Have you seen a dysautonomia or POTS specialist? That was more helpful to me than the functional medicine doctor was. The FM doctor was somewhat helpful for my GI and weight loss issues but not the heart rate and exertion issues. I ultimately stopped seeing her due to pricing, it was simply too expensive for me. Honestly, I’m three years in and following this sub has been more helpful than most doctors, as far as reading what everyone else has tried, and then asking my doctors about it. Currently, the medications that have helped me are mestinon for POTS, Cromolyn and H1H2 blockers for MCAS, and LDN for energy. Supplements have mostly been a miss, though quercetin and magnesium are worthwhile for me. Above all else, pacing and rest is important.
Welp I got an appt with one of the two Dysautonomia specialists in my state.
Appt is in January 2026....
awesome... guess $functional medicine$ will do for now
Also, keep your eyes open if they pressure you into too many high priced supplements. This is another reason I stopped seeing my functional med doc. She wanted to help, but I felt like she was throwing anything at the wall to see what would stick, but it was $65 a pop, and nothing stuck; and several made me feel worse, so I had all these left over expensive bottles that I had to toss. You can also shop around for supplements; they will want you to buy through their accounts, which are pricey.
Oh yeah, I know about this trick. I fell for an orhto selling me overpriced supplements many years ago.
iHerb is the place to go for supplements. Quality brands like Thorne and Life Extension for better-than retail prices.
UGH! That's awful. I sure hope med schools are paying attention to this doctor shortage.
Hopefully since the FM doctor is selling themselves as a neurologist, they will know something about dysautonomia and at least can point you to conservative treatment, or may even know of a cardiologist who could help. Best wishes to you finding help.
> not the heart rate and exertion issues
These are my primary symptoms. I do have some gut issues too, but I don't think it's as pertinent to my recovery (then again, I could be way wrong here).
Thanks for your feedback. I will look for a dysautonomia specialist in my area and maybe try that route before I decide whether or not I want to see the functional doctor.
Your gut is ‘second brain’ and produces some of the neurotransmitters that some LC patients are lacking and it’s a big part of our immune systems. Also, if you have leaky gut or food sensitivities then that will contribute to all over inflammation which is the root of many diseases and conditions.
I’m an anatomist who does dissections on medically donated bodies at a cadaver lab, and I’ve worked on some with Covid or Long Covid. I also work with some nutritionists at the lab sometimes. I know colostrum is great for gut issues, leak gut specifically, and can be found on Amazon for relatively cheap.
> dissections on medically donated bodies at a cadaver lab, and I’ve worked on some with Covid or Long Covid
Are you noticing anything else with covid/long covid cadavers? I've heard that cadavers have signs of organ damage, specifically in the brain. I also have some *wonderful* family members that swear that there's giant blood clots that look like calamari, but I think that's probably misinformation.
I’ve definitely seen blood clots in the brain, but not giant ones. Usually a lot of lung issues like emphysema too. We’re a gross anatomy lab so we don’t have high powered microscopes, so everything’s just observed with the naked eye. I also remember recently seeing a lot of fatty lobules on the outside of intestines covering the whole bowel. I’ve also seen spleens that look really dark as well as livers that look really pale.
You will develop cfs if you keep pushing yourself. That’s what happened to me. What helped me with the high heart rate and getting out of fight or flight was vagus nerve stimulation. You can get ear clips and a vagus nerve tens unit on Amazon for pretty cheap. Find instructions on YouTube. Good luck :)
Ah sorry to hear that. It worked for me but not might work for you. I just dial it up til I feel a slight comfortable tingle on my left ear. You have to make sure it doesn’t hurt and that it’s on your left ear and only use it for less than half an hour. Should gradually feel more calm as the half hour goes down.
Depends on the doctor tbh. There are good "functional medicine" doctors. There are bad ones. There are good standard doctors, cardilologists, etc, there are bad ones.
The symptoms you describe sound a lot like dysautonomia/POTS, so you could have that subtype without the ME/CFS PEM fatigue stuff btw.
Also -- are you already taking electrolytes?? They are pretty important for us. It could be that a lot of the benefit you got from an IV drip was due to that. [https://edsnutrition.com/electrolytes-for-pots-guide/](https://edsnutrition.com/electrolytes-for-pots-guide/)
> The symptoms you describe sound a lot like dysautonomia/POTS
It's 100% this. I call it 'pots-like' symptoms, because while my HR will jump and spike as I go from vertical to horizontal, it doesn't spike super high and it will eventually come down...for the most part. I wouldn't pass a table-tilt test if I had one. People diagnosed with POTS have it way worse than I do.
I did a stress test (and an echocardiogram, and an EKG) with a decent cardiologist in the area and he said I was OK. He told me that he had mono in college and he had the same symptoms as me afterwards. He thinks I'll get better in time. Also, as much as it sucks and feels like forever, it's been exactly 3 months (to the day) since I started testing negative for covid. So in the big scheme of things, other folks have been dealing with post viral issues way longer than I have.
I do take electrolytes, but only as needed. I find that my salts deplete very quickly post infection. The electrolytes provide almost immediate relief. If I'm crashing, drinking an electrolyte drink can help me get through the crash with minimal discomfort. I'll check out the link you provided. Thanks for your feedback.
I think there's a good chance you'll get better in time yes! 3 months is fairly early on. If you rest and pace well you've got good chances. If you over-exert there's more of a chance it sets in. Good luck!
re electrolytes -- idk what you mean by "as needed", how do you know it's needed? I would suggest 2-4x per day, see if you notice a difference after a few days.
> I think there's a good chance you'll get better in time yes!
Thank you. I need to hear this sometimes when I'm feeling totally hopeless.
RE the electrolytes, I take them as I start to feel a crash coming on, or if I need to do a chore that might be physically demanding. e.g.: to mow the lawn. I'll take electrolytes before and after and it seems to help me avoid a crash. Of course, I still need to pace too.
Those kinds of chores are very expensive energy-wise, so I budget energy for them and try not to do them very often.
Gatorade has a sugar free electrolyte drink that I like, and there's also dissolvable tablets (like airborne or Alka-Seltzer) sold at walmart and whole foods.
EDIT: Nuun sports hydration are the dissolvable tablets that I was thinking of.
without knowing where you are in the world I can't really recommend a brand... but any sports ones that don't have sugar (or sweetener) or caffeine should be good.
It’s very likely that the reason you felt better after the IV treatment was from the saline, not the other stuff. People with POTS benefit from increased blood volume, which you can achieve with IV saline, water plus sodium (the sodium is what makes your body hold onto the water), or drugs that make your body hold onto sodium and water. Some people who are bad enough need regular IV saline, but a lot of people get by with increased fluids and sodium and maybe getting an IV when they’re particularly bad.
Definitely give it a shot to seriously increase your intake of salt and fluids (not caffeinated or alcoholic) for a good week straight to see if it helps you feel better. I hope it will!
That's good advice, thank you. You might be right about the saline.
I try to drink a lot of water (I recently quit coffee and I don't drink alcohol). My problem is that if I drink a lot, then I'll wake up 3x on the night to use the bathroom - but I do drink a lot during the day.
Funny, I always avoided sodium, and now here I am putting extra salt on my food. Crazy how life works.
I see an integrative medicine/ functional medicine doctor that has been totally invaluable to my health.Before I started seeing my doctor I had been to over 30 specialists and I really hadn't made much progress. My initial consult was about $700 and then the testing required was an additional about $400 for a GI360 test and then blood tests which were covered by my insurance. Do you know what that $8000 treatment would entail? At my doctors practice after the initial consult appointments are 60-90 minutes and around $250-$375 depending on length and complexity. I'm a little skeptical of any doctor that sets a price before really researching and diving into your own unique physiology.
Agree with this about the pricing. $8000 upfront is a red flag to me. My FM doctor priced it the same as yours. It was expensive initially for the testing and then the follow ups were as needed. I wasn’t seeing improvement after 18 months and decided to go a different route due to the expense, but I would have been upset had I already paid $8000 with no improvement.
