04 Blood test for Alzheimers disease -  PrecivityAD2 – find this in the Research & Studies folder

2024-11-04 Long COVID-Signs of Persistent SARS-CoV-2 Proteins – find this in the Brain folder

10/28/24

No notes for this meeting.

Article shared this meeting:

2024-10-28 Metformin May Reduce Long COVID - find this in the Mediciine folder

10/21/24

Our member who had a lumpectomy and has breast cancer was able to join this week and said her recovery is coming along and found out that she does have an aggressive form of cancer, but it was caught very early.  She may have to do chemo and radiation, but will find out more this week when she see’s the oncologist.

One member said he is getting used to having his new insulin pump.  He said it regulates his blood sugar really well, but is still adjusting to using it and having to maintain it.

One member said she spoke with her supervisor about their work stress and has been able to work from home and is starting to feel better but is still feeling crashed from all the stress.

One member said she had  CT scan of her chest and has been seeing a chiropractor and it has helped her.

One member suggested using a Grounding Mat.  These mats simulate walking barefoot on the ground creating an electrical connection between your body and the earth.  This is supposed to help with inflammation and boost your immune system.

Article shared this meeting:

2024-10-21 Low dose Naltrexone & Pyridostigmine for Long COVID – find this in Research & Studies folder

10/14/24

One member said the acupuncture for her back pain does seem to be helping.  She was able to spread out her pain meds to every 4 days instead of 2 days!  She also shared she is taking Modafinal for her brain fog and sleepiness and it seems to help her.

We discussed pacing and making it a part of our lives.  One member explained that when she plans to have lunch with a friend on a Saturday, she has to move her towels laundry from Saturday to Friday morning so that she can have all her energy dedicated to going out to lunch and talking and having the afternoon to nap to rest from the brain fog getting worse from socializing.  You have to plan for your effort and recovery afterwards when possible.

One member is still on blood thinners as the doctors haven’t been able to help with her DVT leg swelling. She said the swelling is still really bad and any pressure causes extreme pain. She can’t even wear compression clothing as it causes more pain.

We got an update on the member who had a lumpectomy last week and the surgery went well and is waiting on her biopsy results.  We also got an update on the member who had congestive heart failure and he is coming along with his recovery.  He has started PT and is still on oxygen and has tests and doctor follow ups to deal with.

One member talked about her work stress and how it has exacerbated her fatigue and brain fog.  She said it’s the same effect as if she over did exercising.  She was somewhat surprised how much work/mental stress can affect her energy and brain fog the same as over doing physical activity.  Other members agreed that mental stress can be just as bad as overdoing it physically.

We had a discussion that we are dealing with not being the same person we used to be before COVID and how we have to adjust our new normal and grieve our old selves.

One member shared that she took a pulmonary bronchial challenge/asthma test and how exhausting it was.  It wiped her out, made her lightheaded and dizzy and had to sit for awhile to recover and when leaving was so wiped out, she walked her car really slow feeling like she was a 100 years old.

Articles shared this meeting:

2024-10-14 Brain imaging reveals changes linked to long COVID - find this in the Brain folder

2024-10-14 MRI Reveals Significant Brain Abnormalities Post-COVID - find this in the Brain folder

2024-10-14 Vague symptoms in Long COVID - find this in the Frustration folder

10/7/24

One member said she was feeling better from her latest bout with COVID.  She took Paxlovid and interestingly, she said it seemed to have helped with her neuropathy pain.

A member mentioned that there is now a special MRI that can detect changes in the brain from COVID.

One member said she attended an infectious disease conference and one of the topics was the remnants from COVID were being store in body fat and that the body needs selenium, vitamin C, D, and E.

One member said he took the flu vaccine and it gave him the hiccups.

One member shared her follow up visit with her neurologist.  He said can now stay on Naltrexone long term as long as there are no side effects and blood work is normal.  He said just needs to keep doing follow up visits to monitor. He also suggested to not take the COVID vaccine.  He said not to use Creatine powder as it is bad for kidneys.  He said that serotonin to help with Long COVID is not the way to go now, Naltrexone is still the best.  He said no to increasing Naltrexone higher than 6.0 mg.

One member shared she read an article in Reader’s Digest about beef bone broth helping with the immune system and improving leaky gut and digestive issues.

One member said she is still trying to get a test about her blackout/loss of time.

Article shared this meeting:

2024-10-07 Paxlovid and vitamins for Long COVID – find this in the Medicines folder

9/30/24

A member shared that she got COVID for the third time.  She said this one is as bad as the first time.  The second time was minor.  She said all her Long COVID symptoms are worse and her neuropathy is especially bad, her feet are numb.

Another member said she is doing okay, has been swimming which she enjoys.  She said that she is dealing better with having Long COVID and trying to be grateful more often for the things she does have and can do.

One member shared that the post office is sending out free COVID tests again if you go to their website.  They are sending out free 4 tests per address.

That brought up the discussion that people 70 years old and up don’t have to take the DMV written test anymore in California when they renew their driver’s license. With that said, someone said that now, if you are over 75 years old, you don’t have to take off your shoes when going through security at the airport.

Some members suffer from chronic back pain and neuropathy which is exacerbated from Long COVID and the subject of using wheelchairs when travelling was discussed as it often gets you to the front of the line and there is less chance of other people running into you and knocking you over.

One member suffering from severe back pain said the acupuncture is still working and she can go every other day without pain meds and is hoping she can not have to take pain meds two days in a row.

We discussed vaccines again and the fear of taking the COVID vaccine due to one member’s severe reaction to it.  He suffered for 3 weeks and we don’t know if that is worse than the risk of getting severe COVID.

No articles shared this meeting.

9/23/24

A member shared that she was diagnosed with breast cancer, but the doctor hasn’t been able to identify the type yet as the tumor is too small and they won’t be able to identify it until they do the lumpectomy early October.  Due to its’ small size, they are hopeful that it got caught very early.

One member said that she still has her DVT back from her trip a couple months ago and is still on blood thinners. Her doctor does not know why she is still having severe pain and swelling in her legs.  She said the pain goes up from her calf up to her belly button.  She said compression socks don’t work for her as any pressure on her legs causes extreme pain. Her next step is to and see a Hematologist.  She also found a lump in her left breast.  All her pain, swelling, and issues are on the left side of her body.

Dr Vines volunteers for a program called Street Medicine and supports needs for the homeless. She said if anyone wants to donate used clothing, suitcases, bags, bathroom supplies, etc. she is happy to take them for this program. Just contact her to let her know if you donations.

One member said her brain fog got worse when trying to take the Wellbutrin. But due to multiple side effects, is weaning off them.

One member said her acupuncture visits seem to be helping with her back pain.  She can go without pain meds more often.

No articles shared this meeting.

9/16/24

We had a new member who has had Long COVID since Oct 2022.  She already had neuropathy and fibromyalgia and Long COVID has exacerbated her symptoms along with extreme fatigue, memory loss, and no appetite.  Her neuropathy pain has since moved up from just her feet up to her knees due to Long COVID.

We had a discussion about diabetes. If you are age 70 years or more, the normal AC1 is now 7.0 to 7.5.  For those under 70 years, 6.0 is considered a healthy range and 6.5 or higher is considered diabetes.  If you are diabetic, glucose is considered necessary to keep your brain healthy.

One member shared that she was diagnosed with breast cancer that was found on her annual mammogram – she said make sure you get them annually!  They caught it very early and won’t be able to identify it until she has her lumpectomy early October.  The doctors think that she may not need chemo or radiation but won’t know until they do a biopsy.  This has made her fatigue worse, but could be due to worrying as well.

One member shared that she is experiencing her GI issues again from Long COVID.  It seems to come and go.

The member who had congestive heart failure will be having a couple more stents put in soon.

One of the members is still waiting to be able to go back on Naltrexone and hasn’t been able to have any doctors prescribe it for her.  She is having to wait till December when she will finally get to see her primary doctor.

The only member who has taken the COVID vaccine so far is still slowly recovering after a couple weeks.  He suffered from a 24/7 headache and stomach issues, and exacerbation of his neuropathy pain.  The rest of us are wary of taking it and may not take it.  One member took the regular flu vaccine and suffered for 4 days with worse fatigue and brain fog and couldn’t function.

Traveling came up and that we should wear masks and someone mentioned that there is a nasal sanitizer called Nozin that helps keep germs out.  People are using it when they travel on airplanes.

One member said she is learning Spanish and it seems to make her brain feel clearer and is enjoying it.  Another member said she is learning French and we discussed that this was another activity that seems to help with brain fog.

No articles shared this meeting.

9/9/24

One member said he took the COVID vaccine last Tuesday and as of today a week later, has been suffering a constant 24/7 headache and stomach ache.  The pain has not let up and taking his Nurtec migraine medicine is not working, nothing is working.  He also said it has exacerbated all his long covid symptoms and his neuropathy pain.

Another member commented that when she only took the regular flu vaccine and it took her down for 4 days and exacerbated her already low energy and brain fog.

One member was unable to join as she had to see the doctor as they found something suspicious in her mammogram.

Another member is still out as he is in the hospital for congestive heart failure.

A member who has been having severe back fine had her first appointment with the Acupuncturist yesterday and actually noticed some pain relief after the first treatment.  She is hopeful that this will eventually give her complete pain relief.

We had a discussion about the brain needing glucose which may help brain fog.  There was some debate that you don’t want to increase your glucose too much either.

One member got COVID again and had another black-out. She said she is feeling better than last week, but is still experiencing too many long covid symptoms.

