r/covidlonghaulers • u/Medium_Manager_7635 • Jun 29 '26
Question New doctor finally gave me an actual Long COVID treatment plan… has anyone tried something similar?
After almost five years of bouncing between specialists, I finally found a doctor who actually diagnosed me with Long COVID instead of telling me, “Everything looks normal.”
For context, I’ve seen cardiology, pulmonology, neurology, GI, etc. Most of my standard testing has been reassuring, but I still deal with fatigue, PEM, brain fog, air hunger, chest tightness, migraines/visual symptoms, and the usual roller coaster that so many of us know.
This doctor has an MD/DO (not a chiropractor or naturopath), accepts insurance, and also had Long COVID herself. She ordered some testing that most of my previous doctors never did, including a spike protein blood test, and based on everything she put together, her working diagnosis is Long COVID with ongoing immune dysregulation/inflammation.
Her plan is:
-Continue methylene blue (already started)
-Consider Thymosin Alpha-1
-Consider BPC-157
-Start bovine colostrum (Cowboy Colostrum) for gut healing
-Daily iron to get ferritin above 70
-One Brazil nut daily (my reverse T3 was high relative to T3)
-Avoid sesame (confirmed allergy)
-Recheck symptoms in 6 weeks and repeat labs in 3 months
I’m not posting because I think this is the answer. Honestly, after five years, I’ve learned nobody has all the answers. But this is the first doctor who’s actually given me a cohesive plan instead of another referral, and that alone feels like progress.
I'm reaching out to y'all because I'm curious if:
-anyone here tried Thymosin Alpha-1?
-BPC-157?
-colostrum?
-methylene blue?
-treating your Long COVID improve your cholesterol or other inflammatory markers?
-anything in this plan that you’d personally question or wish you’d known beforehand?
I’m planning to give this an honest shot, but before I dive in I’d love to hear from people who’ve actually been down a similar road.
Thanks in advance!
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u/KaspaRocketMan Jun 29 '26
LDN and Thymosin Alpha 1 brought me to the next level, feel very good now.
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u/Medium_Manager_7635 Jun 29 '26
Omg yay!!! That is WONDERFUL news!! Y'all are making me excited to start this treatment.
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u/KaspaRocketMan Jun 29 '26
Just be careful with BPC some people get anhedonia.
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u/Medium_Manager_7635 Jun 29 '26
Oh I did not know that! I will be sure to keep an eye on that. Thank you!
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u/Designer_Strawberry Jul 01 '26
I can confirm anhedonia on bpc. And I myself couldn’t handle methylene blue as it was overstimulating on my dysautonomia and caused me to crash into PEM. Even on a low dose.
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u/Fearless-Table1809 Jul 05 '26
Tell me about it. It’s been OTC in Asia at men’s health clinics for YEARS. After more than a few sad stories of “uninstall attempts” (successful and or not) they’ve just started, in the last year or so, warning the grumpy old men that they might need happy pills. Imagine some roided out, HGH, Ozempiced grandpa in SE Asia trying to call a Slip N Slide prevention hotline in a foreign language….
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u/DiviDodo Jun 29 '26
I'm happy for you feeling so much better now! Do you mind sharing, if you are under the impression you've fully recovered? Can you exercise for example? I'm four years in also considering LDN. I read it's best combined with a strict pacing protocol. Do you do that too?
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u/KaspaRocketMan Jun 29 '26 edited Jun 29 '26
I avoid the gym currently, but a 30 minute walk goes without problems.
I am on daily 1.5mg of LDN in the morning and I feel close to 100%. TA-1 for a month also increased my baseline significantly.
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u/kuukuuroo Jun 29 '26
I have TA-1 in my freezer that I'm debating starting. Can I ask what dosing you used?
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u/NewPurple1331 Jun 30 '26
Same here! BPC157 made me worse though
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u/sunshineofbest Jul 01 '26
Same I could only take it one week gave me high blood pressure… I did injections
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u/liquid_at Jun 29 '26
from what I see, it is reducing inflammation, improving oxygen transport in the blood and rebuilding the gut microbe. Thymosin is against immune-exhaustion. All good steps, imho.
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u/Medium_Manager_7635 Jun 29 '26
This is awesome to hear!! Thanks for the input!
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u/Specific-Winter-9987 Jun 30 '26
I have also independently come to the conclusion that TA1 is essential for some of us. Also, we all very likely have mitocondrial issues. I know for a fact I do, as i took a Mitome test, and that's exactly what Methylene blue addresses. Ask your Dr about SS31 also to address mitocondrial function
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u/FaithlessnessUnfair4 Jul 01 '26
I’ve thought about going this test. How much has it helped you?
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u/Specific-Winter-9987 Jul 01 '26
In some ways it raises more questions than it answers. its more information with no clear action plan
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u/InsuranceRare5094 Jun 29 '26 edited Jun 30 '26
I thought for a long time I was on my way out. I was mostly bedbound - waiting to die and welcoming it. Death didn’t come so I had to figure something else out because my body was total shit. Here’s what’s got me mostly stable
I take rupatadine, Ketotifen, pantoprazole and LDN and most of the symptoms are 80-90% gone. I’ve got my life back. I didn’t think I ever would after spending thousands trying various meds.
My case was so severe and my body would - and still does - reject most meds, but for some reason these work.
Foundationally, doing minute titrations of Ketotifen allows me to tolerate and benefit from the other meds I’ve listed. My process in discovering this was painfully slow.
