Is there anything I'm missing? (Covid long hauler)

[busymama7]

52 minutes ago, Jean in Newcastle said:

I have had fibromyalgia for 30 plus years.  Massage is torture for me.  As in I am doing Lamaze breathing with the lightest touch that the massage therapist can possibly do.  And I'm in pain for days afterwards. 

I replied on another thread of  yours, but curcumin has been very helpful for me.  So has Quercetin.  Besides taking both individually, I also take Thorne AR Encaps which includes them as well as other antiflammatories (I'm pretty sure that the "AR" refers to arthritis so it's designed to work on inflammation.)

I strongly agree with the advice to contact a cardiologist and to have a cardiac work-up.  That really needs to be ruled out before looking at auto-immune (or in the case of chronic fatigue/fibromyalgia - it is now categorized as a central nervous system problem). 

IF you have been cleared by a cardiologist, and do have long term chronic fatigue, I will counsel you to get some very light exercise and movement.  I say this because I have gone over and over again into semi-invalid territory and it is extremely hard to counteract muscle atrophy after that.  It's a vicious circle that is extremely hard to break. 

Thank you. Yes I have the thorne ar supplement in my Amazon cart. But today I just didn't take anything and I'm kinda holding off until I have more direction. I really don't want to go down the path of a million cardiac tests because of a high deductible but I guess I'm going to have to. 

[caayenne]

5 hours ago, kand said:

I thought the POTS suggestion sounded like a strong possibility, and a web search turned up a ton of stuff on post-Covid POTS. You don’t happen to be near Johns Hopkins, do you? I see they have a dedicated Post Covid POTS clinic. This was a good article about the syndrome:

https://www.theatlantic.com/health/archive/2020/09/covid-19-heart-pots-myocarditis/616021/

This is a fantastic article. I had a shorter one that my sister sent me that I was going to link, but this one is much better. Thank you!

[caayenne]

So I don’t know if you were able to check your heart rate out, but I wanted to tell you what has worked for me over the past few months. Your situation might be totally different, but none of these solutions are drastic or expensive, so it can’t hurt to try. But I think that going to the doctor or cardiologist is a good idea either way.

For me, one of the biggest game changers has been Sudafed, 4-6 hour (pseudoephedrine). I get the store brand from Target, but you need the real stuff that you can only get from behind the counter. Back in the late spring and summer, I had to take it twice a day to get good results, but now I only take it in the morning. It is a vasoconstrictor, so it raises your blood pressure, which for POTS is generally a good thing, because it helps to force the blood up. If you have high blood pressure, you shouldn’t take it, but many people with POTS have very low blood pressure (I do). This has greatly relieved the dizziness and headaches, and it also seems to help with the heavy, achy feeling I get in my legs. I ran out of it about a month ago and went without it for three days, and by day 2, the dizziness was quite bad again.

Every morning, I take 2000 IU Vitamin D, 200 Mg Vitamin C, 1000 Mg Vitamin B12 (this seems to help with the shaky, anxious feeling), and 2 regular ibuprofen gel caps. In the afternoon I take another 1000 IU of D and another 200 Mg Vitamin C. I used to take another dose of ibuprofen but I usually don’t need it at this point. In the evening, I take another 2000 IU Vit D and sometimes 100 Mg Vitamin C. The D is life-changing, as you have already noted, but if you are taking less than this, maybe up it a bit to see if it helps. Again, as everyone is saying, please consult with your doctor about all of these things. Unfortunately for me, my doctor knows nothing about POTS, and I am in the process of trying to find another doctor.