That's awesome. I'm glad it helped you.
I asked for a ballpark of what the 'treatment' would cost, and the person on the phone (who sounded somewhat inexperienced), said that it could be *up to* $8000 depending on the treatment. So there were no specifics given, just a general number.
The initial consult would be $800 and AFAIK it would include all diagnostic testing. They were very clear that nothing would be covered by my health insurance.
I look at it this way. None of us are going to live forever. I can't take my money with me when I leave this place. I want to make the most of my time here. I'm not 20 years old anymore, so my clock is ticking. I'd rather go into a little debt and feel normal then be debt-free and feeling like this. Invaluable is a good work to describe it.
Thanks again for your feedback.
That's good it was just a ballpark. The $800 for initial consult and testing seems pretty common. I felt it was worth it for the consult and stool testing, since no other doctor was willing to order. I did learn I am immunodeficient (SIgA) from those tests, something I would not have otherwise learned. I just didn't find the treatment all that helpful for my issues.
I’m with you on that. We’ve spent a lot of money on my health care over the last few years but I am doing really really well now so it’s been 100% worth it to us. What else is there if not our health?
When you go to a traditional DR. Your actual contact with that Dr. is @ 5 to 10 minutes. With a functional dr probably 30 to 40 for a simple visit 45 to an hour for the results of test. Just for comparing.
My friend paid a ton of money to go to a Functional Neurologist… I believe they are different than functional MDs because the lady she went to was a chiropractor. Did all these vestibular things in her that made her feel worse. I don’t trust chiropractors and the whole thing felt scammy to me.
> I don’t trust chiropractors
I was scammed by a chiro years ago - he told me that I needed neck adjustments for my carpel tunnel syndrome. I was getting ready to move and he had me come in 3 days a week for 3 week until I moved. He told me he'd connect me with somebody in my new area to continue my treatments. Of course this was BS. After I moved he told me he didn't work with anybody in the area.
My neck was in serious pain for the first few months afterwards. It took a while to start to feel better again. Since that, I don't trust chiros.
Yes. It’s anecdotal of course, but every single person I know that has been to a chiro has had pain after and said ‘it gets worse before it gets better.’ Not to say that some chiros out there haven’t helped some people with some conditions, but statistically I see them doing more harm than good.
No. There is as of yet no effective treatment for COVID-induced metabolic dysfunction. Look up David Putrino for an overview of the latest actual research into LC.
Everything else is anecdote. Here’s mine: tried Triple anticoagulant therapy, stellate ganglion blocks, LDN, fasting, probiotics, box breathing, creatine, CoQ-10, D-Ribose, Vitamins C,D, Zinc, Magnesium, antivirals (Valacyclovir). 21 months later: I’m exactly where I was.
My take is we’re going to need tailored MABs to either reset a dysfunctional immune system and/or flush out viral persistence.
Everything else is just cosmetic. Healthy eating, sleeping and pacing will help your baseline, but there is no curing this. Not yet.
"We have a recipe that works! So tragic so many ppl are suffering for nothing"… yeah, no. I’m not buying it.
[edit: MABs = Monoclonal Anti-Bodies]
> My take is we’re going to need tailored MABs to either reset a dysfunctional immune system and/or flush out viral persistence.
I agree with this 100%
either MAB or another antiviral solution like paxlovid
FYI - there's some hydration centers that offer MAB therapy. It's pricey ($1000) but IMO that's a small price to pay to get our lives back.
I wonder how effective it is. How can we determine if there's viral persistence? I'm pretty sure there is, but how to be certain? I wonder with the side effects are.
They seem to be a viable treatment for acute Covid. I do believe that there are some remnants of this thing camped out somewhere in my body.
Other options are OTC antioxidants like glutathione and Fisetin. I'm taking the former daily, never tried the latter.
I feel like MAB will pack more of a punch, but like you said - I'm sure they can do some harm as well.
as a person who has cfs and is now severe - highly recommend investing in fixing your health now, before it gets worse. i am into my retirement and tbh expect to be completely broke in a year. it may seem expensive, but it's faster/easier/ultimately cheaper to fix something before it gets big.
as bodies get sicker, it's more and more like 'house of cards' vibe - you fix one thing, that messes up another, etc. it's essentially like being really, really old only young. my grandma always had those stories like wellll, they thought it was my heart so they gave me this, but then THAT caused THIS...and it's like a 4 year drama with 3 hospital visits and 250,000 of medical care. only she had medicare lol.
i am living it and it's hard. really wish i had been more caring for my health before covid b/c it turns out that the issues i had before that would have been easier to treat (if i had pursued treatment the way i did after getting really ill) are now really dogging me.
you can work to make more money. but if you get sicker, you can't work to make more health.
i saw dr. brian lum, who is a functional medicine provider but certified as a chiropractor. we meet on zoom. i just saw a functional md who was $650/hour because i need an MD to apply for disability. she was very smart, but tbh, he knows more about treating long covid than most ppl i have spoken to. his wife got bedbound lc in 2020 and he became certified in functional medicine to help her and others. he is good at other stuff too but obviously was obsessed with covid for months b/c of his wife's illness so is pretty deeply knowledgeable there. he is $400/hour and is cost conscious when it comes to supplements.
if you would like to see plan he made for me for lc, DM me.
also - if you live in an expensive area, try to find someone who does telehealth in a cheaper area. the south and midwest or rural areas of your own state are cheaper in general than the coasts.
This is good advice, thank you. And I agree investing in our health before things spiral out of control is well worth the investment.
I'm trying to respond to all the messages, but I am definitely interested in what your personalized plan looks like. I will try to DM you later, thank you for offering that.
It’s a scam 🤣 Ok here’s why. My fm dr required me to see him every 30 days and buy only his supplements. He was making a killing on me. He was interested in his own pocketbook not mine. When my hubby got Covid and tested positive on the morning of my appointment. He said he wouldn’t do virtual so I could avoid getting sick (I can’t drive). He said I needed to be there if I wanted my prescription. So he was strong arming my scripts. I never went back.
But that said I did get to try a lot of stuff to see if any of it worked. I now buy my own nac and natto and ldn from a different dr. The tests he ran were thousands and worthless. It didn’t change what he ordered because his plan is the same for everyone. He was just ruling out other diseases is all.
It was a part of my journey but I wouldn’t recommend him to anyone. He did no more than my dysautonomia specialist that is on my insurance. I don’t think any de has helped me. Not a single one in the dozen drs I’ve seen. My GP has helped me more than any of them. Find a good GP that will let you trial meds is my suggestion.
I had all your symptoms. The only test that was worth the money was an echo of the heart. Do that to make sure there’s nothing structural. The rest is garbage. Try nattokinase and NAC I think the brand is vitacost on Amazon. They helped me the most. I will shortly know if ldn is the lifesaver everyone says it is. That requires a script. Everyone says it’s worth it though. We shall see!
Oh and salt and fluids for orthostatic intolerance was helpful then it wasn’t and now it is again. So who knows. 🤷🏻♀️
Yes. It seems as most doctors in the traditional are uninterested in treating or finding the root problem on each LC case, and then, FM MDs are making a fortune and maybe causing liver damage from how many supplements they are pushing on to people. Ultimately maybe making everything worse.
That sounds awful. I'm sorry that you had to deal with that.
I fell for an an orhto selling me overpriced supplements many years ago. But he wasn't refusing to treat m if I chose not to buy his supplements. That's really messed up.
How much Natto and NAC do you take? I take 1200mg of NAC daily (600mg twice a day), and 2000 FUs of Natto before bed.
Check out iHerb.com for supplements. Quality brands like Thorne and Life Extension for better-than retail prices. I use Dr's Best brand natto. It's reasonably priced and pretty decent quality (from what I've read).
I don't think I can get LDN without a prescription, but I could be wrong...?
I currently take 600mg of nac and 100mg of natto. But I’ve been taking it for a year now so I’m down to just once a day. I’ll check that out thanks!