One member talked about getting out of breath easily when taking her laundry out of the dryer and then carrying it to another room.  So frustrating, another member agreed as she is the same way.  She wants to get back on Naltrexone after being on that 10 week fasting study, but due to insurance changes, her doctor won’t prescribe it until he sees her in December, the earlier appointment she could get.  We talked about how hard it is to find doctors and difficulties with health insurance.

One member mentioned GLP-1 being used to help with Long Covid brain fog.  It has been suggested that microdosing of this med can improve brain fog.  This med is normally used for weight loss.

One member reported she finally doesn’t have to see her cardiologist for another year and doesn’t have to take any more tests and follow up visits. The cardiologist couldn’t find anything wrong other than her sinus tachycardia for which she is taking Metoprol.  She also mentioned she had lunch with a friend this past Saturday and had a good time, but got wiped out and had to recover and struggle through Monday.

One member said she got cleared by her Pulmonologist.

Article shared this meeting:

2024-09-09 Long COVID in Children and Adolescents – find this in the Research & Studies folder

9/2/24

One member shared how she seems to be better and not suffering from any Long COVID symptoms anymore and said thank you to the group for all their support. She did report she also got COVID again for the 3rd time, but so far so good.

One member wasn’t able to join us as he had congestive heart failure and is in the hospital. We are all wishing him the best and hopes for a speedy recovery.

One member said it’s taken about 3 weeks to recover from his NY trip.  He also got his COVID vaccine and so far so good.  Another member said she got the regular flu shot and it wiped her out and has been extra tired for 4 days now.

One member said all her Long COVID symptoms are really bad right now and is not able to do much of anything.  She said all her symptoms have flared up and got some new ones.  She said she is in a lot of pain and feeling depressed.  She reported she is having a hard time with her doctors and there is no continuity with her doctors and no one really caring about Long COVID.

Another member shared that she is feeling good and her shoulder is healing well from her surgery.  She has been able to do more.

We discussed how since having Long COVID, we all are having new pain, new conditions and wonder if COVID is all to blame.  One member is suffering from wrist pain, not sure what it is yet.

We also discussed getting over stimulated being in crowds or noisy places.  Our resistance to these conditions seem to be a lot lower and not able to be in crowded or loud places for very long.

One member shared that she is still waiting to take more tests on her vaginal pain and frequent UTI’s.

Articles shared this meeting:

2024-09-02 How does COVID-19 vaccination affect long-COVID symptoms – Find this in Vaccine Folder

2024-09-02 Creatine supplement improved symptoms from post‐COVID‐19 fatigue syndrome – Find this in Medicines, then Creatine Folder

8/26/24

A few of us met and shared our challenges. I was rather tired and forgot to take notes! I apologize. We mostly shared our aches and pains, how tired we were and our usual struggles.

No articles shared this meeting.

8/19/24

One member shared her fears and frustration with frequent UTI’s and taking antibiotics and getting upset stomach.  Her first urologist appointment is later this week.

One member reported that his doctor told him that he must get the COVID vaccine this fall due to his compromised immune system and other medical conditions he deals with.  Other than this doctor, 3 other member’s doctors have told them not to get the COVID vaccine due to the problems it can cause and can make Long COVID worse.  One member was told she should get the RSV vaccine though.

One member said he got another steroid shot for his back pain and the acupuncture hasn’t helped over the last few weeks.  He is thinking he will finish out the sessions he signed up for and be done with it unless it gets better before then.  Members had a discussion on back pain. The subject of back surgery came up.  Some people have great success or suffer more pain afterwards.  One other members said she got another shot as well and they only last for so long.

One member said she is still dealing with what the doctor is calling a loss of time. She described how she blanks out and doesn’t recall what happened.

She also shared a book she is reading “Tell Me When It’s Over: Any Insider’s Guide to Deciphering Covid Myths and Navigating our Post-Pandemic World” by Paul Offit.  It is not about Long COVID.  Here is a summary of the book: “Accompanied by a companion website populated with breaking news and relevant commentary, this book contains everything you need to know to navigate COVID going forward. Offit addresses fundamental issues like boosters, immunity induced by natural infection, and what it means to be fully vaccinated. He explores the dueling origin stories of the disease, tracing today’s strident anti-vax rhetoric to twelve online sources and tracking the fallout. He breaks down long COVID—what it is, and what the known treatments are. And he looks to the future, revealing whether we can make a better vaccine, whether it should be mandated, and providing a crucial list of fourteen takeaways to eradicate further spread.”

No articles shared this meeting.

8/12/24

One member said he recently had cataract surgery about 10 days ago and recommends it highly to anyone needing it as his vision is so much clearer now.   Another member said she is having a consultation for possible cataract surgery soon and was reassured by his great experience.

One member shared that her shoulder surgery recovery is going well and has been able to swim more.  She also shared that she got the headache cap that was mentioned last meeting and said it works well for her headaches.

One member said she has been really tired as her job is now requiring her to go into the office instead of working from home and the extra time to get ready and the commute is adding to her fatigue.  We talked about Long COVID now being a disability and she could ask her doctor for a note to work from home.  She also hasn’t been able to get back on Naltrexone due to her insurance changes but hopes to soon.

One member talked about getting over her third UTI in a short time and is waiting for her Urologist appointment next week.  She also reported that she saw the Pulmonologist and the first test she took was negative, but they ordered more tests.

One member did get her Spect scan results and it showed that her vertebrae are way out of alignment which is causing all her pain.  She is getting shots for now to relieve the pain, but may need surgery.  She said it is the result of arthritis, degeneration, and scoliosis.

One member shared that she has been working on her arts and crafts more and is hoping to play golf again.  Her physical therapist gave her exercises to help her condition to get ready for playing golf.

One member shared a poem she wrote about having Long COVID and read it to the group. Here is the poem:

Living with Long COVID

By Desi Okamoto

My energy is low

I had to learn how to pace

I must go with the flow

Like in a tortoise’s race

My thoughts get so foggy

Really hard to concentrate

Focusing gets boggy

Can’t have too much on my plate

I have less energy

Every day is hard to face

Got new limits, you see

I feel like I lost my place

I do struggle to eat

Leaning over is a chore

Chewing is quite a feat

Should I blend my food and pour?

Talking tires me out

I will try to socialize

To see friends, must be stout

Seeing them is like a prize

Life is more of a chore

It’s work to take a shower

Whew, end up on the floor

Feel like a wilted flower

Energy, I need more

I lost a lot of power

Could I be like before?

Fatigue can make me glower

I have heart issues now

And suffer with chronic pain

This all happened, just how?

I may need to use a cane

I move, then out of breath

From the littlest things now

Virus still moves with stealth

I do stuff and then wham, pow

Looked for cures in a book

Will doctors soon make a dent?

Long COVID is a crook

To recover, heaven sent

My energy, it took

Alas, no word on treatment

My life is on a hook

Sometimes, I do need to vent

When will we get a cure?

Docs have no medicine yet

Til then, have to endure

Get a cure, then be all set

Hope a cure will come soon

Till then, I go day by day

Sometimes I zone by noon

Overdo it, I will pay

I have Long COVID, yike

Recovery is my hope

Long COVID, take a hike

Till then, do my best to cope

No articles shared this meeting.

8/5/24

Today, we all shared with Dr Diane Vines about how much we appreciate her leading our support group and always providing the latest information on Long COVID. She has been running our support group since 2020.

One member said his insurance finally approved Nurtec for his headaches.  He said it works well for his really bad headaches as he can take it as preventive, before it gets bad.  He finally has found headache relief since getting Long COVID.   He just took a few heart tests since they found plaque in his arteries and is waiting on the results to see the extent of the plaque.  He said his neuropathy is still bad and ever present.

Dr Vines mentioned that there is a new out patient procedure where they chip out the part of the spine that is causing pain and people have been getting pain relief this way.

One member read a book, “Beating Long Haulers” by Michael Bowker.  Here is a description of the book: “Scientifically based and emotionally charged, this book demystifies the new epidemic, called ‘Long Haulers Syndrome’ in America and ‘Long Covid’ globally. Motivated by the suffering of his own family and friends, investigative journalist Michael Bowker set out to find the truth behind this brutal sequel to COVID-19 that is striking tens of millions of people in the US and worldwide. Bowker conducted exclusive interviews with post-COVID experts from Mount Sinai, Mayo Clinic, the NIH, Johns Hopkins, Stanford University and medical centers worldwide. They unveil the mysteries of the disease and prove the often-debilitating symptoms are biologically based, not psychosomatic. Also included is a look at the research into treatments and cures, patient stories and a review of symptoms and their causes, and a look at the epidemic worldwide. The book is full of profound affirmation and hope for patients.”

We talked about the Long COVID Research Moonshot Act of $1.5 Billion across the FDA, AHRQ-Agency for Healthcare Research & Quality, HHS-Department of Health & Human Services, and National Institute on Disability, Independent Living, and Rehabilitation Research Funding.

One member shared her latest symptom of sweating in her left foot, just the weirdest thing.  At least her vertigo is better.

One member was having very bad headaches has been better for awhile, but has come back.  She said Tylenol or Advil doesn’t do anything.  She said she started wearing a cold cap and it really works well for her and you can get it on Amazon.  She has tried a few and said “Thera Ice” works the best.  Another member mentioned that Nurtec works really well for him and can be taken as a preventive measure before it gets bad and works well for him.

One member talked about the frequent UTI’s she has been getting along with the pain in her pelvic/vulva/hip area. One member mentioned that Vaginal Esrodial could be low and can cause UTI’s.

On member shared what she learned from her Primary Physician:

1.    She did say that if you have Long COVID to not take the Shingles vaccine.

2.    She said she is not taking the COVID vaccine anymore as she got bad side effects.

3.    She said wait till you are age 65 to take the Pneumococcal and RSV vaccine.

4.    She said don’t use the nicotine patch to treat Long COVID.

5.    She said don’t take the BCG Vaccination to treat Long COVID.

We also discussed Paxlovid and we also don’t want to take that because too many people have the rebound effect.  Two members who took it got severe effects.  One member said she got intense abdominal cramping.