Another thing that helps a lot with the heart rate and the fatigue is learning to balance resting with moving. Just resting all day makes me feel so much worse, mostly because it feels like all of my muscles seize up and it exacerbates the tachycardia whenever I do have to get up. So on a regular day, I will spend at least half an hour in bed after waking, just resting, and then gradually sitting up (while leaning against the wall), and then working my way up to getting up. Once I am up, I try not to immediately stand at the sink washing dishes or the stove cooking breakfast, but instead I walk around doing little things around the house, talking to people, going outside in the yard if it isn’t too cold, etc. This seems to keep my heart rate from spiking so high, which seems to keep the baseline lower for the day somehow. When I do need to stand in one place for awhile, I try to shift my weight a lot, sometimes I stand on one foot (don’t laugh, it helps! 😊), and I take short breaks to walk around. For the first few months, I also had to take breaks from sitting at the table (during school, eating meals) to get up and walk around a bit. But even now, and things are a lot better now, I have to take breaks during dinner prep to sit with my feet curled up (not flat on the floor, as that still allows the blood to pool in the lower legs), or to lie down on the couch for a few minutes. Cooking dinner can feel like a marathon, but if you pace yourself, it gradually gets better. 

I think I got quite a bit better when I stopped lying down so much and started sitting more. My favorite sitting position is curled up sideways against the back of the couch. Again, this gives your heart a chance to rest, and seems to bring blood to your brain. If you feel up to it, go outside and take even a five minute wallk, and then come back in and rest for a few minutes. If you can work your way up to doing that several times a day, you can start to recondition your body to being upright more. If you are feeling faint, though, you need more rest and less movement. It is a weird balancing act that often seems contradictory, but it has helped me to feel much better overall.

More in a bit! We are headed out to take a short walk.

 

Edited January 4, 2021 by caayenne

[busymama7]

4 hours ago, caayenne said:

So I don’t know if you were able to check your heart rate out, but I wanted to tell you what has worked for me over the past few months. Your situation might be totally different, but none of these solutions are drastic or expensive, so it can’t hurt to try. But I think that going to the doctor or cardiologist is a good idea either way.

For me, one of the biggest game changers has been Sudafed, 4-6 hour (pseudoephedrine). I get the store brand from Target, but you need the real stuff that you can only get from behind the counter. Back in the late spring and summer, I had to take it twice a day to get good results, but now I only take it in the morning. It is a vasoconstrictor, so it raises your blood pressure, which for POTS is generally a good thing, because it helps to force the blood up. If you have high blood pressure, you shouldn’t take it, but many people with POTS have very low blood pressure (I do). This has greatly relieved the dizziness and headaches, and it also seems to help with the heavy, achy feeling I get in my legs. I ran out of it about a month ago and went without it for three days, and by day 2, the dizziness was quite bad again.

Every morning, I take 2000 IU Vitamin D, 200 Mg Vitamin C, 1000 Mg Vitamin B12 (this seems to help with the shaky, anxious feeling), and 2 regular ibuprofen gel caps. In the afternoon I take another 1000 IU of D and another 200 Mg Vitamin C. I used to take another dose of ibuprofen but I usually don’t need it at this point. In the evening, I take another 2000 IU Vit D and sometimes 100 Mg Vitamin C. The D is life-changing, as you have already noted, but if you are taking less than this, maybe up it a bit to see if it helps. Again, as everyone is saying, please consult with your doctor about all of these things. Unfortunately for me, my doctor knows nothing about POTS, and I am in the process of trying to find another doctor.

Another thing that helps a lot with the heart rate and the fatigue is learning to balance resting with moving. Just resting all day makes me feel so much worse, mostly because it feels like all of my muscles seize up and it exacerbates the tachycardia whenever I do have to get up. So on a regular day, I will spend at least half an hour in bed after waking, just resting, and then gradually sitting up (while leaning against the wall), and then working my way up to getting up. Once I am up, I try not to immediately stand at the sink washing dishes or the stove cooking breakfast, but instead I walk around doing little things around the house, talking to people, going outside in the yard if it isn’t too cold, etc. This seems to keep my heart rate from spiking so high, which seems to keep the baseline lower for the day somehow. When I do need to stand in one place for awhile, I try to shift my weight a lot, sometimes I stand on one foot (don’t laugh, it helps! 😊), and I take short breaks to walk around. For the first few months, I also had to take breaks from sitting at the table (during school, eating meals) to get up and walk around a bit. But even now, and things are a lot better now, I have to take breaks during dinner prep to sit with my feet curled up (not flat on the floor, as that still allows the blood to pool in the lower legs), or to lie down on the couch for a few minutes. Cooking dinner can feel like a marathon, but if you pace yourself, it gradually gets better. 

