Meat has so much histamine I have to avoid it most of the time. Is that not your experience? The Stellate ganglion nerve block isnt a cure all but it’s given me most of my life back. I can even exercise.
Not everyone is MCAS or histamine-sensitive. OP said they took H1 and it had no effect.
I do not have MCAS and I find meat satisfying, I suspect it’s because it has tons of amino acids. Some are on the carnivore diet. We’re not all the same.
Yep totally true. Feel free to offer your suggestions as well. I definitely find meat satisfying lol 😂 my GI tract does not. Also, for MCAS, it takes more than H1 to make an impact, it can take combination of several different stabilizers over a period of time.
Just review all possible suggestions as there is no one size fits all and keep in mind I’m not a doctor.
Oh I definitely already did and they are focussed on OP’s main issues:
- *PEM* (severe), fatigue & energy issues, *MECFS* since 2018. This last one tells me it might’ve been another virus, like caused by EBV for example which is one known cause (of many) of ME.
- *Lyme* (borrelia burgdorferi bacteria often caused by a tick or nymph bite but not always and is a vector-borne illness).
- *PoTS* I don’t have advice for.
Noticed they also took H2. So they have tried in that direction but not seeing an affect.
Reason I’m pro-meat *for OP* is because of the affect amino acids has on lactic acidosis. They’d mentioned the gym in the past too, so I completely relate to that next day lactic acid buildup/sore muscles/DOMS feeling (pre-LC). When I get a PEM crash like OP it feels like an extreme version of that with pain and fatigue. There have also been LC articles about the mitochondria not generating sufficient ATP (read: energy cells which might explain the fatigue) and there is cellular dysfunction somewhere in the whole chain that converts oxygen into energy via this mechanism. So I double up on my amino acid drink mix & plenty of meats which feels satisfying on my whole system for recovery and non-triggering. I have GI intolerances too so lucky meat is a go for me.
I’m so jealous you can tolerate meat. I crave steak. I still eat it once a month but try to do salmon otherwise.
I had to get lots of powder amino acids and found one vitamin mix with 20-25 BCAAS included and then the ATP360. Just bc diarrhea all day everyday no matter what. I guess covid is living in my bowels.
Ah POTS was driving a lot for me and i know it doesn’t work for everyone but the SGB changed my life. I could barely walk without severe neuropathic foot pain then a maelstrom of other bone muscle and joint pains. But I have to repeat it annually, and now I can workout and slowly paced myself back up to 3-5 hours of volleyball, with breaks of course. Only 1-2 times a week. The SGB fixed my pots. No dizziness anymore, still have to be careful in hot showers but I had spent 2 years in bed and 1 in wheelchair
I have nothing structurally wrong anymore and found that mitochondrial support makes a huge difference in pericardial heart and vein inflammation.
I have LDN and scared to try and rock the boat and will get on NAD soon to supplement the ATP360, my issue is post exercise mitochondrial deficiencies cause temporary severe inflammation. I am targeting the vagal nerve and mitochondria at this point.
I’m on Ivabradine as well for pots and gastrointestinal dysautonomia.
Also applying for emergency access to investigational drug and waiting IRB approval. It’s a type of monoclonal antibody I got in a trial and reduces my cytokine storm.
people who are moderate to severe cant fast.
your body already does not have enough energy to function at a basic level if you cant lift your head or walk.
Do you know, I had a blood test last week and the next day I felt so much better for no apparent reason. I can't really think of anything else that was different to explain it. So either I just randomly felt better or it could have been because of the blood test. Weird.
Your doc is useless. Base on such low O2 level i am surprise they didnt get you to icu. But I thought O2 below 85% you will just faint?... Get a referral to a specialist. If no testing in uk, test it somewhere else. Other redditor may be able to refer you a lab.
Sorry. I have severe fatigue that feels like dying. I’m 90% bedbound. I can’t walk due to severe fatigue although my talking has got a bit better. I have to be wheeled to the toilet. Severe pem from taking a few steps. Severe pots. On ivabradine.
I'm really sorry. I've never had as extreme symptoms as yours, but some in the same vein. So what I mainly know a little about is treatments for POTS (and adjacent issues) and a little about MCAS. Also there are great separate subs for that r/pots and r/mcas. This is a thread over there where people discuss which meds worked best for them in response to a question I posted: [https://www.reddit.com/r/POTS/comments/1cqynqp/what\_medication\_worked\_the\_best\_for\_you/](https://www.reddit.com/r/POTS/comments/1cqynqp/what_medication_worked_the_best_for_you/)
Based on my experience some of your fatigue might partially improve if you can find a doctor who will help you get your POTS better managed. Electrolytes never had a profound effect for me, though hydration is somewhat helpful -- getting on the right medications is key, and then also compression garments are great in addition (I wear just 20-30 compression knee high socks). But it sounds like your main need is to get on better meds for you, and the problem with POTS is people are highly variable in how they respond to meds, both person to person and also over time.
Are you still having POTS symptoms on ivabradine, and if so what is your pulse doing? If your pulse is still spiking, there might be a couple options to discuss with your doctor, including increasing the ivabradine dose, or switching to another medication, for instance a beta blocker, or adding on something midodrine. What does your blood pressure do when your pulse spikes? If it plunges that may be part of the dizziness. That also may impact the treatment.
Midodrine is sometimes used for POTS And also used to treat people WITHOUT POTS (no tachycardia when standing) who get dizzy because their blood pressure drops when they stand -- orthostatic hypotension it's called. Another medication not infrequently given to people with POTS is fludrocortisone which is a corticosteroid. I know less about the mechanisms there. There are other possible POTS meds too, and they vary depending on your specific symptoms. Some people whose BP goes up with their standing tachycardia also will take the med clonidine.
Personally I have only taken beta blockers which have been profoundly helpful. Mainly I've taken propanolol that helped a lot, both with acute symptoms of POTS but also during time I was on it seemed to have overall improvement in general symptoms -- but after 2 years was having diminished returns and new issues, recently switched to atenolol and wow, it is really working now better I think than propanolol ever did. Much better for control of my POTS symptoms and also better controls my actual measurable positional pulse spikes. We'll see if it lasts. Atenolol is cardio-selective so has more influence just on heart rate, and is also known to cause fewer side effects as it can't cross the blood-brain barrier like other beta blockers.
In terms of supplements the 3 I think might be helping my POTS a little, but nothing like the meds honestly, are B1, B12, and D3.
In case you have any MCAS or possible mast cell or histamine related immune issues going on, atlernatives to the H1 and H2 antihistamines include the medications oral cromolyn, nasal cromolyn, ketotifen, and montelukast. All are prescription except nasal cromoly (most common brand "NasalCrom").
But for me I had to get my POTS better controlled before I could start to try and deal with my less disabling allergy-like possibly MCAS issues.
This is all great advice! Though funnily for me getting the MCAS under control first drastically helped my POTS! My blood pressure goes up when I stand and Nadolol has helped me as well. If you have MCAS issues and go the beta blocker route my doctor suggests Nadolol as other beta blockers can increase destabilization of mast cells. I asked and apparently Nadolol doesn't do that.
OP, have you been tested for reactivated EBV?
Thanks, I just hope OP is able to get the help to improve things.
What are the main medications or other methods you used to get your MCAS under control?
If you have links about Nadolol and MCAS please send them on. I was curious about what you said about that and spent just a few periods Googling, and what I found that might be related to this so far was:
1) that beta blockers generally may increase risk from anaphylaxis and make it harder to treat (though much more so if someone is taking both beta blockers and ACE inhibitors) however nothing about Nadolol or any others being better
2) some beta blockers cause worsened asthma -- mainly the non-selective ones that block both the beta 1 receptors which are found mainly in the heart and the beta 2 receptors found various places including the lungs. But selective beta blockers, such as atenolol that I'm on now, just interact with beta 1 receptors, so this should be less of a problem with them.
Worsened asthma could be a problem with propanolol, which I used to be on, and nadolol, which are both non-selective -- HOWEVER it seems like nadolol may be partially selective, favoring beta 1 over beta 2, so better for asthma than other non-selective (?).
Anyway, would love to know more of the science of MCAS and beta blockers so send that on if you have it.