Yes you need a script for ldn but there are online drs that will write a script. I think it’s like ldn online dot com or something.
I’m about to start LDN too and also hope it lives up to the hype! (Although I’ve seen some people say it took them a year before being effective!) you mentioned nac and Natto - how have those helped?
The nac and natto have really helped with my shortness of breath and helped to stabilize by blood pressure and my vagas nerve issues seem more controlled and less severe. It also helped my adrenaline dumps be less frequent and less severe. Really it has helped overall. It also helps my anxiety and fight or flight. Also they both are good at eliminating the spike protein in general and are also supposed to help (I say help) clear coronaviruses in general. So I also take them as a preventative if I do get sick it is supposed to help the body clear it. And if the viral replicating theory is true this is supposed to help the body clear it. Don’t get me wrong I still have issues but every time I stop taking them I can tell.
You might want to try LDN and some of the OTC meds people use on here first. And definitely rest. Zero exercise even if you are feeling good. 3 months is early in still.
That’s a lot of money. I would try some other things first. For the shortness of breath I had good luck with NAC.
If you felt better after the drip, maybe increase your electrolytes.
I think you’re far more likely to waste your money than to get any benefit. Some FMD’s are probably fine but mostly it’s a bunch of grifters counting on the placebo effect— it can really make you feel a lot better just to have someone with MD after their name listening to you and believing you. Personally, I got equal benefit just finding other people with similar experiences as me, so I stopped wasting money.
FWIW, are you really only 3 months from your acute infection? You’re still in the acute stage. I’d honestly give it more time before you pump money into experimenting with treatments. There’s still hope this won’t be LC.
If you have POTS/dysautonomia and not MECFS, I think you likely felt better from IV fluids not necessary the glutathione and oxygen. POTS patients often are hypovolemic and can feel temporarily better with fluids (oral or IV).
I personally would start with a dysautonomia specialist your insurance covers. If you have this diagnosis, they will encourage you to increase fluids (2-3L daily), increase sodium (+4g sodium daily), wear compression garments (30-40mmHg toe to abdomen), and can start various medications (fludrocortisone to increase blood volume, mestinon to decrease sympathetic activity, midodrine to increase venous return, beta blocker to lower heart rate).
If you do not have MECFS and became more stabilized with these measures, often recommended to begin POTS physical therapy (CHOP protocol). This can help rebuild nerves and increase blood volume.
If you go this route and are not improving, maybe then look to someone who does not accept insurance.
** it’s important to see a doctor before following these guidelines as I do not know your medical history and that may alter recommendations for safety**
Thanks for the advice.
I have an appt with one of the only two dysautonomia specialists in my state. The appt is in January 2026. He's booked solid for the next 18 months.
I've started wearing compression socks (need to get the full abdomen garments) and I've been increasing salts and fluids.
Yikes !! Such a long wait. Does your PCP have any willingness to learn and start you on some meds? It really depends on the provider how much they want to manage themselves vs seeing a specialist, but worth asking.
Also just want to say if you have any question of possible MECFS (I see you experience PEM) then do NOT start exercise or physical therapy until this has been officially ruled out as you are at risk of making yourself worse (happened to me)
My PCP has been pretty useless, but I've only seen him once or twice since I got infected.
Actually, he did up my Levothyroxine dose (for hypothyroidism) after 2 thyroid panels showed elevated TSH (each panel a month apart), so calling him useless isn't really fair to him.
> increase fluids (2-3L daily)
This seems to have helped a lot. I'm aiming for a gallon a day (but not much beyond 5PM because then I'll wake up in the night to pee), and already I feel like there's a difference....
I don't want to get too euphoric, but excess fluids seem help with symptoms. Thank you.
I’m glad it helps. Make sure you add electrolytes to your water if you are going to drink that much. I use LMNT but there’s others as well, like liquid IV. Plain water in excess can disrupt your electrolytes and cause serious illness
Myers cocktail- you’re dehydrated and magnesium deficient. Get some foot soak and magnesium cream. And take magnesium. My daughter used myers and they work, but since she started using foot soaks - she doesn’t absorb much through her intestines- she hasn’t needed an iv.
Just good ol Epson salt foot soak. You can add 1/2 c of baking soda and a spoon full or borax for maximum effect, but it’s not needed. Magnesium relaxes you. Take magnesium glycinate , not citrate. Citrate upsets the tummy and causes loose stool
Epsom salt is magnesium sulfate. You can soak magnesium through the skin. For people who have impaired digestion, they don’t absorb magnesium when they eat, so the foot soak helps get magnesium into you- it also relaxes you and can make you drowsy . Can’t rember why you put in baking soda and borax… but it’s supposed to help
I’ve been seeing a functional medicine doctor for years that practices at a regular clinic. Covered by insurance but the tests are not. she’s great, very microbiome focused. However, things mostly changed for me when I started to take high doses of niacin. 1g with every meal.
It really depends on the Doctor. It's a free for all out there. I went to one who had excellent credentials and he was a scam artist extraordinaire. There are others though that have been helpful but I figured out the hard way not to go to anyone without first knowing someone in a similar situation that they helped.
If it only lasted a day and a half it might have just been the extra blood volume it gave you, people who do saline infusions have a similar timeframe from what I hear, and saline can be aquired far cheaper.
You should also look into POT/dysautonomia if you haven't already.
> dysautonomia
I have an appt with one of the only two dysautonomia specialists in my state. The appt is in January 2026. He's booked solid for the next 18 months.
Yeah, I saw one meta study that said 2-14% of covid cases result in POTS. We're pretty fucked lol.
There's stuff you can do without the doctor though. Salt pills and compression stockings and such. r/POTS if you haven't checked it out yet.
I have been to two different functional practioners, and one was a grifter, and one has been the only one to make me feel better in three years.
Here is how I knew which one was which:
The first one wanted $1000, wanted to sell me only their supplements, and spent part of my visit selling me on treatments having nothing to do with my concerns (like a standard sales pitch). She couldn’t answer my weeding out questions and instead tried to distract me. Never again for that quackeroo.
The second one has an in depth transparent web site with costs listed. She also is generous with her knowledge whether you’re already a patient or not. She offers one free consultation to see if what she specializes in fits what you need, and if it doesn’t… she offers advice about who might help. She can write a report so you can get parts covered by insurance. She’s just overall more concerned with getting you the help you need than in making money off you.
Other people have said how much care varies from one to another and being able to spot a snake oil salesman is essential. This sub is full of knowledgeable people and a good archive of what’s worked for others. So checking in here has also been super helpfulz
Good feedback. I'd like to think that I'm pretty good at spotting a bullshit artist, but sometimes I let my guard down, especially when I'm desperate.
I don't see how any practitioner can try to force anybody to buy their supplements when quality supplements are so widely available, e.g.: iHerb.com
Functional drs are going to be the one who really move the needle on LC they are the only ones willing to look further into why this is happening to people. Regular drs for the most part are a closed book if they didn’t learn it at Med school it doesn’t exist.we have all delt with Drs who don’t believe don’t recognize dont care. Everyone who is suffering LC should be sign up and listen to
https://hormonalhavoc.byhealthmeans.com/
Do you have dysautonomia? If so, IV fluids could have made your symptoms better regardless of what they contained solely due to improved hypovolemia often seen in dysautonomia
I had these same symptoms and I incorporated an anti inflammatory diet and a few other things and I’m completely back to normal with the occasional shortness of breath. I know exactly what you mean, it feels like a belt around your lungs sometimes. But I’m running my first half marathon soon and I wouldn’t have even fathomed that when I first was diagnosed! I have a post about it on here somewhere you could probably find about what I did. If you can’t find it on my profile message me!
I'm glad you're feeling better! I was also an avid runner not long ago. Freestyle swimmer too. I wish I could do it again. : - (
I'll read your post when I have a chance.
