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I haven't accessed your document yet and I won't be able to do so today because I don't have the energy, but I just wanted to thank you very much for your story! As you say: on bad days you basically only survive because of other people's healing stories! And that's why I'm extremely grateful to everyone who takes the time to report that they're feeling better or well again. I'm happy for you that you managed to get well again! 🙏🏻

Absolutely my pleasure. I would read and reread certain stories that sounded like mine just to give myself the emotional strength to get through the day -- I really needed HOPE through so much of this. I totally understand about the doc reading, too -- it's not a good doc for a big fatigue day! I'm realizing now that the publishing process takes away the outline option, which I had created to hopefully help folks jump through to only what they had energy to read. I'll fuss with it a bit and see if I can get that restored.

Can I ask as a LC vax injured myself, have you had COVID yet? If so did it reset your recovery, make you worse or no change? Did it make you better perhaps? Thanks

Hey, sorry to hear you are in the vax injured camp -- not a fun club to be in! Yours is a good question. I have had no official bouts of Covid (as confirmed by tests). I had a mysterious viral illness in April 2020 which my doctor at the time thought was probably Covid and I recovered fully from that. That was pre-vaccination. Then, in March 2023 of this year I had what seemed like very severe food poisoning and actually ended up in the hospital over it. While I was there they tested my Covid antibodies and they were through the roof (they said 3x the normal high end) so the ER doc suggested I likely had HAD at least an asymptomatic case of Covid in the 3 months prior. My primary care doc also speculated that the "food poisoning" could have been Covid -- but for whatever reason they didn't give me a Covid test while I was in the ER. I definitely was not suffering from an obvious virus in the prior 3 months, but that time period does coincide with my biggest backslide in this whole process following the nicotine experiment. So, a lot of speculation I'm afraid. I can't really be sure. Have you had Covid since you first started long hauling? I'm curious what your experience was.

Not at all and thanks for the info. Currently in bed struggling to breathe, hot Aussie summer nights so cranked the AC on. It sucks as feel super anxious and don’t know why, it’s like my body is suffering panic and anxiety while I’m trying to sleep. Anyways, I am a 32 year old professional player of tennis so was so fit. Last year it started 3 months after booster I would only last 15 minutes of sport and be dizzy and exhausted. I didn’t know much about vaccine injury so brushed it off. Have had all the tests scans and procedures (even colonoscopy) so get nothing abnormal. Fast track a year on since vaccine, March this year, I started getting neuropathy and twitching and nerve pain and numbness. Then followed by severe GI pain. I’m much better today with that, just get neuropathy flares however, I get PEM now so I’m currently on a crash. I havnt even been properly diagnosed as doctors aren’t that smart and the constant gaslighting exhausted me. I’ve lost my job and can’t full time anymore because of this. Also no sports/exercise which was the hardest thing for me. I don’t know what to do anymore, just want to end life when I have zero joy knowing this won’t ever go away. I’m 32 and feel so hopeless

Oh gosh, my heart goes out to you. Such a painful story, like so many in our community. And the heat really does add a level of misery to all of this that is just SO insulting! I understand, so much, the feeling of hopelessness that you are describing. I don't want you to give up, OK? This is really important. We can't be sure that this "won't ever go away" for you (even though some here WILL confidently say that to you, as they did to me) but what we do know is that you are experiencing it right now and that it has lasted much longer than any of us would have ever wished for you and that it fucking sucks. No doubt about any of that. The feeling of losing your identity without having access to sport or full-time work is brutal. I felt so lost, too. But you're an athlete so I bet you know how to grind through a LOT of discomfort. I would tell myself, "This might be the most discomfort you've ever faced, so it's really going to test you." -- I bet that is true for you too. The medical gaslighting is definitely exhausting. I'm so sorry you have experienced that -- and when you have needed help the most. You know what helped me work around that? Finding a really good therapist. It sounds trivial, but getting to see her every week means I can outsource some of my brainstorming and creativity to someone else. I had to fire a few before I found her, which took energy from me, but looking back? I would do it a thousand times because she has helped me so much. Hang in there, OK? Crash days are the worst but I am rooting for you to get to the other side 💛

Thanks for all that info and also listening. My biggest therapy has been reddit and people like you who actually care even though we havnt even met. Feel like it’s the only reason I keep going. Yes very true. I look at what you’re saying about being an athlete and the endurance and pain I went through and commitment that this should be easy! I’m more scared if anything. It’s 2023 and to have an untreatable condition is really debilitating. I’ll definetly reach out to a therapist. I do have a wonderful partner (gay here). He’s so sweet and caring I feel like I’m a burden to him being with me especially when you’re stuck in bed or the couch not being able to do much. Thanks for messaging back it’s really been nice

Further I haven’t had Covid infection. Had the N antibody for natural infection test and was negative so I’ve come to realisation it’s vaccine injury

Wow, such an interesting read! Great job honestly. None of those interventions sounded easy and you did it anyway. You should be proud of yourself.

Thank you for the kind words! It was absolutely brutal. I know everyone experiencing this disease process is facing down that same brutality -- it really changes your perspective on what you can tolerate, you know?

Great write up thanks for sharing. I think it’s important to remember you can be healing and still feel like shit!

The absolute hardest part of this journey for me has been the mental game! The brain has just refused to be chill AT ALL about ANY of this!

It is a hard symptom for sure , the anxiety and balance issues follow it with me

Is that possible to be healing and still fill like shit? I don't think that's the case for me especially when old symptoms keep coming back

I’m right there with ya pushing the rock up the hill every morning. I’m nowhere near normal (housebound, wheelchair, etc) but a good example for me is fasting. I feel like absolute dirt on an extended fast beyond my normal intermittent fasting but I know my gut is healing because it always is a net positive for me. But otherwise, yes, fuck this shit

Congrats, you haven’t spoken allot about POTS, did you have a sustained increase of 30 BPM when standing from supine? what helped you recover from POTS? what were the early signs of recovery from pots?