I think I got quite a bit better when I stopped lying down so much and started sitting more. My favorite sitting position is curled up sideways against the back of the couch. Again, this gives your heart a chance to rest, and seems to bring blood to your brain. If you feel up to it, go outside and take even a five minute wallk, and then come back in and rest for a few minutes. If you can work your way up to doing that several times a day, you can start to recondition your body to being upright more. If you are feeling faint, though, you need more rest and less movement. It is a weird balancing act that often seems contradictory, but it has helped me to feel much better overall.

More in a bit! We are headed out to take a short walk.

 

Ok so I have had a hard time doing the test today because I ended up spending more time downstairs (oximeter was upstairs and my married kids came to visit etc) and I even made most of dinner etc. For sure like a marathon though as I just did bits and pieces in between resting.  This am when I tried it, it went up only about 25 beats(76 to 100ish) and only stayed up for a 10 seconds or so and then went most of the way back down. When I started walking around (putting in contacts etx) it went up to 120 and that is when I felt faint.  I don't feel faint usually when getting up.  It is more when my heart rate gets super fast.  It can be 140ish after climbing the stairs.  

Since coming back upstairs, it is hanging around 88-92 even while resting.  I feel overall more winded presumably from doing more today.  I tried to do the test again and it didn't go up more than 10-15 beats and only briefly and then went back down until I started walking around.

So I don't know if it is POTS. Some things match up but not all.  

Thank you so much for all the good information. There is another thread about this in the board, not sure if you saw that one.  

I do feel even more confused as I wonder if more activity would help or not so I have resigned myself to just doing a dr appointment and trying to get guidance as to what is going on with me specifically.  I don't have a lot of luck with doctors so it makes me hesitant. I spent 22 years being told I was fine when it was actually my thyroid that whole time so I have history with not getting answers from doctors which is why I lean more towards figuring stuff out myself.  But I can't figure this out.  

[PeterPan]

21 minutes ago, busymama7 said:

So I don't know if it is POTS. Some things match up but not all.

Fwiw, my dd has that situation where things will be like half way and not get diagnosed. So I get what you're saying, but I think I'd rather have that decision made by a doctor, like at that clinic trying to specialize in post-COVID problems, rather than assuming. You've got some pretty significant symptoms going on, and they don't want to call it POTS then maybe going to that clinic would get you the right answer. I also think that sometimes screenings in a clinic get different answers from when we do it at home. 

Do you think that your deductible is holding you back on making the move on the JH post-COVID clinic? What you might do is do the intake (which probably screens people), make the appointment (which is probably months out), and then just cancel if you get it figured out before then.

You're worth getting care, even if there is a deductible, and you'd rather have the appointment and cancel than to want it later.

[busymama7]

20 minutes ago, PeterPan said:

Fwiw, my dd has that situation where things will be like half way and not get diagnosed. So I get what you're saying, but I think I'd rather have that decision made by a doctor, like at that clinic trying to specialize in post-COVID problems, rather than assuming. You've got some pretty significant symptoms going on, and they don't want to call it POTS then maybe going to that clinic would get you the right answer. I also think that sometimes screenings in a clinic get different answers from when we do it at home. 

Do you think that your deductible is holding you back on making the move on the JH post-COVID clinic? What you might do is do the intake (which probably screens people), make the appointment (which is probably months out), and then just cancel if you get it figured out before then.

You're worth getting care, even if there is a deductible, and you'd rather have the appointment and cancel than to want it later.