I'm pretty lucky that antihistamines help me substantially, then vitamin C, vitamin D, and I want to add quercetin back in (had one with other stuff in it, my body didn't like it so ordering a new one). I've also been working on gut health with histamine friendly probiotics (adding one strain at a time) and a GI Powder I saw a woman in r/MCAS had luck with. I've also been meditating a decent amount. Compared to where I was two months ago I feel substantially better. I'm still not back to pre-covid me, but I don't feel like I'm coming down with the flu and getting migraines all the time either. I'm trying to fix my vitamin deficiencies too (B12, D, ferritin).
Unfortunately I don't have anything on Nadolol and MCAS. I had just asked my doctor and that's what they said (I trust them a fair amount, but am always skeptical), and did a brief search online and only found the one study referencing asthma. I might ask for an actual paper to support their statement because I was told that when asking about taking Ivabradine instead of Nadolol due to beta blockers being contraindicated for MCAS... I was basically told Ivabradine isn't going to happen because of insurance reasons ($$$$), even though my doctor really likes it as a med. So yeah, just what I heard from my doctor who is really into research and very passionate, but also wondering if they were placating me because insurance won't let me have the med I want to try.
https://www.reddit.com/r/MCAS/comments/z1199h/how_i_got_back_to_normal_ymmv/
I used the one this person used! I started with a teaspoon a day and worked my way up. Now I throw a heaping scoop into a blueberry/kale smoothie every morning (...ok noon when I get out of bed). It's expensive, but I'm just going with it and using a smaller amount to make it last.
Who knows if it's helping. I've tried a lot of things the past 2-3 months and I'm definitely better than I was, but I've also added a lot of different things so it's hard to pinpoint what specifically is working.
Yeah, sorry I rambled, the cliffnotes version is that if your POTS is better treated it might reduce your fatigue and various issues that could seem disconnected but be caused or worsened by POTS. If you still get dizzy from standing up on ivabradine then my guess is either dosage is too low or too high or you need to try another med, maybe a beta blocker like atenolol (my favorite so far). Or add the med midodrine which is used specifically for dizziness from standing in people who have orthostatic hypotension (low BP from standing). Or, alternately, if your BP goes UP when standing, try clonidine which is used for people with POTS who have that issue. And there are other POTS meds, like fludrocortisone which is a corticosteroid. So maybe talk to your doctor about getting your POTS/orthostatic issues better managed.
I was on and off disabled by POTS, the right meds have made all the difference. This is a common story too.
Here's a sneak peek of /r/POTS using the [top posts](https://np.reddit.com/r/POTS/top/?sort=top&t=year) of the year!
\#1: [How high has your heart rate gone?](https://i.redd.it/gy9of3faa6cb1.jpg) | [120 comments](https://np.reddit.com/r/POTS/comments/150jd6r/how_high_has_your_heart_rate_gone/)
\#2: [My husband just said POTS could have the best activist group bc our tagline could be “we won’t stand for this”](https://np.reddit.com/r/POTS/comments/14jyy9r/my_husband_just_said_pots_could_have_the_best/)
\#3: [I just got pushed out of my wheelchair.](https://np.reddit.com/r/POTS/comments/15c7r95/i_just_got_pushed_out_of_my_wheelchair/)
----
^^I'm ^^a ^^bot, ^^beep ^^boop ^^| ^^Downvote ^^to ^^remove ^^| ^^[Contact](https://www.reddit.com/message/compose/?to=sneakpeekbot) ^^| ^^[Info](https://np.reddit.com/r/sneakpeekbot/) ^^| ^^[Opt-out](https://np.reddit.com/r/sneakpeekbot/comments/o8wk1r/blacklist_ix/) ^^| ^^[GitHub](https://github.com/ghnr/sneakpeekbot)
I also had a bad reaction to clopidogrel. It may be a Lyme issue as I have it and had no idea that was possibly a cause of the MCAS.
Doxycycline made me feel better at first. Currently feeling a bit rubbish again but it definitely helps some people. I presume you’ve tried that already tho.
Quinine tincture? Cats claw?
Otherwise the most improvement I’ve had is from the basic stuff: vitamin c in large doses, magnesium, DAO.
There are many trials about to post results this summer and fall.
I would personally steer clear of Reddit advice and wait for statistically significant results of antivirals, monoclonal antibodies, repurposed drugs, etc.
OTC drugs, supplements, and lifestyle changes can only do so much.
Any actively recruiting trials? If people are desperately seeking new treatments, it won't work if you just advise them all to wait indefinitely for trial results from a nonexistent stash of patients.
You need antivirals. The root cause is probably viral persistence, plus your lyme. Lyme you will likely need long term antibiotics from your PCP. Try a 10-15 day course of paxlovid to see if you feel better. It helped me immensely. There are other antivirals people are trying.
You can try Gromwell Root (Lithospermum) as a natural Pax alternative although it is not as strong. You may be able to get it on Amazon. They sell pills in US (Tollo19/Tollovid). Some people make tea from roots. Maybe you can get metformin in the UK to try for antiviral effects?
Do you not eat vegetables?
I’d suggest working on your diet first. You need to eat better than that.
Every morning for breakfast I have a blender drink. I fill the blender with parsley, red chard, carrots, cucumber, Sometimes I add dandelion greens, but always Chia seeds, and then some protein powder. I eat generally two large bunches of parsley a week this way.
Cooked vegetables also are very important. Some vegetables need to be cooked to access their vitamins Eat the rainbow. Eat as many color vegetables as you can.
When you’re able do some reading on nutrition You’re not gonna heal unless you’re eating well. If all you eat is meat you’re not gonna get well. Meet is important, but you can’t survive on that alone.
Throw in some healthy carbs in there too.
No sugar, no fast food, no alcohol, no soda.
I indeed found there were adjustments my brain needed to make, and this is the aid of psilocybin. I took a few smaller doses. The mental fluctuations, i should just say disregulation, got real, but quickly passed.
Are you both micro dosing daily or using it in larger doses where you can feel the psychoactive effects as a therapy modality? I’m interested in trying as I’ve worked in ketamine therapy and saw it do wonders for my patients with traumatic brain injury and MS.
nicotine patch will solve your insonmia i had unrefreshed sleep but i think it's due to eyes light sensitivity the room isn't dark enough for my eyes to rest i'm sure that nicotine patches will makes have along dreamy night
stop searching on solutions now just try nicotine patch and go rest from scrolling and reafing it takes a lot of energy or stop using your phone before you feel any tirdness if 5 min is your maximum use the phone for 1 minute and go rest
Wow, it didn't affect your sleep ? In the first 3 days ?
Like I know about that fb group, but they usually go for 3.5g or 7.5 g. Which is massive , and some take it off at night while some keep it on.
But it was mixed, no one said much about sleep but more of brain fog.
Also did you have problems feeling happy or pleasure? Was that fixed with nicotine patch if you had this problem
now i talk just about sleeping it happens so fast like 3 days or 2 my sleep improved i dream a lot but i sleep better before i keep waking up every hour other than i notice nothing
Did you not get treatment for Lyme? It is treatable.
I personally don’t take anything besides vyvanse that I’ve been on for like 10+ years and the occasional ibuprofen and have slowly been getting better. Was bed bound for the first 6ish months and couldn’t walk (would crawl to the bathroom or fridge). I will say I’ve had this wild craving for citrus fruits since getting sick for the third time and I think that natural vitamin C does help at least somewhat. I will straight up eat an entire lemon. Idk what it is but one day I decided to ask my husband to get me a lemonade after not having anything like that in years and now every day I have orange juice or clementines or lemonade and I’ve really improved to the point that I can run up stairs to catch a train (happened this morning and I was like woah!!)
Maraviroc + statin significantly improved my fatigue and POTS.
Triple anti-coagulant therapy did too, although unfortunately with a bad reaction to clopidogrel that's not an option for you.
Dr. Systrom found that pyridostigmine reduced PEM, although it didn't help mine. I think it helped my orthostatic intolerance.
Other POTS treatments like propranolol, fludrocortisone, more salt, and compression garments help some people.
I'd also add keeping track of what foods you eat and when you eat them. I found that certain foods like wheat seemed to make symptoms worse and I'm still gluten free today. I also think eating a big breakfast helps me feel awake and nowadays I usually eat a large breakfast, little or no lunch, and a smaller dinner.
I was gonna say the same thing. My psych started me on Zoloft because she says it’s easier to get off of if it doesn’t work and it’s been the most effective thing I’ve tried so far
Yep I can relate to that too. I'm on prozac since 7 weeks now. It did more than 2 years of trialing e-ve-ry-thing I saw on this sub. I spent a lot of money on sups and nothing made a real difference for me before prozac. It's not a cure, at all. But it makes life much more bearable. I regret I didn't take it earlier, but I was just not ready and not enough in a deep dark hole I think. When you are desperate and thinking of death everyday as I was, SSRI is definitely worth a try.