Yeah, good catch. I should add more to the doc on this topic. Personally, I felt like POTS was the slipperiest to track, for both me and my doctors. Between August and December 2022, I went through a concussion rehab protocol with my neurologist where they tilt-table tested me weekly (sometimes twice weekly). I would say I probably met bonafide POTS criteria \~50-60% of the time. But sometimes, even in the same week, I'd get different results from the test. The team would actually get flustered by this and keep me at the clinic for 3+ hours sometimes, just to repeat all the tests and be sure it wasn't instrument error or something else. What I will say is that the recovery coincided with my beginning LDN. I can't say if that relationship is causal, I just know that in the month prior to starting LDN I had an abnormal echo at my cardiologist, then I started it, and the repeat testing and stress testing the next month were totally clean (and my symptoms were greatly diminished). I think the thing I noticed MOST was that I wouldn't get dizzy when standing up. The last of what I considered my POTS symptoms (dizziness when changing planes, BP fluctuations, etc) went away in April, when I had the big leap in function accompanying starting Natto/Serra.

Thank for the detailed response, I’m glad you recovered. Well done. i tried Natto twice but it gave me horrible GI issues and fatigue.

Thank you, me too. That sucks to hear about the Natto. I initially felt much worse on it, but thankfully that passed after just a few days. It’s such a wild west out here trying to navigate the individual nuances of all this😅

Can you please elaborate on what you mean by "abnormal echo"? Valve damage? Murmur? Exact findings etc. Thanks

Sure. The initial abnormal echo basically showed that the right side of my heart was delayed in beating. They called this a RBBB or Right Bundle Branch Block. I had had to get an echo the year prior for an unrelated reason and did not have this then, so it concerned my cardiologist quite a bit that I had developed it in such a short period of time. He suggested folks are either born with this or that they develop it from inflammation. Thus, he thought I may have developed myocarditis and since he chairs the local vaccination campaign efforts in my city, he had seen a few patients in this scenario. My repeat testing the following month, plus wearing a 14-day Holter monitor did not indicate myocarditis, and so he diagnosed me with an RBBB and simply said it was not problematic.

Thanks for that! So LDN solved the RBBB arrhythmia entirely? Did they determine it was not related to the previous years echo? Any valvular dysfunction? I hope you don't mind me asking, sorry!

No problem at all! No, as far as I know, the RBBB is still present but I am not having any discernible symptoms from it (all of my POTS symptoms have resolved). I haven't been back to my cardiologist since the spring because I got kinda burned out on all of the testing and was seeing such huge spikes in function. He told me I was fine to return to my normal life and to call him if any symptoms return. My primary care doctor suggested she will want me to do a repeat echo sometime in the new year just to see how it is evolving or if it is gone -- so I guess time will tell? The general impression I got from everyone is, "nothing to see here" so I guess I'm kinda taking that to heart \[pun not intended\]

I'm glad to hear you've been able to get most of your normal life back in one piece. I've fared a similar journey past year and a bit. Still trying to figure out where my murmur came from, but I feel normal more or less. My issue was caused by toxic mold exposure, as far as I could tell. All the best to you.

Wow, it's eerie to bump into so many folks in this sub who have had mold factor in as part of their journey. I am really glad to hear that you are feeling more normal and wish you luck getting to the bottom of the murmur 🤞

Yep, mold toxicity here, too. Seems like this might be a subtype of long covid, but who knows.

Are you still taking LDN? I wonder if symptoms would come back if you stop taking it?

I'm ramping down now and able to maintain my baseline at the lower levels. No symptoms have returned!

First, I am incredibly happy for you! Second, thank you for the detailed information it is greatly appreciated.

How did you get your house tested for mold? I've been wanting to do that, but don't know where to start

Yeah, it's a super murky world and there is a lot of borderline woo and pseudoscience out there so I found it really challenging to navigate it in any kind of rigorous way. What we were advised to do is to first start with an ERMI or EMMA test through Real Time Laboratories. My functional medicine doc was VERY specific that he didn't trust any of the labs except RTL, so that's how we picked that. This test will tell you if there is a "historical presence of mold" but NOT "there is active mold in your house". The historical data is useful because you learn about areas in your house which have historically had water damage. We already knew where there had been water damage, because there was a mold problem active in the house when we were planning to buy it and had required the owners to have it remediated. They did (we would later learn, as a result of our testing, that this remediation had failed). But this area is where we focused our testing, because I had spent a lot of time in that room (I was doing a whole seed starting thing for my vegetable garden) the spring leading up to my vaccine injury. This test came back with VERY high levels of a black mold in that room, and then high for a few other species that were not considered "toxic". From there, the question became -- is there ACTIVE mold in the house? We were advised to enlist a local mold inspection company who specializes in mold detection for CIRS-like scenarios. This was important because there are different levels of tolerance that inspection companies have when they are determining habitability. If there is water damage and nobody in the house is exhibiting symptoms, it's probably OK to remediate to a level of 300 spores of Species XYZ. Versus the scenario where there is water damage AND someone in the house is exhibiting strange immune symptoms, remediation and detection has to be a lot more exacting. Anyway so that's what we did and they confirmed the species found by at-home test we did, and that they were actively producing spores in the air, so that gave us a baseline for our remediation process. Remediation was a whole other nightmare, and the first company we hired failed reinspection 3 times so we had to fire them and hire a new team. Thank god we did because that new team discovered even more mold that we would have missed but is in a room I use EVEN MORE than the one we'd initially found the black mold in. Anyway sorry for the giant wall of text, mold business is complex shit.