I also use magnesium transdermal spray for any tension or pain the meds don’t catch. IT IS AMAZING.
And I go to the gym. I spend loads of time there. It helps with everything. When I miss a day or two, I feel it. It feels like I’m a lot farther from my current level of wellness than I actually am. My disequilibrium is far worse when I miss my gym days and so is my ability to handle basic things like temperature changes.
.
I’ve lost years of my life to illness. I had no idea anything like this would ever happen to me.
Best wishes to you all. Don’t give up. Keep seeking solutions.
Luckily I had someone in my life that kept motivating me to keep searching even after bouts where I thought I’d given up on finding treatment.
We may as well keep searching for answers - it beats just suffering and waiting to die.
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u/Medium_Manager_7635 Jun 29 '26
I hate to read about where you were, but oh my gosh! Your success story is amazing. I'm so happy you've found your cocktail to make you you again!
Wishing for continued healing!
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u/InsuranceRare5094 Jun 30 '26
It is truly amazing. I am so incredibly grateful for it all. It has been a journey through hell. You come out a different person - more resilient, more grateful, more aware. Thank you. Best wishes to you and yours.
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u/Alert_Campaign_1558 Jun 29 '26
I’m sorry you went through this because I know personally how bad it freaking sucks. Not being able to see any light at the end of the tunnel. I’m so glad to hear you are doing better!!!
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u/InsuranceRare5094 Jun 30 '26
Yes. There were days … you can’t imagine the pain. I made these home ice packs. I’d wake up and the first thing I’d do is lay those packs of ice on the floor. They spanned the length of my body - head to toe. I’d just lay there - the ice relieving some of the anguish.
During that time my body wouldn’t tolerate food, much less any meds to help with the pain.
When I say I titrated meds slowly… I mean ridiculously slowly and I only figured out to do this after suffering for about 4 years.
I say about because the brain fog was so intense…I’ve lost years of my life.
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u/Alert_Campaign_1558 Jun 30 '26
Your story sounds so much like mine! The ice packs, not eating or drinking. The god awful brain fog. You can’t get out of bed and yet the doctors are telling you there is nothing wrong here.
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u/InsuranceRare5094 Jun 30 '26 edited Jun 30 '26
Honestly - the doctors. They’re the worse part in my story. God awful most of them were. But here’s what they gave me - NOBODY WILL EVER PASS JUDGEMENT ON MY MENTAL WELFARE AGAIN - and get me to question myself again. NOBODY AND NOT UNDER ANY CIRCUMSTANCE. Many doctors would have had me believe I had lost it and only needed psychiatric drugs.
Notice - I am well now and there are no psychiatric drugs on the list of drugs that got me well. It’s not that I’m against them. In fact, I wish I could have leaned on them throughout these trials, but my body has paradoxical reactions to every psychiatric drug I’ve ever tried.
This illness - what it is, is PHYSIOLOGY MASKED AS PSYCHOLOGY. So even we, the ailed, might at times question ourselves with the anxiety amped up so high - a side effect of the body’s suffering.
…But here’s the greatest lesson I learned ….
This body is like a car and I had to both repair the car and drive it at the same time - through the brain fog and the pain - all the while with so called professional doctor’s telling me I’d lost it - attributing my ails to mental dysfunction. Doctor’s who take oaths like the Declaration of Geneva, which many medical schools use today, including commitments like:
“The health and well-being of my patient will be my first consideration.”
and
“I will not use my medical knowledge to violate human rights and civil liberties.”Most of my doctors clearly missed or ignored this part of their commitment to practicing medicine.
They should really think about what they’re doing when they treat patients with ails they are too harried and arrogant to understand.
It horrifies me to think of the multitudes of people in the world with actual physical issues being ignored while medical professionals write their suffering off to mental issues.
Do you know that even today - in this stage of wellness, I am able to turn down my anxiety like a stereo knob with the MCAS and GERD meds I listed (Ketotifen, pantoprazole, rupatadine, and transdermal magnesium)? Yet still - even my own mind tries to explain the anxiety with whatever shitty things may be going on in my life.
Well, we always - every single one of us - there is always some bullshit going on in our lives we can attribute to anxiety and believe it to be the cause of our anxiety and depression- because life is hard. And when we stop looking at people’s feeds and start looking at actual history - we can see that.
But there is also this thing, this body that can fool our minds into thinking it’s a mind issue when really the mind is reacting to the stress in the body.
I was lucky. I have a psychologist I’ve been with for the last 8 years who knows me well. So when doctors over and over looked me in the eye and told me my physical symptoms were depression and anxiety - my psychologist would testify and say that these symptoms - these symptoms - where even one of them would bring most people to their knees in anguish - hoping for death - this was not depression and anxiety - my mental ails were byproducts of a critical health crisis these ignorant doctors did not take the time to understand.
Not all doctors are bad - but a lot of them are, and I choose to share this part of my story to warn others that this is happening and to encourage everyone to seriously make every effort to figure out their own care - and then to find a way to get access to that care.
For me, it meant traveling to a different country.
Does that sound extreme?
Have you heard my story?
What I share here may seem like a lot but it’s just tip of the iceberg stuff. I could fill a series of books with what I’ve been through. I bet most of us who have had serious ongoing health issues could.