I am not near john's hopkins and there is no post covid clinic near me. At least not that I can find and I have looked.  It would be easier for me to go if I knew the doctor had experience treating long covid for sure because I feel like I will either get the run around of not really believing me OR run up thousands of dollars of tests that also won't show anything.  The deductible isn't really holding me back from seeing a doctor, like I can afford an appointment 😉. It's just if they want to run a billion tests to rule everything out because they really have no idea and have to cover themselves that drives me crazy and I don't went to waste money like that. (And that would create a hardship for us)  I have been the rounds with several situations (not just the undiagnosed thyroid for so long I already mentioned).  

I think I'm going to start with a tele med appointment through my insurance to at least get an idea if that doctor has experience with long covid and/or a reasonable diagnostic plan.  I do have a cardiologist my friend uses that I can try to get into too.   I'm also feeling like so many long covid patients are just not getting answers anyways so why would I be different. But I am sick of it and resting for pretty much a month hadn't made a difference so yeah I'm going to start making calls.  

[PeterPan]

49 minutes ago, busymama7 said:

I think I'm going to start with a tele med appointmen

That sounds like a really good plan!! And it opens up options that might be too far to go to otherwise.

Well keep us posted!

[ktgrok]

If it helps, cardiomyopathy is a pretty clear cut thing to test and diagnose. They will do an echocardiogram, where they will measure the blood flow in and out of the hear as well as the thickness of the heart walls. 

[Not_a_Number]

8 hours ago, busymama7 said:

I think I'm going to start with a tele med appointment through my insurance to at least get an idea if that doctor has experience with long covid and/or a reasonable diagnostic plan.  I do have a cardiologist my friend uses that I can try to get into too.   I'm also feeling like so many long covid patients are just not getting answers anyways so why would I be different. But I am sick of it and resting for pretty much a month hadn't made a difference so yeah I'm going to start making calls.  

I wonder if you could do telemedicine with someone who isn't local who DOES have long COVID experience? Would your insurance allow that? 

[busymama7]

6 minutes ago, Not_a_Number said:

I wonder if you could do telemedicine with someone who isn't local who DOES have long COVID experience? Would your insurance allow that? 

Yes.  But I don't know how to find that. I looked at Johns Hopkins but it looked like you needed to be either local or able to travel for follow up which I can't do at least at this point. I mean I suppose I *could* fly there and stay at a hotel and maybe since I'm likely immune for another month it could work. Maybe.  But I don't really want to do that as my first choice 

[Not_a_Number]

Just now, busymama7 said:

Yes.  But I don't know how to find that. I looked at Johns Hopkins but it looked like you needed to be either local or able to travel for follow up which I can't do at least at this point. I mean I suppose I *could* fly there and stay at a hotel and maybe since I'm likely immune for another month it could work. Maybe.  But I don't really want to do that as my first choice 

I know there's also a long COVID clinic in NY. I might search around and see if you can find one that does telemedicine with non-locals? 

[ktgrok]

Just now, busymama7 said:

Yes.  But I don't know how to find that. I looked at Johns Hopkins but it looked like you needed to be either local or able to travel for follow up which I can't do at least at this point. I mean I suppose I *could* fly there and stay at a hotel and maybe since I'm likely immune for another month it could work. Maybe.  But I don't really want to do that as my first choice 

having test results in hand to take with you if you do need to go somewhere else would be helpful. So I definitely think getting an appointment wtih a cardiologist ASAP for echocardiogram and ecg (that second one is less likely to show anything, but good to have), and regular doctor for CBC and full iron panel and organ function is a big priority. Once you have those results you will be able to decide where to go if you need more info. 

[PeterPan]

21 minutes ago, busymama7 said:

Yes.  But I don't know how to find that. I looked at Johns Hopkins but it looked like you needed to be either local or able to travel for follow up which I can't do at least at this point. I mean I suppose I *could* fly there and stay at a hotel and maybe since I'm likely immune for another month it could work. Maybe.  But I don't really want to do that as my first choice 

On the other hand, you might learn enough in the first session that you wouldn't need to go (would have learned what you can do locally, what to look for) or would conclude it would be worth it. 