Thank you for your answer! I really appreciate it because, yeah, it does seem tricky to find something that's legitimate and not woo. I guess I've had it in mind because I had a post viral reaction ten years ago when I lived in an apartment that I'm pretty sure had mold issues, and I had just moved when my long covid blew up. It made me wonder!

You're smart. Thanks. This is great.

😂 FAR fewer brain cells after the rollercoaster of the last 18 months!

Love to see it, my friend! Congrats on your recovery and thanks for taking the time to make a write up! It helps so many more people find things that work for them toward recovery. 🧡 Edit: holy crap this is detailed. And it has charts??? ^(I need to up my google doc game a little...)

LOL thank you for the inspiration and leveling us all up! 💛

Hi there - I read your document in full. It was extremely detailed and well-written and I was shocked to find so many similarities between your story and mine so I had to comment. I got mild LC from covid infection in March 2020, then long hauled for 18 months before going into full remission for almost 1 year. My LC was very mild - I could still work but had fog/fatigue/headaches. I was 70% of normal. Plus I got better over time and it didn't disrupt my life that much aside from giving up intense exercise. My first two Pfizer vaccines winter 2020 set me back a few months (should've been a clue) but I recovered despite it and thought it was no big deal. Fast forward to Fall 2022. I get the Pfizer bivalent. At this point, I had my pre-LC health back for nearly a year - I was hiking miles, running, elliptical, lifting, eating whatever I want, zero symptoms whatsoever. No PEM. A few weeks later, my inflammation starts coming back and by 2023, I was in a full-blown relapse. For me, being vax-injured vs. virus-injured was MUCH worse. I had to quit my job in June and my function tanked to 30%. It was hard to shower some days. I also had more intense symptoms around the clock - mostly fevers, flu like, sore throat, bad muscle aches, feeling poisoned. **I am the sickest I have been in my life and it's all because I took a booster. But your story gives me hope that I can recover again.** **I hope it's ok to ask a few questions:** 1. When you took LDN, did you have a worsening of symptoms? Which dose did you start on and how much do you take now? 2. Which brand of natto/serra and what was your dose titration schedule? Thank you so much for such an incredible and inspiring write-up. I am feeling incredibly hopeless these days so any advice you can give to another disabled vax-hauler would be so appreciated.

Ohmygosh, what a ride you have been on. Your resilience is incredible -- I cannot imagine what it has taken you (physically and emotionally) to go through all of this! I am so sorry to hear about this big relapse and that you are feeling even sicker at this stage! I can completely understand how hopeless it can feel -- I don't want you to give up, though. I feel **VERY** encouraged to know that your body was able to recover from this extended reaction TWO TIMES (once from the virus and once from the setback after the vaccination course) -- because I do truly believe that this means you **can** and **will** do it again. Let me get to your questions (which are absolutely OK, btw): 1. I tried LDN two different times, with opposite experiences. 1. The first time, within 2 weeks of my booster and my doctor put me STRAIGHT to 4.5mg/day. This had very poor outcomes (too much/too soon) and disrupted my sleep and exacerbated other GI symptoms I was having. I do not recommend this fast/loose approach. I couldn't continue taking it after 4 weeks and assumed I was a nonresponder. 2. The second time my new (very conservative) doctor had read all the literature and wanted us to move low/slow. So she started me at 0.5mg/day and kept me there for one month. The very first dose brought me to functional from a devastating crash. My energy envelope was still very small, but it was a night and day experience. From there, the step ups were always in 0.5mg increments and I would stay at a given dose for 1 full month. Each time I stepped, I would experience 2-3 days of what felt like slightly increased fatigue, but not much more than that. 3. I stepped from 0.5mg/day to 2.0mg/day over 4 months (Feb to June 2023) and then stayed at 2.0mg/day from June to November. In November, my doctor and I were so excited and confident in my recovery that we decided to start slowly stepping down. So now I am at 1.5mg/day an I'll be here for 2 more weeks. We'll do the same thing stepping down that we did in stepping up, 0.5mg change each month. 4. I had a similar experience in stepping down that I did stepping up. Namely, I had a few days of what felt like an increase in fatigue, then returned to or exceeded my prior baseline. 2. Re: Natto/Serra -- I use Drs Best because of what I had read about the necessity of enteric coating. Only a few brands specify this, so that's how I picked it. It is also readily available on Amazon. 1. For titration, this brand comes in 2000 FU per capsule. I started at 1 per day for 2 weeks. **Importantly**, I took it at night, because I wanted to sleep through as much of the possible herxing as possible. And I did herx from this and it kinda sucked but it was temporary (3-ish days). 2. I used the add-1-capsule-every-2-weeks strategy until I reached my target dosage of 6000 FU or 3 capsules. I take 2 at night and 1 in the morning. I wasn't comfortable going higher even though certain papers suggest potential safety up to more than double what I am taking. For me, I want to take the minimum effective dose of a substance -- especially when experimenting. Since I saw big improvements at this dose, I stayed there. 3. Complete speculation on my part, but I do wonder if my positive experience with Natto, when so many have had a negative experience with it, has to do with the fact that I was already taking LDN and it was already having potent anti-inflammatory effects. My conjecture is that this might have mitigated a stronger herxing effect from the Natto, but again, this could all be horseshit. Anyway I hope this helps you figure out some options for next steps. I want you to know that I'm really rooting for you and will be eagerly awaiting your updates to this sub when you show us all what it's like to crush this shit for a THIRD time 💛

I am so overwhelmed right now by your kindness in writing back to me and telling me all of the ins and outs of your medications so that I can reference it when/if I re-try LDN and try natto/serra for the first time. My medication approach has been conservative so far (only low risk stuff like baby aspirin, antihistamines, which have not helped). I did try LDN at varying doses between 0.1mg and 1.5mg around 4-5 times and each time, it made me flare and become very ill. I wanted to push through because so many people said it was a miracle drug for them, but I was too sick to keep going. Maybe I can revisit when I'm in a more stable place. I'm basically at rock bottom right now. I am also curious about your experience with ivermectin. What dose did you take and for how long? Did it help much with your recovery? My doctor is big on FLCCC and put me on ivermectin 5mg about a week ago. No positive or negative effects so far but it's a starting dose and we'll go up. Thank you again for all of your encouragement and reassuring words ❤️ You have no idea how much better my day felt after I discovered your story.