One member said originally when she got COVID, her lungs were infected.Pictures of her lungs at the time showed a lot of black areas, but now it is clear.

No articles this meeting.

7/29/24

No meeting this day, resuming our weekly meetings on Aug 5, 2024

7/23/24

Articles shared this day:

2024-07-23 Long COVID Risk Has Dropped Since Start of Pandemic - find in Research & Studies folder

2024-07-23 Postacute Sequelae of SARS-CoV-2 Infection in the Pre-Delta, Delta, and Omicron Eras _ New England Journal of Medicine - find in Research & Studies folder

7/22/24

One member shared her 5 week road trip vacation!  She spent time with friends and family as she drove across the U.S. She rested a lot when driving.  She was able to rest with family towards the end as she drove back home. She said it was tiring to drive and visit with people but did enjoy her time.

One member shared that after a few years, got another UTI after just having one 2 months ago.  Having a UTI is debilitating and exacerbates her Long COVID brain fog and fatigue due to the pain/discomfort and lack of sleep until she was able to get antibiotics.  This member is also having on going appointments and tests regarding her new hip and pelvic pain that no one has been able to explain yet.

One member was told by his doctor that he does have plaque build up and now has to do a bunch of Cardiology tests to determine extent of plaque and treatment.  So just more doctor and lab test appointments.  He was happy to report that his insurance company finally approved that they will cover the Nurtec medicine for his really bad headaches.  The great thing about this medicine is he can take it as preventative and has been really helping with his headaches.

One member reported that she went back on the Naltrexone at 0.5 mg, but it made her Long COVID symptoms worse, so she has decided to not use it anymore and has actually been feeling better after she got off the Naltrexone.  It has helped three other members who have been at 6.0 mg so it is really unfortunate that it hasn’t helped her.  She reported that she has been drinking caffeine to help with her fatigue and brain fog and it helps her get through the day.

One member asked if anyone else was having short term memory issues like in the same day, week, months. She said she can’t remember things at the moment, but may recall it later, like a week or month later.  Other members agreed that they go through this too.

One member shared that she has been experiencing black outs.  She said she will be doing something and then comes back to herself later not knowing what happened during that time.  She is seeking medical attention for this new symptom.

Articles/website links shared this meeting:

Here is a link to information on Stem Cell treatments.
https://www.medscape.com/viewarticle/does-this-stem-cell-therapy-contain-any-actual-stem-cells-2024a1000d05

Here is a link to several articles on Long COVID

https://www.medscape.com/resource/coronavirus

7/16/24

Articles and Website shared today:

2024-07-16 New Tactic to Speed Long COVID Treatments to Patients - find this in the Research & Studies folder

2024-07-16 Initial COVID infection severity predicts reinfection severity - find this in the Research & Studies folder

Open Medicine Foundation - an organization dedicated to moving ME/CFS & Long COVID research further and faster: https://www.omf.ngo/

This website link is also in the ARTICLES/WEBSITES/VIDEOS ABOUT LONG COVID section.

7/15/24

No meeting this day. Next meeting will be Monday, 7/22/24.

7/8/24

One member talked about her shoulder surgery and her recovery is going well as she is diligently doing her physical therapy which is helping.  She is already noticing her range of motion has improved some.  One member emailed in that she wouldn’t be able to attend as she is suffering with multiple blood clots in her legs and is on blood thinners, but in a lot of pain.  She can’t extend her left leg and is using a walker.  She got them the night she was travelling home on an airplane.  The group discussed how important it is to get up and move around as much as you can when flying.

One member said his acupuncture is going okay.  It has made his mornings easier to wake up and move around, but it hasn’t helped with his pain yet.

Another member said she still hasn’t got her appointment yet for her spectrograph test about her major back pain.  She said the pain meds are not working as well anymore.

We discussed how before COVID, we didn’t suffer chronic pain and several of us now have to deal with chronic pain.

One member who goes to the Stanford Long COVID clinic is disheartened as her employer health insurance won’t contract with Stanford anymore.  She is having to deal with figuring out what to do!  She has been suffering a lot of fatigue from helping her daughter move to a new home.

On member said she overdid it and is having to recover, but at least she had fun at her parties.

One member is still suffering from vertigo, it was really bad a month ago, but seems better lately.  Another member shared that she has learned to get up from bed slowly to avoid vertigo.  She also said she uses the Epley maneuver which is a treatment for vertigo.  Please consult with your doctor if you would like to learn this. It is something that you can learn and do at home.  Another member asked about this as she thinks she may have experienced vertigo and explained what she felt and if that is vertigo.  The other 2 members said that it sounds like it and to just move slowly when getting up.

No articles shared this meeting

7/3/24

Article on the possible synergy between CBD and Low Dose Naltrexone may ease Fibromylagia symptoms thus could ease Long Covid symptoms - find this in Medicines Folder under CBD and/or Naltrexone.

7/1/24

One member talked about her last follow up with her cardiologist who is now referring her to a pulmonologist since she is still getting out of breath easily and also had her take a medication, Isosorb Mono, for a 30-day trial to relax her blood vessels and improve blood flow to see if this made her feel better.  She said women tend to have small blood vessels and these are missed in all the tests and scans they have already done.  She said they don’t have the testing equipment here and the closest one is in Stanford.  They trial lasted one day as the medication gave her a headache for 24 hours straight.  Her doctor said to stop and to now try Amlodipine and shouldn’t have side effects.

No one has tried the nicotine patch yet, one member said she is planning to give it a try.

One member has a neuro implant that has a 5 year life and is controlled by an app on his phone to send electrical impulses to manage his neuropathy pain.  It helps in his legs, but not to his feet where he has a lot of pain yet.

We discussed whether we should still take the Long COVID vaccine as it seems to be giving people Long COVID.  We also wonder if we should be taking the RSV vaccine.  One member said her doctor told her that she should not take the Shingles vaccine since her immune system is compromised with the Long COVID and the Shingles vaccine may mess it up even more.

The member who experiences awful headaches, was able to get more Nutrin from his doctor and is still waiting for his insurance to cover it as it really helps a lot with his frequent headaches.

One member said she has been suffering with all her Long  COVID symptoms again as she went off Naltrexone and so plans to get back on it.

Another member said the acupuncture he recently started has helped some.  He can now wake up and move more easily, where before, it took him a good half hour to feel comfortable moving around.  It hasn’t helped much with his pain yet, but hopes future visits will help with his pain.

Articles shared this meeting:

2024-07-01 Chronic inflammation reduces dopamine levels contributes to fatigue and brain fog - find this in Research & Studies folder

2024-07-01 BCG vaccination may treat Long COVID - find this in Medicines folder

2024-07-01 How to Fix $1.6 Billion Long COVID Program - find this in Frustration folder

6/24/24

One member shared his cancer scan test didn’t show any malignancy but indicated heart disease and got a referral to a cardiologist for follow up.  Another member said the pain doctor she saw gave her Cortisone pills and they had helped with the pain a lot and can take as needed until she gets her spectrograph test and a more permanent solution.

The member who took the 10-week fasting study says she thinks it has helped her energy level as she seems to be able to do more activity than before, but can still overdo it.  She still has to meet with them to go over her results, but the initial summary report said she was an average responder of the study.  She started eating foods that she hasn’t eaten in 10 weeks, but her tummy got upset and so returned to eating the foods on the study.

A member who recently started taking Naltrexone is at 1.5 mg and it seems to be helping her and will stay at that level for now.  She said she stopped taking CBD and is now taking Eldlerberry by drink and tincture and it seems to be helping with her energy level.

One member talked about her vertigo getting worse.  She will be sleeping and wake up feeling like she is spinning.

The member who was going to try the nicotine patches didn’t start last week, but plans to start this week hoping it takes away her Long Covid symptoms.

In the article about auto antibodies and mice, one of the members emailed Dr Iwasaki named in the article about any possible trials.

Article shared this meeting:

2024-06-24 Antibodies from Long Covid patients prompt symptoms in mice - Find this in Research & Studies folder

6/17/24

The member who has been following the neuroscience explained in the website: https://resilience-healthcare.com/the-science/ has continued to feel better and is doing more things she hasn’t done in quite a while.   She said she can still get fatigued and rests, but she went to the gym for the first time, did a hour hike on the weekend and did okay.  She still needs to rest, but can do a lot more than she has been able to.  Another member talked about her back pain and will be seeing a pain specialist as they think it is her scoliosis causing her back pain.  Another member is still waiting and hoping that his doctor can get his insurance to cover the Nurtec medication for his bad and frequent headaches.  He said this is the first medicine that works well, but it costs $2,000.00 month and even with GoodRx, it still cost $1,000.00 month.  Another member commented that she is making more simple mistakes at work in the last couple months where these things didn’t happen before having Long COVID.  Another member added that she suffers from that too.  Members discussed mask wearing.   Most agreed it is still wise to wear masks at airports, and airplanes, and places like concert halls where a lot of people gather and come from lots of different places.  Some members felt it was time to stop wearing masks as you could still get sick with it.  Some members still feel safer wearing masks when they go out.

Articles shared this meeting:

2024-06-17 Nicotine Patch may relieve Long COVID- find this in Medicines folder

2024-06-17 Nicotine Patch-may displace virus from ACh attachment- find this in Medicines folder

2024-06-17 Nicotonic cholinergic system may help- find this in Medicines folder

2024-06-17 Viral reservoirs hanging on to Covid virus- find this in Medicines folder

6/10/24

One member shared that she was feeling almost normal!  She has been able to do more things.  She has been trying to do more mental positive thinking, telling herself she is healing and doing expressive writing.  She said she is working on retraining her neuro pathways to stop having worrying thoughts to more thoughts that she is healing.  She suggested we all check out Becca Kennedy’s website:  https://resilience-healthcare.com/the-science/ which has resources and suggestions on how neuroscience turning off “faulty” signals with healthy signals.