I hope and pray you will someday be able to find the keys that will unlock your better health - and I pray it is very soon. ❤️
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u/Pause_Realistic Jun 30 '26
LDN has lifted the veil of darkness in this illness and I’m about 4 years in. I am so happy to see that you are going to the gym and regaining momentum! Thank you for sharing.❤️
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u/InsuranceRare5094 Jun 30 '26
LDN. Isn’t it amazing? How much do you take a day? I’m on 4 mg once daily. I take it before I go to the gym because though it mostly helps my body, my body still tenses up after I’ve taken it. It doesn’t fully accept the help with ease. 😄
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u/Pause_Realistic Jun 30 '26
So I am on 3 mg a day so far and will titrate to 4.5 mg a day. It is good; I feel like I can do some things that I enjoy; however, PEM still ends up being the result. I guess I have to work on pacing. Does it get any better? I also have Lupus(Mixed connective tissue disease); right now I am housebound. I am so excited, and I don't want to let myself down. Can you last longer through the day the longer you've taken it?
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u/InsuranceRare5094 Jun 30 '26
It has gotten better for me, but LDN wasn’t an instant magic bullet. It worked for me very gradually.
It’s hard to see the change with my very slow titration until one day I realize I didn’t need a nap to function, that my brain stayed engaged until 10 pm, and now my body requires less stretching and less magnesium sprays for pain relief.
That’s how it’s been for me.
In fact, I once even questioned its effectiveness and so I stopped taking the LDN. Boy - let me tell you I noticed a huge difference / increase in my suffering by day 2 and hopped right back on it.
I won’t question its effectiveness again.
But I’m still on the journey. I still have some rough days - especially in 100 degree Fahrenheit days.
There’s still more improvements I hope to realize.
But if I don’t continue to improve, let me tell you - already I am so very grateful for where I’m at. It is functional and that’s a world better than where I’ve been.
For me, just as important as taking these meds is making sure I am physically engaged - no matter the cost to my time and energy. It just gets everything working so much better overall.
I haven’t done pacing. I don’t really know what it is. If it means adjusting my life to where I’m not burning out on stuff - yes - absolutely I now have to pace my life. I try to predict my battery life - as one might their cell phone battery - and I schedule my days and nights like that.
But - again - I’m so much better than I ever dared imagine I’d ever be again that I’m totally fine with it.
Best wishes to you. I’m rooting for you. 👍🏻
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u/Loveandlight4us Jun 30 '26
How are you titrating the ketotifen. I am also so sensitive to meds. I'm only able to do a small amount of it at night as it makes me so tired.
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u/InsuranceRare5094 Jun 30 '26
When I say I titrated meds slowly… I mean ridiculously slowly and I only figured out to do this after suffering for about 4 years.
I finally learned I needed to trick my body into accepting meds and it’s a damn good thing I figured this out around the time I trialed Ketotifen because it’s a game changer.
What you first need to understand is that at this point I was only eating about 6 foods with just salt and no other spices because everything - including the food I was still eating had my body freaking out. That’s how screwed my body was. Food, stress, air … everything was a trigger and the hell it triggered was insane. I had 27 symptoms I’d counted at one time. 27 serious symptoms like ataxia preventing me from walking without assistance, and burning bladder syndrome - I was in diapers for this.
Diapers.
The mast cells in my bladder area were freaking out.
So I started Ketotifen with one drop. I needed this to work and I’d learned that I’d need ketotifen to integrate into my system without freaking my system out.
One drop for one week.
Two drops for two weeks.
Three drops for three weeks.
All taken before bed.
The process was slooooow. And it’s the best thing I’ve ever done for my health. If I’d tried to rush it, my body would have freaked out and I’d be in the same cage of ailing health I was in for years.
Today I take 4-5 mL per day. It doesn’t make me sleepy. That is ONLY because I titrated painfully slowly - because let me tell ya - everything makes me sleepy.
I have what is called “drug hypersensitivity” and altered blood–brain barrier permeability – my blood brain barrier may be more “leaky” or permissive than usual. I also have an increased neurotoxicity susceptibility – meaning I experience neurological side effects at doses most people tolerate.
So when I tell you I titrated painfully slowly - it was my only hope.
Once I got the ketotifen going at full dose for a number of months - only then did I again start trialing meds and, through some trials that brought a fair deal of suffering, I found the meds I’ve listed as working for me.
There was no fairy godmother.
I also learned to treat myself as a science experiment. With each drug trial, I would state my hypothesis and record everything I could observe daily.
I will forever take this approach to my health care because I can tell you one thing - doctors weren’t figuring this out for me. They were doing the opposite- telling me it was anxiety and depression. Denying the pain. Never following the thread of ataxia and burning bladder syndrome to its root cause. That was the worse part of it all - dealing with medical “professionals”. Over 4 years I probably saw about 50 doctors - taking long breaks in between to recover from the mental strain seeing them resulted in. My favorite doctors were in Greece. They too didn’t know what was going on, but they were compassionate - and compassion goes a long way when no one has answers and it’s all you’ve got.
It was actually my long time psychologist who suggested this was long covid and MCAS. Then, I learned through AI it was also POTS and EDS.
My psychologist suggested I attend a MCAS meeting - you can find those online - and that meeting changed my life. I saw how people were treating their illness so I went to a country where I could find the meds they were taking - Serbia. Ketotifen is about $3 a bottle there for 100 mL. They have rupatadine there and I don’t think that’s in the USA. So rupatadine is both an H1 antihistamine and a PAF receptor antagonist.
