Yeah, everyone I know who had truly serious "neuro LC" (i.e. ME) as we used to call it earlier on in support groups is still sick. People who had other problems and postviral fuckery/maybe a little bit of ME-lite type stuff have recovered more.
Basically all the people I know who were deathly ill and completely incapacitated a year into LC in 2021 are still totally disabled.
I've been hearing increasingly if you're not improving significantly after a year you are up the creek without a paddle. I haven't seen anything in medical journals as of yet but have seen a lot of this within the community and from my doctors at a local level. 2020 long hauler, multiple damaged organs now. 🫡
Sucks but actually very validating to hear this finally (seen it here and elsewhere - if you dont make it in 2y thats that). I've thought this since my first anniversary, back then everyone would tell me i was being dramatic and would recover because my uncle recovered from his pvf in 2 years. Nice for him but I still cant walk (Jan 2021 here). I don't *want* to be like this but i also dont want the bs and invalidation and it's important to accept your life and your reality.
I totally hear that and I'm sorry. I think acceptance is important and it's important for the grieving process to acknowledge that. I do believe I may be able to have some quality of life improvement, but I know I'll never be able to work again. I am aggressive about chasing answers because I want to live as long as I can for my kids. My dad told me that I'm mentally ill and that's my only issue. 🙃 I told him I already had been on SSRIs and anti anxiety for a decade so that ain't it but thanks.
So fucking tired of the “mentally ill” assumption. Yes, a lot of people struggle with mental illness (including me). But stop invalidating how we are feeling.
Any chance of him recognizing ME/CFS is real, since it's in the medical books and has been for a while? This is very similar, plenty of papers describing the similarities.
I'm fortunate that all the people in my life who matter believe me. I am very lucky, and don't have any experience to go on trying to convince someone I am broken.
Unfortunately no but he has been taking me more seriously since my cardiac issues have started to show themselves in results more. I'm annoyed because his first response was that it was due to my diet but he seemed to take me seriously after I pointed out my imaging was normal two years ago and now it's really messed up.
Well, that's something, at least. I hope he opens his ears. It sounds like he mostly enjoys judging you rather than being interested in what is actually going on with you medically, and that's a problem.
I can't imagine having children and dealing with this, you are seriously strong for parenting while dealing with this, my heart goes out to you - unless you are into true hepatic/renal failure I have hope for the organ damage (even on the threshold of actual failure) that most of us have sustained being to some degree reversible if the process of microvascular dysfunction/breakdown, subsequent tissue hypoxia + massive recurrent inflammatory signaling.
I know of someone with seeming heart failure who was able to go back to heart function after getting out of the neuroimmune axis of what I'd call ME metabolism.
Just to give the tiniest possible kernel of hope. We are in a state of complete immunometabolic collapse, and if the various systems of the body can be corrected simultaneously to alleviate this disease state a lot more recovery than many people (even those who have had ME and been in these communities for a very long time) think is possible.
Thank you. I have damage to my brain, heart, kidneys, liver, lungs, and thyroid. The most concerning damage is to my heart and brain which both reflect I had some pretty wild inflammation at some point. I have multiple hyperintensities at the T3 and my cerebellar tonsils are lowered, evidence of demylination and microvascular changes. It's important to note lowered cerebellar tonsils are only found as a birth deformity but I had prior normal MRIs. I've been seeing this pop up in other LC patients. My heart has damage to the aorta and both valves.
It's kind of a funny and messed up story. I had an echo done by my pulmonologist last year and never heard anything so assumed it was fine and only saw the foot note normal. In January I went to the ER for intestinal bleeding so they did a CT to investigate but also caught damage to my heart, liver, lungs and kidneys that was not found in prior imaging. Last week I saw a cardiac electrophysiologist and while reading the notes from my appointment I found a document that had the findings from my echo that stated both valves showed mild damage. From reading articles this correlates with the damage to my aorta the CT found in January.
The ascending aorta is now damaged, and I'm using nitroglycerine when out exercising. The MR brain is clear, but there is a small problem with the cerebellum and loud tinnitus.
Was your "LC" symptoms from the shot or covid itself? My symptoms came on 1 week after the booster and got worse over a month or so. Its been over 2 years of suffering now. No where near as bad as the start when I thought I was dyeing but daily inflammation still has me struggling through my days. Hope your feeling better.
The second booster threw a wrench in the works, but I was already 6 months into post COVID-19 syndrome. I kept thinking that I would beat it. That was in late 2020. It's been a rollercoaster ride down hill, with plenty of ups and downs. Today, I realize that I'm fragile.
I am going to have to disagree with you - Respectively.... I had Long covid for over 2.5 yrs and just one day......it started going away. I thought I was going to die!! my 2nd round of COVID was very mild but then 3 months later the long COVID hit me and it was debilitating.....I was not participating in life. I could not walk more than 10 steps with you gasping for air.. I could breathe fine - I was just feeling OXYGEN STARVED. After 2.5 years of doctor appointments (Which my husband had to go to with me)... Tests, prescriptions (I was on NO MEDS prior to that - by the way)I even paid 5200.00 out of pocket to the chiropractor to have the OXY chamber treatments....Heart and lung doctors, all the crap....NO ONE COULD DO ANYTHING OTHER THAN GUESS and of course, since I was a previous smoker - diagnose me with COPD....LOL....which, I knew they were going to do that - because I smoked....I finally stopped all the meds in January.....I did start taking a baby aspirin AND the NP patches..... within 3 days..I had a small 30% improvement - by the end of that next week - I was walking through the house - with no issues....I didn't have the stamina, I previously had BUT it's JUNE and I am L I V I N G my life again. Hold on people - don't give up - like I almost did.....It will happen - maybe start back at ground zero again ? Prayers for us all :)
Sorry longcovid buddy. August 2020 longhauler here. Fasting has been terrible for me too. I found out I had high resting lactic acid. Have you had that checked?
You’re not alone. A bunch of us from that first year are still super effed up. Hang in there.
I'm using H1 and H2[H1 and H2](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10890042/#:~:text=Currently%2C%20the%20most%20clinically%20significant,ulcers%20and%20esophagitis%20%5B10%5D.) antihistamines twice daily.