I don't know, when I don't know what to do, I start calling people and just act dumb. Like if you don't know what to do, talking with them might get you something. 

Have your symptoms *worsened* with time or are they stable? That's the other thing I'd be concerned about. 

I'd rather have a telechat with one person who might know something than tons of tests from someone who has no clue.

[Not_a_Number]

12 minutes ago, PeterPan said:

I'd rather have a telechat with one person who might know something than tons of tests from someone who has no clue.

Yeah, that’s where I’m coming from.  I have way more faith in people who actually have expertise in a specific thing.

Edited January 4, 2021 by Not_a_Number

[busymama7]

It looks like the UC davis long covid clinic will see non locals and it's closer if I do have to travel. Not sure how it will work if I need tests like an echocardiogram locally but I'm going to call them for an appointment and see what happens. 

[busymama7]

16 minutes ago, PeterPan said:

On the other hand, you might learn enough in the first session that you wouldn't need to go (would have learned what you can do locally, what to look for) or would conclude it would be worth it. 

I don't know, when I don't know what to do, I start calling people and just act dumb. Like if you don't know what to do, talking with them might get you something. 

Have your symptoms *worsened* with time or are they stable? That's the other thing I'd be concerned about. 

I'd rather have a telechat with one person who might know something than tons of tests from someone who has no clue.

No they haven't worsened.  

 

[Not_a_Number]

11 minutes ago, busymama7 said:

It looks like the UC davis long covid clinic will see non locals and it's closer if I do have to travel. Not sure how it will work if I need tests like an echocardiogram locally but I'm going to call them for an appointment and see what happens. 

Ooh, UC Davis. I’ve been there! Pretty campus... 

[Clemsondana]

All of the symptoms that you are describing, minus the headaches, were what sent me to the allergist.  I was actually trying to get my allergies under control before what I thought was going to be a long, drawn-out process of finding out what I had that made me feel so awful - I had planned to start wtih the easy thing first.  It turned out that treating my allergies treated everything.  

I'm not saying that you have allergies, but my allergist said that it was mostly systemic inflammation causing everything.  People who have issues with diet and histamines complain about some of the same things, which makes sense if it's all hyper immune system-driven problems.  I've also had an infection (something normal like a bad cold) kick off some sort of allergy-like purgatory as I was recovering.  I don't know what to tell you about treating it - last time I used a mix of antihistamine and I think sudafed, but I don't know if that would be OK in your situation.  

[busymama7]

55 minutes ago, Clemsondana said:

All of the symptoms that you are describing, minus the headaches, were what sent me to the allergist.  I was actually trying to get my allergies under control before what I thought was going to be a long, drawn-out process of finding out what I had that made me feel so awful - I had planned to start wtih the easy thing first.  It turned out that treating my allergies treated everything.  

I'm not saying that you have allergies, but my allergist said that it was mostly systemic inflammation causing everything.  People who have issues with diet and histamines complain about some of the same things, which makes sense if it's all hyper immune system-driven problems.  I've also had an infection (something normal like a bad cold) kick off some sort of allergy-like purgatory as I was recovering.  I don't know what to tell you about treating it - last time I used a mix of antihistamine and I think sudafed, but I don't know if that would be OK in your situation.  

One if the doctors videos I watched from the UK was recommending a low histamine diet and to take anithistamines. I can't remember what she was calling the problem but it sounded promising. I do have allergies although no obvious symptoms at the moment. Usually just seasonal or some animals.  

[Clemsondana]

A low histamine diet is fairly easy, so that wouldn't be bad to try.  I love Indian food, but something in it causes a histamine response so I'm selective about eating it, unfortunately.  But, if it isn't otherwise contraindicated, maybe trying a benedryl before bed might be worth a shot - it doesn't sound like you're likely to wake up feeling worse, anyway.  Early on I saw the recommendation to take benedryl if you got covid - I think it was maybe to help suppress the overactive immune response or inflammation, maybe?  I hope you find something that helps.  