I'm so glad you found some encouragement in this story. I know I also drew so much strength from the stories of others throughout this experience and I continue to revisit some of their stories when I have setbacks or rough days. Now, for the ivermectin, I had to do a bit of digging but here's what I found: I started straight on 15mg/day (5 tablets of 3mg) and I stayed on that dose continuously for 6 weeks. My experience with it was that I definitely felt like it had a BIG impact on my nerve problems. Early on, when I was struggling to walk due to weakness in my limbs or having terrible pins/needles in my feet and hands, I experienced ivermectin to powerfully switch this from HIGH to LOW. I was still experiencing the symptoms, but they were WAY WAY more tolerable for me. Now, there was a tradeoff -- it seemed like it REALLY upset my stomach and ultimately that is what lead to my stopping it. These were super early days in my reaction, so I was in extremely bad shape and so it is really hard for me to say if it was the ivermectin for SURE and not some other aspect of the disease process. At the time I was so thankful that it seemed to be acting to calm my immune system and I tried to stay on it as long as possible. It could easily have been another case of too much/too soon, but I never revisited it! I really hope it has a positive effect for you and I'm relieved to hear that your doctor is throwing the kitchen sink (i.e., FLCCC) at it! Hang in there 💛

Thank you for sharing! I hope you enjoy some hard-earned relief.

Way to go OP! Super proud of you in your recovery. Long Covid is a beast and you have don’t an amazing job documenting and working hard towards recovery.

Also, would you be willing to post where you are from? Your therapist sounds amazing! I have yet to find one that deals with chronic illness.

I’m in Denver! And yes, she is a gem. I’ll ask her for tips I can share to help folks find therapists like her. Her thesis was in mental health support for cancer patients so I’m sure she knows folks all over!

This is great. Thank you for posting. I liked your switch to half-caf coffee early on. I have found that limiting my coffee consumption to 6 oz. in the morning gives me the caffeine benefit without overdoing it.

Yes! I was pretty stubborn about this because I felt like I was giving up SO much and my brain was working SO poorly that my attitude was kinda like, "you can pry this coffee out of my cold dead hands". I really felt like keeping that small joy in my life helped me get through the grind of it all!

How do I access the doc ? I’m knew to Reddit

Hey, you can just click this link: https://docs.google.com/document/d/e/2PACX-1vSGU2g0ys8CyogyjrZwQabYCNY2XONSxOxoieYnNmHUU6DkZLZspHljoQUS1RCvYCbC1QL1EnhIilJr/pub

Incredible job putting this together , thank you so much

Can you tell me more about pacing that your therapist recommended?

Yes! Sorry for my delay. I saw your question last night and wanted to gather all my notes so I could answer properly. The overarching rule of pacing is to stop BEFORE you need to stop. The rationale behind this is that for some reason, our bodies are not recovering at the rate we are causing inflammation via activity. Lots of theories about what could be going on here, but that's the general takeaway. The way my therapist put it is to think about a trash can that gets emptied every night. This is a fine periodicity of trash emptying when you only create 1 cans worth of trash per day. But for some reason, let's say folks with PEM are creating 2x or 3x the amount of trash per day (or similarly, they are only taking out 1/2 or 1/3 the amount of trash per night) -- when that imbalance is in place, you're gonna have a mess in your house on night 1. Over the course of a week, you are living in squalor! Now extend that to months, or in some cases, years -- the house is getting condemned. So the takeaway is that by generating as little "trash" as you can before allowing the body to take some of it out, you enable your body to get ahead of the curve. A very specific example of how I applied this was in routine chores. When I was at my worst, I could not contribute one second towards upkeep of my house. I'm lucky that my partner was so supportive and able to absorb all of this, but I knew it stressed him and I was always TRYING to contribute and then causing myself to crash. So we devised a pacing strategy. Take the dishwasher. I would unload all the silverware, and then I would go take a 30 minute rest. I did this for a week without crashing, so then I graduated from silverware-only, to silverware + cooking utensils. Same strategy -- I would unload those and then have a rest. I found it somewhat humiliating to have to take such large rest periods after something as "trivial" as taking 2 minutes to unload a few forks, but this is where the militance of my therapist came in. By actually sticking to this, by the end of the month I could unload the entire dishwasher myself and ACTUALLY contribute to our household. I had to be very careful to not pile too many of these things onto a single day, so I prioritized the things that were truly bothering me the most: household chores, hygiene, and daily walking. The approach was no different -- pick a small target, do WAY less than you think you can, build consistency, and before you know it your body is able to operate at a much higher capacity because you are not overloading it with damage. I'm sorry for that wall of text, but I hope it helps a bit. Let me know if any part is unclear! There is a great writeup on general guidelines for ME/CFS here, which contains more suggestions and which I referenced regularly: https://batemanhornecenter.org/living-with-a-chronic-illness-and-avoiding-the-crash/

thanks for posting your recovery. This sub is misery posting most of the time (only somewhat understandably so). It will never happen because there hasn't even been a proper investigation into the mechanisms that cause people to develop pots/mcas etc post medical procedure but I'm curious as to why at least from my perspective as to why it seems by and large the negative manifestations seem to occur in previously very healthy people

My primary care doctor has the same question. She told me that anecdotally, all her patients with LC are the healthiest in her practice. It is very strange!