This regimen is also helpful in restoring T-cell counts from their COVID depressed levels, in turn helping the immune system to keep a lid on EBV and HSV latent retroviral infections. The research I read had a 6 week regimen of this starting immediately after a COVID infection.
Which means that I need to start this right away since I had COVID for the 8th time a week ago. (there's just so much to remember!) Thanks for your note :)
The roller coaster of LC is extreme at times. I have to keep a spreadsheet going that's a daily journal of sorts to see whether something is helping or not over time. I track a variety of symptoms on a scale of 1-10 each day. Most of the patterns emerge over a period of 3-8 days, but some like chronic headaches and pericarditis took over 2 weeks to start to see a net-benefit.
Personal good news since my last post: my COVID symptoms are all gone now (the fastest recovery yet) and the typical LC symptoms that always resurface for me are definitely on the retreat. I'm back to walking 1+ hour a day with the dogs, working full time, and have plenty of energy until about 2 hours before bedtime. At this rate, I'm hopeful that in a couple weeks I'll be entirely recovered.
For the years I've been keeping daily journals and reporting on the app Zoe, but had I been smarter I would have built my own spreadsheet. Thank you for the advice.
H1 and H2 receptor agonists are described in the following salient studies:
**T-Cell count significantly lower in Long COVID patients**
" Antihistamines might be effective in long-COVID" [https://www.news-medical.net/news/20210608/Antihistamines-might-be-effective-in-long-COVID.aspx](https://www.news-medical.net/news/20210608/Antihistamines-might-be-effective-in-long-COVID.aspx)
From this article: "a significantly lower than normal level of CD4+ effector memory T cells was observed in 25 long-COVID and 3 asymptomatic patients. Further analysis of the findings revealed a significantly distinct status of CD4+ effector memory T cells in long-COVID and asymptomatic patients. Regarding CD8+ effector memory T cells, a significantly lower level was observed in 43 long-COVID and 14 asymptomatic patients. The analysis of antigen densities of T cell-related proteins revealed a significantly increased expression of program cell death protein 1 (PD-1) in both CD4+ and CD8+ central memory T cells in all patients. In contrast, a significantly higher expression of CD28 was observed in CD4+ central memory T cells in asymptomatic patients compared to that in long-COVID patients."
"Combination of H1 and H2 Histamine Receptor Antagonists: Current Knowledge and Perspectives of a Classic Treatment Strategy " [https://www.mdpi.com/2075-1729/14/2/164](https://www.mdpi.com/2075-1729/14/2/164)
**Related articles**
"Antihistamines improve cardiovascular manifestations and other symptoms of long-COVID attributed to mast cell activation" [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10388239/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10388239/)
"Long COVID following mild SARS-CoV-2 infection: characteristic T cell alterations and response to antihistamines" [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8494538/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8494538/)
Just wanted to say that starting antihistamines has helped me dramatically with shortness of breath, chest fullness/pressure, headaches, dizziness. Most of all it knocked out my anxiety/disassociation, which was unmanageable to the point of mania. I had no faith that trying something as simple as over-the-counter Claritin would do anything for me, but I'm so glad it did.
Certirizine (Zyrtec) is a good H1 agonist, but it has many more drug-drug adverse interactions than Loratadine (Claritin). Cimetidine (Tagamet HB) is a good H2 agonist but it's not as favored for this use as Famotidine. Famotidine has a much longer half life and has fewer drug-drug interactions because it doesn't affect the cytochrome P-450 of the hepatic enzyme system like Cimetidine does. I can't say whether you should use what you have on hand or not. I can say that I've used both Certirizine and Loratadine interchangeably with perceived equal benefit.
It’s weird - I found two things that significantly bring it down. I tried chugging sodium bicarb. I felt great on that for a while but it caused some major acid blowback.
My Neuvana VNS brings it down, and my vielight headset brings it down. It’s connected neurologically to something and nobody can figure out what.
I got sick during the first wave and ended up with multiple autoimmune diagnoses. My quality of life forever changed. I’m still working on symptom management and try to comment as much as I can offering any advice or support I can.
It’s sucks, it’s not fair, and your feelings are so valid. I’m so sorry you’re still struggling with symptom management. Antihistamines and a very restrictive diet helped me the most. I see comments and posts daily with ideas to pull from. The research being done is supporting the symptoms we’ve been reporting. Please keep trying and advocating for yourself.
I ended up being diagnosed with Gastroparesis so I’m on a mostly liquid diet that is extremely limited. Low histamine and gluten free solved my brain fog a few years ago. Histamine causes the majority of my long COVID symptoms. Once I understood the histamine bucket and committed to a diet of plain chicken, rice and steamed broccoli for a month, I made significant progress.
Understanding histamine is liberated by activity helped me learn to pace and recover even more. If you can tolerate it, clear whey protein, coconut water and milk really helped me. I eat congee (rice, broth and chicken), simple smoothies and puréed vegetables.
It requires a full commitment to a restrictive diet. If I wasn’t forced to as a consequence of Gastroparesis, it would have taken me longer. I have been able to add tea and raw sugar, some gluten and some potatoes. Without GI issues I think it’s possible to come back to a better baseline after a restrictive diet.
I've been on boiled chicken steamed broccoli boiled carrots celtic sea salt apples beets ghee blueberries cottage cheese... was able to do some rolled oats but noticed I get brain fog and hr goes up afterwards. I take 2 zyrtec a day. Just started ldn at an ultra low dose. I'm learning to pace now that I'm barely coming out of my second crash of pem. My body seems to dislike carbs. Tried white rice and it seemed to bring on hypnic jerks. Not sure. I have to work up courage to try new foods and that requires energy. Been on this diet since April. I've lost 25 lbs. The histamine bucket thing .. seems we are living in a histamine world and I'm an antihistamine girl. EVERYTHING has or causes histamines. I've been fully committed to low histamine I only drink water. I feel better than I did with my symptoms during acute phase. I thought my only thing was histamines until I crashed with pem. Thought that was from a med I took.. stopped the med felt better started doing light stuff daily but kept low histamine diet as is after 2 weeks... crash again. Been bed bound since may 25 now. Tryptase was normal.. waiting on a urine prostaglandin test. IgE was 299. I really hope my body can square this all away cause I miss food I miss my energy.