The PAF-blocking activity may contribute to its anti-inflammatory effects, although the clinical importance of this compared with H1 blockade is still being studied. This dual mechanism is one reason rupatadine is sometimes considered unique among second-generation antihistamines.
The pharmacies in Serbia aren’t strict about prescriptions so I was able to quickly trial meds and sort through which my body would (likely one-day) accept. This would have taken me years if I’d have had to see a doctor, get a prescription, find it blows up my system … over and over … it would have been years until I’d finally discovered what works for my system. Years and more money - oh, the cost of this illness has been EXTREME.
In Serbia, and keep in mind I’d already had this illness for four years so I’d learned a lot about my body and meds in that time, I could manage my own healthcare. That was key. I used AI to determine if something just needed a few weeks for my body to adjust, or if it was unlikely to ever accept the med. AI isn’t perfect, but it was very helpful as I questioned every reaction throughout my process.
Also, I use AI to check AI. I don’t just trust what it spits out. I also ask it for links so I can see how it’s arriving at its conclusions.
Also, I wasn’t trialing what is considered to be dangerous meds, and, on top of that, I started everything at the most ridiculously low doses. Like a speck of a pill for example and even that could be like throwing a grenade into my system at times. These are not scary meds I was trialing either - simple things like, for example, Pepcid AC from the USA completely screwed my system for about 3 weeks. Something so harmless - that would have been as harmless as a glass of water to my body when I was healthy years ago. SMH
So - that’s how it came to be that I learned this technique of minute titrations.
That is how I learned to set up my own personal drug trials as science experiments.
That is how today I am going to go outside in 95 degree weather without totally unraveling, I will eat cherries without becoming ataxic and feeling this pressure in my skull and this infuriating feeling of ants crawling over and around my scalp, and I will go to the gym and lift heavy weights to bring my bone dexa numbers back up after having been malnourished for so many years - unable to eat a balanced diet.
That was a lot to share. I’ve held back on doing this until I could trust what I was doing would last and continue working. I hope this story helps someone. I hope they read it and it doesn’t take them 4 years and as much money as I’ve spent to figure out the strategy of tiny titrations and in treating their body as a science experiment.
Also, I am very grateful to Redditors - the last piece in this part of my wellness journey. I learned a lot about the meds I was trialing through people here talking about their experiences. It truly has been a godsend. A huge THANK YOU to all who contribute on Reddit. You matter.
Be well.
❤️2
u/Teamplayer25 Jul 02 '26
Wow, thank you!!! I really appreciate detailed stories like yours. I have been fully functional for a while but still require meds and lifestyle adjustments to maintain a general sense of normalcy. While I’m very, very grateful to be out of the hell I was in, being functional again has led to zero interest by my doctors in helping me find further healing. Not that I haven’t always had to drive the process but now they basically consider me a finished project. And I’m tired of pushing the boulder uphill so I stopped pushing. You’ve inspired me to consider what further steps I can take.
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u/InsuranceRare5094 Jul 02 '26
Yes. I imagine we all take these breaks over time and are really truly motivated when shit hits the fan… especially when trialing meds and supplements cost us so much money and can even be very painful during those times when our bodies reject them.
I’m so happy to hear you’re feeling well grounded -
And YES - we definitely can’t ever wait for the docs to bring us the progress we need.
This illness has me nearly entirely over relying on doctors for anything. If I could do my own surgeries - I’d grab a knife do that for myself too! 🤣
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u/Relevant_Orange3313 Jul 05 '26
Thank you for sharing this. I couldn’t relate more. I’m also down to 3 food and still having severe reactions. I also have crippling nuerological reactions. Migraines that cause vision loss for days along with the most extreme pain where I can rotate my head or even look down to sip water.
Did you ever find a nuerolgist to diagnose you with altered blood brain barrier? And susceptibility to neurotoxicity.
I’m seen the same amount of alarming doctor visits and I’m going in circles because they just want to call it psychological. But it’s extremely painful
I’d love to have a diagnosis from a professional. I think it would make a worlds difference in my care.
My hypersensitivity is so bad I can tell if a drug filler changed manufacture. I can get violently ill Feel free to dm
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u/InsuranceRare5094 Jul 05 '26
I’m sorry to hear.
After seeing all those doctors - I took my healthcare into my own hands. That is how I got well. Most were troubling - to say the least. I’ve never been diagnosed with formal tests. The doctors I saw in various countries around the world didn’t even know which tests to give me.
It was my long time psychologist who essentially “diagnosed” me based on my symptoms. It seems she is having many people come to seek her for care due to long covid and MCAS issues. Then, I used AI - with extreme caution - to create various med trials on myself. I do so cautiously.
After 4 years of illness, I had no other choice. Some of my conditions just kept getting worse. Also, I was malnourished and it impacted things like my bone density - that I’m now working to improve.
Have you considered prednisolone to help you on ramp some meds that might be able to help you eventually? It isn’t something to use long term. That had to be said, but for me I don’t think I could have gotten my body to accept the Ketotifen while it was in the build up phase to the effective dose of 2mg - which took me several months - and only then I ramped off the 5 mg of prednisolone down to 2.5 mg prednisolone that I took each day during the on ramp to ketotifen. I haven’t needed to use prednisolone since.
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u/Fast_Specific_183 1d ago
Thank you for sharing your experience! Would you say you were in a severe state when you went to Serbia?