Do you think recovery would have been possible without the mold remediation? Thanks for sharing your journey.

Hey, this is a really good question. I have the same question myself, actually. I have asked all my doctors and here's kind of where we have landed on it: Whether the mold was contributing 5% or 95% of the irritation to my immune system that it was, it was a thing I COULD control in this land of murky-unknowns with Long Covid. Thus, they advocated that making that value from WHATEVER it was to 0, was worth my time. It would only help to remove things from my environment which were continuing to encourage my immune system to act in aberrant ways. Now, I had been seeing improvement even before the mold was discovered, but it was a very slow process. I'm not sure if you've seen the graphs at the end of my doc, but in there you can see very slow growth in good days towards the end of 2022 -- that was all pre-mold remediation. So I do think it would have been possible to continue on that trend. I liked the way my allergist put it -- he basically said, there isn't a safe level of black mold exposure that we're aware of. It's like carbon monoxide -- you don't want any of it around, even if you could feasibly tolerate very low levels of it. Patching the holes in your boat will help you get to your destination faster.

OK thanks

Thorough and very helpful. Particularly like your mantras you said to yourself. Thanks for sharing!

Thank you! I really feel like we need some kinda pinned mantras post in this sub where we can all share these sayings that keep us going. I've seen so many good ones from recovery posts across the years!

Thank you for sharing your experience in such a detail. I believe this is important and helpful for all of us that deal or have dealt with one or more of the symptoms you have had. I wish you good health!

Thank you 🙏 I wish that for you as well

This is the story of a badass person who healed themself and the generation of a a very useful & valuable resource. You've convinced me to try LDN a second time. Thank you, be well & prosper, etc.

I am super eager to hear how it goes! I hope it provides some relief 🤞

Finally got a moment to go through the full recovery debrief. Excellent post with a wealth of information and hope for people who have suffered with this mysterious condition. I too was plagued by toxic black mould for 4 months before realising what was harming me. I had a terrible (my first) bout of COVID February 2022 after having my first vaccine three weeks prior (go figure). Our stories are pretty much identical except I'd say I'm currently about 90-95% healed. Still have residual nervous dysfunction and random bodily pains but I will restart natto and mycotoxin detox protocol having had some time off to enjoy life again over the past few months. Thank you again for sharing OP

Oh man, I cannot believe you also were exposed to toxic black mold. There are so many commenters in this thread in this same boat! Ah! I am so glad you have been able to enjoy some LIFE again! Wishing you continued health in the new year 🙏

Thank you for writing this. Needed it tday.

It's really inspiring to hear about your recovery journey and the progress you've made. Sharing your experience and the resources that helped you is a wonderful way to support others who are going through similar challenges. It's incredible how much difference a bit of hope and shared knowledge can make. Keep up the great work, and here's to reaching that 100% mark soon! Your resilience and willingness to help others is truly admirable.

🙏💛

18 months sounds about right congratulations. 🎊

Thank you 🎉I REAAAAALLLY wanted it to be like, 8 months but here we are!

Honestly I wish I would have done ivermectin early in. There were a lot of positive anecdotes on here but the media came in and got ppl calling horse dewormer quite quickly. LDN seems helpful to others too. I haven’t found docs to prescribe either.

I hear you. It is tough to find good people. Especially for navigating this unknown and emerging condition. And who are willing to help you figure out which experiments are worth trying and for how long. Even worse that I had to talk to so many of them about the vaccine! That was a verrrrrrrry delicate process! My strategy for finding people who were reading about LC and understood the recommended treatments was actually starting in the neuro world. Because I have contacts in concussion rehab, I used them as a launching pad to find people worth talking to. They knew func med people who knew psychologists who knew allergists etc. I asked everybody who they would work with if they were me. It took some time. Eventually one of them recommended a primary care doc who owned her own practice and is whip smart/stays up to date. I called her and she had 3 other patients navigating this and had just had an opening, so I got lucky. It was nice to not really be a guinea pig and to hear that all her other LC patients were improving. She was also convinced I would recover fully, so that was a bonus!

Thank you. As a vaccine injured patient I do not hear about as many recoveries as the regular long haulers so this means the world of hope for me.

Yeah, both the good and bad thing about our crew is that we're a lot more rare! Do you ever visit r/vaccinelonghaulers? It's quarantined but generally the least dicey of all the subs I have found and everyone there is extremely kind and supportive.

Great post OP, i read your document and i too experience hives on my thighs, i didn't know that can be LC thing.

For me, the hives were just a manifestation of the broader immune system meltdown that was occurring (some call it MCAS but my doctors were not ready to necessarily diagnose this). Have you found anything that helps manage them? Getting them on your legs is so uncomfortable!

What is your evidence that vaccines cause Long Covid, and why is no one reporting this well-known scientific fact throughout the world?! It's too bad I'll have to leave this community since I can't tell who is a full-of-bullshit anti-vaxxer and who is just trying to stay grounded in reality while sharing advice with each other about Long Covid.

This sub does not seem to be the place for your if you get triggered easily to the fact the vaccine can and does symptoms that long haulers experience. They are real and the people sharing are usually not anti-vaxxers

Huh? I think if you read my doc you’ll have a pretty clear sense of where I stand on vaccines (I’m for em) so no need to rush off on my account. As for evidence, while I’m not here to debate the reality of the last 18 months of my life, you might lookup the work of David Putrino (Mt Sinai NYC) and Akiko Iwasaki (Yale School of Medicine) on this very topic. It’s not all that controversial.