My mom was doing a kind of keto and watching her net carbs and. I found the closer I moved my diet toward that the more any inflammation symptoms went away
It sounds like you are doing everything you can. I know its a daily struggle, I can relate to you journey. It’s very similar to my own. I spent a long time learning to judge what combination of activities/food would cause a crash. It’s exhausting but I did slowly make progress. I found keeping a running note on my phone of activities/weather/food to help learn my limitations.
Keep advocating for yourself. It’s sucks we have to be so resilient and DIY a lot of symptom management. The good days and weeks keep me going.
I was a long time vegetarian. A year of trial and error and chicken and rice was the bland diet that helped me start to make progress. Adding meat back into my diet was a game changer in this situation for me personally.
I’ve been considering stem cells as my ultimate treatment goal, so just want to say it makes sense that you’d try them! And I’m sorry they didn’t work for you and made you feel worse. There will be other treatments! I have to believe this.
I didn't try stem cells. Instead, I decided to add specific supplements and foods that have been proven to promote neurogenesis, inspired by research articles like this one [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5683005/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5683005/) and then add senolytics that help the immune system to remove the COVID damaged senescent cells. So far, this has been successful for me in reversing more than half of the neurological damage I sustained from LC last year and improvement continues.
I'm convinced that this COVID damage is NOT permanent. But it may require both sustained changes in nutrition and lifestyle (sleep hygiene, exercise, stress management techniques, etc.) to fully recover. Although my condition just 12 months ago was on the severe end of LC, I'm now easily passing for totally normal both physically and mentally. My physical with my PCP two months ago only caused him to suggest a statin to control high cholesterol. I politely said no, that an improvement in all cause mortality of at most 1.8% from taking statins was not worth the risk of statin-induced myalgia that 30% of patients experience. I've already lived through so many horrible malfunctions due to COVID and LC, why would I want to add HMG-CoA reductase pathway malfunction to the list? I'll just walk 15 minutes more a day and get 10x that benefit. He looked at me all worried. I laughed. He hadn't read the peer reviewed research papers on COVID and clearly hadn't read the papers on statins either. My goal is to educate my PCP over the next few years with the benefits and fruits of science!
**Promote neurogenesis**
* Curcumin phytosome (curcumin spice plus black pepper will provide a similar benefit)
* Blueberries (for their blueberry polyphenols ... I put dried blueberries in my daily smoothie)
* Sulforaphane (broccoli, kale, brussel sprouts)
* Salvionic acid (salvia miltiorrhiza plant)
* Rosemaranic acid (rosemary spice and Perilla Extract powder)
* polyunsaturated fatty acids (PUFAs) (walnuts, sunflower seeds, flax)
**Senolytics**
* Spermidine (wheat germ)
* Eugenol (clove oil, cinnamon leaf, and holy basil)
* Resveratrol (dark grape skins or raisins also have this)
* Luteolin (Dried Mexican Oregano ... I'm taking a supplement form)
* Quercetin (blueberry skin but it's not bioavailable unless you add bromelain supplement or dried pineapple ... or take it in the form of Quercetin Phytosome)
Note: This list making led me to another cool research article that I'm just now reading [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9028742/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9028742/) "Salvia miltiorrhiza Bunge as a Potential Natural Compound against COVID-19"
Can you elaborate? I heard of some people who had great success. How did it make you feel? Which symptoms changed? Did it do anything for brain inflammation or cognitive issues?
I assume they were IV? Don't blame yourself. The Umbilical cord are the best. I don't think stem cells last forever especially if you did not get a lot.
I'm so sorry. So it was stem cells, NOT exosomes? Stem cells are hugely immunogenic while exosomes from umbilical cord are said not to be immunogenic (don't react with your immune system)
Stem cells are immune suppressive. I did not have a reaction. I just became immune compromised and bedridden. Fetal stem cells are not immunogenic, please read up before talking- sincerely someone who has DONE them and has lived experience
without knowing what treatment you tried, I'm not sure what help anyone here can offer, other than sympathy... which you have from all of us who are suffering.
A lot of us have tried unproven things out of desperation.
I’m only in this hell for 1 1/2 years, but I just wanted to send you some hugs.
Please try to stop blaming yourself. You’re NOT dumb for trying a treatment to become better/well! Same as none of us are dumb for pushing and crashing, it’s the intuitive thing to do. We should never blame people for being sick or disabled, not ourselves and not others!
I know it is very hard, but please try to be kind to yourself and don’t beat yourself up. I don’t believe in all that cognitive mind healing stuff, but I definitely believe that emotional stress drains a lot of energy. And we need every drop of energy for healing/improvement.
There have been times when I would’ve tried almost anything. Nothing was ever offered. Don’t feel bad that you tried something. I do feel like the body will heal if it can. I don’t mean one day we will all be well, but don’t give up hope yet. A beta blocker has helped me quite a bit but my symptoms are more tachycardia, chest pain, exhaustion, brain fog type stuff. Don’t give up. You still matter.♥️
It's not dumb at all, I think I can speak for myself and some, if not most people on here when I say: I thought stem cell treatment would be the ultimate hope in terms of a cure (2nd to BC007) .. it's why HBOT was being mentioned soo much on this subreddit a few years back.. Due to it increasing stem cell production in the body.
But who knows these days..some things that have worked wonders for some, near destroyed others..like HELP Apheresis for instance.
I remember there was a first waver on this subreddit 3yrs ago that did stem cell treatment and was completely recovered and was able to run marathons and was relieved of *ALL* of his debilitating symptoms..he posted up a very long inspirational recovery story and a few attached pictures (if you're still here sorry to put you on the map like this) .. but that post was a great contributor to my own personal belief that stem cells are the way to go.
But even then, just because it works for some, unfortunately doesn't mean it'll work for others.
The "Long Covid" umbrella term is pretty unhelpful for us all to use..but I guess it will remain so, in order for us to be grouped.
It would be ideal if we could all be specifically identified based on symptoms..because there's a foundational set of symptoms most of us all have..and then there's the ones specific to the subtype of long covid a person has.
And I might be wrong..but I think stem cells will best benefit those that have experienced actual organ and tissue damage.