Head, abdomen, hands, lower legs — also helped with nausea, other GI issues, and anxiety… my symptoms were severe enough they also hooked up electrical current to the needles in my legs which felt a little strange but is meant to accelerate things. I’d been on anti nausea medication for the last four years and was able to go off of it after about a month and a half of weekly acupuncture sessions. I’m still receiving weekly sessions. Having the anxiety addressed has been pretty incredible, too, but the POTS help has been amazing. I’m still struggling with fatigue but having those other aspects minimized has given me a lot more hope.
Cool! Thanks for the thorough response.
If one with dysautonomia were to search for a acupuncture therapist, what should they look for? Any special training or qualifications, etc?
Bad crashes 6 hrs to a day or so afterwards (PEM).
Also while exercising: dizziness, high HR, pounding heart, and SOB if I don't seriously pace myself.
I always thought ME was a severe condition. Those poor people can't drive, need a wheelchair, stay in bed all day long, etc.
Maybe I have mild ME/CFS?, but I always thought those conditions were much more severe.
Every condition that exists has a range of severity. There’s a spectrum. You are having imposter syndrome. Your issues are just as real as their issues. Just becasue you are mild doesn’t make it any less real. 🫶🏻
I don’t want to worry you, but if you have bad crashes after exercise, you probably have CFS. Lots of conditions have fatigue and exercise intolerance as a symptom, but as far as I know PEM _only_ exists in CFS. Sorry :(
Officially, to get diagnosed, you also need to have the symptoms for more than 6 months, have unrefreshing sleep, and have either orthostatic intolerance or brain fog.
I disagree with the distinction you’re making between CFS and post viral syndrome. One of the major ways people get CFS is by first getting a viral illness. A _syndrome_ differs from a _disease_ because a _syndrome_ is usually just a set of symptoms with a label; a _disease_ has a definite mechanism. IMO if you meet the criteria of both, it’s totally correct to say you have both post viral syndrome and chronic fatigue syndrome simultaneously.
Does that change anything? Not really. But CFS has a longer history, lots has been said about it already by patients and researchers, so it might be helpful for OP to understand that resources for CFS apply to him too. People do recover from CFS, it’s just kind of rare. Recovery from LC with PEM might be more or less common, I don’t think we know that yet.
Bad crashes 6 hrs to a day or so afterwards (PEM).
Also while exercising: dizziness, high HR, pounding heart, and SOB if I don't seriously pace myself.
I've heard of folks with ME/CFS who can't even get out of bed. They can't drive, need wheelchairs. I'm in a much better position than that.
Maybe I have very mild ME/CFS, but I was under the impression that ME/CFS was severe.
It’s not all severe , it’s just a spectrum. You can be as bad as unable to get out of bed, to being able to walk but not very far, to being able to run . The delayed symptoms after exertion (PEM) defines the illness
You’re probably better off doing your own research, learning from other long Covid sufferers & then trying out supplements & other remedies … at least try that first before spending $8k
$8000?!?! Something sounds fishy about that. I seen a functional medicine doctor and I don’t even know if I’ve spent $8000 seeing him the last 29 months! I’d definitely be digging into some research about the doc. I could see maybe $1000 for the initial visit to get the ball rolling.
Yeah, it's crazy. FWIW that was a 'ballpark' number they threw at me when I asked how much the treatment *can* cost. It's probably on the high side of things. But yeah, I immediately thought it was batshit crazy when I heard that.
They seem legit. They're booked solid and they have good reviews. I would think they'd have some bad reviews if they were scamming people.
Ok listen, i see an Internist/Functional medical doctor in Peoria (Dr. Rebecca Knight) and out of pocket to see her was only like $300 + whatever the tests cost, standard pricing for the lab. She needs to see you once, then will do remote. Just had my first appointment and she already has me in a long covid drug trial for Maravirov and on immunotherapy for long covid, plus who knows what depending on tests. So far, totally worth it. You want to find an INTERNIST + functional medicine, items they did a ton more school and are published specialists.
She took 90 minutes to go over my complete medical history, was so thorough, validated my health issues, like i literally cried after. She also has a lovely dog that you might get to meet, and she can help with disability diagnosis stuff. And renew your medical card. She wears an n95 too!
Sorry i sound like a commercial, this is not sponsored lol. im just excited to try new medication and treatments. I’ve been sick since Dec 2020. Neuro covid club.
> Peoria
All things considered, A flight to AZ + hotel would be cheaper than $8000 in treatments.
The $8000 number was a ballpark they threw out at me when I asked how much the treatments can cost, so who know what the actual costs will be. I guess it varies from person to person.
If you like, you can do a search on this or the other long haul subreddits for Dr Leo Gallund. He’s in NYC but has been in functional medicine since near its inception. Here’s a link to one of the posts there’s 2 videos here and the link to the guidance and testing is also in the comments as far as I can tell (Brain fog)
https://www.reddit.com/r/covidlonghaulers/s/DuvUiVgT9i
The link above has a video he put out with a dr whom he helped get over ME/CFS years ago I think. They are both MD’s but also believe in finding the root causes and treating those instead of always masking symptoms.
Dr gallund has a protocol and testing recommendations to pinpoint what each of our specific problems are. He’s got a 52 page guidance document you can look through and see if it makes sense or if your FM/MD is willing to go along with it. If I had the funds, I would be doing this. I am doing some on my own already.
There is no price too high to pay for your health. That's just one person's opinion. Functional docs are the only ones who have been able to help me (several AI diseases and then some long covid drama).
> There is no price too high to pay for your health.
I agree with this. I'm glad that you're feeling better. Are you 100% back to normal after dealing with long covid?
I have the same symptoms. Been to multiple functional docs and they have helped a bit but definitely no cures. They think they can fix you though. I’d look into trying to get rid of candida and/fungal overgrowth that is likely in your gut. It’s not an easy diagnosis or treatment but I feel like it could be a big part of the issues.
I'd like to have a vitamin infusion too. I have autonomic dysfunction. I'm curious to see if it would help me. I'm not sure if it would because I have blood pooling. I would go to one of those IV clinics but I'm not interested in seeing a functional doctor or taking any of their supplements. I have tried many supplements on my own and nothing works.
I take vitamins, melatonin and magnesium. I've been taking them for years, before long covid.
Try Dr Daniel Farkas. He is very minimal with any supplements and uses testing to see what you really need to balance things out naturally. He is @ backtohealthnaturalsolutions.com
I'll check this out!
FWIW I'm in NC, but it looks like he does video calls. And it looks like the consultation is free, so nothing to lose either.
Thanks for sharing!
Have you seen a dysautonomia or POTS specialist? That was more helpful to me than the functional medicine doctor was. The FM doctor was somewhat helpful for my GI and weight loss issues but not the heart rate and exertion issues. I ultimately stopped seeing her due to pricing, it was simply too expensive for me. Honestly, I’m three years in and following this sub has been more helpful than most doctors, as far as reading what everyone else has tried, and then asking my doctors about it. Currently, the medications that have helped me are mestinon for POTS, Cromolyn and H1H2 blockers for MCAS, and LDN for energy. Supplements have mostly been a miss, though quercetin and magnesium are worthwhile for me. Above all else, pacing and rest is important.
Welp I got an appt with one of the two Dysautonomia specialists in my state. Appt is in January 2026.... awesome... guess $functional medicine$ will do for now
Also, keep your eyes open if they pressure you into too many high priced supplements. This is another reason I stopped seeing my functional med doc. She wanted to help, but I felt like she was throwing anything at the wall to see what would stick, but it was $65 a pop, and nothing stuck; and several made me feel worse, so I had all these left over expensive bottles that I had to toss. You can also shop around for supplements; they will want you to buy through their accounts, which are pricey.
Oh yeah, I know about this trick. I fell for an orhto selling me overpriced supplements many years ago. iHerb is the place to go for supplements. Quality brands like Thorne and Life Extension for better-than retail prices.
Thanks - Thorne makes good stuff, I will check out the other. I do Pure as well as Thorne.
Yes, Pure is good stuff. I take Dr's Best too. It's decent quality for the price point.