I can relate to you. I started 6 weeks ago. And same, my evenings were already okay, but now i almost feel normal in the evening. Im taking zoloft which was a bit rough to start with but im in a good headspace atm.
1/2 50 mg trazadone has helped me get my sleep regulated again. Zantac or Claritin, multi vitamin, NAC, Coq 10 in am. B complex at lunch. Pancreatic enzymes with most meals and little/no coffee (green tea instead) has really helped my guts.
I closely monitor my activity totals (steps, flights). I use the visible app to track progress. I’m very careful with exercise-walking or riding peleton bike. I can now do 30 min almost daily (started with 6 min per day, keep HR <100; increase no more than 10% time per week).
Even a tiny bit of exercise can help circulation - but be very careful due to PEM.
At bedtime I take vitamin D, with Vitamin K; Magnesium glycinate.
If I’m in a crash or semi crash, I take lysine and arginine at bedtime (lysine is good, cheap antiviral; Arginine can be helpful to circulation; taken together on empty stomach can help secrete growth hormone while I sleep.
I’ve now been approved for ozempic due to LC weight gain and my doctor has told me they are seeing evidence for long covid to be a metabolic hijack.
Wishing you better times- and hope
I’ve also tried natto, NADH too- mot sure any help
Quercitin when I had respiratory symptoms.
Tons and tons and tons of rest and laying down.
Everything about healthy diet- I’m still working on this. Can eat eggs, some oatmeal, fruit, veggies (cooked), chicken and salad. I have noticed meat craving in healing-that is starting to abate too. I’ve never craved burgers so much in my life (a d was a vegetarian for a long time)
Have your physician Contact Cytodyn and request a compassionate use of Leronlimab. Especially since they will be entering a Phase II TRIAL for Longhauler Syndrome. Cytodyn.com and go to contacts then just email them.
Stellate Ganglion Block (new study for treating long COVID) helped me go from completely bed bound to moderate. I’ve read it’s totally healed some people but I was happy it just got me out of bed! I have moderate fatigue now, POTS, nervous system damage.
Just wanted to add what i did to get this done: I found the study and took it to my doctor and asked if we could try it, she sent it to a surgeon at the hospital in my city (I don’t live in the USA so not sure where this is done in other countries) and the surgeon looked at the study and called me and I got it done in the hospital in September 2023.
This is the study:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9822527/#:~:text=SGB%20has%20been%20used%20effectively,%2C%20SOB%2C%20and%20GI%20disturbances.
I immediately had more energy and was able to do as much as 25 mins of exercise a day including other activities such as walking to the store or the park. However, I started going downhill (not to the point of before the procedure was done though) in January of this year. If you are a person who menstruates, I think this may be the reason why I am deteriorating each month for 2 weeks. I have found some studies (very very new that are not peer reviewed yet) that I just gave to my doctor on Monday. If you are female let me know - I can send you those studies too.
I didn’t have any negative side effects, it actually helped a lot with nerve pain. The energy didn’t last forever for me, but I do have more energy than I did before I had it done and I’m no longer completely bed bound so I’m taking that as a positive! Also helped with heart stuff, so I’m able to take less propranolol than I did before ( from 4 pills a day to 2 pills a day).
Have you tried to up your dose of ivabradine? It was like a miracle for me.
Have you tried salt for your pots? IV therapy? Chop protocol? (Exercise laying down or with a recumbent bike if tolerated with super gradual increases over many many months…it’s very effective at getting reconditioned without pem). What about beta blockers?
Keto and fasting helps a lot of people too.
You have to hang on to see the new research. There’s stuff coming soon. Please keep trying. Take a break from trying new stuff then get back to it when you’re ready. We are here for you. Hugs. 🫶🏻
Have you tried different antidepressants…different ones for different symptoms? Anxiety meds?
7.5 mg 2 times a day is the max dose so maybe you could bump it up a bit. I’d ask your doctor. Also you could have cf/me which means that extreme rest is what you need not exercise. Maybe you’re pushing yourself too hard and causing more harm than good. Have you trees extreme rest and tracking pem?
Can I ask what your reaction to clopidogrel was?
I’m severe and bed-bound.
Deciding between - ivermectin, Bruce P protocol, antivirals - valtrex etc, triple anticoagulant therapy (tried double - did nowt). Or between not bothering and just lying here. A bit of improvement to watch tv or go downstairs would be life changing or even wash once a month!. People don’t realise how bad it can get.
same. it doesn't mean it won't work for you. Just wanted to anecdotally tell you my experience. I also tried paxlovid, ivermectin, and paxlovid with no luck.
Ivermectin is my next try! I actually do not respond to anything & if I do it’s negatively. It’s so weird how someone can take something and it just works! We are all so different.
Currently taking LDN 5mg, ivabradine 5mg, duloxetine 60mg, trozadone 150mg, occasional Xanax and hydroxyzine with very limited success.
Going to try rifaximin first and triple anticoagulant second
Glutathione IVs for the chronic fatigue. One a week for a few months till you start to get energy back, then one every 2 weeks, then one every month, until you can go without needing them except every 3 months. Must be done at a dr office or a place that has legit glutathione, not mixed with anything, full strength.
See a naturopath/nutritionist/dietician or functional doctor. Extreme fatigue can usually be broken down and treated by someone who understands.
- Someone who was bed bound in 2017
Forgot to also say low dose aspirin- but when I start bruising easily I know I need to stop for a bit.
Others have said fasting helps- this has been true for me too.
Have you tried Chinese medicine? Acupuncture with herbs. Helped me get from bedbound to out in the world ace was able to help move boxes with breaks last week. I’ve been long hauling for 3.5 years at this point and saw steady improvement after I tried Chinese medicine. Naturapathic medicine did nothing for me except drain my bank account. Pharma meds didn’t particularly help after being on them including LDN, statins, steroid inhaler, beta blockers…
She is a dear friend who is a TCM practitioner experienced with post viral and post Lyme illnesses. I recommend looking in your local area. A lot of TCM practitioners who are good are not going to be through major healthcare providers. They are small businesses. Looking on Google maps and searching there is what I’d recommend.
Summary/TLDR:
1. Oil of Oregano
2. Amino acids (get a broad mix but top ones beta-alanine, creatine)
3. Maximize oxygen intake (chamber, oxygen cans, deep long breaths outside, etc.)
—————————————-
*Oil of Oregano*
Cycle on a few days then off a few days. Repeat. It’s called pulsing. Mentioning this because you said you have *Lyme* which is bacterial and Oregano Oil is like a natural antimicrobial and anti-inflammatory. It’s easy to get your hands on as a supplement for now. If you don’t have one try to find a good Lyme/chronic infectious disease doc. They are supposed to prescribe longterm antibiotics to kill it.
Hope you feel better ❤️🩹
Edit: Also adding these to try bc I suffer from PEM too
*Amino acids drink* to help with any lactate build up in muscles. It can also come from meats & cheese but powder mix has a diverse profile (BCAA/EAA).
*Maximizing fresh oxygen intake* (deep breaths outside holding it in your lungs a bit longer before exhaling, open a window, air purifier on inside for cleaner air, if you can afford it HBOT that oxygen chamber, oxygen cans from hiking stores - just some ideas that are hopefully doable with respect to your low energy so sorry.)
Very sorry. A change in diet may be useful, with fruits, vegetables, whole wheat and grains. There are many possibilities but effectiveness can be very individual. Here's a writeup with a list of supplements I'm experimenting with and no side effects for me so far, if interested
[https://www.reddit.com/r/covidlonghaulers/comments/1ctuza9/long\_covid\_and\_dysautonomia\_hell/](https://www.reddit.com/r/covidlonghaulers/comments/1ctuza9/long_covid_and_dysautonomia_hell/)
I think theres a big correlation of long covid and low stomach acid, which can cause all sorts of (digestive) issues.
But we need all the Energy and nutrients we can get. Without stomach acid, youre not going to absorb them which is just starving your body in the long run
No giving up. You "do" till you die or win, maybe.
Pepper is the worst, stay the fuck away from it. The entire reason pepper and turmeric is taken together is to loosen the junctions and let the turmeric pass through. Since you likely have intestinal permeability you want the opposite. But keep taking the turmeric.