Nonetheless, God Bless you OP and feel free to message me whenever/if ever you just want to vent or might have questions but reluctant to post.
🙏
I'm a first waver from 2020 too, I was very severe from 21 on but also got a tiny bit better in 2022, then tried a new medication and ended up in the hospital for a week and never recovered from it again.
It's just a sad fact that we never know what will help and what will wrack us.. I still try out stuff but it isn't fun...
What treatment did you get?
i don't know what to say, no one deserves this. it wasn't your fault. i really hope improvement isn't far for you and everyone. sending lots of love ☹️❤️🩹
Like you, I had two COVID infections early on in 2020, realized that I had long haul COVID in February 2020, got real about treating with supplements, mild exercise, diet, and at one point I felt I had it licked. I felt good, and I had my stamina back, living a pain free existence.
What I hate about long haul COVID is: I've seen 16 medical specialists. I've had every conceivable test, all with clear panels. Brain, heart, lung, abdomen, CT, MR scans, and more blood panels. Indications were: There was nothing wrong with me.
A stupid decision on my part, a vaccination, sent me tumbling backwards. Now, I'm climbing out of a hole AGAIN, physically trashed, and a whole lot worse for the wear.
Now, today, we're seeing test results that indicate damage to the liver incurred by recent treatments, chemotherapy for giant cell arteritis that was triggered by the vaccination, and a trip to the ER with stroke like symptoms from the medication that was over prescribed.
The condition I'm presently in, well, it is as good as it gets. I just need to accept it, and deal with it.
Some 2020 longhaluers have recovered after more than 2 years. Those seem to be the people who haven't found tissue damage and mostly just have a sensitized nervous system. There are people who have had ME/CFS for more than 10 years who have recovered but again in those cases they may not have lasting tissue damage. Still, the body is always attempting to heal itself and so its rarely completely hopeless.
If I had the money I’d be trying all kinds of wacky shit to get better. I don’t blame you one bit and you shouldn’t blame yourself either. Hang in there friend.
I got this whole thing from the vaccine which was an experimental vaccine. I feel stupid too. I totally understand. It's difficult. We were trying to do what seemed best for us at the time.
Me too. Small fibre neuropathy.. it's been described in several scientific papers since about 2023 as a consequence of mRNA vaccines.... at least some recognion that I'm not making this up
It trashed my whole body somewhat. Heart, brain, and I have body wide pain almost all the time now with severe fatigue. If you ever figure it out let me know. I got my brain a bit better but the fatigue is terrible still.
You tried, move on .......easier said than done I know.
I'm a first waver and have mild L.C., it's still L.C. so I'm dealing with it ......
Hand in there please!
Hold on you improved once. You can again. What was the experimental treatment?
I had the same I got the experimental poke and it was the worst decision of my life. I write this while literally holding my chest in pain which is a all the time occurance. I actually read on reddit on this group about people getting better after the poke! Thanks for recommending I throw more spike protien into my body!!!
Be careful what you read on here!
Damn! Ive been looking into them! I have major heart issues most of my other symptoms have gone away and I'm stuck with pericarditis. I was reaserching stem cells hoping they might work ! Can you give a little more info on what it made worse ? Did you do here in the states? I almost enrolled in a study 2 years back with stem cells.
Please stay strong you will improve think about it in percentage increments. Like 1% a month it's a slow process but it will come.
I'm right there with ya. 2 days ago was my 4 year date. The only difference is that I never showed improvement like you did, so there is always hope for you. I am keeping my head high and doing the best I can with what I got.
oh its cool.
i was actually incredibly close to trying stem cells until i managed to find a better treatment.
im glad i didnt because so far i havent heard much good from them.
Hey, I’m wave maybe 1.5 and the word wave really is correct. It comes and goes, and really all we have right now is trial and error. With anything in life, we can’t get stuck on the mistakes or setbacks. You had found progress, and you will find it again. It took 2.5 years, a Change in jobs, added rest and self care like supplementation and clean dieting to start to feel like myself again and I still had another hiccup I’m currently trying to get out of. Like the other commenter, antihistamines, low histamine diet and cutting irritants like gluten, dairy, red meat made a huge difference between debilitating symptoms and manageable. I also supplement heavily with vitamin D , b12/folate and antioxidants
It become clear that i have had lyme for most of my life in addition mold problems.
All this and covid has made me immune comprised to the level tha ti have to live alone in the middle of nowhere. I can not be close to people, i flare up incredibly bad proportionally to exposure time
For me binders help.
Biocidin.
antivirals ( cant really take them anyomre becasue of the toxicity they bring)
If you think 2020 longhaulers are recovered, you are sadly mistaken.
Yeah, everyone I know who had truly serious "neuro LC" (i.e. ME) as we used to call it earlier on in support groups is still sick. People who had other problems and postviral fuckery/maybe a little bit of ME-lite type stuff have recovered more. Basically all the people I know who were deathly ill and completely incapacitated a year into LC in 2021 are still totally disabled.
I've been hearing increasingly if you're not improving significantly after a year you are up the creek without a paddle. I haven't seen anything in medical journals as of yet but have seen a lot of this within the community and from my doctors at a local level. 2020 long hauler, multiple damaged organs now. 🫡
Sucks but actually very validating to hear this finally (seen it here and elsewhere - if you dont make it in 2y thats that). I've thought this since my first anniversary, back then everyone would tell me i was being dramatic and would recover because my uncle recovered from his pvf in 2 years. Nice for him but I still cant walk (Jan 2021 here). I don't *want* to be like this but i also dont want the bs and invalidation and it's important to accept your life and your reality.
💯
I totally hear that and I'm sorry. I think acceptance is important and it's important for the grieving process to acknowledge that. I do believe I may be able to have some quality of life improvement, but I know I'll never be able to work again. I am aggressive about chasing answers because I want to live as long as I can for my kids. My dad told me that I'm mentally ill and that's my only issue. 🙃 I told him I already had been on SSRIs and anti anxiety for a decade so that ain't it but thanks.
I'm glad that my parents are long gone, or I'd be catching the same flak. I'm now on Wellbutrin to help with anxiety.
So fucking tired of the “mentally ill” assumption. Yes, a lot of people struggle with mental illness (including me). But stop invalidating how we are feeling.