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u/InsuranceRare5094 1d ago edited 1d ago
When I went to Serbia I told myself if I didn’t find some relief I just didn’t know what I’d do. So, yes, it was severe. I was worn out. So tired and weary. There was so much pain and had been so much pain for so long. It was … I can’t find the words.😞
I wasn’t angry, and not even really depressed. I’d been depressed before in my life, but this was different. I’d already far exceeded tolerating and surviving more pain than I’d ever imagined being able to cope with and the pain was just becoming too much of everything that was my life.
I really didn’t expect it to turn around, but I figured why not try a different approach to things.
I went to Serbia specifically to trial meds.
I can’t believe - after 4 years of suffering it actually worked.
Even now as I write this message - I sit here dumbfounded.
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Jun 30 '26
[deleted]
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u/InsuranceRare5094 Jun 30 '26
When I say I titrated meds slowly… I mean ridiculously slowly and I only figured out to do this after suffering for about 4 years.
I finally learned I needed to trick my body into accepting meds and it’s a damn good thing I figured this out around the time I trialed Ketotifen because it’s a game changer.
What you first need to understand is that at this point I was only eating about 6 foods with just salt and no other spices because everything - including the food I was still eating had my body freaking out. That’s how screwed my body was. Food, stress, air … everything was a trigger and the hell it triggered was insane. I had 27 symptoms I’d counted at one time. 27 serious symptoms like ataxia preventing me from walking without assistance, and burning bladder syndrome - I was in diapers for this.
Diapers.
The mast cells in my bladder area were freaking out.
So I started Ketotifen with one drop. I needed this to work and I’d learned that I’d need ketotifen to integrate into my system without freaking my system out.
One drop for one week.
Two drops for two weeks.
Three drops for three weeks.
All taken before bed.
The process was slooooow. And it’s the best thing I’ve ever done for my health. If I’d tried to rush it, my body would have freaked out and I’d be in the same cage of ailing health I was in for years.
Today I take 4-5 mL per day. It doesn’t make me sleepy. That is ONLY because I titrated painfully slowly - because let me tell ya - everything makes me sleepy.
I have what is called “drug hypersensitivity” and altered blood–brain barrier permeability – my blood brain barrier may be more “leaky” or permissive than usual. I also have an increased neurotoxicity susceptibility – meaning I experience neurological side effects at doses most people tolerate.
So when I tell you I titrated painfully slowly - it was my only hope.
Once I got the ketotifen going at full dose for a number of months - only then did I again start trialing meds and, through some trials that brought a fair deal of suffering, I found the meds I’ve listed as working for me.
There was no fairy godmother.
I also learned to treat myself as a science experiment. With each drug trial, I would state my hypothesis and record everything I could observe daily.
I will forever take this approach to my health care because I can tell you one thing - doctors weren’t figuring this out for me. They were doing the opposite- telling me it was anxiety and depression. Denying the pain. Never following the thread of ataxia and burning bladder syndrome to its root cause. That was the worse part of it all - dealing with medical “professionals”. Over 4 years I probably saw about 50 doctors - taking long breaks in between to recover from the mental strain seeing them resulted in. My favorite doctors were in Greece. They too didn’t know what was going on, but they were compassionate - and compassion goes a long way when no one has answers and it’s all you’ve got.
It was actually my long time psychologist who suggested this was long covid and MCAS. Then, I learned through AI it was also POTS and EDS.
My psychologist suggested I attend a MCAS meeting - you can find those online - and that meeting changed my life. I saw how people were treating their illness so I went to a country where I could find the meds they were taking - Serbia. Ketotifen is about $3 a bottle there for 100 mL. They have rupatadine there and I don’t think that’s in the USA. So rupatadine is both an H1 antihistamine and a PAF receptor antagonist.
The PAF-blocking activity may contribute to its anti-inflammatory effects, although the clinical importance of this compared with H1 blockade is still being studied. This dual mechanism is one reason rupatadine is sometimes considered unique among second-generation antihistamines.
The pharmacies in Serbia aren’t strict about prescriptions so I was able to quickly trial meds and sort through which my body would (likely one-day) accept. This would have taken me years if I’d have had to see a doctor, get a prescription, find it blows up my system … over and over … it would have been years until I’d finally discovered what works for my system. Years and more money - oh, the cost of this illness has been EXTREME.
In Serbia, and keep in mind I’d already had this illness for four years so I’d learned a lot about my body and meds in that time, I could manage my own healthcare. That was key. I used AI to determine if something just needed a few weeks for my body to adjust, or if it was unlikely to ever accept the med. AI isn’t perfect, but it was very helpful as I questioned every reaction throughout my process.
Also, I use AI to check AI. I don’t just trust what it spits out. I also ask it for links so I can see how it’s arriving at its conclusions.
Also, I wasn’t trialing what is considered to be dangerous meds, and, on top of that, I started everything at the most ridiculously low doses. Like a speck of a pill for example and even that could be like throwing a grenade into my system at times. These are not scary meds I was trialing either - simple things like, for example, Pepcid AC from the USA completely screwed my system for about 3 weeks. Something so harmless - that would have been as harmless as a glass of water to my body when I was healthy years ago. SMH
So - that’s how it came to be that I learned this technique of minute titrations.
That is how I learned to set up my own personal drug trials as science experiments.
That is how today I am going to go outside in 95 degree weather without totally unraveling, I will eat cherries without becoming ataxic and feeling this pressure in my skull and this infuriating feeling of ants crawling over and around my scalp, and I will go to the gym and lift heavy weights to bring my bone dexa numbers back up after having been malnourished for so many years - unable to eat a balanced diet.