[JumpyTheFrog]

On 1/2/2021 at 7:20 PM, busymama7 said:

heart racing with the minimum of activity/movement, dizziness and weakness/shakiness.

 

On 1/3/2021 at 10:44 AM, caayenne said:

This is just a shot in the dark, as your symptoms sound so close to mine, but maybe you have developed POTS (Postural Orthostatic Tachycardia Syndrome).

I was also thinking she might have POTS or at least low blood pressure. Back when I had what people call "adrenal fatigue" and later Chronic Fatgiue Syndrome I used to get lightheaded easily. I began salting my water, which helped. As my health improved, I no longer needed to salt my water for everyday activities but still needed to when exercising. Now I only salt my water if it's a hot day and I have soccer. Occasionally I will feel unexpectedly tired (or unmotivated) and if I have some salt water I usually perk up within an hour.

Busymama7, I know you feel overwhelmed. I'd like to suggest that for four days you add salt to your water to see if it helps. When I needed it most, it didn't taste gross. I think that was a sign that my body needed it. (I tend toward lower blood pressure even when well.)

[lulalu]

Sorry, just seeing this now. 

Dh has had long term no taste or smell. Going on 9 months now. 

I had long term exhaustion. It lasted for close to 3 months. I just took it slow. Took zinc, vit. C and D. We had nothing else going on for those months. I got winded just walking through our apartment. 

If you feel it is more with your heart I would make an appointment. When we were going through all this the hospitals in our city were closed except for emergency. So we couldn't get in. 

When I had COVID I only was ill for 3 days. Dh was ill for 10 days. I feel like he recovered (except for smell and taste) faster than I did. I don't know if that really makes much difference, but I don't know. 

[BeachGal]

I absolutely love ozone therapy. As long as you don't breathe it in, it's extremely safe and was used in the US before antibiotics. It's been used by other countries for longer periods of time. Everyone in our family has been using it to prevent Covid. Some of us have tested positive for antibodies but none of us have had symptoms. Regardless, if you want to read about how it's being used to treat Covid, the WHO has info on their site and on another thread, I linked a video of Mark Hyman (Bill Clinton's MD) interviewing Italian MD/PhD, Paulo Tordiglione, who has been using it on patients in Italy with quite good results, even people who were about to die. Hyman suggested using ozone at the beginning of the pandemic. If you are interested in it, I'd suggest speaking to MDs who are offering it here in the US. There is a site where you can type in your zip code and get a list of HCWs who offer it.

IV Vitamin C does seem to be helping some long haulers. You can get that done at an IV drip business. Many are run by MDs who've been working with long haulers.

Ivermectin and/or the kind of niacin that causes flushing, nicotinic acid (start small despite what the advice is -- 25-50 mg), has been helping some.

At this point, the virus probably caused a lot of damage to cells throughout your body. Those cells don't clear out quickly and can sit and fester for a long time, even years, causing inflammation. They are ornery and not quite dead but also not alive, a bit like some of my kids during their teen years. One way to clean up that festering cellular debris (induce autophagy) is to fast. If you think you could handle a fast for a day or two, there's a way to measure blood glucose and ketones that is seen when people are in autophagy. However, if fasting would be too brutal, you could also eat within a period of time each day, ideally starting soon after waking and ending around 5:00 pm. For every hour that you eat after 5:00 pm, c-reactive protein increases exponentially (this is circadian biologist Satchin Panda's research). You don't want to increase inflammation. You can have water and, if you must, unsweetened, pure herbal teas after 5:00 pm but that should be about it because you don't want your liver to get signals that it needs to metabolize food. The liver needs to begin winding down and then the body will begin to move into cleanup mood. The results won't be as intense as a non-food fast, but they're not bad either.