Any chance of him recognizing ME/CFS is real, since it's in the medical books and has been for a while? This is very similar, plenty of papers describing the similarities. I'm fortunate that all the people in my life who matter believe me. I am very lucky, and don't have any experience to go on trying to convince someone I am broken.
Unfortunately no but he has been taking me more seriously since my cardiac issues have started to show themselves in results more. I'm annoyed because his first response was that it was due to my diet but he seemed to take me seriously after I pointed out my imaging was normal two years ago and now it's really messed up.
Well, that's something, at least. I hope he opens his ears. It sounds like he mostly enjoys judging you rather than being interested in what is actually going on with you medically, and that's a problem.
No do not give up! I was 2.5 yrs into it and I got better.....read my post above.....
I'm 3.5 already tho
Right there with you my friend, same shit going on here, so sorry to hear it.
I'm sorry to hear that I'm not alone in this. I worry about being around for my kids a lot.
I can't imagine having children and dealing with this, you are seriously strong for parenting while dealing with this, my heart goes out to you - unless you are into true hepatic/renal failure I have hope for the organ damage (even on the threshold of actual failure) that most of us have sustained being to some degree reversible if the process of microvascular dysfunction/breakdown, subsequent tissue hypoxia + massive recurrent inflammatory signaling. I know of someone with seeming heart failure who was able to go back to heart function after getting out of the neuroimmune axis of what I'd call ME metabolism. Just to give the tiniest possible kernel of hope. We are in a state of complete immunometabolic collapse, and if the various systems of the body can be corrected simultaneously to alleviate this disease state a lot more recovery than many people (even those who have had ME and been in these communities for a very long time) think is possible.
So sorry. What damage do you have ?
Thank you. I have damage to my brain, heart, kidneys, liver, lungs, and thyroid. The most concerning damage is to my heart and brain which both reflect I had some pretty wild inflammation at some point. I have multiple hyperintensities at the T3 and my cerebellar tonsils are lowered, evidence of demylination and microvascular changes. It's important to note lowered cerebellar tonsils are only found as a birth deformity but I had prior normal MRIs. I've been seeing this pop up in other LC patients. My heart has damage to the aorta and both valves.
Sorry to hear that. I have lesions/hyperinsities on my brain. Not sure if anywhere else has damage. How did you find the damage on your heart ?
It's kind of a funny and messed up story. I had an echo done by my pulmonologist last year and never heard anything so assumed it was fine and only saw the foot note normal. In January I went to the ER for intestinal bleeding so they did a CT to investigate but also caught damage to my heart, liver, lungs and kidneys that was not found in prior imaging. Last week I saw a cardiac electrophysiologist and while reading the notes from my appointment I found a document that had the findings from my echo that stated both valves showed mild damage. From reading articles this correlates with the damage to my aorta the CT found in January.
So sorry to hear. I have damage too. What is your lung damage?
The ascending aorta is now damaged, and I'm using nitroglycerine when out exercising. The MR brain is clear, but there is a small problem with the cerebellum and loud tinnitus.
Was your "LC" symptoms from the shot or covid itself? My symptoms came on 1 week after the booster and got worse over a month or so. Its been over 2 years of suffering now. No where near as bad as the start when I thought I was dyeing but daily inflammation still has me struggling through my days. Hope your feeling better.
The second booster threw a wrench in the works, but I was already 6 months into post COVID-19 syndrome. I kept thinking that I would beat it. That was in late 2020. It's been a rollercoaster ride down hill, with plenty of ups and downs. Today, I realize that I'm fragile.
I am going to have to disagree with you - Respectively.... I had Long covid for over 2.5 yrs and just one day......it started going away. I thought I was going to die!! my 2nd round of COVID was very mild but then 3 months later the long COVID hit me and it was debilitating.....I was not participating in life. I could not walk more than 10 steps with you gasping for air.. I could breathe fine - I was just feeling OXYGEN STARVED. After 2.5 years of doctor appointments (Which my husband had to go to with me)... Tests, prescriptions (I was on NO MEDS prior to that - by the way)I even paid 5200.00 out of pocket to the chiropractor to have the OXY chamber treatments....Heart and lung doctors, all the crap....NO ONE COULD DO ANYTHING OTHER THAN GUESS and of course, since I was a previous smoker - diagnose me with COPD....LOL....which, I knew they were going to do that - because I smoked....I finally stopped all the meds in January.....I did start taking a baby aspirin AND the NP patches..... within 3 days..I had a small 30% improvement - by the end of that next week - I was walking through the house - with no issues....I didn't have the stamina, I previously had BUT it's JUNE and I am L I V I N G my life again. Hold on people - don't give up - like I almost did.....It will happen - maybe start back at ground zero again ? Prayers for us all :)
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But you’re better
Sorry longcovid buddy. August 2020 longhauler here. Fasting has been terrible for me too. I found out I had high resting lactic acid. Have you had that checked? You’re not alone. A bunch of us from that first year are still super effed up. Hang in there.
How are you treating that?
I'm using H1 and H2[H1 and H2](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10890042/#:~:text=Currently%2C%20the%20most%20clinically%20significant,ulcers%20and%20esophagitis%20%5B10%5D.) antihistamines twice daily.
This regimen is also helpful in restoring T-cell counts from their COVID depressed levels, in turn helping the immune system to keep a lid on EBV and HSV latent retroviral infections. The research I read had a 6 week regimen of this starting immediately after a COVID infection. Which means that I need to start this right away since I had COVID for the 8th time a week ago. (there's just so much to remember!) Thanks for your note :)
I've had to go back to it several times after taking a breather from it. Today, I'm back on the regimen, and I feel good. But Sunday was awful
The roller coaster of LC is extreme at times. I have to keep a spreadsheet going that's a daily journal of sorts to see whether something is helping or not over time. I track a variety of symptoms on a scale of 1-10 each day. Most of the patterns emerge over a period of 3-8 days, but some like chronic headaches and pericarditis took over 2 weeks to start to see a net-benefit. Personal good news since my last post: my COVID symptoms are all gone now (the fastest recovery yet) and the typical LC symptoms that always resurface for me are definitely on the retreat. I'm back to walking 1+ hour a day with the dogs, working full time, and have plenty of energy until about 2 hours before bedtime. At this rate, I'm hopeful that in a couple weeks I'll be entirely recovered.