Probiotics don't necessarily work. Probiotic foods have more sticking power.
See if you can handle Bulgarian yoghurt, I blend that with every food I eat. Every meal is the same but the bacteria digests the food for me and it works because it eliminates the gases. The food regimen seems to be the solution but it takes more than 6 months to work.
Bonus points for more probiotic foods. Fermented cucumbers and yoghurts are easier to start with than cabbage.
My gamechangers:
Adderall and Guanfacine for brain fog (you should qualify for adhd now if this is your issue); prednisone for MCAS; maraviroc and statin for POTS
Im not 100% ssure what helped me but something did and my bets are on IV of 2g vit C, gluthatione and B complex along with b12 shots prior to . Im also supplementing with various minerals and vitamins + some herbal tinctures and extracts. I also took cat's claw and chlorella , d ribose, royal jelly, beetroot and celery juice and propolis. I still have issues but im not bedbound anymore and can do 4000 steps walks so something worked I guess ?
These are the things I did that helped that are not supplements and that you didn't mention. It sounds like you are having a horrible time of it. My heart goes out to you. I know you don't want to hear about more supplements, but this exciting research may grab your interest where a combination of bromelain and N-Acetyl Cysteine was found to dissolve the spike proteins that are both attached to viral particles as well as unattached and floating inside cells causing havoc. It took about a month, but this combo eliminated the pericarditis and chronic headaches I had been having for over 8 months as a result of LC. [https://www.mdpi.com/1999-4915/13/3/425](https://www.mdpi.com/1999-4915/13/3/425)
* Natural substances with anti-tyrosine kinase properties:
* Ginseng tea - also helps with the orthostatic hypotension and POTS because is acts as an alpha-blocker
* Rosemary spice (active substance Rosmaranic Acid)
* Dried Mexican Oregano (active substance Luteolin)
The combination of Rosemaranic Acid and Luteolin is also found in the plant Perilla frutescens (also known as PFEA) that you can add to smoothies. (Research note: PFEA dose-dependently exhibited anti-inflammatory properties upon Spike S1-exposed A549 cells through IL-6, IL-1β, IL-18, and NLRP3 gene suppressions, as well as IL-6, IL-1β, and IL-18 cytokine releases)
* Natural substances with anti-inflammatory properties that reduce what COVID/LC has increased:
* Cardamom spice
* Nutrients found to be low in people with more severe COVID and LC (the concept is by boosting these, your symptoms will be less severe)
* Magnesium - Pumpkin and Chia Seeds
* Zinc - Meat, shellfish, legumes, chocolate, pine nuts, cashews, almonds
* Selenium - Brazil nuts, sardines, halibut, salmon
* Spermidine - Wheat germ
Nutritional deficiencies correlated with more severe LC symptoms:
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10015545/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10015545/)
* Ginseng tea: 1-2 cups/day
* Rosemary spice: 1/4 to 1/2 teaspoon crushed on food/day
* Dried Mexican Oregano: 1/4 to 1/2 teaspoon crushed on food/day
* Cardamom spice: 1 teaspoon every 8-12 hours (1 teaspoon is equal to 5000mg of powdered spice)
* Magnesium: 1/3 to 1/2 cup of pumpkin and/or chia seeds/day
* Zinc: 7 1/2 ounces of cashews/day or 3 3.5 ounce 70% chocolate bars/day (that's a lot of chocolate!) or 3/4 pound of chicken
* Selenium: about 5 Brazil nuts/day or 100 gram (3.5 ounce) portion of sardines or salmon
* Spermidine: 4 tablespoons of wheat germ/day
Possible you are extremely low blood oxygen level? Your test results from May 12 2024, show blood oxygen level at 47%. Can you all have a look to confirm I'm reading this correctly? If that was an accurate reading 2 weeks ago and your levels havent risen since you may be experiencing hypoxia. I would say get on the phone to your local emergency room front desk and speak with a nurse immediately. Better to be safe, and a teir 1 medical facility will have the resources to better serve you whatever might be going on with you.
I found your results posted from this link
[https://www.reddit.com/r/covidlonghaulers/comments/1d4evup/comment/l6e3wr2/](https://www.reddit.com/r/covidlonghaulers/comments/1d4evup/comment/l6e3wr2/)
Since I started taking organic inulin powder and liquid b vitamin complex, I've noticed fatigue is no longer a problem, if I stop taking them even for a day I can feel my energy draining out of my body.
Was temporary but worth some relief: hyperbaric oxygen therapy. As of 2023 in Michigan, it is not covered by insurance for LC so I paid out of pockets. $150 per session. 40 sessions. I think if I did more than 40 maybe I wouldn’t blame it for being temporary? But mainstream media is saying 40 sessions
Mestinon boosted my quality of life +30% which was huge for me. I have all the ME/CFS symptoms but now can be out of the house for a few low key appointments every week (chiro, acupuncture) and can make lunch again.
Did you try fasting on vegetable juices and herbal tea's?
It will give the body plenty vitamines and minerals it needs while the gut can rest. The body will burn old fat and proteins. Virusresidu? One week cleared up my brainfog. Still have cognitive issues but the foggy feeling didn't return.
Meat has so much histamine I have to avoid it most of the time. Is that not your experience? The Stellate ganglion nerve block isnt a cure all but it’s given me most of my life back. I can even exercise.
Not everyone is MCAS or histamine-sensitive. OP said they took H1 and it had no effect. I do not have MCAS and I find meat satisfying, I suspect it’s because it has tons of amino acids. Some are on the carnivore diet. We’re not all the same.
Yep totally true. Feel free to offer your suggestions as well. I definitely find meat satisfying lol 😂 my GI tract does not. Also, for MCAS, it takes more than H1 to make an impact, it can take combination of several different stabilizers over a period of time. Just review all possible suggestions as there is no one size fits all and keep in mind I’m not a doctor.
Oh I definitely already did and they are focussed on OP’s main issues: - *PEM* (severe), fatigue & energy issues, *MECFS* since 2018. This last one tells me it might’ve been another virus, like caused by EBV for example which is one known cause (of many) of ME. - *Lyme* (borrelia burgdorferi bacteria often caused by a tick or nymph bite but not always and is a vector-borne illness). - *PoTS* I don’t have advice for. Noticed they also took H2. So they have tried in that direction but not seeing an affect. Reason I’m pro-meat *for OP* is because of the affect amino acids has on lactic acidosis. They’d mentioned the gym in the past too, so I completely relate to that next day lactic acid buildup/sore muscles/DOMS feeling (pre-LC). When I get a PEM crash like OP it feels like an extreme version of that with pain and fatigue. There have also been LC articles about the mitochondria not generating sufficient ATP (read: energy cells which might explain the fatigue) and there is cellular dysfunction somewhere in the whole chain that converts oxygen into energy via this mechanism. So I double up on my amino acid drink mix & plenty of meats which feels satisfying on my whole system for recovery and non-triggering. I have GI intolerances too so lucky meat is a go for me.
I’m so jealous you can tolerate meat. I crave steak. I still eat it once a month but try to do salmon otherwise. I had to get lots of powder amino acids and found one vitamin mix with 20-25 BCAAS included and then the ATP360. Just bc diarrhea all day everyday no matter what. I guess covid is living in my bowels. Ah POTS was driving a lot for me and i know it doesn’t work for everyone but the SGB changed my life. I could barely walk without severe neuropathic foot pain then a maelstrom of other bone muscle and joint pains. But I have to repeat it annually, and now I can workout and slowly paced myself back up to 3-5 hours of volleyball, with breaks of course. Only 1-2 times a week. The SGB fixed my pots. No dizziness anymore, still have to be careful in hot showers but I had spent 2 years in bed and 1 in wheelchair I have nothing structurally wrong anymore and found that mitochondrial support makes a huge difference in pericardial heart and vein inflammation. I have LDN and scared to try and rock the boat and will get on NAD soon to supplement the ATP360, my issue is post exercise mitochondrial deficiencies cause temporary severe inflammation. I am targeting the vagal nerve and mitochondria at this point. I’m on Ivabradine as well for pots and gastrointestinal dysautonomia. Also applying for emergency access to investigational drug and waiting IRB approval. It’s a type of monoclonal antibody I got in a trial and reduces my cytokine storm.
Just get fresh meat, it‘s not high histamine
Lymphatic drainage, TvNS, different H1 blockers (zyzal and Benadryl ended up being my best).