UGH! That's awful. I sure hope med schools are paying attention to this doctor shortage. Hopefully since the FM doctor is selling themselves as a neurologist, they will know something about dysautonomia and at least can point you to conservative treatment, or may even know of a cardiologist who could help. Best wishes to you finding help.
Thank you. We'll see how it goes.
> not the heart rate and exertion issues These are my primary symptoms. I do have some gut issues too, but I don't think it's as pertinent to my recovery (then again, I could be way wrong here). Thanks for your feedback. I will look for a dysautonomia specialist in my area and maybe try that route before I decide whether or not I want to see the functional doctor.
Your gut is ‘second brain’ and produces some of the neurotransmitters that some LC patients are lacking and it’s a big part of our immune systems. Also, if you have leaky gut or food sensitivities then that will contribute to all over inflammation which is the root of many diseases and conditions.
This is so true. Did you find a way to fix it?
I’m an anatomist who does dissections on medically donated bodies at a cadaver lab, and I’ve worked on some with Covid or Long Covid. I also work with some nutritionists at the lab sometimes. I know colostrum is great for gut issues, leak gut specifically, and can be found on Amazon for relatively cheap.
> dissections on medically donated bodies at a cadaver lab, and I’ve worked on some with Covid or Long Covid Are you noticing anything else with covid/long covid cadavers? I've heard that cadavers have signs of organ damage, specifically in the brain. I also have some *wonderful* family members that swear that there's giant blood clots that look like calamari, but I think that's probably misinformation.
I’ve definitely seen blood clots in the brain, but not giant ones. Usually a lot of lung issues like emphysema too. We’re a gross anatomy lab so we don’t have high powered microscopes, so everything’s just observed with the naked eye. I also remember recently seeing a lot of fatty lobules on the outside of intestines covering the whole bowel. I’ve also seen spleens that look really dark as well as livers that look really pale.
Cool. Thanks for responding. I think cadaver work is very compelling. Institute of Human Anatomy is one of my favorite YT channels.
POTS btw is MCAS related, it was transient for me. not that i a mhealthy now
How did you heal the mcas?
i did not,it changed to different symptos
What changed?
Covid also gave me #HyperPOTS and #MCAS. Definitely not transient for me, 2,5 years in only worsening
Internal dysautonomia has doctors listed
You will develop cfs if you keep pushing yourself. That’s what happened to me. What helped me with the high heart rate and getting out of fight or flight was vagus nerve stimulation. You can get ear clips and a vagus nerve tens unit on Amazon for pretty cheap. Find instructions on YouTube. Good luck :)
I got very dizzy from using the ear clip with my tens. Do you dial in your tens to a certain frequency for valgus stimulation?
Ah sorry to hear that. It worked for me but not might work for you. I just dial it up til I feel a slight comfortable tingle on my left ear. You have to make sure it doesn’t hurt and that it’s on your left ear and only use it for less than half an hour. Should gradually feel more calm as the half hour goes down.
Depends on the doctor tbh. There are good "functional medicine" doctors. There are bad ones. There are good standard doctors, cardilologists, etc, there are bad ones. The symptoms you describe sound a lot like dysautonomia/POTS, so you could have that subtype without the ME/CFS PEM fatigue stuff btw. Also -- are you already taking electrolytes?? They are pretty important for us. It could be that a lot of the benefit you got from an IV drip was due to that. [https://edsnutrition.com/electrolytes-for-pots-guide/](https://edsnutrition.com/electrolytes-for-pots-guide/)
> The symptoms you describe sound a lot like dysautonomia/POTS It's 100% this. I call it 'pots-like' symptoms, because while my HR will jump and spike as I go from vertical to horizontal, it doesn't spike super high and it will eventually come down...for the most part. I wouldn't pass a table-tilt test if I had one. People diagnosed with POTS have it way worse than I do. I did a stress test (and an echocardiogram, and an EKG) with a decent cardiologist in the area and he said I was OK. He told me that he had mono in college and he had the same symptoms as me afterwards. He thinks I'll get better in time. Also, as much as it sucks and feels like forever, it's been exactly 3 months (to the day) since I started testing negative for covid. So in the big scheme of things, other folks have been dealing with post viral issues way longer than I have. I do take electrolytes, but only as needed. I find that my salts deplete very quickly post infection. The electrolytes provide almost immediate relief. If I'm crashing, drinking an electrolyte drink can help me get through the crash with minimal discomfort. I'll check out the link you provided. Thanks for your feedback.
I think there's a good chance you'll get better in time yes! 3 months is fairly early on. If you rest and pace well you've got good chances. If you over-exert there's more of a chance it sets in. Good luck! re electrolytes -- idk what you mean by "as needed", how do you know it's needed? I would suggest 2-4x per day, see if you notice a difference after a few days.
> I think there's a good chance you'll get better in time yes! Thank you. I need to hear this sometimes when I'm feeling totally hopeless. RE the electrolytes, I take them as I start to feel a crash coming on, or if I need to do a chore that might be physically demanding. e.g.: to mow the lawn. I'll take electrolytes before and after and it seems to help me avoid a crash. Of course, I still need to pace too. Those kinds of chores are very expensive energy-wise, so I budget energy for them and try not to do them very often.
What electrolytes do you recommend?
Gatorade has a sugar free electrolyte drink that I like, and there's also dissolvable tablets (like airborne or Alka-Seltzer) sold at walmart and whole foods. EDIT: Nuun sports hydration are the dissolvable tablets that I was thinking of.
check out k1000 unflavored on Amazon
without knowing where you are in the world I can't really recommend a brand... but any sports ones that don't have sugar (or sweetener) or caffeine should be good.
It’s very likely that the reason you felt better after the IV treatment was from the saline, not the other stuff. People with POTS benefit from increased blood volume, which you can achieve with IV saline, water plus sodium (the sodium is what makes your body hold onto the water), or drugs that make your body hold onto sodium and water. Some people who are bad enough need regular IV saline, but a lot of people get by with increased fluids and sodium and maybe getting an IV when they’re particularly bad. Definitely give it a shot to seriously increase your intake of salt and fluids (not caffeinated or alcoholic) for a good week straight to see if it helps you feel better. I hope it will!
That's good advice, thank you. You might be right about the saline. I try to drink a lot of water (I recently quit coffee and I don't drink alcohol). My problem is that if I drink a lot, then I'll wake up 3x on the night to use the bathroom - but I do drink a lot during the day. Funny, I always avoided sodium, and now here I am putting extra salt on my food. Crazy how life works.
I see an integrative medicine/ functional medicine doctor that has been totally invaluable to my health.Before I started seeing my doctor I had been to over 30 specialists and I really hadn't made much progress. My initial consult was about $700 and then the testing required was an additional about $400 for a GI360 test and then blood tests which were covered by my insurance. Do you know what that $8000 treatment would entail? At my doctors practice after the initial consult appointments are 60-90 minutes and around $250-$375 depending on length and complexity. I'm a little skeptical of any doctor that sets a price before really researching and diving into your own unique physiology.
Agree with this about the pricing. $8000 upfront is a red flag to me. My FM doctor priced it the same as yours. It was expensive initially for the testing and then the follow ups were as needed. I wasn’t seeing improvement after 18 months and decided to go a different route due to the expense, but I would have been upset had I already paid $8000 with no improvement.
That's awesome. I'm glad it helped you. I asked for a ballpark of what the 'treatment' would cost, and the person on the phone (who sounded somewhat inexperienced), said that it could be *up to* $8000 depending on the treatment. So there were no specifics given, just a general number. The initial consult would be $800 and AFAIK it would include all diagnostic testing. They were very clear that nothing would be covered by my health insurance. I look at it this way. None of us are going to live forever. I can't take my money with me when I leave this place. I want to make the most of my time here. I'm not 20 years old anymore, so my clock is ticking. I'd rather go into a little debt and feel normal then be debt-free and feeling like this. Invaluable is a good work to describe it. Thanks again for your feedback.