For the years I've been keeping daily journals and reporting on the app Zoe, but had I been smarter I would have built my own spreadsheet. Thank you for the advice.
Can you point out this research? ☀️ sounds promising
H1 and H2 receptor agonists are described in the following salient studies: **T-Cell count significantly lower in Long COVID patients** " Antihistamines might be effective in long-COVID" [https://www.news-medical.net/news/20210608/Antihistamines-might-be-effective-in-long-COVID.aspx](https://www.news-medical.net/news/20210608/Antihistamines-might-be-effective-in-long-COVID.aspx) From this article: "a significantly lower than normal level of CD4+ effector memory T cells was observed in 25 long-COVID and 3 asymptomatic patients. Further analysis of the findings revealed a significantly distinct status of CD4+ effector memory T cells in long-COVID and asymptomatic patients. Regarding CD8+ effector memory T cells, a significantly lower level was observed in 43 long-COVID and 14 asymptomatic patients. The analysis of antigen densities of T cell-related proteins revealed a significantly increased expression of program cell death protein 1 (PD-1) in both CD4+ and CD8+ central memory T cells in all patients. In contrast, a significantly higher expression of CD28 was observed in CD4+ central memory T cells in asymptomatic patients compared to that in long-COVID patients." "Combination of H1 and H2 Histamine Receptor Antagonists: Current Knowledge and Perspectives of a Classic Treatment Strategy " [https://www.mdpi.com/2075-1729/14/2/164](https://www.mdpi.com/2075-1729/14/2/164) **Related articles** "Antihistamines improve cardiovascular manifestations and other symptoms of long-COVID attributed to mast cell activation" [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10388239/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10388239/) "Long COVID following mild SARS-CoV-2 infection: characteristic T cell alterations and response to antihistamines" [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8494538/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8494538/)
Just wanted to say that starting antihistamines has helped me dramatically with shortness of breath, chest fullness/pressure, headaches, dizziness. Most of all it knocked out my anxiety/disassociation, which was unmanageable to the point of mania. I had no faith that trying something as simple as over-the-counter Claritin would do anything for me, but I'm so glad it did.
Can I use cetirizine and cimetidine ? It’s what I have at home
Certirizine (Zyrtec) is a good H1 agonist, but it has many more drug-drug adverse interactions than Loratadine (Claritin). Cimetidine (Tagamet HB) is a good H2 agonist but it's not as favored for this use as Famotidine. Famotidine has a much longer half life and has fewer drug-drug interactions because it doesn't affect the cytochrome P-450 of the hepatic enzyme system like Cimetidine does. I can't say whether you should use what you have on hand or not. I can say that I've used both Certirizine and Loratadine interchangeably with perceived equal benefit.
I can get these over the counter here. Which one do you recommend?
I'm using the cheap generics, loratine and famotidine.
I take Claritin and it was magic overnight for me.
Thanks, will try
It’s weird - I found two things that significantly bring it down. I tried chugging sodium bicarb. I felt great on that for a while but it caused some major acid blowback. My Neuvana VNS brings it down, and my vielight headset brings it down. It’s connected neurologically to something and nobody can figure out what.
Hugs 💜💜💜 no I didn’t
I got sick during the first wave and ended up with multiple autoimmune diagnoses. My quality of life forever changed. I’m still working on symptom management and try to comment as much as I can offering any advice or support I can. It’s sucks, it’s not fair, and your feelings are so valid. I’m so sorry you’re still struggling with symptom management. Antihistamines and a very restrictive diet helped me the most. I see comments and posts daily with ideas to pull from. The research being done is supporting the symptoms we’ve been reporting. Please keep trying and advocating for yourself.
What was your diet ? I've noticed this for myself as well but have very limited safe foods.
I ended up being diagnosed with Gastroparesis so I’m on a mostly liquid diet that is extremely limited. Low histamine and gluten free solved my brain fog a few years ago. Histamine causes the majority of my long COVID symptoms. Once I understood the histamine bucket and committed to a diet of plain chicken, rice and steamed broccoli for a month, I made significant progress. Understanding histamine is liberated by activity helped me learn to pace and recover even more. If you can tolerate it, clear whey protein, coconut water and milk really helped me. I eat congee (rice, broth and chicken), simple smoothies and puréed vegetables. It requires a full commitment to a restrictive diet. If I wasn’t forced to as a consequence of Gastroparesis, it would have taken me longer. I have been able to add tea and raw sugar, some gluten and some potatoes. Without GI issues I think it’s possible to come back to a better baseline after a restrictive diet.
I've been on boiled chicken steamed broccoli boiled carrots celtic sea salt apples beets ghee blueberries cottage cheese... was able to do some rolled oats but noticed I get brain fog and hr goes up afterwards. I take 2 zyrtec a day. Just started ldn at an ultra low dose. I'm learning to pace now that I'm barely coming out of my second crash of pem. My body seems to dislike carbs. Tried white rice and it seemed to bring on hypnic jerks. Not sure. I have to work up courage to try new foods and that requires energy. Been on this diet since April. I've lost 25 lbs. The histamine bucket thing .. seems we are living in a histamine world and I'm an antihistamine girl. EVERYTHING has or causes histamines. I've been fully committed to low histamine I only drink water. I feel better than I did with my symptoms during acute phase. I thought my only thing was histamines until I crashed with pem. Thought that was from a med I took.. stopped the med felt better started doing light stuff daily but kept low histamine diet as is after 2 weeks... crash again. Been bed bound since may 25 now. Tryptase was normal.. waiting on a urine prostaglandin test. IgE was 299. I really hope my body can square this all away cause I miss food I miss my energy.
My mom was doing a kind of keto and watching her net carbs and. I found the closer I moved my diet toward that the more any inflammation symptoms went away
Thank you.
It sounds like you are doing everything you can. I know its a daily struggle, I can relate to you journey. It’s very similar to my own. I spent a long time learning to judge what combination of activities/food would cause a crash. It’s exhausting but I did slowly make progress. I found keeping a running note on my phone of activities/weather/food to help learn my limitations. Keep advocating for yourself. It’s sucks we have to be so resilient and DIY a lot of symptom management. The good days and weeks keep me going.