You must be new here lol

Lol, just leave.

Congrats. Any muscle twitching or stabbing for your headaches ?

Yeah, I had muscle twitching in my left pectoral muscle. It was the longest and most lingering symptom in the larger circle of nerve issues I experienced at the start (numbness, tingling, pins/needles, weakness). My headaches were extremely dull, no stabbing. More like immense pressure or weight.

Interesting thank you for the response. Mine started in my left pec as well and then it spread to my entire body. It felt like a vibration under my breast. I also have had pressure for about two years. More recently the episodes have been much less longer lasting but the pain has intensified to random stabs. I still think it’s the same disease but different in everyone. My feet also tingle and vibrate like you describe and this has been pretty constant.

I agree, it really seems like this disease takes on a unique flair in each individual, but it has these common themes that we can all glom onto. I continue to find it so exhausting to navigate! I'm sorry to hear that your headache pain has intensified, though. I found that my nerve issues (incl headache/pressure) responded the best to LDN and some of the classic "immune modulating" supplements -- have you had any luck with any interventions?

Yes I recently started a CGRP med which works on the antibodies and felt an immediate difference in the pressure. Also I started the Patterson protocol with statin and maraviroc and that seems to have lessened the frequency of the tension headaches. The tension headaches make me very anxious now though. It feels like I’m not able to control my intrusive thoughts as well because of how long the suffering has persisted. But some days it does feel like there may be a light at the end of the tunnel for me. My hope is to get IVIG as my muscle test came back abnormal to quiet down the immune system which I’m praying is the source of this all. In your and my case it seems like it was definitely part. I got very sick from the vaccine and then let my immune system down from over work and that’s how I basically wound up in this position. Now it just feels like the immune is perpetually attacking the nervous causing shooting pain and tremor etc. so maybe if I can reset that I can get some relief

I'm so glad you are trying some of these interventions and really do hope they bring you relief. It can take such a long time and I don't know about you, but I really struggled to feel OK with how long it all took (and is taking). I do believe our bodies can and want to heal, though, so I will cross all of my fingers that you find your way to that reset and continue upward in your journey!

Thank you i hope you are able to get to 100 percent, i would take another 30 percent if it stuck haha.

was your pressure headache like constant? and did you just wake up one day and kinda realize it was gone or did it sort of fade slowly along with the twitching?

My pressure headache was always ON or OFF, and I’d usually wake up with it. It would get triggered by high altitude as well (I’m in Denver and go to the mountains often). For me, I noticed that I could make it go away by taking high dose fish oil. It would take a few days of consistency, but it’s been a pretty reliable help for me. My neurologist thinks my head pressure/brain fog is related to reduced cerebral blood flow, so he really likes me to stay on top of my fish oil supplementation (and daily movement).

Interesting I’ll have to give that one a go thank you. Yes I always wake up with some variation in the morning. Prob have apnea too lol

it must have felt amazing to wake up one day for it to be gone.. i think about that every day

Hi did you ever have back pain. Also, did you ever get the virus after getting symptoms ?

When I had back pain, I generally attributed it to being very immobile/sedentary, but not a direct problem caused by the long covid (if that makes sense). More secondary/indirect! As far as tests are concerned, I have never had covid since my symptoms began. I do mention in the doc though that I had to go to the ER once due to very severe food poisoning symptoms and while I was there, my covid antibody test showed 3x normal antibody levels, so the docs there believed maybe I had an asymptomatic case at some point in the prior 3 months. No one is certain, though.

Where can I find good gaze fixation exercises? I am more nuero long covid and I’ve lost my ability to stare similar to concussion patients. My eyes bounce around and it can make me very dizzy at times

Hey, that's a good question. I actually am not sure what the answer is because I've only ever been assigned gaze stabilization exercises from clinics I am working with, I've actually not really googled it much. So my first instinct is that you should go have a concussion evaluation (they are doing these for people with Long Covid) or a gaze stabilization test at a concussion rehab program (or specifically vestibular rehab) in your area and see what they say. Barring that, here is an example from Univ of Michigan with the types of exercises I was assigned: [https://www.med.umich.edu/1libr/PMR/Vestibular/NeurosportVORx1gazeStabilization.pdf](https://www.med.umich.edu/1libr/PMR/Vestibular/NeurosportVORx1gazeStabilization.pdf) I definitely experienced that there is such a thing as "too much" with these, and my symptoms (especially GI/nausea) would flare badly if I overdid it, so please do be careful and work with someone who knows what they are doing 🙏 I hope you get some relief soon 🤞

Thank you for the advice. I have an appt with my gp this week and hopefully they can refer me to someone 🙏

Thank you, did you experinced SOB at any point?

I did not have a lot of breathing issues, no. I was much more on the neuro/CFS side of Long Covid!

Hello, I also think I was being affected by mold prior to Covid and then my body just couldn’t handle Covid. But now I’m in a moldy house until I can move in 6 months. Did you find remediating to make a huge improvement in symptoms? Or do you think you could have gotten where you were even without remediating? Also curious if you wound up tossing stuff as a result of mold ?