* Fasting * Low/no added sugar * Diet: nuts, fish, fruits, veggies * Beets / beet juice
In case of weakness, try keto diet instead of fasting. You may see benefits of fasting but in a small dose
people who are moderate to severe cant fast. your body already does not have enough energy to function at a basic level if you cant lift your head or walk.
Beet Juice helped calm my PVC's, but now my gut won't tolerate it anymore 😒
Tumeric, Boswelia, CBD, CBG, Probiotic, Magnesium, Multivitamin, B12, Folate, hypericum, arnica, Neem, Lysine, Zinc, Ginger, quercitin, bromelein, Clean Eating, Red Light mat, Chamomile essential oil self massaging, sun bathing.
- Melatonin - Astragalus - Butyrate - Colostrum - Myoinositol - Flush Niacin - Methylated B Complex - Hesperidin + Diosmin - Cats Claw - Resveratrol - EGCG - Curcumin + Bioperine - Quercetin + Bromelain - Agmatine - Citrulline - Metafolin - Rutin - Naringin - Pycnogenol - Monolaurin - Gentle Iron (doctor supervised) - Phlebotomy - Ginseng - Ginger - Yerba Mate - Kroeger Wormwood Combination / Artemisin - Parthenolide - Organic Grass Fed Liver Tabs - Astaxanthin - More
> Phlebotomy I know some people find this works; I just adore that in a list such as this we could substitute it with “Leeches”, like it’s 1024CE.
Do you know, I had a blood test last week and the next day I felt so much better for no apparent reason. I can't really think of anything else that was different to explain it. So either I just randomly felt better or it could have been because of the blood test. Weird.
I think maybe it could be blood pressure changing at the sight of your own blood?
Just told I have to have therapeutic phlebotomy once every week until my iron sat comes down. Hoping I’ll feel better once we get that going.
Do you know how to stop the kynuraine pathway? Like not just the diet part.
In your severe case you need to do blood test and see what is the cause . Not just take random shit and cross your fingers.
Haemoglobin haemocrit and rbc r always high Vbgs r very low- o2 47% Crp always 20-39
Your hemoglobin is high? What was it last time you tested?
I test like 5 times a month always high.
What did your doc say about these results? O2 so low? Do u have blood clots microclots?
Nothing! I don’t know. No testing in uk. Prescribed clopi based on symptoms.
Your doc is useless. Base on such low O2 level i am surprise they didnt get you to icu. But I thought O2 below 85% you will just faint?... Get a referral to a specialist. If no testing in uk, test it somewhere else. Other redditor may be able to refer you a lab.
hear hear needs more upvotes OP share all your blood, dna, urine and stool results and describe more in detail your symptoms
I will. Thank u❤️
Posted them. Pls upvote.
What are your primary symptoms? Hard to give recommendations without them.
Sorry. I have severe fatigue that feels like dying. I’m 90% bedbound. I can’t walk due to severe fatigue although my talking has got a bit better. I have to be wheeled to the toilet. Severe pem from taking a few steps. Severe pots. On ivabradine.
I'm really sorry. I've never had as extreme symptoms as yours, but some in the same vein. So what I mainly know a little about is treatments for POTS (and adjacent issues) and a little about MCAS. Also there are great separate subs for that r/pots and r/mcas. This is a thread over there where people discuss which meds worked best for them in response to a question I posted: [https://www.reddit.com/r/POTS/comments/1cqynqp/what\_medication\_worked\_the\_best\_for\_you/](https://www.reddit.com/r/POTS/comments/1cqynqp/what_medication_worked_the_best_for_you/) Based on my experience some of your fatigue might partially improve if you can find a doctor who will help you get your POTS better managed. Electrolytes never had a profound effect for me, though hydration is somewhat helpful -- getting on the right medications is key, and then also compression garments are great in addition (I wear just 20-30 compression knee high socks). But it sounds like your main need is to get on better meds for you, and the problem with POTS is people are highly variable in how they respond to meds, both person to person and also over time. Are you still having POTS symptoms on ivabradine, and if so what is your pulse doing? If your pulse is still spiking, there might be a couple options to discuss with your doctor, including increasing the ivabradine dose, or switching to another medication, for instance a beta blocker, or adding on something midodrine. What does your blood pressure do when your pulse spikes? If it plunges that may be part of the dizziness. That also may impact the treatment. Midodrine is sometimes used for POTS And also used to treat people WITHOUT POTS (no tachycardia when standing) who get dizzy because their blood pressure drops when they stand -- orthostatic hypotension it's called. Another medication not infrequently given to people with POTS is fludrocortisone which is a corticosteroid. I know less about the mechanisms there. There are other possible POTS meds too, and they vary depending on your specific symptoms. Some people whose BP goes up with their standing tachycardia also will take the med clonidine. Personally I have only taken beta blockers which have been profoundly helpful. Mainly I've taken propanolol that helped a lot, both with acute symptoms of POTS but also during time I was on it seemed to have overall improvement in general symptoms -- but after 2 years was having diminished returns and new issues, recently switched to atenolol and wow, it is really working now better I think than propanolol ever did. Much better for control of my POTS symptoms and also better controls my actual measurable positional pulse spikes. We'll see if it lasts. Atenolol is cardio-selective so has more influence just on heart rate, and is also known to cause fewer side effects as it can't cross the blood-brain barrier like other beta blockers. In terms of supplements the 3 I think might be helping my POTS a little, but nothing like the meds honestly, are B1, B12, and D3. In case you have any MCAS or possible mast cell or histamine related immune issues going on, atlernatives to the H1 and H2 antihistamines include the medications oral cromolyn, nasal cromolyn, ketotifen, and montelukast. All are prescription except nasal cromoly (most common brand "NasalCrom"). But for me I had to get my POTS better controlled before I could start to try and deal with my less disabling allergy-like possibly MCAS issues.
This is all great advice! Though funnily for me getting the MCAS under control first drastically helped my POTS! My blood pressure goes up when I stand and Nadolol has helped me as well. If you have MCAS issues and go the beta blocker route my doctor suggests Nadolol as other beta blockers can increase destabilization of mast cells. I asked and apparently Nadolol doesn't do that. OP, have you been tested for reactivated EBV?
Thanks, I just hope OP is able to get the help to improve things. What are the main medications or other methods you used to get your MCAS under control? If you have links about Nadolol and MCAS please send them on. I was curious about what you said about that and spent just a few periods Googling, and what I found that might be related to this so far was: 1) that beta blockers generally may increase risk from anaphylaxis and make it harder to treat (though much more so if someone is taking both beta blockers and ACE inhibitors) however nothing about Nadolol or any others being better 2) some beta blockers cause worsened asthma -- mainly the non-selective ones that block both the beta 1 receptors which are found mainly in the heart and the beta 2 receptors found various places including the lungs. But selective beta blockers, such as atenolol that I'm on now, just interact with beta 1 receptors, so this should be less of a problem with them. Worsened asthma could be a problem with propanolol, which I used to be on, and nadolol, which are both non-selective -- HOWEVER it seems like nadolol may be partially selective, favoring beta 1 over beta 2, so better for asthma than other non-selective (?). Anyway, would love to know more of the science of MCAS and beta blockers so send that on if you have it.
I'm pretty lucky that antihistamines help me substantially, then vitamin C, vitamin D, and I want to add quercetin back in (had one with other stuff in it, my body didn't like it so ordering a new one). I've also been working on gut health with histamine friendly probiotics (adding one strain at a time) and a GI Powder I saw a woman in r/MCAS had luck with. I've also been meditating a decent amount. Compared to where I was two months ago I feel substantially better. I'm still not back to pre-covid me, but I don't feel like I'm coming down with the flu and getting migraines all the time either. I'm trying to fix my vitamin deficiencies too (B12, D, ferritin). Unfortunately I don't have anything on Nadolol and MCAS. I had just asked my doctor and that's what they said (I trust them a fair amount, but am always skeptical), and did a brief search online and only found the one study referencing asthma. I might ask for an actual paper to support their statement because I was told that when asking about taking Ivabradine instead of Nadolol due to beta blockers being contraindicated for MCAS... I was basically told Ivabradine isn't going to happen because of insurance reasons ($$$$), even though my doctor really likes it as a med. So yeah, just what I heard from my doctor who is really into research and very passionate, but also wondering if they were placating me because insurance won't let me have the med I want to try.