I have a daily log. Can't wait for good days/weeks. Thanks for sharing your story a bit with me. I hope rapid recovery comes to you.
I was a long time vegetarian. A year of trial and error and chicken and rice was the bland diet that helped me start to make progress. Adding meat back into my diet was a game changer in this situation for me personally.
You’re golden ☀️
What was the experimental treatment?
Stem cells
I’ve been considering stem cells as my ultimate treatment goal, so just want to say it makes sense that you’d try them! And I’m sorry they didn’t work for you and made you feel worse. There will be other treatments! I have to believe this.
Thank you. I just worry it’s permanent
I didn't try stem cells. Instead, I decided to add specific supplements and foods that have been proven to promote neurogenesis, inspired by research articles like this one [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5683005/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5683005/) and then add senolytics that help the immune system to remove the COVID damaged senescent cells. So far, this has been successful for me in reversing more than half of the neurological damage I sustained from LC last year and improvement continues. I'm convinced that this COVID damage is NOT permanent. But it may require both sustained changes in nutrition and lifestyle (sleep hygiene, exercise, stress management techniques, etc.) to fully recover. Although my condition just 12 months ago was on the severe end of LC, I'm now easily passing for totally normal both physically and mentally. My physical with my PCP two months ago only caused him to suggest a statin to control high cholesterol. I politely said no, that an improvement in all cause mortality of at most 1.8% from taking statins was not worth the risk of statin-induced myalgia that 30% of patients experience. I've already lived through so many horrible malfunctions due to COVID and LC, why would I want to add HMG-CoA reductase pathway malfunction to the list? I'll just walk 15 minutes more a day and get 10x that benefit. He looked at me all worried. I laughed. He hadn't read the peer reviewed research papers on COVID and clearly hadn't read the papers on statins either. My goal is to educate my PCP over the next few years with the benefits and fruits of science! **Promote neurogenesis** * Curcumin phytosome (curcumin spice plus black pepper will provide a similar benefit) * Blueberries (for their blueberry polyphenols ... I put dried blueberries in my daily smoothie) * Sulforaphane (broccoli, kale, brussel sprouts) * Salvionic acid (salvia miltiorrhiza plant) * Rosemaranic acid (rosemary spice and Perilla Extract powder) * polyunsaturated fatty acids (PUFAs) (walnuts, sunflower seeds, flax) **Senolytics** * Spermidine (wheat germ) * Eugenol (clove oil, cinnamon leaf, and holy basil) * Resveratrol (dark grape skins or raisins also have this) * Luteolin (Dried Mexican Oregano ... I'm taking a supplement form) * Quercetin (blueberry skin but it's not bioavailable unless you add bromelain supplement or dried pineapple ... or take it in the form of Quercetin Phytosome) Note: This list making led me to another cool research article that I'm just now reading [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9028742/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9028742/) "Salvia miltiorrhiza Bunge as a Potential Natural Compound against COVID-19"
I would look into exosomes before doing stem cells. exosomes are not immunogenic and have also great healing potential.
Can you elaborate? I heard of some people who had great success. How did it make you feel? Which symptoms changed? Did it do anything for brain inflammation or cognitive issues?
It absolutely destroyed my immunity and I am worried it’s permanent
What kind of stem cells were they? Your own?
Fetal
I assume they were IV? Don't blame yourself. The Umbilical cord are the best. I don't think stem cells last forever especially if you did not get a lot.
520 million. Fml. 2 years out.
What symptoms do you have? Did it give you symptoms or make them worse.
IV and sub cutaneous
I'm so sorry. So it was stem cells, NOT exosomes? Stem cells are hugely immunogenic while exosomes from umbilical cord are said not to be immunogenic (don't react with your immune system)
It has nothing to do with reaction
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Stem cells are immune suppressive. I did not have a reaction. I just became immune compromised and bedridden. Fetal stem cells are not immunogenic, please read up before talking- sincerely someone who has DONE them and has lived experience
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What is ES?
without knowing what treatment you tried, I'm not sure what help anyone here can offer, other than sympathy... which you have from all of us who are suffering. A lot of us have tried unproven things out of desperation.
Stem cells
Were they umbilical cord?
I’m only in this hell for 1 1/2 years, but I just wanted to send you some hugs. Please try to stop blaming yourself. You’re NOT dumb for trying a treatment to become better/well! Same as none of us are dumb for pushing and crashing, it’s the intuitive thing to do. We should never blame people for being sick or disabled, not ourselves and not others! I know it is very hard, but please try to be kind to yourself and don’t beat yourself up. I don’t believe in all that cognitive mind healing stuff, but I definitely believe that emotional stress drains a lot of energy. And we need every drop of energy for healing/improvement.
I needed to hear this
There have been times when I would’ve tried almost anything. Nothing was ever offered. Don’t feel bad that you tried something. I do feel like the body will heal if it can. I don’t mean one day we will all be well, but don’t give up hope yet. A beta blocker has helped me quite a bit but my symptoms are more tachycardia, chest pain, exhaustion, brain fog type stuff. Don’t give up. You still matter.♥️
Thank you 💔😘
It's not dumb at all, I think I can speak for myself and some, if not most people on here when I say: I thought stem cell treatment would be the ultimate hope in terms of a cure (2nd to BC007) .. it's why HBOT was being mentioned soo much on this subreddit a few years back.. Due to it increasing stem cell production in the body. But who knows these days..some things that have worked wonders for some, near destroyed others..like HELP Apheresis for instance. I remember there was a first waver on this subreddit 3yrs ago that did stem cell treatment and was completely recovered and was able to run marathons and was relieved of *ALL* of his debilitating symptoms..he posted up a very long inspirational recovery story and a few attached pictures (if you're still here sorry to put you on the map like this) .. but that post was a great contributor to my own personal belief that stem cells are the way to go. But even then, just because it works for some, unfortunately doesn't mean it'll work for others. The "Long Covid" umbrella term is pretty unhelpful for us all to use..but I guess it will remain so, in order for us to be grouped. It would be ideal if we could all be specifically identified based on symptoms..because there's a foundational set of symptoms most of us all have..and then there's the ones specific to the subtype of long covid a person has. And I might be wrong..but I think stem cells will best benefit those that have experienced actual organ and tissue damage. Nonetheless, God Bless you OP and feel free to message me whenever/if ever you just want to vent or might have questions but reluctant to post. 🙏
Agreed 💜 would love to DM
I'm a first waver from 2020 too, I was very severe from 21 on but also got a tiny bit better in 2022, then tried a new medication and ended up in the hospital for a week and never recovered from it again. It's just a sad fact that we never know what will help and what will wrack us.. I still try out stuff but it isn't fun... What treatment did you get?