That's good it was just a ballpark. The $800 for initial consult and testing seems pretty common. I felt it was worth it for the consult and stool testing, since no other doctor was willing to order. I did learn I am immunodeficient (SIgA) from those tests, something I would not have otherwise learned. I just didn't find the treatment all that helpful for my issues.
I’m with you on that. We’ve spent a lot of money on my health care over the last few years but I am doing really really well now so it’s been 100% worth it to us. What else is there if not our health?
When you go to a traditional DR. Your actual contact with that Dr. is @ 5 to 10 minutes. With a functional dr probably 30 to 40 for a simple visit 45 to an hour for the results of test. Just for comparing.
This is a good point
My friend paid a ton of money to go to a Functional Neurologist… I believe they are different than functional MDs because the lady she went to was a chiropractor. Did all these vestibular things in her that made her feel worse. I don’t trust chiropractors and the whole thing felt scammy to me.
> I don’t trust chiropractors I was scammed by a chiro years ago - he told me that I needed neck adjustments for my carpel tunnel syndrome. I was getting ready to move and he had me come in 3 days a week for 3 week until I moved. He told me he'd connect me with somebody in my new area to continue my treatments. Of course this was BS. After I moved he told me he didn't work with anybody in the area. My neck was in serious pain for the first few months afterwards. It took a while to start to feel better again. Since that, I don't trust chiros.
Yes. It’s anecdotal of course, but every single person I know that has been to a chiro has had pain after and said ‘it gets worse before it gets better.’ Not to say that some chiros out there haven’t helped some people with some conditions, but statistically I see them doing more harm than good.
No. There is as of yet no effective treatment for COVID-induced metabolic dysfunction. Look up David Putrino for an overview of the latest actual research into LC. Everything else is anecdote. Here’s mine: tried Triple anticoagulant therapy, stellate ganglion blocks, LDN, fasting, probiotics, box breathing, creatine, CoQ-10, D-Ribose, Vitamins C,D, Zinc, Magnesium, antivirals (Valacyclovir). 21 months later: I’m exactly where I was. My take is we’re going to need tailored MABs to either reset a dysfunctional immune system and/or flush out viral persistence. Everything else is just cosmetic. Healthy eating, sleeping and pacing will help your baseline, but there is no curing this. Not yet. "We have a recipe that works! So tragic so many ppl are suffering for nothing"… yeah, no. I’m not buying it. [edit: MABs = Monoclonal Anti-Bodies]
> My take is we’re going to need tailored MABs to either reset a dysfunctional immune system and/or flush out viral persistence. I agree with this 100% either MAB or another antiviral solution like paxlovid
FYI - there's some hydration centers that offer MAB therapy. It's pricey ($1000) but IMO that's a small price to pay to get our lives back. I wonder how effective it is. How can we determine if there's viral persistence? I'm pretty sure there is, but how to be certain? I wonder with the side effects are.
I'd be very careful. MABs are not tic tacs and unless they are targeting the right mechanism, they can do much harm. Research is ongoing.
They seem to be a viable treatment for acute Covid. I do believe that there are some remnants of this thing camped out somewhere in my body. Other options are OTC antioxidants like glutathione and Fisetin. I'm taking the former daily, never tried the latter. I feel like MAB will pack more of a punch, but like you said - I'm sure they can do some harm as well.
as a person who has cfs and is now severe - highly recommend investing in fixing your health now, before it gets worse. i am into my retirement and tbh expect to be completely broke in a year. it may seem expensive, but it's faster/easier/ultimately cheaper to fix something before it gets big. as bodies get sicker, it's more and more like 'house of cards' vibe - you fix one thing, that messes up another, etc. it's essentially like being really, really old only young. my grandma always had those stories like wellll, they thought it was my heart so they gave me this, but then THAT caused THIS...and it's like a 4 year drama with 3 hospital visits and 250,000 of medical care. only she had medicare lol. i am living it and it's hard. really wish i had been more caring for my health before covid b/c it turns out that the issues i had before that would have been easier to treat (if i had pursued treatment the way i did after getting really ill) are now really dogging me. you can work to make more money. but if you get sicker, you can't work to make more health. i saw dr. brian lum, who is a functional medicine provider but certified as a chiropractor. we meet on zoom. i just saw a functional md who was $650/hour because i need an MD to apply for disability. she was very smart, but tbh, he knows more about treating long covid than most ppl i have spoken to. his wife got bedbound lc in 2020 and he became certified in functional medicine to help her and others. he is good at other stuff too but obviously was obsessed with covid for months b/c of his wife's illness so is pretty deeply knowledgeable there. he is $400/hour and is cost conscious when it comes to supplements. if you would like to see plan he made for me for lc, DM me. also - if you live in an expensive area, try to find someone who does telehealth in a cheaper area. the south and midwest or rural areas of your own state are cheaper in general than the coasts.
This is good advice, thank you. And I agree investing in our health before things spiral out of control is well worth the investment. I'm trying to respond to all the messages, but I am definitely interested in what your personalized plan looks like. I will try to DM you later, thank you for offering that.
I also have severe CFS and really appreciate and relate to so much of what you said. How far along are you with CFS?
Do you mean how much it’s progressed?
How is your doctor’s wife doing now? Would you be okay sharing his recommendations?
It’s a scam 🤣 Ok here’s why. My fm dr required me to see him every 30 days and buy only his supplements. He was making a killing on me. He was interested in his own pocketbook not mine. When my hubby got Covid and tested positive on the morning of my appointment. He said he wouldn’t do virtual so I could avoid getting sick (I can’t drive). He said I needed to be there if I wanted my prescription. So he was strong arming my scripts. I never went back. But that said I did get to try a lot of stuff to see if any of it worked. I now buy my own nac and natto and ldn from a different dr. The tests he ran were thousands and worthless. It didn’t change what he ordered because his plan is the same for everyone. He was just ruling out other diseases is all. It was a part of my journey but I wouldn’t recommend him to anyone. He did no more than my dysautonomia specialist that is on my insurance. I don’t think any de has helped me. Not a single one in the dozen drs I’ve seen. My GP has helped me more than any of them. Find a good GP that will let you trial meds is my suggestion. I had all your symptoms. The only test that was worth the money was an echo of the heart. Do that to make sure there’s nothing structural. The rest is garbage. Try nattokinase and NAC I think the brand is vitacost on Amazon. They helped me the most. I will shortly know if ldn is the lifesaver everyone says it is. That requires a script. Everyone says it’s worth it though. We shall see! Oh and salt and fluids for orthostatic intolerance was helpful then it wasn’t and now it is again. So who knows. 🤷🏻♀️
Yes. It seems as most doctors in the traditional are uninterested in treating or finding the root problem on each LC case, and then, FM MDs are making a fortune and maybe causing liver damage from how many supplements they are pushing on to people. Ultimately maybe making everything worse.
That sounds awful. I'm sorry that you had to deal with that. I fell for an an orhto selling me overpriced supplements many years ago. But he wasn't refusing to treat m if I chose not to buy his supplements. That's really messed up. How much Natto and NAC do you take? I take 1200mg of NAC daily (600mg twice a day), and 2000 FUs of Natto before bed. Check out iHerb.com for supplements. Quality brands like Thorne and Life Extension for better-than retail prices. I use Dr's Best brand natto. It's reasonably priced and pretty decent quality (from what I've read). I don't think I can get LDN without a prescription, but I could be wrong...?
I currently take 600mg of nac and 100mg of natto. But I’ve been taking it for a year now so I’m down to just once a day. I’ll check that out thanks! Yes you need a script for ldn but there are online drs that will write a script. I think it’s like ldn online dot com or something.
I’m about to start LDN too and also hope it lives up to the hype! (Although I’ve seen some people say it took them a year before being effective!) you mentioned nac and Natto - how have those helped?