We also talked about wearing masks when out, especially when travelling in the airport and airplane.  Seems like a lot of people are continuing to get COVID.

One member talked about going out one evening where sha hasn’t before as it is hard and makes her overdo it, but wanted to do something so did it anyway knowing she would be able to recover after a few days.

We talked about pain and the various pain and cramps that various members have and how they deal with it such as exercise and CBD.

On Articles section of this website you can find Becca Kennedy’s website:  https://resilience-healthcare.com/the-science/

6/3/24

No meeting notes this meeting.

No articles shared this meeting.

5/27/24

A member recently started taking Naltrexone at 0.5mg and then increased to 1.0 mg a week ago, but suffered more fatigue, dry mouth, vertigo, and anxiety.  She asked if anyone had dry mouth.  Another member said he has dry mouth and takes Cevimeline for it.  Other members suggested that she go back to taking only 0.5 mg for a couple weeks more before increasing it since she felt better at 0.5 mg.  She also said her anxiety level was way up and asked for advice.  Dr. Vines led us through TIPP skills for anxiety.  This article, “TIPP Skills for Anxiety” is in the website.  One member said his first acupuncture visit is tomorrow and will report back on how it goes.  Other members suggested to him to ask about acupressure points he can do at home on himself when needed.  One member is getting a PET Scan on his whole body in search of why his spleen is enlarged.

Articles shared this meeting:

2024-05-27 TIPP Skills for Anxiety - Find this in the Coping folder

2024-05-27 Live in the moment - 5 things to do - Find this in the Coping folder

5/20/24

A member reported getting a UTI last week and was surprised on how much it exacerbated her fatigue and brain fog.  Her energy level was zapped and brain fog really bad, hard to work.  Another member said when she got UTI’s her energy was zapped too.  A member has had pain in his side and discovered his spleen has been enlarged for a few months and the doctor cannot determine why – at this point they are attributing it to Long COVID and since they cannot determine reasons, they are testing for cancer to rule that out.  He has had a bone marrow done and has a PET scan coming up.  Another member is having a bad day.  She is having pain on her left side – should to breast area and feels like she can’t breathe on her left side.  The doctors have been unable to determine why as all her tests keep coming out normal.  She said this is probably why her anxiety level is high.

Another member talked about the pain he suffers on his left side, while another member talked about the achiness/pain she gets in her left arm and wrist since having Long COVID.  So another member said she periodically got achiness in her left shoulder.  Another member talked about the achiness in her left arm too!  This turned out to quite the topic as many of us experience pain/achiness in our left arms.  A member talked about how her heart stops around 3:00 to 4:30 am and she wakes up gasping for breath.  She has done various sleep tests and uses machines to help her sleep.  This did not happen to her before COVID.

Members discussed eating a Mediterranean diet, more plant based foods.  The member undergoing the10 week fasting study says she retested for a C reactive protein test for inflammation and her results were a lot better than when she first started the study.  She said her cholesterol also made a significant difference drop like 20 points!  She thinks maybe this study is helping.  She said her energy level seems better, but then will do more and crashes and overdoes it.  She is not cured, but maybe better than before, but still has to be careful and not overdo it.

A member who did more planting and gardening last week said she didn’t crash, was able to get up and function, but was very fagtigued.  One member said when she overdoes it, she gets a bad headache and Advil doesn’t help at all.  Since she is undergoing the fasting study, she is not supposed to take any medications.  One member who always has bad headaches, said the Nurtec he recently started taking for his headaches has helped.  By taking it a night time, he stopped having the heartburn he was getting when taking it in the morning.  He said it has really helped and he can take it everyday as preventative as well.

A member said she did have her 15 minute consultation with a Naturopathic doctor and did a chronic illness test and this doctor suggested she take Naltrexone.  She has signed up for an hour consultation for further help on what she might be able to do for her Long COVID.  Another member asked if anyone felt warm sensations on their body.  No one can tell her why she gets these and 2 other members said they get the feeling as well.

No articles shared this meeting.

5/13/24

A member reported that she is feeling better and was able to do planting in her garden which she wasn’t able to be since having Long COVID.  She is hoping this improvement will stay.  Another member reported she is doing better.  She said she started using Naltrexone at 0.5 mg for 2 days now and she thinks it has already helped as she feels a lot better, but it could be a combination of getting better sleep and eating better.  She did report one bad side effect of tremors in her hands so she will have to monitor that.

The member participating in the Fasting 10 week study says she is not sure if it will help.  She is continuing to be out of breath as before starting the study and seems a bit worse.  She has had several tests for this and they all come back negative.  She said she also feels more fatigued.  A few members discussed how easy it is to get out of breath now from simple actions where it would have never bothered them before COVID.  Members also discussed getting out of balance and experiencing vertigo.  We discussed how just talking, eating, taking a shower zaps our energy.

One member reported that she saw a speaker talk about having an invisible illness.  This speaker also has Long COVID and has seen a Naturopathic doctor for treating her Long COVID so this member has a consultation with this doctor to see what she can offer to treat her Long COVID.  Naturopathic medicine embraces many therapies, including herbs, massage, acupuncture, exercise, and nutritional counseling.  We are all looking forward to see if this Naturopathic doctor has information we can all use.  Another member said that Naturopathic centers usually offer up to 2 hour intake/consultations to find out what they can about you, your symptoms, you eating habits, etc.

Another member talked about his chronic pain and said he found a new pain management doctor, Dr Arownow in Palm Springs who has a lot of Long COVID/HIV patients.  This doctor suggested this member take Nurtec for his bad migraine headaches as nothing else has worked for him. He has only taken it for a couple days and it did ease his headache, but it gave him awful heartburn and couldn’t sleep.  He is not sure he will be able to continue taking it.  A discussion of back pain came up and he said Dr Cassim gave him a nerve ablation and he hasn’t had that back pain since then.  He said he can’t get it for his neuropathy pain in his feet as the doctor told him that nerve ablation has to only be one in the hips and above.  We also talked about getting cortisone shots for pain.  A couple members talked about how it helped, but for one member who has diabetes, he said he can’t get cortisone shots because the steroids in it will increase one’s blood sugar level.  One member discussed how she did yoga for her hips which have helped to stave off getting anymore cortisone shots for a few years.  Members discussed using yoga to help with pain and meditation.  A member who suffers neuropathy pain said his doctor said to try Alpha Lipoic Acid as that may help.  We also discussed how engaging in creative activities such as music and crafts seem to ebb off fatigue and brain fog while doing it.

No articles shared this meeting.

5/6/24

A new member joined our group today. She has had long COVID since 2020 like a few of our members. She also has had COVID 3 more times and each time it made her Long COVID worse. She has brain fog, fatigue, headaches, chronic pain, muscle spasms, her hands and feet cramp and curl up and she never had these symptoms before COVID. Her brain fog is bad, she forgets what she has said 10 minutes ago, grasps and cannot find the words she knows she wants to say. Her forgetfulness scares her a lot as she is only 40. Between her bad cognitive issues and pain and spasms, she said she feels like an 80 year old and is afraid of continuing to degrade. She said people tell her she is just getting old. She said she feels like a different person and just wants to be the person she was before. We all let her know that she is not alone in her symptoms and her fears and we have all suffered with people telling us we are just getting old or it’s in our heads. We all feel like different people and need to rest now in order to continue through the day and if we overdo it, we have to recover from it, sometimes days, sometimes weeks, or even months. We also let her now that some of us have tried Naltrexone and Wellbutrin for the brain fog and fatigue with some improvement. She said she hadn’t heard about these and will talk to her doctor about them. Some members have also been using CBD and told her it has helped with chronic pain. One member said her hand and foot pain and curling sounds like neuropathy and should ask her Neurologist about it. He said an EMG, electro mylogram is used to help identify Neuropathy. She said she has taken many, many tests that all come back normal like many of us. The member in the fasting study has about 4 to 5 more weeks to go. She said her energy is very low and on the days she doesn’t have to fast, she thinks she may feel more energy. She is hoping this study works. Members discussed intermittent fasting and how it can help to make you feel better. One member said she relapsed again and is starting to feel better again. One member had her heart catherization test and it came back normal which of course doesn’t explain her shortness of breath. Another member talked about all the heart tests she has taken and nothing explains her shortness of breath either. A member also suggested meditation to our new member as another means to coping. Another member suggested Modafinal as this helps with her sleepiness, she takes it in the morning and it helps keep her awake. Another member suggested Naltrexone to our new member and to give it a try - take 0.5 mg for 2 weeks, then 1.0 for 2 weeks, then 2.0 for weeks, then 4.0 for weeks (some doctors stop at 4.5 mg), then 6.0 mg. 6.0 mg is the maximum doctors will prescribe at this time. Her Stanford doctor said she can be on it for 5 years. Another member’s doctor said can be on it for only 1 year.