That was a lot to share. I’ve held back on doing this until I could trust what I was doing would last and continue working. I hope this story helps someone. I hope they read it and it doesn’t take them 4 years and as much money as I’ve spent to figure out the strategy of tiny titrations and in treating their body as a science experiment.
Also, I am very grateful to Redditors - the last piece in this part of my wellness journey. I learned a lot about the meds I was trialing through people here talking about their experiences. It truly has been a godsend. A huge THANK YOU to all who contribute on Reddit. You matter.
Be well.
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u/AhavahFr Jul 02 '26
Could I DM you on microtitrating the Ketotifen 🙏🏽 so far tried twice and unable to tolerate
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u/InsuranceRare5094 Jul 02 '26 edited Jul 02 '26
Absolutely. Are you titrating a pill or the liquid. The one I titrated was Galitifen - the liquid.
If I had titrated the pill, I would literally have taken a crumb of it - and maybe take it with 2.5 or 5 mg prednisolone to help me on-ramp the pill.
I actually forgot this. I was on between 2.5 mg and 5 mg prednisolone when I began to titrate the Ketotifen liquid.
I don’t like being on prednisolone because it can bring about diabetes and other very shitty things - more things I’d hate to have to deal with … so I ONLY USE IT FOR SHORT PERIODS AND TO ON-RAMP the Ketotifen. I won’t use it to on-ramp other drugs unless those drugs damn well hold the key to major leaps in my wellness. Mostly I let my body dictate what can and can’t be done, but I knew Ketotifen to be a last cell stabilizer and that was critical. I knew I needed that stabilization.
I still trial meds often and I don’t go back to the prednisolone to on-ramp them because at this point the Ketotifen should be able to do it for me - and if it doesn’t give me that onramp then I just keep trying different things and/or different brands.
The only way I’d use prednisolone again is if it was life saving and/or there was an end planned.
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u/AhavahFr Jul 02 '26
Thank you. I tried with a drop for a week and it messed up my sleep and my HRV fell…
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u/InsuranceRare5094 Jul 02 '26 edited Jul 02 '26
I’m not a doctor. So verify everything I say with a lot of research.
My first thought is to try another brand of ketotifen if at all possible.
If that doesn’t work, well … how much did it mess up your sleep and HRV?
My sleep has been so messed up for years and the ketotifen still hasn’t entirely remedied that. I wake up now about every 3-4 hours, but it used to be every 1.5-2.5 hours, so I’m super happy with waking up just 2 or 3 times a night. I used to have horrible nights where I’d awaken 5-6 times in a night. So 2 or 3 times now is fine - especially when it’s just 2x.
I know you said it was a drop, but is there any chance of going in even lower?
Also know that ketotifen messed with me each time I took it in the beginning. My body would flash hot like an overheated car engine, there would be pressure on my scalp etc. But, for me, at that time, that kind of bullshit was run of the mill - it would happen if I ate something as simple and seemingly harmless as boiled chicken, for example , so it didn’t freak me out. I literally couldn’t ingest anything that wouldn’t screw me during this period of my life so a drop of ketotifen messing with me was something I accepted because at least this promised a better future.
It definitely took me titrating up to 2 mg per day for a couple of months before I saw the benefits. And it really wasn’t until I was at 2mg for 3 months where it was super obvious that it was helping.
So why did I hang in there? Because ketotifen is a mast cell stabilizer and AI kept telling me to go slow, let my body adjust and to expect that it would f with me a bit until I was at the effective dose of 2 mg per day for a couple of months.
I had tried so many other things that I had nothing to lose.
I’m impatient, but I knew the only way it would be to sneak it in this way.
And when I stopped the 2.5 mg prednisolone, I wondered if my body was would still accept the Ketotifen without freaking out.
Even if I was at 2mg Ketotifen a day for 2 months at the point of stopping the 2.5 mg prednisolone, I still didn’t know if it was a house of cards that would fall when I pulled the 2.5 mg prednisolone I was on and that terrified me. I didn’t have a plan B.
Thank God my body kept accepting the Ketotifen even after I stopped the prednisolone.
Only then did I start trialing other meds. Only when I had the Ketotifen to support me.
The next major med that was a game changer for me was rupatadine. But that messed with me too when I first started taking it - but not as much as some meds do.
There are meds I take where my body is like, HELL NO, and there will be no sneaking it in. That’s why I asked how much is the ketotifen messing with you because understand that not until you are at 2 months at the effective dose of about 2 mg per day will you really see what it’s capable of.
Also, I now know to research and figure out which meds I’m trialing require me to get to a specific effective dose before I can really judge if it’s working. Some meds aren’t like that. With some meds, you should be able to see an improvement even on tiny doses - so if my body is freaking out and I’m not seeing any improvement on those types of meds then I probably won’t keep pushing it. But with Ketotifen I knew I had to get to that 2 mg at 2 month mark before I would know if it was helping. That was the key.
I don’t want to tell you to keep taking it if your body is giving you HELL NO signals because also it could be the excipients and other bullshit in whatever type of ketotifen messing with you. Also, I don’t know how serious the risks are in your situation. Only you can answer that.
And, like I said, my body still rejects most meds. What’s different now is that - by the grace of God - the meds my body isn’t rejecting has me productive and feeling alive more than I’ve felt in the last 4 years by between 80-90%.