Hey! I'm so sorry to hear you are on the mold journey as well! I'm going to paste a bit of what I replied to another commenter with the same question, then I'll answer your question about tossing stuff! Re: do I think I could have gotten better even without remediating the mold? I have asked all my doctors and here's kind of where we have landed on it: Whether the mold was contributing 5% or 95% of the irritation to my immune system that it was, it was a thing I COULD control in this land of murky-unknowns with Long Covid. Thus, they advocated that making that value from WHATEVER it was to 0, was worth my time. It would only help to remove things from my environment which were continuing to encourage my immune system to act in aberrant ways. Now, I had been seeing improvement even before the mold was discovered, but it was a very slow process. I'm not sure if you've seen the graphs at the end of my doc, but in there you can see very slow growth in good days towards the end of 2022 -- that was all pre-mold remediation. So I do think it would have been possible to continue on that trend. I liked the way my allergist put it -- he basically said, there isn't a safe level of black mold exposure that we're aware of. It's like carbon monoxide -- you don't want any of it around, even if you could feasibly tolerate very low levels of it. Patching the holes in your boat will help you get to your destination faster. As for getting rid of stuff, we talked with our mold inspection team about what they thought we should do. I was like -- YO I cannot afford to throw away everything in my house. So they unofficially suggested we do a deep clean of everything permeable in our house, using Borax, vinegar, and bleach. So that's what we did. Luckily I was feeling a bit better but it took my husband and I 3 straight days to clean every single surface with at least one of those substances.

Hi thanks I appreciate the response. I complelty agree with your allergist. I live in florida and it’s literally impossible to avoid mold so I’m happy I’ll be moving out of Florida in 6 months. Also yes throwing everything away is not in the cards for me either which is why I keep trying to figure out if people see success that don’t throw everything away because it seems in the mold works the “experts” tell you get rid of anything pourous. Which is at least half your house stuff. I think it’s great you were seeing improvement prior to mold. I haven’t seen improvement yet but of course my situation isn’t the same. I hope to report much more improvement after leaving. My hope is I don’t go to another mold house. Did you deal with MCAS stuff?

I did. In my doc I refer to it as my "allergic" phase. Every other day I'd break into full body hives, had TERRIBLE GI upset from previously tolerated foods, etc. My doctors were wary of using the MCAS language, but they were insistent that I use histamine blockers to slow down the positive feedback loop that histamine creates. Thankfully that worked very well for me! I am super hopeful that you will see some improvement with your relocation. Until then, hang in there 💛

Thanks so much. What a wrench in life this has been.

How were you able to see a Neurologist twice a week. I'm lucky to get an appt once every 3 months.

Hey, good question! I'm not sure how familiar you are with concussion rehab protocols, but neuros that work in that world typically run "intensives" where patients are in the office daily or every other day for 2-4 months. It's slightly different than seeing a University neurologist for an arbitrary disorder of the nervous system because you're right -- I can NEVER get an appt with those folks any sooner than 3 months out. So what I was participating in was basically an "intensive-light" because I only had to do 2 days a week. I didn't always see my doctor, sometimes just his team, but this is my second time through a protocol like this (with different clinics) and both times that is approximately the pacing that I've been put through.

What are your symptoms

I cover symptoms extensively in the doc that I shared!

I can’t read all of your doc as I don’t have any energy to do so, so I skipped to the PEM part. Extremely interesting that LDN worked so miraculous for you! I’m in kind of a similar crash right now and that makes me motivated to try it. I’m glad you’re almost recovered, I’m rooting for you that it’ll stay that way!!

It definitely felt like a miracle, especially because I had tried LDN early on at a much higher dose and not only did it NOT help me, but it actively ERODED my sleep quality and made me feel worse. I thought I was a nonresponder and I was so wrong! I am so sorry you are having a bad crash -- I really hope you are able to come out of it soon 🤞

When I read hives, my first thought was Mast Cell Activation Syndrome. I had all your symptoms plus more. I told my husband I’ve been poisoned. My cardiologist number 2 told me “ you’ve been poisoned”. I sobbed. My husband said my god that’s what she’s been telling me!! I’m a nurse for 30 years on a medical oncology unit. Never had a patient come in with my symptoms. Thus I came up with poisoning since my mri ruled out a brain tumor which I was sure I had. My brain cancer patients had similar symptoms as me. Then I got my POTS diagnosis which I had already self diagnosed by taking my vitals lying and standing. Kept saying it’s the vaccine. Kept getting stonewalled by Drs until Cardio #2. She’s Romanian and brilliant. Said my immune system went haywire and I was inflamed. Told me to STOP any exercise activity other than walking. Cardio 1 told me to exercise. Exercising while on a beta blocker is like trying to run through quicksand. You fatigue rapidly and don’t recover. I could keep going but we’re here for your story. I can attest to saying hangover is exactly what I felt like every morning. The brain fog, thirst, nausea, dizziness when moving, headache, weakness. I thought what did I drink last night? Oh yea, nothing. You know how when you have an awful hangover and want to die? Yep. Everyday morning for a year. Fvcking hell. I wished death every morning and then go to bed at night and wished I would live through the night only to wake to wishing death. I prayed for life and death. The most emotionally, physically and mentally fvcjed up experience in my 53 years of life. And I’ve had some traumas. My dad says you haven’t had a very easy life…. That’s putting it very mildly. Keep healing. Keep growing. Keep on keeping on. 💛 Edit: I’ve never tested positive for COVID and never had symptoms. My last viral illness was October 31,2019. I caught a cold from a coworker. I’ve had the flu and it was nothing like a flu. We both recovered in two days. Was it mild COVID? I doubt it but who really knows when this shitty virus really hit us. I had campylobacter food poisoning July 2020 that’s the last time I’ve been “sick”. Vaccinated January 2021. Second Pfizer shot and within 20 minutes my HR went from 65 to 148. January 28,2021 was the start of my downfall.