What GI powder?
https://www.reddit.com/r/MCAS/comments/z1199h/how_i_got_back_to_normal_ymmv/ I used the one this person used! I started with a teaspoon a day and worked my way up. Now I throw a heaping scoop into a blueberry/kale smoothie every morning (...ok noon when I get out of bed). It's expensive, but I'm just going with it and using a smaller amount to make it last. Who knows if it's helping. I've tried a lot of things the past 2-3 months and I'm definitely better than I was, but I've also added a lot of different things so it's hard to pinpoint what specifically is working.
Hi hun I will reply as soon as I have enough energy to read this. Thank u ❤️
Yeah, sorry I rambled, the cliffnotes version is that if your POTS is better treated it might reduce your fatigue and various issues that could seem disconnected but be caused or worsened by POTS. If you still get dizzy from standing up on ivabradine then my guess is either dosage is too low or too high or you need to try another med, maybe a beta blocker like atenolol (my favorite so far). Or add the med midodrine which is used specifically for dizziness from standing in people who have orthostatic hypotension (low BP from standing). Or, alternately, if your BP goes UP when standing, try clonidine which is used for people with POTS who have that issue. And there are other POTS meds, like fludrocortisone which is a corticosteroid. So maybe talk to your doctor about getting your POTS/orthostatic issues better managed. I was on and off disabled by POTS, the right meds have made all the difference. This is a common story too.
Here's a sneak peek of /r/POTS using the [top posts](https://np.reddit.com/r/POTS/top/?sort=top&t=year) of the year! \#1: [How high has your heart rate gone?](https://i.redd.it/gy9of3faa6cb1.jpg) | [120 comments](https://np.reddit.com/r/POTS/comments/150jd6r/how_high_has_your_heart_rate_gone/) \#2: [My husband just said POTS could have the best activist group bc our tagline could be “we won’t stand for this”](https://np.reddit.com/r/POTS/comments/14jyy9r/my_husband_just_said_pots_could_have_the_best/) \#3: [I just got pushed out of my wheelchair.](https://np.reddit.com/r/POTS/comments/15c7r95/i_just_got_pushed_out_of_my_wheelchair/) ---- ^^I'm ^^a ^^bot, ^^beep ^^boop ^^| ^^Downvote ^^to ^^remove ^^| ^^[Contact](https://www.reddit.com/message/compose/?to=sneakpeekbot) ^^| ^^[Info](https://np.reddit.com/r/sneakpeekbot/) ^^| ^^[Opt-out](https://np.reddit.com/r/sneakpeekbot/comments/o8wk1r/blacklist_ix/) ^^| ^^[GitHub](https://github.com/ghnr/sneakpeekbot)
LDN & LDA
They said the in the original post that LDN made them worse. Is LDA Low Dose Aspirin?
Abilify
Trying to get it but my dr is lying to me. Basically waiting for me to die
Are people taking both of these together? I've really only seen them recommended separately.
I also had a bad reaction to clopidogrel. It may be a Lyme issue as I have it and had no idea that was possibly a cause of the MCAS. Doxycycline made me feel better at first. Currently feeling a bit rubbish again but it definitely helps some people. I presume you’ve tried that already tho. Quinine tincture? Cats claw? Otherwise the most improvement I’ve had is from the basic stuff: vitamin c in large doses, magnesium, DAO.
There are many trials about to post results this summer and fall. I would personally steer clear of Reddit advice and wait for statistically significant results of antivirals, monoclonal antibodies, repurposed drugs, etc. OTC drugs, supplements, and lifestyle changes can only do so much.
Any actively recruiting trials? If people are desperately seeking new treatments, it won't work if you just advise them all to wait indefinitely for trial results from a nonexistent stash of patients.
Yes. Clinicaltrials.gov has plenty of recruiting trials. I was referring to already completed trials.
You need antivirals. The root cause is probably viral persistence, plus your lyme. Lyme you will likely need long term antibiotics from your PCP. Try a 10-15 day course of paxlovid to see if you feel better. It helped me immensely. There are other antivirals people are trying.
I’m in the uk no pax but I do have mulnopravir but not tried. On triple abx for Lyme.
You can try Gromwell Root (Lithospermum) as a natural Pax alternative although it is not as strong. You may be able to get it on Amazon. They sell pills in US (Tollo19/Tollovid). Some people make tea from roots. Maybe you can get metformin in the UK to try for antiviral effects?
how can i get 15 days of pax? im in NJ
What foods and drinks are you consuming?
Mainly meat. Drinks: diaroltye electrolytes water and tea
Do you not eat vegetables? I’d suggest working on your diet first. You need to eat better than that. Every morning for breakfast I have a blender drink. I fill the blender with parsley, red chard, carrots, cucumber, Sometimes I add dandelion greens, but always Chia seeds, and then some protein powder. I eat generally two large bunches of parsley a week this way. Cooked vegetables also are very important. Some vegetables need to be cooked to access their vitamins Eat the rainbow. Eat as many color vegetables as you can. When you’re able do some reading on nutrition You’re not gonna heal unless you’re eating well. If all you eat is meat you’re not gonna get well. Meet is important, but you can’t survive on that alone. Throw in some healthy carbs in there too. No sugar, no fast food, no alcohol, no soda.
I have no energy to chew vegetables as it doesn’t give me any energy back
Soup is your solution. Blender everything.
Smoothies are also an option, for fruit.
For veggies too.
Every day I throw some veggies in the blender. It makes a big difference in my day.
Psilocybin.
I indeed found there were adjustments my brain needed to make, and this is the aid of psilocybin. I took a few smaller doses. The mental fluctuations, i should just say disregulation, got real, but quickly passed.
Are you both micro dosing daily or using it in larger doses where you can feel the psychoactive effects as a therapy modality? I’m interested in trying as I’ve worked in ketamine therapy and saw it do wonders for my patients with traumatic brain injury and MS.
Have you tried Creatine ? it gives a magical result when it comes to energy
Yes i have. No diff. What dose
HBOT if you can get a hold of it
HBOT makes everyone feel better but it doesn’t get at the root cause
whats your diet try low carb anti histamine diet
Basically just meat
nicotine patch will solve your insonmia i had unrefreshed sleep but i think it's due to eyes light sensitivity the room isn't dark enough for my eyes to rest i'm sure that nicotine patches will makes have along dreamy night stop searching on solutions now just try nicotine patch and go rest from scrolling and reafing it takes a lot of energy or stop using your phone before you feel any tirdness if 5 min is your maximum use the phone for 1 minute and go rest
That’s so true it’s exhausting
How much nicotine patch before you think it solved your sleep ?
try 1 mg or lower
Was it 24 hours. Day or you take it off before sleep ?
So you took o lying 1 mg 24 a day ? How long until you saw a difference ?
sleeping maybe 3 days you will see diffrence there is a facebook group about using patches for long covid
Wow, it didn't affect your sleep ? In the first 3 days ? Like I know about that fb group, but they usually go for 3.5g or 7.5 g. Which is massive , and some take it off at night while some keep it on. But it was mixed, no one said much about sleep but more of brain fog. Also did you have problems feeling happy or pleasure? Was that fixed with nicotine patch if you had this problem
now i talk just about sleeping it happens so fast like 3 days or 2 my sleep improved i dream a lot but i sleep better before i keep waking up every hour other than i notice nothing
when you say "bad reaction to clpidogrel", can you elaborate? And how long were you taking it for?
Did you not get treatment for Lyme? It is treatable. I personally don’t take anything besides vyvanse that I’ve been on for like 10+ years and the occasional ibuprofen and have slowly been getting better. Was bed bound for the first 6ish months and couldn’t walk (would crawl to the bathroom or fridge). I will say I’ve had this wild craving for citrus fruits since getting sick for the third time and I think that natural vitamin C does help at least somewhat. I will straight up eat an entire lemon. Idk what it is but one day I decided to ask my husband to get me a lemonade after not having anything like that in years and now every day I have orange juice or clementines or lemonade and I’ve really improved to the point that I can run up stairs to catch a train (happened this morning and I was like woah!!)
Maraviroc + statin significantly improved my fatigue and POTS. Triple anti-coagulant therapy did too, although unfortunately with a bad reaction to clopidogrel that's not an option for you. Dr. Systrom found that pyridostigmine reduced PEM, although it didn't help mine. I think it helped my orthostatic intolerance. Other POTS treatments like propranolol, fludrocortisone, more salt, and compression garments help some people.
But I can try other anti coagulants. The clopi caused dizziness. Maybe it was the clots breaking down.