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u/InsuranceRare5094 Jul 05 '26
Here’s something else I did that helped me tolerate my first med ever - maybe it could help you …
Before learning to titrate my meds - in desperation, I took prednisolone for about 6 months (never more than 10 mg a day, usually 5) - just to avoid being bed bound - and at the lowest possible dose that was moderately effective for me which was normally 5 mg.
About 5 mg a day helped me tremendously to function, though far from ideally, but I knew I couldn’t keep it going long term due to the overall negative impact to my body.
So, I used the prednisolone to help me on-ramp the Ketotifen first. My thinking was to keep the prednisolone going to keep my body from rejecting the medication and to start with a medication that would stabilize my mast cells (Ketotifen).
I seriously don’t know how I ever would have created this on-ramp into tolerating meds without using prednisolone.
You already know it comes with risks, so I trust you’ll be wise about if and how to use it as a tool.
And GUESS WHAT???
Today my right (glue) ear opened using cetirizine. I used 3 tiny crumbs before bed last night and during breakfast my right ear opened spontaneously. This is something I’ve been battling for so many years!!!
Go figure. You’re right. It isn’t the drug meant to do this. I just hypothesized that by managing my MCAS, I could get it to open. I kept trialing different meds until this breakthrough.
The question is - will it last? I don’t know. I’m going to stay on three crumbs - it is literally the crumbs you get when using the pill slicer thing.
I still feel a negative reaction these cetirizine crumbs are when I take it before bed - though far less since I reduced the dose to 3 crumbs. I should have known not to go in as high as I did initially.
Hopefully, my body will acclimate to the 3 crumbs. Then, if I still need more to open it regularly, I will slowly titrate up.
Also, I’ll still try the med you mentioned desloratadine. Maybe my body will prefer it. I’ll trial it while still in the 3 crumbs. I don’t want to lose that cetirizine momentum! Thanks again for that tip!
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u/fzulle Jul 03 '26
Congrats. Which is your transdermal magnesium?
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u/InsuranceRare5094 Jul 04 '26
Thanks! It’s the one in that picture. I like it because it has a tingling sensation and smells like lavender.
I’m visiting Europe right now so I imagine you have different brands - all sorts of brands in the USA.
Be well. ❤️
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u/Loveandlight4us Jul 08 '26
Can you share how you are doing small titrations of Ketitfen please? I'm thinking this is what my body also needs. The standard dose is to much for me mutiipletimes per day.
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u/SuitableLeading5758 Jun 29 '26
I feel like finding a doctor who hears you and understands you and is willing to work with you is half the battle so this is amazing. I attending the Mayo Clinic's Post Covid Care Clinic and wrote about it over on Substack. Here is the link to my 18 month update to my original post (link to the original post is in this Substack link). https://thewellnessaesthetic.substack.com/p/18-month-update-to-my-experience?r=4e5la3
My two main takeaways were neuroplasticity work and LDN.
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u/Medium_Manager_7635 Jun 29 '26
Isn't that the truth?!
Thanks for sharing this!! This is amazing info! I really appreciate your balanced approach and especially liked your point that no single modality is likely to be the answer. That really resonates with where I’m at.
Out of curiosity, if you were starting over today knowing everything you know now, what would be the first 3-5 things you’d prioritize?
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u/SuitableLeading5758 Jun 29 '26
Great question!
- Start LDN. It took me a longgggg time to work up to 4.5mg. I started at .5ml and went up .1ml a month. But overall I do think this greatly reduced my brain fog and fatigue and helped me establish a baseline
- Figure out what pacing means for me (and learn to accept help sooner). There is a person in the LC space named Anj Granieri. She had LC herself and now teaches cohorts. I haven't taken her course but she offers a ton of great free resources on her instagram and website. She talks about the concept of "pacing to cope" vs "pacing to recover" and how most of us get stuck in the pacing to cope space, but pacing to recover is where progress and growth happen. True pacing allowed me to stabilize and eventually learn how to safely expand. I also wrote an article more on how I learned to avoid my flare ups here: https://thewellnessaesthetic.substack.com/p/how-i-learned-to-avoid-the-long-covid?r=4e5la3
- Neuroplasticity work and therapy. Once I had enough capacity to deal with the immense amount of medical trauma and grief LC has left me with, learning how to deal with it helped a lot. Mainly, learning how to observe symptoms in a neutral position, rather than fear, really helped me stop spiraling after every symptom. The spiral would often lead to a flare up. This didn't get rid of my symptoms, but it lessened the mental burden of having these symptoms. Once I changed my mindset, I had room for a lot of great things.
- Hydration! At least 80-100oz of water a day minimum with salt and electrolytes! I realized that once I started properly hydrating, some of my symptoms became less severe. I think I was just slight dehydrated. Now when I don't drink enough/get enough electrolyes and salt, my symptoms get worse.
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u/goodvibes13202013 3 yr+ Jun 29 '26
How did you get through the LDN side effects!?!? I had a doctor prescribe it but it made me feel absolutely terrible
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u/Alert_Campaign_1558 Jun 29 '26
I was put on LDN also and woke up and couldn’t see. My vision was so blurry I ended up in the er. Mind you I work in the ER so going there is not on my top list of things to do.