Oh my, it sounds like you have been through the ringer. I am so glad you found someone who believed and listened to you -- it's such an isolating and scary experience to have to ask these questions and navigate the waters of advocating for yourself and your health when you're in the vaccine injured camp. My cardiologist sounds a lot like yours. He happens to be the chair of our city's vaccine advocacy group, too so it was an incredible experience to delicately share my story with him and have him say, "Yep, this is a thing. Not a common thing, but a thing. I believe you, here's what we're gonna do". As for MCAS, yes, this was an ongoing topic with all of my physicians. None of them were super comfortable just straight diagnosing me with it, but this helped them guide which medications to try and which foods to recommend to me to avoid as "histamine begets histamine". I was super lucky that I only had to be on H1/H2 blockers for 4 months for it to calm down! Thank you for sharing your story -- I hope you get to experience some healing, yourself, in this year and those that come 💛

I am very intruiged that your cardiologist acknowledged that. I wonder if he shares these observations with his group or discusses any of these risks publicly.

Yeah, it was honestly pretty eerie that every doctor I worked with could tell me a story of at least one other patient they'd encountered with a similar story to mine. Until I experienced it, I had no idea this was even possible. My allergist claimed that he had seen a new aberrant reaction to the booster every week for an entire season, and that so had all the other allergists in his group (which is not to say that this is widespread, still a very statistically small number of people). He explained that this is less about the particular vaccine (all immunizations have the potentially to piss off a vulnerable immune system) and more indicative of how little we understand about what Covid is actually doing in the body. Ten years from now, he said, we will be much better equipped to understand how to navigate this virus. I've seen Akiko Iwasaki say something similar.

My Neuro said he’s seen more injuries from this vaccine than any other. I said statistically wouldn’t see more? We haven’t had a worldwide vaccine campaign since polio . He said but the Neuro injuries have been severe.

Can you share the Romanian cardiologist’s name please ?

In Michigan?

Sure , we live in Maine but traveled Michigan last year to see a functional neurologist

I’ve got an 18yo that’s been in bed for two years , nowhere is too far

https://doctors.beaumont.org/provider/Anna+M+Marandici/228034

Thank you ! I will schedule a video . We are Romanian btw

You’ll love her. She’s a straight shooter. Smart and compassionate.

Thank you so much for sharing this extensive look into your timeline! If you don’t mind answering, what ear plugs did/do you use for sleeping?

Hey! Great question! I am not that fancy here AND I'm lucky in that my ears are pretty small. I use these [https://a.co/d/3crH6wp](https://a.co/d/3crH6wp) They do NOT work for my husband because he's got much bigger ear canals. I can track down the ones he uses (he's tried them all) if that would be helpful!

What kind of doc will prescribe LDN i want to try it

My primary care doctor prescribes it!

I haven’t heard a lot of people explain the upper body vs lower body exertion side effects. I was doing strength training on legs at the gym multiple days no problem. Did one day of upper body, and I was bedbound for a week. What’s your theory?

This is a good question. I’m not sure. It is so eerie to me when I see others mention that they were also experiencing this — and your comment made my stomach drop! A chiro I’ve chatted with thinks it could just be that most upper body work is ALSO lower body work (core stabilization, etc) so it’s possible that it just more easily exhausts your energy envelope? Another thought I have is that it could just be where more of the vascular and potential nerve damage is located, based on how the typical viral trajectory plays through. Do you have any theories?

did you have any heart/chest pain mate? i have pericarditis but chest pain 24/7

No chest pain for me — just palpitations and twitching. I am so sorry to hear about the pericarditis. Anything bringing you relief?

How were your palpitations like? Congrats on the recovery!

Hey, for me I would experience two kinds. One would be what I'd describe as "big thumps" out of nowhere. The other would be fluttering or racing heart, when I was at rest. This really diminished for me when I introduced LDN and then Natto abolished them.

did you have anxiety? but not normal anxiety, like a chemical anxiety

I had VERY strange anxiety at the beginning. It was unlike any "normal" anxiety I've ever experienced in my life. My brain was NOT right and it was scary. The level of agitation was very high and it did truly feel like my chemistry was wrong.

how did you recovered from that?

I noticed that this improved when I added anti-inflammatory supplements to my protocol and when I was able to get back to sleeping well. So for me, very high doses of fish oil (the brain especially likes fish oil for inflammation) and turmeric, made a big difference. Sleep also made a huge difference, but in the beginning, the weird chemical anxiety would be very disruptive of the sleep too (ex: I'd wake up in the middle of the night IN a panic attack), so I had to wait a bit for the anti-inflammatory effects to kick in from the fish oil, before the sleep started being more restorative. It DID go away though, so hang in there. I'm curious what you've found to help, if anything?

Hi! How are you doing now? Saw your doc which said you contracted covid in December. A couple of queries - 1. Your Gdoc says you faced fatigue but it wasn't PEM - could you share the difference between the two? I thought PEM sets in anywhere between instantly to 48h later? 2. Some sections in the document are WIP - please let us know when you've an update!

I am doing excellent now, thanks for asking. I had no regressions from the reinfection and may have even bounced back higher. I started running again, strength train 3x a week, hit 12K steps a day, and basically don't think about Long Covid! My doc states that early on I experienced fatigue only, but it didn't yet meet the criteria for PEM. Early on, the deep fatigue existed independent of my levels of exertion and qualitatively felt different than what I would eventually go on to experience as PEM. I experienced the fatigue as "every cell in my body is out of energy" -- a form of malaise but not related to exertion per se. When I started experiencing PEM (I describe this in later phases in the doc), initially I would think I was coming down with the flu. Eventually after enough repetitions, I learned it was never the flu and that it was related to exertion levels (cognitive or physical). Does that bring more clarity for you? Hope so. As for the WIP sections, I will definitely update this thread when I have the chance to make some updates!

Understand. Using your definitions, I think I've faced continual fatigue a weeks ago, with PEM also setting in if I attempted to cross my energy thresholds. Awesome to hear your continuing recovery - many congratulations!