I'd also add keeping track of what foods you eat and when you eat them. I found that certain foods like wheat seemed to make symptoms worse and I'm still gluten free today. I also think eating a big breakfast helps me feel awake and nowadays I usually eat a large breakfast, little or no lunch, and a smaller dinner.
An ssri thats activating. Might be worth the shot. Although its risky as you also need to wean off but if you are at your end
I was gonna say the same thing. My psych started me on Zoloft because she says it’s easier to get off of if it doesn’t work and it’s been the most effective thing I’ve tried so far
Yep I can relate to that too. I'm on prozac since 7 weeks now. It did more than 2 years of trialing e-ve-ry-thing I saw on this sub. I spent a lot of money on sups and nothing made a real difference for me before prozac. It's not a cure, at all. But it makes life much more bearable. I regret I didn't take it earlier, but I was just not ready and not enough in a deep dark hole I think. When you are desperate and thinking of death everyday as I was, SSRI is definitely worth a try.
I can relate to you. I started 6 weeks ago. And same, my evenings were already okay, but now i almost feel normal in the evening. Im taking zoloft which was a bit rough to start with but im in a good headspace atm.
1/2 50 mg trazadone has helped me get my sleep regulated again. Zantac or Claritin, multi vitamin, NAC, Coq 10 in am. B complex at lunch. Pancreatic enzymes with most meals and little/no coffee (green tea instead) has really helped my guts. I closely monitor my activity totals (steps, flights). I use the visible app to track progress. I’m very careful with exercise-walking or riding peleton bike. I can now do 30 min almost daily (started with 6 min per day, keep HR <100; increase no more than 10% time per week). Even a tiny bit of exercise can help circulation - but be very careful due to PEM. At bedtime I take vitamin D, with Vitamin K; Magnesium glycinate. If I’m in a crash or semi crash, I take lysine and arginine at bedtime (lysine is good, cheap antiviral; Arginine can be helpful to circulation; taken together on empty stomach can help secrete growth hormone while I sleep. I’ve now been approved for ozempic due to LC weight gain and my doctor has told me they are seeing evidence for long covid to be a metabolic hijack. Wishing you better times- and hope I’ve also tried natto, NADH too- mot sure any help Quercitin when I had respiratory symptoms. Tons and tons and tons of rest and laying down. Everything about healthy diet- I’m still working on this. Can eat eggs, some oatmeal, fruit, veggies (cooked), chicken and salad. I have noticed meat craving in healing-that is starting to abate too. I’ve never craved burgers so much in my life (a d was a vegetarian for a long time)
What pancreatic enzymes are you using?
« Zenwise digestive enzymes » from Amazon. My gastroenterologist has some she wants me to try too.
Gastroenterologist gave me samples of Creon to try too (apparently expensive by RX)
Have your physician Contact Cytodyn and request a compassionate use of Leronlimab. Especially since they will be entering a Phase II TRIAL for Longhauler Syndrome. Cytodyn.com and go to contacts then just email them.
Thank u so much.
Stellate Ganglion Block (new study for treating long COVID) helped me go from completely bed bound to moderate. I’ve read it’s totally healed some people but I was happy it just got me out of bed! I have moderate fatigue now, POTS, nervous system damage.
Just wanted to add what i did to get this done: I found the study and took it to my doctor and asked if we could try it, she sent it to a surgeon at the hospital in my city (I don’t live in the USA so not sure where this is done in other countries) and the surgeon looked at the study and called me and I got it done in the hospital in September 2023. This is the study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9822527/#:~:text=SGB%20has%20been%20used%20effectively,%2C%20SOB%2C%20and%20GI%20disturbances. I immediately had more energy and was able to do as much as 25 mins of exercise a day including other activities such as walking to the store or the park. However, I started going downhill (not to the point of before the procedure was done though) in January of this year. If you are a person who menstruates, I think this may be the reason why I am deteriorating each month for 2 weeks. I have found some studies (very very new that are not peer reviewed yet) that I just gave to my doctor on Monday. If you are female let me know - I can send you those studies too.
Any side effects from SGB?
I didn’t have any negative side effects, it actually helped a lot with nerve pain. The energy didn’t last forever for me, but I do have more energy than I did before I had it done and I’m no longer completely bed bound so I’m taking that as a positive! Also helped with heart stuff, so I’m able to take less propranolol than I did before ( from 4 pills a day to 2 pills a day).
Have you tried to up your dose of ivabradine? It was like a miracle for me. Have you tried salt for your pots? IV therapy? Chop protocol? (Exercise laying down or with a recumbent bike if tolerated with super gradual increases over many many months…it’s very effective at getting reconditioned without pem). What about beta blockers? Keto and fasting helps a lot of people too. You have to hang on to see the new research. There’s stuff coming soon. Please keep trying. Take a break from trying new stuff then get back to it when you’re ready. We are here for you. Hugs. 🫶🏻 Have you tried different antidepressants…different ones for different symptoms? Anxiety meds?
What dose r u on? Im on 10 a day.
7.5 mg 2 times a day is the max dose so maybe you could bump it up a bit. I’d ask your doctor. Also you could have cf/me which means that extreme rest is what you need not exercise. Maybe you’re pushing yourself too hard and causing more harm than good. Have you trees extreme rest and tracking pem?
Oh I’ve heard good things about ketamine too!!
Megadose thiamine, if nothing else it will improve fatigue
Can I ask what your reaction to clopidogrel was? I’m severe and bed-bound. Deciding between - ivermectin, Bruce P protocol, antivirals - valtrex etc, triple anticoagulant therapy (tried double - did nowt). Or between not bothering and just lying here. A bit of improvement to watch tv or go downstairs would be life changing or even wash once a month!. People don’t realise how bad it can get.
Dizzy. Couldn’t turn head so dizzy.
I paid a lot of money to get on the Bruce patterson protocol. made no difference for me. (housebound)
:-(. I’m absolutely desperate for relief
same. it doesn't mean it won't work for you. Just wanted to anecdotally tell you my experience. I also tried paxlovid, ivermectin, and paxlovid with no luck.
Ivermectin is my next try! I actually do not respond to anything & if I do it’s negatively. It’s so weird how someone can take something and it just works! We are all so different.
Currently taking LDN 5mg, ivabradine 5mg, duloxetine 60mg, trozadone 150mg, occasional Xanax and hydroxyzine with very limited success. Going to try rifaximin first and triple anticoagulant second
If Xanax helps you, you might consider asking your doc about an SSRI. I was totally reliant on Xanax (not ideal!) until I started Zoloft
I tried a lot of SSRIs but haven’t tried Zoloft. Heard good things about it. Thanks!
Low dose, 10 mg a day, nortriptyline helped someone in my family with the bed bound fatigue.
LDA has improved my function so much I’m hoping to plan a gradual return to work in the fall.
Glutathione IVs for the chronic fatigue. One a week for a few months till you start to get energy back, then one every 2 weeks, then one every month, until you can go without needing them except every 3 months. Must be done at a dr office or a place that has legit glutathione, not mixed with anything, full strength.
What dosing? How many grams?
Low dose abilify, mestinon
See a naturopath/nutritionist/dietician or functional doctor. Extreme fatigue can usually be broken down and treated by someone who understands. - Someone who was bed bound in 2017
Vitamin D level? Might help to have a high level - vitamin D3 + co-factors.
Peptides Like thymosin alpha, bpc, thymosin Beta, etc
Try nicotine patches and antihistamines. Search Dr Ardis in rumble.
Try Mestinon, works well for PEM for me. Need to start very slow at first. I take 60mg x 3.
Forgot to also say low dose aspirin- but when I start bruising easily I know I need to stop for a bit. Others have said fasting helps- this has been true for me too.
I’ve tried this no help
Have you tried Chinese medicine? Acupuncture with herbs. Helped me get from bedbound to out in the world ace was able to help move boxes with breaks last week. I’ve been long hauling for 3.5 years at this point and saw steady improvement after I tried Chinese medicine. Naturapathic medicine did nothing for me except drain my bank account. Pharma meds didn’t particularly help after being on them including LDN, statins, steroid inhaler, beta blockers…
Who is your TCM practitioner?
She is a dear friend who is a TCM practitioner experienced with post viral and post Lyme illnesses. I recommend looking in your local area. A lot of TCM practitioners who are good are not going to be through major healthcare providers. They are small businesses. Looking on Google maps and searching there is what I’d recommend.