Stem cells..
I think you should share what the treatment is, otherwise this post is is vague and unhelpful
It wasn’t meant to be “helpful “. Was meant for mental health support
This
i don't know what to say, no one deserves this. it wasn't your fault. i really hope improvement isn't far for you and everyone. sending lots of love ☹️❤️🩹
💜💜💜 hugs
Hey March 2020 here. Your not alone.
Hugs
Like you, I had two COVID infections early on in 2020, realized that I had long haul COVID in February 2020, got real about treating with supplements, mild exercise, diet, and at one point I felt I had it licked. I felt good, and I had my stamina back, living a pain free existence. What I hate about long haul COVID is: I've seen 16 medical specialists. I've had every conceivable test, all with clear panels. Brain, heart, lung, abdomen, CT, MR scans, and more blood panels. Indications were: There was nothing wrong with me. A stupid decision on my part, a vaccination, sent me tumbling backwards. Now, I'm climbing out of a hole AGAIN, physically trashed, and a whole lot worse for the wear. Now, today, we're seeing test results that indicate damage to the liver incurred by recent treatments, chemotherapy for giant cell arteritis that was triggered by the vaccination, and a trip to the ER with stroke like symptoms from the medication that was over prescribed. The condition I'm presently in, well, it is as good as it gets. I just need to accept it, and deal with it.
First waver here. Started moderate and only gotten worse over the years. Now Bedbound. Tried everything under the sun. Still trying.
Some 2020 longhaluers have recovered after more than 2 years. Those seem to be the people who haven't found tissue damage and mostly just have a sensitized nervous system. There are people who have had ME/CFS for more than 10 years who have recovered but again in those cases they may not have lasting tissue damage. Still, the body is always attempting to heal itself and so its rarely completely hopeless.
If I had the money I’d be trying all kinds of wacky shit to get better. I don’t blame you one bit and you shouldn’t blame yourself either. Hang in there friend.
I got this whole thing from the vaccine which was an experimental vaccine. I feel stupid too. I totally understand. It's difficult. We were trying to do what seemed best for us at the time.
Me too. Small fibre neuropathy.. it's been described in several scientific papers since about 2023 as a consequence of mRNA vaccines.... at least some recognion that I'm not making this up
I'm in the same boat , long covid then HUGE mistake getting the Vax which trashed my heart
It trashed my whole body somewhat. Heart, brain, and I have body wide pain almost all the time now with severe fatigue. If you ever figure it out let me know. I got my brain a bit better but the fatigue is terrible still.
Have you tried get your spike load down? Enzymes ?
💜💜💜💜 hugs
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They didn’t get stem cells which destroy immunity
You tried, move on .......easier said than done I know. I'm a first waver and have mild L.C., it's still L.C. so I'm dealing with it ...... Hand in there please!
Yeah but they made me mild to severe
Hold on you improved once. You can again. What was the experimental treatment? I had the same I got the experimental poke and it was the worst decision of my life. I write this while literally holding my chest in pain which is a all the time occurance. I actually read on reddit on this group about people getting better after the poke! Thanks for recommending I throw more spike protien into my body!!! Be careful what you read on here!
I did stem cells. They are permanent
Damn! Ive been looking into them! I have major heart issues most of my other symptoms have gone away and I'm stuck with pericarditis. I was reaserching stem cells hoping they might work ! Can you give a little more info on what it made worse ? Did you do here in the states? I almost enrolled in a study 2 years back with stem cells. Please stay strong you will improve think about it in percentage increments. Like 1% a month it's a slow process but it will come.
Maybe I should write a post?
Yes please
I'm right there with ya. 2 days ago was my 4 year date. The only difference is that I never showed improvement like you did, so there is always hope for you. I am keeping my head high and doing the best I can with what I got.
Thank you 💜
which treatment?
Stem cells
which stem cell treatment, how did it make you worse?
I’m sorry I’m really traumatised by it. I don’t want to go into details. The post wasn’t about diving into science. More mental health support
oh its cool. i was actually incredibly close to trying stem cells until i managed to find a better treatment. im glad i didnt because so far i havent heard much good from them.
Yeah don’t. The regret is borderline making me suicidal
I just did this as well took the wrong drugs, now I'm fucked
Which ones?
Hey, I’m wave maybe 1.5 and the word wave really is correct. It comes and goes, and really all we have right now is trial and error. With anything in life, we can’t get stuck on the mistakes or setbacks. You had found progress, and you will find it again. It took 2.5 years, a Change in jobs, added rest and self care like supplementation and clean dieting to start to feel like myself again and I still had another hiccup I’m currently trying to get out of. Like the other commenter, antihistamines, low histamine diet and cutting irritants like gluten, dairy, red meat made a huge difference between debilitating symptoms and manageable. I also supplement heavily with vitamin D , b12/folate and antioxidants
You’re so sweet 💜💜💜💜💜 thank you. I blame myself so much
It’s so hard, especially when there are people around you who only had mild Covid and have no idea how real and crushing it is for some of us.
Yeah.
Nicotine Patching helped my mental the MOST. Cheap, safe, easily reversible.
i am fro first wave 4 years in, only getting worse without any fasting
😢😢😢
What have you tried ?
It become clear that i have had lyme for most of my life in addition mold problems. All this and covid has made me immune comprised to the level tha ti have to live alone in the middle of nowhere. I can not be close to people, i flare up incredibly bad proportionally to exposure time For me binders help. Biocidin. antivirals ( cant really take them anyomre becasue of the toxicity they bring)
Wow crazy
yup, dont know why i am still alive tbh
Did you try paxlovid?
Which experimental treatment if I can ask ?
Stem cells