If you think you have POTS, ask your doctor about taking low-dose naltrexone. Some POTS people are also deficient in choline and betaine. You can find out how much choline you need at Chris Masterjohn's site as well as his recommendations for what foods/supplements he recommends. Another promising treatment is vagal toning to tamp down histamine. I'm not sure what device they use for POTS, though. I own two Sensate vagal toning devices but I think you'd need something that clips on the earlobe or elsewhere. I'm not sure. The expert on vagal toning is Stephen Porges (polyvagal theory) but if you search for POTS and vagus nerve, you'll find studies and more information.

If you have allergies that you think might be making your symptoms worse, ExACT Immunoplasty might be worth trying.

I agree with ruling out cardio problems first and then working with someone who specializes in POTS.

Good luck. I hope you find something that helps.

Edited January 5, 2021 by BeachGal

[Jean in Newcastle]

@BeachGalreminded me that I take low-dose naltrexone and have found it very helpful for my immune system.  In my situation I didn't feel like it affected inflammation as such (since I still had a lot of inflammation even after starting it and being on it for years) but I went from going to the ER with serious infections 2 or 3 times a year to no ER visits for the last five years (or something - I'm really bad at remembering the passage of time).  It also helped to dampen my pain levels  - so what used to be a 5 on the pain scale went to about a 2 or 3. 

[Garga]

I wish I’d kept track of where I got this. But I copied this a few weeks ago off of a thread on WTM about dealing with brain fog.  

Here’s what I copied, but this is all the information I have. It’s also supposed to be good for fatigue:

 

Brain fog helps:

The thinking is that Covid is causing NAD+ depletion. NAD stands for nicotinamide adenine dinucleotide. NAD+ is a form of NAD. Here’s an explanation of what it is and what it does:

https://www.jillcarnahan.com/2020/11/11/what-is-nad-and-why-is-it-important/

 

This article discusses NAD+ depletion in more depth and what you can do to build it back up.

https://nkalex.medium.com/the-team-of-front-line-doctors-and-biohackers-who-seem-to-have-solved-long-covid-5f9852f1101d

Simply, their theory is that COVID19 causes NAD+ depletion. Some people with vitamin deficiencies, existing NAD+ depletion or genetic deficiets in energy metabolism have long term NAD+ dysfunction. The body tries to make up for low NAD+ by feeding in tryptophan, which is the precursor for serotonin, causing low serotonin. Mast cells are activated locally to release serotonin instead, leading to histamine release and mast cell activation issues. Neurological effects are due to low serotonin and NAD+, which also effects the microbiome and general homoeostasis. Energy disruptions are specific to high metabolically active tissues such as the heart and brain. This is further complexed with disruption of the gut-immune axis, mobilization of bacteria, secondary infections - both bacterial and reactivation of dormant neurotrophic viruses. Reactivation of dormant Epstein-Bar virus can open the door to bacterial infections and it is known to trigger the creation of complex and unrelated auto-antibodies, leading to downstream issues.

The group treating this mechanism utilizes:
Nicotinic acid (most important and not nicotinamide or other forms)
Vitamin C
Vitamin D
Zinc
Selenium
Quercetin

 

Are you taking any of the above supplements? The nicotinic acid corrects the NAD+ deficiency, so you might want to give that a try (50 mg of nicotinic acid) as well as the others if you’re not taking them

 

The long haulers who have had success with this notice their brain fog, sleepiness, fatigue, etc. abate or go away completely within a couple of days, especially after taking the nicotinic acid. You might have trouble finding 50 gram supplements but 100 mg seems to not cause problems. Some people have been dividing their supplements to get the smaller dose.

Get a quercetin supplement that also has bromelain; however, if you have either a history of ulcers or are allergic to pineapple, take only quercetin. I take the Now brand of both, just one capsule.

Selenium, no more than 200 mcg.

Zinc, around 50 mg.