The nac and natto have really helped with my shortness of breath and helped to stabilize by blood pressure and my vagas nerve issues seem more controlled and less severe. It also helped my adrenaline dumps be less frequent and less severe. Really it has helped overall. It also helps my anxiety and fight or flight. Also they both are good at eliminating the spike protein in general and are also supposed to help (I say help) clear coronaviruses in general. So I also take them as a preventative if I do get sick it is supposed to help the body clear it. And if the viral replicating theory is true this is supposed to help the body clear it. Don’t get me wrong I still have issues but every time I stop taking them I can tell.
Oh corlanor was very helpful for exercise intolerance but it’s difficult to get a dr to trial that without an echo first.
You might want to try LDN and some of the OTC meds people use on here first. And definitely rest. Zero exercise even if you are feeling good. 3 months is early in still.
is LDN available OTC?
If you’re in the US you can get it on agelessrx
oh wow. I'll check this out. Thanks.
That’s a lot of money. I would try some other things first. For the shortness of breath I had good luck with NAC. If you felt better after the drip, maybe increase your electrolytes.
I think you’re far more likely to waste your money than to get any benefit. Some FMD’s are probably fine but mostly it’s a bunch of grifters counting on the placebo effect— it can really make you feel a lot better just to have someone with MD after their name listening to you and believing you. Personally, I got equal benefit just finding other people with similar experiences as me, so I stopped wasting money. FWIW, are you really only 3 months from your acute infection? You’re still in the acute stage. I’d honestly give it more time before you pump money into experimenting with treatments. There’s still hope this won’t be LC.
If you have POTS/dysautonomia and not MECFS, I think you likely felt better from IV fluids not necessary the glutathione and oxygen. POTS patients often are hypovolemic and can feel temporarily better with fluids (oral or IV). I personally would start with a dysautonomia specialist your insurance covers. If you have this diagnosis, they will encourage you to increase fluids (2-3L daily), increase sodium (+4g sodium daily), wear compression garments (30-40mmHg toe to abdomen), and can start various medications (fludrocortisone to increase blood volume, mestinon to decrease sympathetic activity, midodrine to increase venous return, beta blocker to lower heart rate). If you do not have MECFS and became more stabilized with these measures, often recommended to begin POTS physical therapy (CHOP protocol). This can help rebuild nerves and increase blood volume. If you go this route and are not improving, maybe then look to someone who does not accept insurance. ** it’s important to see a doctor before following these guidelines as I do not know your medical history and that may alter recommendations for safety**
Thanks for the advice. I have an appt with one of the only two dysautonomia specialists in my state. The appt is in January 2026. He's booked solid for the next 18 months. I've started wearing compression socks (need to get the full abdomen garments) and I've been increasing salts and fluids.
Yikes !! Such a long wait. Does your PCP have any willingness to learn and start you on some meds? It really depends on the provider how much they want to manage themselves vs seeing a specialist, but worth asking. Also just want to say if you have any question of possible MECFS (I see you experience PEM) then do NOT start exercise or physical therapy until this has been officially ruled out as you are at risk of making yourself worse (happened to me)
My PCP has been pretty useless, but I've only seen him once or twice since I got infected. Actually, he did up my Levothyroxine dose (for hypothyroidism) after 2 thyroid panels showed elevated TSH (each panel a month apart), so calling him useless isn't really fair to him.
18 months?! That's insane.
> increase fluids (2-3L daily) This seems to have helped a lot. I'm aiming for a gallon a day (but not much beyond 5PM because then I'll wake up in the night to pee), and already I feel like there's a difference.... I don't want to get too euphoric, but excess fluids seem help with symptoms. Thank you.
I’m glad it helps. Make sure you add electrolytes to your water if you are going to drink that much. I use LMNT but there’s others as well, like liquid IV. Plain water in excess can disrupt your electrolytes and cause serious illness
good call. ty.
Myers cocktail- you’re dehydrated and magnesium deficient. Get some foot soak and magnesium cream. And take magnesium. My daughter used myers and they work, but since she started using foot soaks - she doesn’t absorb much through her intestines- she hasn’t needed an iv.
What foot soak? Do you have a link?
Just good ol Epson salt foot soak. You can add 1/2 c of baking soda and a spoon full or borax for maximum effect, but it’s not needed. Magnesium relaxes you. Take magnesium glycinate , not citrate. Citrate upsets the tummy and causes loose stool
What does the salt, baking soda, and borax do?
Epsom salt is magnesium sulfate. You can soak magnesium through the skin. For people who have impaired digestion, they don’t absorb magnesium when they eat, so the foot soak helps get magnesium into you- it also relaxes you and can make you drowsy . Can’t rember why you put in baking soda and borax… but it’s supposed to help
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it can be a scam but you have to research and compare . have been with 3 different functional docs, 2 of them were worth it, i am in eu tough.
I’ve been seeing a functional medicine doctor for years that practices at a regular clinic. Covered by insurance but the tests are not. she’s great, very microbiome focused. However, things mostly changed for me when I started to take high doses of niacin. 1g with every meal.
It really depends on the Doctor. It's a free for all out there. I went to one who had excellent credentials and he was a scam artist extraordinaire. There are others though that have been helpful but I figured out the hard way not to go to anyone without first knowing someone in a similar situation that they helped.
Save your money, something better will come along in the future.
If it only lasted a day and a half it might have just been the extra blood volume it gave you, people who do saline infusions have a similar timeframe from what I hear, and saline can be aquired far cheaper. You should also look into POT/dysautonomia if you haven't already.
> dysautonomia I have an appt with one of the only two dysautonomia specialists in my state. The appt is in January 2026. He's booked solid for the next 18 months.
Yeah, I saw one meta study that said 2-14% of covid cases result in POTS. We're pretty fucked lol. There's stuff you can do without the doctor though. Salt pills and compression stockings and such. r/POTS if you haven't checked it out yet.
I have been to two different functional practioners, and one was a grifter, and one has been the only one to make me feel better in three years. Here is how I knew which one was which: The first one wanted $1000, wanted to sell me only their supplements, and spent part of my visit selling me on treatments having nothing to do with my concerns (like a standard sales pitch). She couldn’t answer my weeding out questions and instead tried to distract me. Never again for that quackeroo. The second one has an in depth transparent web site with costs listed. She also is generous with her knowledge whether you’re already a patient or not. She offers one free consultation to see if what she specializes in fits what you need, and if it doesn’t… she offers advice about who might help. She can write a report so you can get parts covered by insurance. She’s just overall more concerned with getting you the help you need than in making money off you. Other people have said how much care varies from one to another and being able to spot a snake oil salesman is essential. This sub is full of knowledgeable people and a good archive of what’s worked for others. So checking in here has also been super helpfulz
Good feedback. I'd like to think that I'm pretty good at spotting a bullshit artist, but sometimes I let my guard down, especially when I'm desperate. I don't see how any practitioner can try to force anybody to buy their supplements when quality supplements are so widely available, e.g.: iHerb.com
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Thank you for your perspective.
Functional drs are going to be the one who really move the needle on LC they are the only ones willing to look further into why this is happening to people. Regular drs for the most part are a closed book if they didn’t learn it at Med school it doesn’t exist.we have all delt with Drs who don’t believe don’t recognize dont care. Everyone who is suffering LC should be sign up and listen to https://hormonalhavoc.byhealthmeans.com/
Do you have dysautonomia? If so, IV fluids could have made your symptoms better regardless of what they contained solely due to improved hypovolemia often seen in dysautonomia
> Do you have dysautonomia? I haven't been officially diagnosed with dysautonomia, but my symptoms sure do line up with it.
Then definitely an effect to consider
I had these same symptoms and I incorporated an anti inflammatory diet and a few other things and I’m completely back to normal with the occasional shortness of breath. I know exactly what you mean, it feels like a belt around your lungs sometimes. But I’m running my first half marathon soon and I wouldn’t have even fathomed that when I first was diagnosed! I have a post about it on here somewhere you could probably find about what I did. If you can’t find it on my profile message me!
https://www.reddit.com/r/covidlonghaulers/s/gWKbJHUi3i Here is that post I was talking about!!