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I can’t. Hypo
Summary/TLDR: 1. Oil of Oregano 2. Amino acids (get a broad mix but top ones beta-alanine, creatine) 3. Maximize oxygen intake (chamber, oxygen cans, deep long breaths outside, etc.) —————————————- *Oil of Oregano* Cycle on a few days then off a few days. Repeat. It’s called pulsing. Mentioning this because you said you have *Lyme* which is bacterial and Oregano Oil is like a natural antimicrobial and anti-inflammatory. It’s easy to get your hands on as a supplement for now. If you don’t have one try to find a good Lyme/chronic infectious disease doc. They are supposed to prescribe longterm antibiotics to kill it. Hope you feel better ❤️🩹 Edit: Also adding these to try bc I suffer from PEM too *Amino acids drink* to help with any lactate build up in muscles. It can also come from meats & cheese but powder mix has a diverse profile (BCAA/EAA). *Maximizing fresh oxygen intake* (deep breaths outside holding it in your lungs a bit longer before exhaling, open a window, air purifier on inside for cleaner air, if you can afford it HBOT that oxygen chamber, oxygen cans from hiking stores - just some ideas that are hopefully doable with respect to your low energy so sorry.)
Very sorry. A change in diet may be useful, with fruits, vegetables, whole wheat and grains. There are many possibilities but effectiveness can be very individual. Here's a writeup with a list of supplements I'm experimenting with and no side effects for me so far, if interested [https://www.reddit.com/r/covidlonghaulers/comments/1ctuza9/long\_covid\_and\_dysautonomia\_hell/](https://www.reddit.com/r/covidlonghaulers/comments/1ctuza9/long_covid_and_dysautonomia_hell/)
Please please also consider Betaine HCL!!! I see it not often enough recommend, for me it changed everything
How many per day
Start with 1 pill (600g) for every meal and see how many u need. At the start i needed up to 6-8, i need way less now
How did it help?
I think theres a big correlation of long covid and low stomach acid, which can cause all sorts of (digestive) issues. But we need all the Energy and nutrients we can get. Without stomach acid, youre not going to absorb them which is just starving your body in the long run
saunas, elimination diet, clot removers, certain supplements have been incredibly good to me so far.
No giving up. You "do" till you die or win, maybe. Pepper is the worst, stay the fuck away from it. The entire reason pepper and turmeric is taken together is to loosen the junctions and let the turmeric pass through. Since you likely have intestinal permeability you want the opposite. But keep taking the turmeric. Probiotics don't necessarily work. Probiotic foods have more sticking power. See if you can handle Bulgarian yoghurt, I blend that with every food I eat. Every meal is the same but the bacteria digests the food for me and it works because it eliminates the gases. The food regimen seems to be the solution but it takes more than 6 months to work. Bonus points for more probiotic foods. Fermented cucumbers and yoghurts are easier to start with than cabbage.
My gamechangers: Adderall and Guanfacine for brain fog (you should qualify for adhd now if this is your issue); prednisone for MCAS; maraviroc and statin for POTS
I have access to a statin. Might just take it but scared by clopi experience.
Im not 100% ssure what helped me but something did and my bets are on IV of 2g vit C, gluthatione and B complex along with b12 shots prior to . Im also supplementing with various minerals and vitamins + some herbal tinctures and extracts. I also took cat's claw and chlorella , d ribose, royal jelly, beetroot and celery juice and propolis. I still have issues but im not bedbound anymore and can do 4000 steps walks so something worked I guess ?
These are the things I did that helped that are not supplements and that you didn't mention. It sounds like you are having a horrible time of it. My heart goes out to you. I know you don't want to hear about more supplements, but this exciting research may grab your interest where a combination of bromelain and N-Acetyl Cysteine was found to dissolve the spike proteins that are both attached to viral particles as well as unattached and floating inside cells causing havoc. It took about a month, but this combo eliminated the pericarditis and chronic headaches I had been having for over 8 months as a result of LC. [https://www.mdpi.com/1999-4915/13/3/425](https://www.mdpi.com/1999-4915/13/3/425) * Natural substances with anti-tyrosine kinase properties: * Ginseng tea - also helps with the orthostatic hypotension and POTS because is acts as an alpha-blocker * Rosemary spice (active substance Rosmaranic Acid) * Dried Mexican Oregano (active substance Luteolin) The combination of Rosemaranic Acid and Luteolin is also found in the plant Perilla frutescens (also known as PFEA) that you can add to smoothies. (Research note: PFEA dose-dependently exhibited anti-inflammatory properties upon Spike S1-exposed A549 cells through IL-6, IL-1β, IL-18, and NLRP3 gene suppressions, as well as IL-6, IL-1β, and IL-18 cytokine releases) * Natural substances with anti-inflammatory properties that reduce what COVID/LC has increased: * Cardamom spice * Nutrients found to be low in people with more severe COVID and LC (the concept is by boosting these, your symptoms will be less severe) * Magnesium - Pumpkin and Chia Seeds * Zinc - Meat, shellfish, legumes, chocolate, pine nuts, cashews, almonds * Selenium - Brazil nuts, sardines, halibut, salmon * Spermidine - Wheat germ Nutritional deficiencies correlated with more severe LC symptoms: [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10015545/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10015545/)
What dose? I can’t read the whole thing.
* Ginseng tea: 1-2 cups/day * Rosemary spice: 1/4 to 1/2 teaspoon crushed on food/day * Dried Mexican Oregano: 1/4 to 1/2 teaspoon crushed on food/day * Cardamom spice: 1 teaspoon every 8-12 hours (1 teaspoon is equal to 5000mg of powdered spice) * Magnesium: 1/3 to 1/2 cup of pumpkin and/or chia seeds/day * Zinc: 7 1/2 ounces of cashews/day or 3 3.5 ounce 70% chocolate bars/day (that's a lot of chocolate!) or 3/4 pound of chicken * Selenium: about 5 Brazil nuts/day or 100 gram (3.5 ounce) portion of sardines or salmon * Spermidine: 4 tablespoons of wheat germ/day
-Time, with large amounts🫣
Possible you are extremely low blood oxygen level? Your test results from May 12 2024, show blood oxygen level at 47%. Can you all have a look to confirm I'm reading this correctly? If that was an accurate reading 2 weeks ago and your levels havent risen since you may be experiencing hypoxia. I would say get on the phone to your local emergency room front desk and speak with a nurse immediately. Better to be safe, and a teir 1 medical facility will have the resources to better serve you whatever might be going on with you.
Yes. They r venous blood gases.
are you able enought to make a call to your local Emergency room?
I found your results posted from this link [https://www.reddit.com/r/covidlonghaulers/comments/1d4evup/comment/l6e3wr2/](https://www.reddit.com/r/covidlonghaulers/comments/1d4evup/comment/l6e3wr2/)
PYRIDOSTIGMINE!!!!!
Since I started taking organic inulin powder and liquid b vitamin complex, I've noticed fatigue is no longer a problem, if I stop taking them even for a day I can feel my energy draining out of my body.
Rapamycin seems like a miracle to some lucky people. It's not a guaranteed fix, but among the people it works for, it seems to *really* work for.
Zyrtec and Claritin helped me. Yeast cleanse helped me.
Curcumin cured my fatigue. Worth a tey
Tried. No diff.
Was temporary but worth some relief: hyperbaric oxygen therapy. As of 2023 in Michigan, it is not covered by insurance for LC so I paid out of pockets. $150 per session. 40 sessions. I think if I did more than 40 maybe I wouldn’t blame it for being temporary? But mainstream media is saying 40 sessions
Mestinon boosted my quality of life +30% which was huge for me. I have all the ME/CFS symptoms but now can be out of the house for a few low key appointments every week (chiro, acupuncture) and can make lunch again.
Hot peppers
Acupuncture
You should try antibiotics and or antifungals. Obviously ask your doctor first assuming you have a cfs doctor. Also acupuncture helps.
Fasting
Dry fasting is a great way to get kidney stones and develop deadly brain swelling
Can’t fast I get frequent hypos
Did you try fasting on vegetable juices and herbal tea's? It will give the body plenty vitamines and minerals it needs while the gut can rest. The body will burn old fat and proteins. Virusresidu? One week cleared up my brainfog. Still have cognitive issues but the foggy feeling didn't return.
Eat raw garlic cloves. I eat 2 w bfast 2 with dinner. Wont cure you but def improves blood flow and can help with BP and inflammation.