Articles shared this meeting:

2024-05-06 Identify & Manage Long COVID - find this in the Doctor guides folder

2024-05-06 Diabetic Neuropathy Emerges - find this in the Diabetes folder

4/29/24

One member returned and is feeling better than the last few weeks and said she didn’t start Naltrexone yet. She said she has less worries and concerns now and that has helped with giving her better sleep and feeling better. She said she can still overdo it, but feels better, but still is suffering vertigo and can’t hear out of her left ear. She asked about Naltrexone and we have 3 members taking at 6.0 mg and they all feel it has helped with their brain fog and fatigue. She is hesitant to take it as she knows 2 long covid patients who got up to 4.5 mg and suffered reactions to it. One member shared that she was nervous about taking it too, but after 3 years of long covid, was getting desparate and started taking it at 0.5 mg for 3 weeks, 1.0 mg for 2 weeks, 2.0 mg for 2 weeks, 4.0 mg for 2 weeks, and then 6.0 mg and didn’t suffer side effects. Members also talked about taking Wellbutrin for the extra serotonin as this has helped some people with their brain fog and fatigue. One member suggested starting at low dose and work up as she tried it at 150mg and suffered many side effects. Members talked about how long they have had long covid and they have had it since Fall 2022, Early 2023, and April 2020. One member talked about how easily tired she gets from doing things and wears a band/sensor made for Activity Tracking for Pacing oneself. The arm band is connected to your phone via an app that keeps track of your activity and can tell you if you are over or under your pace point - website is: https://www.makevisible.com/

No articles shared this meeting.

4/22/24

The member doing the 10 week fasting study is suffering from back sliding into all her Long Covid symptoms flaring up especially since she had to stop taking Naltrexone during the study. She said she is also losing weight, her whole body aches and feels like she has the flu. She did note that her stomach doesn’t growl with hunger anymore. She bascially has all her Long Covid symptoms in full force as before taking Naltrexone. She said her fatigue came back ten-fold. Because of her shortness or breath, her cardiologist ordered an angiogram to make sure something else other than Long Covid is going on since she has family history of heart problems. She said a camera would be inserted through her wrist and hopefully not through her groin. Discussion arose about how you have to lie down and be monitored for 6 hours after the procedure to make sure everything is okay. An article was distributed today about Tinnitus. 3 Members have it, 2 had it before Long Covid and one got it after Long Covid. Members will look into the article to see if they can find help. One of the members talked about her fatigue and said it was just soul crushing and frustrating. She is just not able to do much without getting fatigued and having to rest. She asked if everyone else has to nap and everyone agreed. we discussed Naltrexone 6.0 mg use and how the doctors now say you can just stop taking it and don’t have to taper off anymore and go right back on it if short term. One member discussed her cocktail of supplements she is taking in hopes of relief of her Long Covid symptoms. She said her regimen is Vitamin B12, D2, NAC, Alpha lapoic acid, COQ10, and Riboflavin-B2. Another member told her that Modafinal has helped a lot with her coginitive function and fatigue.

Articles shared this meeting:

2024-04-22 Symptoms linger after COVID - Find this in the Frustration folder

2024-04-22 Functional MRI may treat Tinnitus - Find this in the Hearing-Tinnitus folder

2024-04-22 Ketogenic Diet may help Mental Illness - Find this in the Mental Health folder

4/15/24

We met a new member living in Oregon. She suffers brain fog, fatigue, rapid heart beat, shortness of breath, and trouble sleeping. One of our members started a Long COVID Study called, "Diet and Fasting for Long Covid" held by Pacific Northwest University of Health Sciences. The purpose of this 10 week study is to determine if diet changes alone or in combination with weekly one or two day water fasts decreases Long Covid symptoms. This study includes 180 participants. She is 3 weeks into this study and has actually stopped feeling hungry despite the reduction and limitation of food intake. She said the water fasting is supposed to go for 36 hours, but only last fo 24 hours. Another member commented she is still recovering from the should surgery. She commented that since Long COVID, she takes longer to recover from surgeries. One member said she has been on CBD for about a week and hasn’t notice anything yet. The other members said to give it at least 3 weeks. We discussed sleep issues. One member asked if others had a restless type feeling, not pain, but just an uncomfortable feeling One other member said she has felt the restlessness. We discussed using meditation apps such as Calm, Sleep stories in Calm and Headspace - this App is white with an orange circle. The member going to the Stanford Long COVID clinic said they now say you can be on Naltrexone for 5 years. Dr Young, here in the Desert says up to 12 months is okay.

4/8/24

One member was not able to attend as her vertigo got reall bad, but reported in that she was told that she has vestibular inner ear issue which was caused either by her COVID or the COVID vaccine. Her Physical Therapist said she has vestibular inflammation. She is taking 2,000 mg of Cuercetin to help reduce this inflammation in her inner ear. Along with her vertigo, she is experiencing a woozy, rocky feeling. We discussed CBD again. So far 2 members are taking 20 mg, one member only takes 10 mg and feel it has helped with their sleep and pain. A fourth member just started taking a CBD product with CBN (for better sleep) ad 30 mg and hasn’t noticed anything yet after 3 days. We also discussed Vagus nerve stimulation again. One member looked into the actual stimulation, but it is expensive and insurance doesn’t cover it. So the topic of cold showers, drinking cold water, etc. was discussed again. Some members are wary of it as they prefer heat and not comfortable with the cold!

Articles shared this meeting:

2024-04-08 BC 007 Targets Long COVID_Trial Progress - Find this in the Medicine \ BC007 folder

2024-04-08 Vagus nerve stimulation - Find this in the Medicine \ Vagus nerve folder

2024-04-08 Vagus nerve stimulation_ epilepsy to cholinergic anti-inflammatory pathway - Find this in the Medicine \ Vagus nerve folder

2024-04-08 Vagus Nerve_ Pathology of the Gastrointestinal Tract - Find this in the Medicine \ Vagus nerve folder

2024-04-08 Long COVID is Real - Find this in the Doctor guides folder

2024-04-08 Doctors treating Long COVID & COVID struggle as well - Find this in the Mental Health folder

2024-04-08 Long COVID cases rising - Find this in the Statistics Folder

2024-04-08 Long COVID Alliance - Find this in the Resources Folder and also in the Articles/Websites/Video link

4/1/24

One member said she read an article in Medscape that Long COVID numbers are going up due to more people catching it and spreading it.  People aren’t wearing masks or getting vaccinated increasing those getting COVID.  The article said the more times you get COVID can increase your chances of getting Long COVID.

Members had a discussion of using CBD to help with Long COVID symptoms.  Three members are using it and said it has helped reduce pain from neuropathy,  helps reduce arthritis pain, they are sleeping better, and helps to  calm them.  Some of us have struggled with sleeping well since getting Long COVID and those members using the CBD are happy they are sleeping better.  They have been taking 20 mg either in gummy form or a tincture or capsule. They can be found at CBD dispensaries, compounding pharmacies, at Eisenhower in the D.O.C. building, and on various websites.  One member is getting hers from a website called Wine Warfare and gets a pack of 10 gummies for $10.00.  At Eisenhower they sell for $100.00 for quantity of 30.  It is suggested to take CBD about an hour before bed time since it can make you sleepy.  Another member said he tried CBD a couple years ago, but it made him too sleepy and didn’t help with his pain so he stopped taking it. It was suggested that he could try again wit a different brand.

One member said she was finally able to get a prescription for Naltrexone starting at 1.5 mg.  We suggested to her that we all took the first step for two weeks, then double it for two weeks and so forth till you get to 6.0 mg.

One member asked if anyone else experiences an electrical type of feeling in their head, kind of like static.  She said that when she overdoes it, she gets this feeling/sensation.  One member says he gets this in his feet and another gets it in his legs.

No articles shared this meeting.

3/25/24

One member shared her follow up visit with the neurologist - He is still okay with using Naltrexone. He said if it is helping, can stay on it now for up to 12 months. He still thinks long term is not a good idea due to the unknown. He did say it would now be okay to add Bupropion (Wellbutrin) if want to see if it helps. He said can start at a lower dose of 75 mg to see if don’t have side effects. For this one member, 150 mg was too high and suffered multiple side effects. He is against any and all supplements and monoclonal antibodies infusion as there is not enough data to support taking it. One member discussed how treating her vagus nerve to the cold has been a big help in feeling better. She is in Oregon and would sit in a hot tub but exposed the top of her body to the cold. Keeping your head and neck cold seems to calm he Vagus nerver which runs from the top of your head to your throat. She even said gargling cold water can help to cool down your vagus nerve. Cold showers can also help. She has also tried black elderberry tincture to see if it would help. She thinks it helped some. Another member is going to try a tumeric, cinnamon, and cumin supplement as it is supposed to help with brain function. One member has tried CBD 20 mg gummies to use for help with her depression, she said it calmed her. Members also discussed doing video games to help with brain issues. One member said she played video games with her grandson and it seemed to wake up her brain. She also noticed moving actual puzzle pieces around and not neccessarily completing the puzzle woke up her brain too. Members shared the brain game apps they played. Some were Royal Match, Cube Block-Woody Puzzle, Word Cookies!, and Jigsaw Puzzles for Adults HD.

Articles shared this meeting - coming

2024-03-25 How to recover from COVID Brain - VIDEO - Find in Brain folder

2024-03-25 Time to stop using term Long COVID - Find in Doctor guide folder

2024-03-25 What we know about long COVID-brain fog & fatigue - Find in Frustration folder

2024-03-25 People share their Long COVID Struggles - VIDEO - Find in Frustration folder

2024-03-25 Can Antihistamines treat Long COVID - VIDEO - Find in Medicine \ Antihistamines folder

2024-03-25 Five Keys to Helping Long Covid Patients Recover - Find in Coping folder

3/18/24

One member talked about her continued dizziness and getting off balance. She shared a Vestibular physical therapist, Greg Cox, that can help with dizziness and balance issues. He works at the The Ear Institute Center for the Ear, Hearing, & Balance in Palm Desert. A few of the members discussed how many people around them are getting sick with COVID and how we all don’t want to get it in fear of our Long COVID getting worse. One member shared that a supplement, Fisetin, a flavnoid, may help with neurological damage, is anti-inflammatory, and may improve mitochondria function. One member shared that submerging in cold water helps, even a cold shower. One member shared that after her hot shower, she will make it cold. There is thought that this helps calm the vagus nerve which in turn can calm you down. Members shared their stories about being able not tolerate loud noises anymore since getting Long COVID. One member has been experiencing hearing loss. One member said her doctor will not prescribe low dose Naltrexone. Three members in the group are all at 6.0 mg Naltrexone now and feel it has helped their brain fog and fatigue. She was encouraged to take articles about low dose Naltrexone in to the doctor and share that her support group members have seen improvement. Members discussed their diabetes and how it can fluctulate widely and that there is a patch now to help monitor levels and make you aware via the app to address levels before getting too high or low. We had discussion on diet and that a mediterranian diet/plant based diet is the best non-inflammatory diet. It came up that carbs weren’t good, but that complex carbs is good, for example, don’t eat white bread, but whole grain bread is good.