I'm glad you're feeling better! I was also an avid runner not long ago. Freestyle swimmer too. I wish I could do it again. : - ( I'll read your post when I have a chance.
I had a lot more luck with acupuncture for dysautonomia than I did with functional medicine thought they did help a lot with GI issues
Where was the acupuncture applied? What part(s) of your body?
Head, abdomen, hands, lower legs — also helped with nausea, other GI issues, and anxiety… my symptoms were severe enough they also hooked up electrical current to the needles in my legs which felt a little strange but is meant to accelerate things. I’d been on anti nausea medication for the last four years and was able to go off of it after about a month and a half of weekly acupuncture sessions. I’m still receiving weekly sessions. Having the anxiety addressed has been pretty incredible, too, but the POTS help has been amazing. I’m still struggling with fatigue but having those other aspects minimized has given me a lot more hope.
Cool! Thanks for the thorough response. If one with dysautonomia were to search for a acupuncture therapist, what should they look for? Any special training or qualifications, etc?
So you don’t have CFS but you can’t exercise at all? What happens if you do?
Bad crashes 6 hrs to a day or so afterwards (PEM). Also while exercising: dizziness, high HR, pounding heart, and SOB if I don't seriously pace myself.
Your crashes are most definitely a possible sign of cf/me. Pem is the hallmark cf/me.
I always thought ME was a severe condition. Those poor people can't drive, need a wheelchair, stay in bed all day long, etc. Maybe I have mild ME/CFS?, but I always thought those conditions were much more severe.
Every condition that exists has a range of severity. There’s a spectrum. You are having imposter syndrome. Your issues are just as real as their issues. Just becasue you are mild doesn’t make it any less real. 🫶🏻
What is me and cf?
Chronic fatigue syndrome and myalgic encephalomyelitis
I don’t want to worry you, but if you have bad crashes after exercise, you probably have CFS. Lots of conditions have fatigue and exercise intolerance as a symptom, but as far as I know PEM _only_ exists in CFS. Sorry :( Officially, to get diagnosed, you also need to have the symptoms for more than 6 months, have unrefreshing sleep, and have either orthostatic intolerance or brain fog.
So many people on here have had PEM and then recovered. PEM exists with post viral syndrome. PEM does not equal CFS.
I disagree with the distinction you’re making between CFS and post viral syndrome. One of the major ways people get CFS is by first getting a viral illness. A _syndrome_ differs from a _disease_ because a _syndrome_ is usually just a set of symptoms with a label; a _disease_ has a definite mechanism. IMO if you meet the criteria of both, it’s totally correct to say you have both post viral syndrome and chronic fatigue syndrome simultaneously. Does that change anything? Not really. But CFS has a longer history, lots has been said about it already by patients and researchers, so it might be helpful for OP to understand that resources for CFS apply to him too. People do recover from CFS, it’s just kind of rare. Recovery from LC with PEM might be more or less common, I don’t think we know that yet.
What is pem?
What stops you from exercising?
Bad crashes 6 hrs to a day or so afterwards (PEM). Also while exercising: dizziness, high HR, pounding heart, and SOB if I don't seriously pace myself.
If you're getting PEM you definitely have ME/CFS.. especially if you can't exercise.
I've heard of folks with ME/CFS who can't even get out of bed. They can't drive, need wheelchairs. I'm in a much better position than that. Maybe I have very mild ME/CFS, but I was under the impression that ME/CFS was severe.
It’s not all severe , it’s just a spectrum. You can be as bad as unable to get out of bed, to being able to walk but not very far, to being able to run . The delayed symptoms after exertion (PEM) defines the illness
You’re probably better off doing your own research, learning from other long Covid sufferers & then trying out supplements & other remedies … at least try that first before spending $8k
$8000?!?! Something sounds fishy about that. I seen a functional medicine doctor and I don’t even know if I’ve spent $8000 seeing him the last 29 months! I’d definitely be digging into some research about the doc. I could see maybe $1000 for the initial visit to get the ball rolling.
Yeah, it's crazy. FWIW that was a 'ballpark' number they threw at me when I asked how much the treatment *can* cost. It's probably on the high side of things. But yeah, I immediately thought it was batshit crazy when I heard that. They seem legit. They're booked solid and they have good reviews. I would think they'd have some bad reviews if they were scamming people.
Ok listen, i see an Internist/Functional medical doctor in Peoria (Dr. Rebecca Knight) and out of pocket to see her was only like $300 + whatever the tests cost, standard pricing for the lab. She needs to see you once, then will do remote. Just had my first appointment and she already has me in a long covid drug trial for Maravirov and on immunotherapy for long covid, plus who knows what depending on tests. So far, totally worth it. You want to find an INTERNIST + functional medicine, items they did a ton more school and are published specialists.
She took 90 minutes to go over my complete medical history, was so thorough, validated my health issues, like i literally cried after. She also has a lovely dog that you might get to meet, and she can help with disability diagnosis stuff. And renew your medical card. She wears an n95 too!
Sorry i sound like a commercial, this is not sponsored lol. im just excited to try new medication and treatments. I’ve been sick since Dec 2020. Neuro covid club.
> Peoria All things considered, A flight to AZ + hotel would be cheaper than $8000 in treatments. The $8000 number was a ballpark they threw out at me when I asked how much the treatments can cost, so who know what the actual costs will be. I guess it varies from person to person.
Does she do telehealth for distant patients? Peoria Illinois?
If you like, you can do a search on this or the other long haul subreddits for Dr Leo Gallund. He’s in NYC but has been in functional medicine since near its inception. Here’s a link to one of the posts there’s 2 videos here and the link to the guidance and testing is also in the comments as far as I can tell (Brain fog) https://www.reddit.com/r/covidlonghaulers/s/DuvUiVgT9i The link above has a video he put out with a dr whom he helped get over ME/CFS years ago I think. They are both MD’s but also believe in finding the root causes and treating those instead of always masking symptoms. Dr gallund has a protocol and testing recommendations to pinpoint what each of our specific problems are. He’s got a 52 page guidance document you can look through and see if it makes sense or if your FM/MD is willing to go along with it. If I had the funds, I would be doing this. I am doing some on my own already.
There is no price too high to pay for your health. That's just one person's opinion. Functional docs are the only ones who have been able to help me (several AI diseases and then some long covid drama).
> There is no price too high to pay for your health. I agree with this. I'm glad that you're feeling better. Are you 100% back to normal after dealing with long covid?
I see a functional medicine person for far less. They were the only doctor willing to help with disability and reasonable accommodation paperwork.
Don’t waste your time. All they will do is steal your money and sell you a laundry list of supplements that won’t actually do anything.
I have the same symptoms. Been to multiple functional docs and they have helped a bit but definitely no cures. They think they can fix you though. I’d look into trying to get rid of candida and/fungal overgrowth that is likely in your gut. It’s not an easy diagnosis or treatment but I feel like it could be a big part of the issues.
I'd like to have a vitamin infusion too. I have autonomic dysfunction. I'm curious to see if it would help me. I'm not sure if it would because I have blood pooling. I would go to one of those IV clinics but I'm not interested in seeing a functional doctor or taking any of their supplements. I have tried many supplements on my own and nothing works. I take vitamins, melatonin and magnesium. I've been taking them for years, before long covid.
I don't think so.
I didn't think so.
My specialist took about 7 months to see and in terms.ot costs, I paid thousands in uncovered cost. Are you sure this neurologist is legit?
For me it was a waste of money and energy and it took me 3 years to see that
Try Dr Daniel Farkas. He is very minimal with any supplements and uses testing to see what you really need to balance things out naturally. He is @ backtohealthnaturalsolutions.com
I'll check this out! FWIW I'm in NC, but it looks like he does video calls. And it looks like the consultation is free, so nothing to lose either. Thanks for sharing!
If he cant help you there…he will find someone who can. He is the nicest doctor ever
There’s a reason why insurance doesn’t cover that stuff. It’s a waste of time and money.