Articles shared this meeting:

2024-03-18 Mild COVID-Risk for Neurological & Psychiatric Disorders - Find this in Brain folder

2024-03-18 COVID virus can remain in body over a year - Find this in Research folder

3/11/24

One member shared that she has recovered after being down for 4 weeks. When she overdoes it, it takes her down from 4 to 6 weeks at a time. She is determined this time to pace herself better. Another member said she is planning on retiring end of May so that she can do more of the things she loves with her music and to have a better balance in life without working full time anymore allowing more time for pacing and her hobbies. One member saw her Stanford doctor and reported that he was still looking into the monoclonal antibodies, he didn’t think Ketamine would help, he said using CBD could help, he mentioned using Abilify at a microdose- use it for 2 months to see if it would help. Another member said that Abilify is sometimes used in addition to an anti-depressant to make it work better. Abilify common side effects is weight gain and feeling loopy. The Stanford doctor also said that the longer you have had Long COVID tends to mean the longer you may have it. The Stanford doctor thinks that you can keep taking Naltrexone, no time limit since it has very little side effects. He also said you don’t have to step down the dosage if you want to stop taking it. He said you may want to stop taking it to see if you still need to take it. He said if you end up getting worse, you can just go back on it. But he does not approve taking more than the 6.0 mg, some doctors won’t prescribe more than 4.5 mg. He also said that you can take a SSRI/anti depressant or Abilify at the same time with Naltrexone. Another member said she read about Tai Chi and thought this might be a good exercise for Long Covid patients since it’s slow moving. Another member said he has better pain management from the CBD he is taking now. He said at Eisenhower in the D.O.C. building, 2nd floor, they have an office where they sell prescription strenghth CBD over the counter. He gets 30 pills for $100.00. One member had her blood sugar drop to 30, very low! Another member told her about the patch he wears that will alert him on his IPhone when his blood sugar is getting too low and he can tend to it. There is also a gel available now to give someone in their mouth when their level drops when they can’t drink or eat. Dates is also another good thing people carry with them in case their blood sugar drops. Another member shared she overdid it this weekend but sometimes it’s hard to avoid living life.

Articles shared this meeting:

2024-03-11 Long Covid Risk for Neuro, Psych Disorders - Find in Research & Studies Folder

2024-03-11 Low iron levels could trigger long COVID - Find in Research & Studies Folder

3/4/24

One member shared that she went on a hike, but recovery has been hard and slow. Another member shared she went out of town for the first time in 4 years since her Long COVID for one day at Disneyland and had a great time, but is still recovering a week later, each day gets a little better. She said her brain fog got really bad for 2 days afterward. One member shared about her bad fatigue, but that her brain fog has been clear, but can still get brain tired after a certain amount of time. One member reported that the Himalayan salt bath was very relaxing. She doesn’t think it will help the Long COVID, but does help her to be in a very relaxed state. She also brought up the Oura ring she wears to monitor her sleep cycle and patterns. It also monitors her stress level, heart rate level, and oxygen levels. You can just google Oura Ring to find out more about it. She said she even shares this information with her doctors. The ring is connected to an app on her phone where all the data is recorded and saved. A discussion about Naltrexone came up. One member was unable to get her primary physician to prescribe so will ask her Neurologist about it. Three members who have been on it, all feel it has helped. One member talked to Dr Young about it and it sounds like we may not have to worry about having to stop taking it as he thought before. One member has been on it for 7 months with no side effects. The other two members have not had side effects either.

Articles shared this meeting - coming

2024-03-04 Long Covid may harm Cognition - Find in Brain folder

2024-03-04 Covid affects brain with drop in IQ - Find in Brain folder

2024-03-04 Cognitive Deficits from severe Covid 9 pt IQ drop - Find in Brain folder

2024-03-04 Millions suffer Long Covid-why no treatments - Find in Frustration folder

2024-03-04 Long Covid - Overactive immune response in lungs - Find in Respiratory-Lung folder

2024-03-04 Study IDs Immune Abnormality may cause Long Covid - Find in Studies folder

2024-03-04 90% Long Covid patients had mild Covid - Find in Studies folder

2024-03-04 Long Covid patients respond differently to Covid Vaccines - Find in Vaccines folder

2/26/24

No notes this meeting.

Articles shared this meeting:

2024-02-26 Deep phenotyping with CFS & Long COVID - Find in Studies folder

2024-02-26 Linda Polgega 2 year odyssey with Long Covid & poor medical system

2024-02-26 Reporting on long Covid taught me to be a better journalist - Find in Frustration folder

2024-02-26 Long COVID Not Just in Your Head - Find in Frustration folder

2024-02-26 Long COVID Is Complicated - Find in Frustration folder

2024-02-26 Living with Long COVID 1,374 days - Find in Frustration folder

2024-02-26 Could Long Covid Be the Senate’s Bipartisan Cause & Naltrexone low dose use - Find in Frustration folder

2/19/24

One member reported back on his visit to the ENT about his tinnitus, pounding and echoing in his ears. He discovered that the pounding and echoing was due a lot of build up wax and they vaccummed it out! He said it’s a lot better now, but still has the tinnitus. He asked his ENT about the Cortexi product but the doctor said it has not been proven to be an effective treatment. Another member asked how did he cope with sleeping with his tinnitus. He said he takes Ambien to help him sleep. The other member said she uses a white noise machine to try and mask the tinnitus. One member said she got the all clear from her cardiologist, no heart conditions to worry about, no blockages or calcium build up. All she has is sinus tachycardia which seems to be a common thing after getting COVID per some studies. Members also talked about how COVID has affected so many with Long COVID and has changed our way of life. We are still feeling the effects of supply chain issues and higher prices for everything. Dr Vines said she will be presenting a Long COVID presentation to several Universities and will share what we have all learned about Long COVID - latest research, possible upcoming treatments, how to live with Long COVID, what to say and what not to say to Long COVID patients. She will also share this presentation with the group and we will post it on our website. The members today also shared on the poor sleep they get now, waking up every 1 to 2 hours, sometimes not able to get back to sleep. Sleep is important and not getting it just adds to the delibitating symptoms of Long COVID.

Articles shared this meeting:

2024-02-19 Covid cause overactive T cells - Find this in Brain folder

2024-02-19 Long covid toll on relationships and intimacy - Find this in Coping folder

2024-02-19 Long COVID another Great Pretender - Find this in Frustration folder

2/12/24

One member talked about her 48 hour holter monitor test with a range of bpm from 48 to 106. She will be seeing her cardiologist tomorrow to see what this all means. Long Covid has already given her sinus tachycardia. Another member talked about her 21 hours of travel due to storm delays on getting home. She said it took her a good couple days to recover. Another member shared that his ear ringing and pounding has gotten worse and just recently, now also has an echoing sound going on in one ear. He will be seeing his ENT tomorrow. Another member said her tinnitus and pounding is worse since COVID too. She asked him to ask his ENT about Cortexi, a product that supposedly gets rid of tinnitus. One member talked about her visit with the Infectious Disease doctor about the monoclonal antibodies infusion. She said the doctor told her that all her tests for Lyme disease and a host of viral diseases were negative and that they don’t do the monoclonal antibodies infusion for Long COVID because it is not yet a proven treatment and is not covered by insurance. It also costs $15,000.00. This doctor said he has treated 4 Long Covid patients with his Hyberbaric Oxygen chamber. One had no improvement, 1 had great improvement for a year now, and 2 have had great improvement for 6 months now. One of the members met a doctor on a flight home and this doctor said they she should try a Ketamine infusion for Long Covid. Apparently, some people are trying it. She will ask her Standord doctor about it. It costs around $800 a treatment and is not covered by insurance. One member said her friend who has an auto-immune disease has done a Halo salt treatment and that it helps her to feel better so she is going to try it and will report back. One member shared that he seems to be getting his taste back! He is noticing he can taste more foods. In the beginning, everything tasted like plain pizza dough. One member is still dealing with her ongoing UTI’s from Long Covid.

Articles shared this meeting:

2024-02-12 Long COVID Could Be a Brain Injury - Find this in the Brain folder

2024-02-12 Funding Long COVID goes private - Find this in the Research folder

2/5/24

One member talked about her Wellbutrin (serotonin) experience. She had many side effects - diarrhea, feeling hungry after eating, increased night urination, increased hot flashes. Discussion included possibly starting at a much lower dose than the standard 150 mg the doctor prescribed, but another side effect can cause sinus tachycarida which she already has. One member had started at 50 mg and then up to 100 mg and stayed there with a noticeable increase in energy. Other members talked about how these medications have so many uses other than one which could be the cause of side effects. Come to find out, Wellburtin is used for appetite suppression but can cause a feeling of hunger in some! One member talked about her upcoming appointment to see if the monocolonal antibodies infusion woudld be a possibility. One member talked about her fear of being in public when people are coughing or sneezing and not covering their mouths. There was general agreement about experiencing this when these people don’t cover their mouths! We should be able to tell people to please cover their mouths, but it is hard to do. One member talked about his daily frequent headaches and that Tripotan can help, but he can only take it 7 to 9 days a month which is kind of crazy since you certainly can’t plan for it. It’s not a medicine that you can take preventively. It only works when it starts happening. So if you have 7 to 9 bad headaches in the first half of the month, then you are stuck suffering it out with only Tylenol the rest of the month.

No articles shared this meeting

1/29/24

One member saw his neurologist after waiting for months at the UCLA Long Covid clinic. He was told he may have frontal lobe damage from Covid which may be causing the headaches and cognitive impairment. We discussed that some doctors do think Covid has caused TBI (Traumatic Brain Injury) and TBI actually does affect the frontal lobe. The frontal lobe is where short term memory is, where you manage high level thinking/problem solving, expressing language, and voluntary movement. The frontal lobe is where you experience the brain fog. Another member said her doctor has her on a low dose anti-viral, Valtrex to ease her long covid symptoms. Her brain MRI showed that she had a tiny stroke. Members also discussed how they have tinnitus and just gets worse. One member shared that sinus tachycardia which she now has, has become very common among those who got COVID. She also shared that she learned from the neuropsych doctor that antidepressants such as Wellbutrin and Sertraline (Zoloft) don’t increase serotonin, but makes it so that the sertonin that goes thru the pathways, continues on instead of going backwards. Somehow the serotonin doesn’t leak back but continues forward, thus getting more serotonin to the brain. She also said Wellburing has serotonin and neueprenehine while Sertaline (Zoloft) has SSRI.

Article shared

5 Possible Treatments for Long COVID - Find this in the main Medicines-Supplements-Treatments folder

1/22/24

Big discussion on monoclonal antibodies infusion to treat Long COVID – one member reported back on her last Fri appt with the Infectious doctor that they wouldn’t discuss it yet until more tests were taken.  She did ask if they have treated any long covid patients yet and they said no. Another member had emailed her doctor at Stanford and they responded by saying that it is a possibility, but when they contacted the manufacturer, they didn’t get a response.

Members just continuing to cope. One member says the Wellbutrin has really helped with his energy level and encouraged others to try it.

One member asked Dr Creighton if she would accept a new patient from our Support Group and she did!

Articles shared:

2024-01-22 Possibility of blood test to detect Long COVID - find in Diagnosis folder

2024-01-22 Women more likely to get Long COVID - find in Studies folder

1/15/24

We welcomed a new member to the group. Some of her symptoms are brain fog, fatigue, dizziness, sinus problems, shingles, ear aches. She has seen lots of ENT specialists with no solution yet. She said her social life has been affected like many of us. One member has an appt about the monoclonal antibody infusion this week. Another member said that these infusions were used to treat patients who got acute COVID, so it may actually help patients with long covid. We also talked about Wellbutrin again for helping another member with increasing his energy as it helps to increase serotonin levels. One member talked about how last week she thinks the Naltrexone at 6.0 mg may have kicked in. She noticed that her brain fog shroud/heaviness seems to be gone. Her brain will still get tired, but she can work longer at 6 hours instead of 5 hours. The only drawback is that her energy level suffers for it and it’s hard to eat dinner as her energy is more zapped.

Articles shared this meeting:

2024-01-15 Test for brain degenerative damage - Find this in Brain folder

2024-01-15 Post-COVID-Information for Healthcare Providers - Find this in Doctor guides folder

2024-01-15 Autonomic conditioning therapy for Fatigue - Find this in Fatigue folder

2024-01-15 Exercise Difficult and Muscle Fatigue - Find this in Fatigue folder

2024-01-15 Viral reservoirs in Long COVID - Find this in Studies folder

2024-01-15 Paxlovid not helping Long COVID - Find this in Vaccines & Paxlovid folder

1/8/24

Members shared their sleep test experiences. One member did the home test and the in office test, results were negative like all her other tests. Another member is still waiting to take hers. Natltrexone is still working for 2 members, they see improvement in their sleepiness, energy, brain fog, and one member doesn’t seem to get as dizzy or nauseous (car sick feeling) anymore for up to 15 to 20 minutes of exercise. One member still over does it, but recovery is more like 2 days instead of a week. One member said his energy is back from taking Wellbutrin which is used to treat depression. The thoughts behind this is people with long covid are not getting enough serotonin produced and Wellburtin or Prozac helps with this. One of our articles shared was for the infusion of monoclonal antibody cocktailo casirivimab/imdevimab (Regenron) which in a small study relieved 3 long covid patients of all their symptoms within 5 days. She found a doctor at an Infusion Center/Infectious Diseases and has an appointment to discuss taking this infusion.

Articles shared this meeting:

2024-01-08 Brain from gut not producing serotonin - Find this in Brain folder

2024-01-08 Long covid brain fog coming from the gut - Find this in Brain folder

2024-01-08 Second infection long COVID impact - Find this in Doctor guides folder

2024-01-08 Long covid still confounds us - Find this in Frustration folder

2024-01-08 Long COVID deaths - Find this in the Statistics folder

1/1/24 No meeting this week, but articles were shared:

2023-12-30 Long COVID Risks Vary by Location - Find in Studies folder

2023-12-30 Who is likely to get Long COVID - Find in Doctor Guides folder

12/25/23 No meeting this week, but articles were shared:

2023-12-26 Monoclonal antibodies to treat Long COVID - Find in Medicines \ Monoclonal Antibobies folder

2023-12-26 Long COVID cost to country in Billions - Find in Disability folder

2023-12-26 Geriatricians and Long COVID diagnosis - Find in Frustration folder

2023-12-26 Living with Long COVID 1,374 days - Find in Frustration folder

2023-12-26 New research on long COVID treatments - Find in Studies folder

2023-12-26 Possible tests for Long COVID - Find in Studies folder

12/11/23

In our meeting today, one member told of her experience of having to meet friends for a get together for a mutual friend’s passing and the standing, little bit of walking, and conversing wiped her out and getting out of breath for about an hour, but was able to recover by Monday. The new normal is having to over extend sometimes, but knowing that we can recover to our new normal state. One member said that going back on Naltrexone has definitely helped. Another member has been on Naltrexone at 4.0 mg for only 2 months so far with no improvement, hoping to see some in the next month or two.

Articles shared this meeting:

2023-12-11 Reporting on long Covid taught me to be a better journalist - great article on validating our symptoms - Find this in the Frustration folder

2023-12-11 Long COVID effects on brain may explain long-haulers' symptoms - Find this in the Brain folder

12/4/23

One member said Bupropion (Wellbutrin) helped a lot with his fatigue. It is an anti-depressant, but has really helped with improving his fatigue. He started at 50 mg and went up to 100 mg. He has taken this for a couple months. He is still experiencing his daily headaches and the doctor may have him try Triptan which is used for migraines. Another member thinks that after 4 months, Naltrexone has really seemed to help her. She has been able to increase her exercise time from 10 minutes to 1/2 hour. Her doctor said there is no time limit on how long she can take Naltrexone and found an online pharmacy that will sell it for a cheaper price than a local pharmacy. Low dose Naltrexone costs about a $1.00 per pill as it needs to be done at a compounding pharmacy. CareFirst Specialty Pharmacy Team is an online compounding pharmacy that she found and says Stanford uses them. She can get 90 pills for $58.00. Another member’s doctor said to take it no longer than 4 month as side effects may start happening.

Articles shared this meeting:

2023-12-04 Long COVID is real-mental health suffers - find this in the Mental Health folder

2023-12-04 Long COVID's effects on the brain help explain many long-haulers' symptoms - find this in the Brain folder

2023-12-04 Four proteins may help diagonse Long COVID - Find this in the Diagnosis folder

11/27/23

One member said she has stopped using Naltrexone after 3 months as it hasn’t really made a difference. Another member is just finishing her second month, no changes yet. One member reported that the UCLA Long COVID Clinic seems to be undergoing changes. They seem to have less doctors now. One member talked about his daily dealing with neuropathy and how covid has exacertbated his pain. He recently had his neural implant reprogammed to help reduce the increase in pain as well as pain to new areas of his body. One member took the COVID Pfizer vaccine but did not fare as well as the other members. She got sick for 3 days - headache, body ache, no fever, but very wiped out. She started feeling bette by the third day. She has decided to do another round of accupuncture as it helped her to cope better the first time.

Articles shared this meeting - Click on button below to get to article:

2023-11-27 Using scents to improve memory - Find this in the Brain folder

2023-11-27 Hyperbaric Oxygen Therapy - Find this in the Medicines-Supplements-Treatment folder

2023-11-27 Slow recovery from COVID hospitalization - Find this in the Frustration folder

2023-11-27 Chest pain with Long COVID - Find this in the Pain folder

11/20/23

The subject of Naltrexone use came up. How long can Long COVID patients mirco-does does on Naltrexone? One member will ask her pharmacist friend what he thinks. One member said that her neurologist said to take 4.0 mg no longer than 4 months and then you have to wean off of it, the same way you increased it up to 4.0 mg. There is a NPR video online (radio broadcast) called “All things considered Long COVID. It’s a 7 minute video on how scientists are beginning to understand why brain fog, fatigue, and pain can linger for years after a person was infected. Members also talked about the frustrations of some doctors not believing in Long COVID.

Articles shared this meeting:

2023-11-20 Hearing Loss Is a Side Effect of COVID

2023-11-20 Long COVID's effects on the brain

11/13/23

We talked about our new “normal” and how we have to adjust our way of living by doing less. The latest articles talks about how people with Long COVID are not feeling beter, but have a just adjusted their baseline lower. Members agreed that this article validates what we are going through. One member’s neuropathy has been getting worse, his pain is not just in his feet anymore, but is in his hands and elbows now. Another member has recovered from her 2 days of cleaning a room from a flood. She said it took a week to recover. She has noticed in the last month, if she sleeps on her side, her arm goes numb and this happens on both sides. She will talk to her neurologist as this may be signs of neuropathy. Members also talked about losing friends since Long COVID has restricted the way we live and socialize. For one member, it’s hard because socializing i.e. talking and listening is exhausting and then has to recover from socializing. What does a person share and not share when you struggle each day? One suggestion was to tell friends you feel “the same” and then ask them how they are to change the subject. Another member will be asking his doctor about taking zinc to help restore his sense of taste as it hasn’t improved yet.

Articles shared this meeting:

2023-11-13 Long COVID is chronic illness - Find this in the Coping folder

11/6/23

Articles shared this meeting:

2023-11-06 Low serotonin may be causing brain fog - Find this in the Brain folder

2023-11-06 Two Year Observational Study - Iceland-Sweden-Norway-Denmark - Find this in the Studies folder

2023-11-06 Nirmatrelvir-Ritonavir Ineffective to reduce long covid conditions - Find this in the Medicines folder

2023-11-06 Stem cell intervention unproven for long covide - Find this in the Medicines folder

10/30/23

One member shared that she got the new COVID vaccine and it gave her a new side effect of getting dizzy. She googled it and it does seem to be a side effect of the vaccine. Two other members took it and were okay. One member said she went to Target for about an hour and it wiped her out on Saturday and Sunday. Members talked about balance and how it has been another symptom of long covid and making sure they use handrails when using stairs. One member said she took a treadmill/ultrasound test and it wiped her out.

No articles shared in this meeting.

10/23/23

Members shared their Naltrexone stories. Two members feel that being at 6.0 mg has helped. The feel a noticable improvemnt in not being as fatigued, but can still over do it. Another member is at 4.0 mg and feels a small, but noticeable improvement where she is not struggling as hard to eat dinner each night. We shared test results were the brain MRI will show volume loss, but they can’t say it’s from long COVID. The doctors say to eat a mediterranean diet, exercise within reason, play brain games like Sudoku. One member said they experience heart racing with no apparent reason for it and her heart echo was negative! One member who gets out of breath easily, said the technician told her that her heart echo looked “snowy” which indicates someone who smokes and she never has smoked. Waiting on doctor visit to see what that is all about.

Articles shared:

2023-10-23 Low serotonin levels may cause brain fog - find this in the Brain folder

2023-10-23 NY Time-Seretonin pathways-Fluoxetine may help - find this in the Medicine folder, Fluoextine folder

2023-10-23 Tryptophan may help long covid - find this in the Medicine folder, Fluoextine folder

2023-10-23 Depression highest among Long Covid patients - find this in the Mental Health folder

2023-10-23 Vaccine may reduce cardiovascular complications - find this in the Vaccine effects folder

10/16/23

A member said he got his COVID vaccine, not much in side effects. Another member said she got back her brain MRI results as normal, a good thing, but yet just another normal test result, nothing showing why she feels so bad! She said so far, her heart, her lung, and brain tests have been normal. They now want her to see an ENT for her dizziness. She also mentioned that she is on 6.0 mg of Naltrexone and it does seem to be helping. She said she can now do about 20 minutes of walking instead of just 10 minutes. Another member said she saw her Neurologist and he said to go no further than 4.0 mg of Naltrexone for only 4 months and then stop. He said when you stop using it, it is important to wean off of it, just like when you increased it over 2 week periods. He said he believes moving to 6.0 mg doesn’t do anything more than the 4.0 mg. Two members in the group are on 6.0 mg per their doctor.

10/9/23

One member shared that she is now on Naltrexone at 2.0 mg, not much change yet. Another member said she was moving to 6.0 mg soon hoping for improvement. One members shared that she finally has been able to see the Cardiologist to see if COVID has affected her heart, as her fatigue and getting out of breath easily has not improved since April 2020. She has 4 upcoming medical tests to take. Another member is recovering from his Ozempic side effects and seems like he is almost back to where he was before, still having about 3 bad headaches a day.

Articles shared this meeting: 2023-10-09 Common Cold and Long COVID - find this in the Studies folder

10/2/23

One member took his doctor’s advice and tried Ozempic to help bring down his blood sugar to help with his Diabetes. Unfortunately, he suffered severe side effects which had him visit the ER twice. It has taken a couple months to recover and now feels like he is back to where he was before it all started. The ER doctor had told him that they were seeing a lot of patients suffering from Ozempic side effects. He said the Ozempic intensified his Long COVID and existing medical condition symptoms. He said he also lost his sense of taste and smell for the first time. He experienced headaches 24 hours a day. He finally has them only a few hours a day now.

The subject of women having to advocate for themselves in the health care system is crucial and necessary as well as in the financial world. Members talked about Brene Brown who speaks about shame, vulnerability, and empathy. One of her videos is titled “The Power of Vulnerability.” They said she is a great speaker who talks about her research into understanding how shame and vulnerability worked and how to conquer it and develop a sense of worthiness in ones self. Just google “Brene Brown: The Power of Vulnerability.”

9/25/23

One member shared she is waiting for her brain MRI scheduled mid October and took many auto-immune disease tests - were all negative except for Epstein bar and is waiting to see if she will be taking further tests. We talked about the fact of all the tests we are taking to eliminate things and by elimination concluding Long COVID is left. We almost wish we get a positive test so that we can be treated for it and make our symptoms go away!

One member shared her lunch day out with a friend and how exhausted it made her and took a couple days to recover. One member shared working on her daughter’s engagement party and how exhausted she got deep down to her bones.

One member increased her Naltrexone to 2.0 mg hoping to see some kind of change. Another member started 4.0 mg hoping for more improvement. Another one is at 6.0 mg said she thinks it is helping her push through activities she wouldn’t be able to do before, but still got the crash afterwards.

Articles shared this meeting:

2023-09-25 Cells that remove debri dying off leads to Alzheimers - find this in Brain Folder

2023-09-25 Mitochondria making excess protein-causing chronic fatigue - find this in Fatigue Folder

2023-09-25 Long covid like CFS - needs more research - find this in Frustration Folder

2023-09-25 Mystery of Long COVID- patient frustrations - find this in Frustration Folder

2023-09-25 Ginger supplement may reduce inflammation - find this in Medicines-Supplements Folder in Ginger Folder

9/18/23

One member shared she got up to 6.0 mg on Naltrexone but hasn’t noticed any definite improvement yet, but thinks maybe her fatigue has improved, but not quite sure yet. Another member is now at 1.0 mg with no changes and will increase in another week. We discussed how long covid has exacerbated any existing health conditions we have. Members described their long covid headaches that are nothing like a normal headache. One member said her head feels like it’s been beat up and feels it over her whole head. Another member said her long covid headache feels like something is squeezing the top of her head.

Articles shared this week that are now in the website:

2023-09-18 Increased-Risk-of-HAIs-and-the-Case-for-Decolonization - In Articles \ Studies

9/11/23

The topic of loss of taste came up and one member shared that her doctor said, if you brush your tongue, it may “reactiviate” your sense of taste by cleaning your tongue. Another member shared that it seems his loss of taste has slowly returned a little bit. He said bread used to taste like cardboard and it now doesn’t taste as bad anymore. Two members shared how bad their long COVID symptoms were back in 2020 and that their symptoms are not as bad now, but nowhere near back to normal, but are hopeful it will continue to improve. These two members have been suffering since April 2020. We completed our own support group’s website and have begun sharing it. Anyone interested is invited to join our support group! We also talked about the prescription drug, Naltrexone and how one member’s pharmicist friend researched and saw the long COVID patients are using it from 1.0 to 4.5 mg. Three of our members are now using Naltrexone. One feels it has improved her fatigue and brain fog some. The other two have recently started using it.

Articles shared this week that are now in the website:

2023-09-11 Brain fog from Clotting Proteins-Fibrinogen & D-dimer - In Articles \ Brain

2023-09-11 Long Covid Poses Special Challenges for Seniors - In Articles \ Frustrations

2023-09-11 Reuters - possible drug to help long covid - In Articles \ Medicines folder

9/4/23

We shared how we were all generally doing. One member shared a new ailment of chronic pain from neck disc degenaration and a couple other members had lots to share on stretches to do and to get a seat cushion to relieve tail bone pressure! It’s great how members can share and learn about other conditions too! One member also shared she had been on Naltrexone for 2 weeks but has not seen any change in her Long COVID symptoms yet.

Articles shared this week that are now in the website:

2023-09-04 Brain ages 10 years from Long COVID

2023-09-04 Brain health suggestions per Neurologist

2023-09-04 Brain shrinkage and anxiety from Long COVID

8/7/23

One members Long COVID Clinic doctor suggests using Prescription Drug, Naltrexone for fatigue and brain fog. They believe in starting at 0.5 mg and after 2 weeks, to double the amount and stop at 6.0 mg. As of this date, she had just started this regimine. This doctor also said to do this for 6 months as after 6 months, it won’t help anymore.

Another member has been using Naltrexone for a few months at 2.0 mg and it seems to be improving her brain fog. This member said her Neurologist said that the Sudoku game is good for our brain fog. This member also had a brain MRI and it indicated that her brain was losing moisture. If your sodium is low, this could attribute to low moisture in the brain.

One member her that a Spectronomy (sp?) test of the brain exists that could detect the micro effects of Long COVID, but it is not available in our area and can cost up to $6,000.00 that is not covered by insurance.