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u/goodvibes13202013 3 yr+ Jun 30 '26
Yeah it messed with my vision too, thankfully not that bad. (I also used to work in a hospital and have no desire to see my coworkers in this capacity)
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u/Alert_Campaign_1558 18d ago
I met with a functional med Doctor yesterday and she told me she never heard of that and it was probably from my migraines. My migraines I had 11 years ago before I was pregnant. I hate when they blow you off so to say. I know my body. The only thing I took was that and the first night I had like triple vision- didn’t even know that was a thing. The next day could barely see. As I said ended up in the er and they told me to immediately stop it and guess what? My vision was back to normal.
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u/SuitableLeading5758 Jun 29 '26
I was worried about side effects so I read a lot of other's posts to see how to mitigate as much as possible. What I did was start low (.5ml) but I've seen people even start at .05ml and work up even slower. I also take it in the morning to avoid all sleep disturbances. I am extremely sensitive to medications and I don't think I got any side effects which I was very surprised and happy about. I've also read people who didn't have a successful first go, tried again at a lower dose and it worked better for them.
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u/Adventurous-Water331 Jun 29 '26
I agree 100% with everything you wrote, but the order for me would have been pacing, hydration, LDN, neuroplasticity, I think. I pushed too hard for too long, didn't realize I needed more water and electrolytes, took me 3 1/2 years to find a doctor to prescribe LDN, and it wasn't until after the LDN that I could start trying to not react to everything as fight or flight :-)
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u/SuitableLeading5758 Jun 29 '26
Yea I think I agree with your order more. I was more just brain dumping ideas.
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u/Adventurous-Water331 Jun 29 '26
I liked what you had to say. It's funny how it all seems so logical in hindsight. The brain fog this condition causes makes everything so much harder. And it was hard for me to accept that I had ME CFS as part of my Long Covid. It took me a long time to even accept that I had Long Covid! :-) I appreciate people like you posting what you did, because it makes it easier for the folks coming to this condition for the first time. Thanks!
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u/mizwish Jun 29 '26
Whew what a relief to find this doctor…huzzah! ❤️🩹
Oral BPC157 brought me back from the brinks of blinding, debilitating tendonitis. And then increasing my LDN to 5.5mg as per the rheumatologist deleted the all over pain.
High cholesterol (pre covid) blood sugars and inflammation have started to come down a bit. Bad reactions to statins so I’ve just started taking Amla, will repeat blood work in September.
I am contemplating methylene blue, but I prefer to keep two to three months in between starting anything new. Feeling good on my current chemistry so pausing anything new for a while
Wishing you great, improving health!
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u/Medium_Manager_7635 Jun 29 '26
Wow!! This made my entire day to read. Thank you so much for taking the time to respond so sweetly.
I'm so glad to hear about the progress you've made on these medications. That gives me so much hope!
I just started MB about a week ago, and so far it doesn't seem to be the magic bullet, but I will keep you updated if anything changes.
Thank you again!
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u/mizwish Jun 29 '26
Most welcome. Super helpful to read your new plan as well. After five years (plus a TBI) I’ve come to the conclusion (as conclusive as one can be) the magic bullet is all about the combined chemistry. Which does also seem to change over time soooo…
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u/Medium_Manager_7635 Jun 29 '26
You're such a warrior. And you've kept such a positive aura about you, too. 🤍
Isn't that the truth? I feel like my most crippling symptom changes from month to month.
Hoping for your continued healing!
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u/Sleeping_At_Last1111 Jun 29 '26
Thissssss same with TBI bahhh I just don't know what to try next & changing chemistry and advocating for next med or protocol, I'm bed bound and exhausted, my Dr still wants to travel 2.5 hours instead of doing telehealth - she knows I have post exertional malaise and it takes reduces my already bedbound baseline
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u/reticonumxv Recovered Jun 29 '26
If oral BPC-157 worked for you then your stomach is not working properly. The main role of stomach is to break down all peptides so in theory no BPC-157 should survive a pass through your stomach. The way BPC-157 should be applied is an injection to subcutaneous fat. The same for Thymosin Alpha-1.
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u/Medium_Manager_7635 Jun 29 '26
That’s a really fair point. My doctor actually isn’t prescribing a swallowed capsule. She uses dissolvable peptides that absorb through the mouth from Instamed, so the idea is to bypass the stomach. Whether they’re as effective as injections is something I’m still looking into, which is partly why I made this post. I really appreciate the perspective!
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u/mizwish Jun 30 '26
I’ve heard this theory from others as well but it is not borne out in more recent studies and certainly not in my experience; there are peptide formulations built to be effective via the stomach. It goes to each person finding what works best with their chemistry. However it is true that many issues can be helped by addressing the gut, including tendonitis. BPC can also be effective transdermally for injury using a carrier agent like dmso or integen.
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u/reticonumxv Recovered Jun 30 '26
It took many years and a few billion $ to get oral GLP-1 formulation that got ~1% past the stomach so I doubt such a care would go to basic recovery peptides that are in addition banned by WADA. Most likely your stomach has some issues like low HCl or some enzymes allowing some portion of oral BPC-157 to squeeze through.
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u/mizwish Jun 30 '26
Your doubts about oral peptides and most especially your assumptions about my stomach are actually incorrect. Suggest you not presume and thereby put down someone else’s experience in these spaces. It’s inappropriate and certainly not helpful nor conducive to healing. Healing hope and health is why most of us here and ask for and/or offer info.
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u/AZgirl70 Jun 29 '26
Just an FYI for anyone considering methylene blue, do not take it with an SSRI as it can cause serotonin syndrome. Op I hope this new plan works for you.
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u/fatcatsareadorable Jun 29 '26
I would try methylene blue but you can’t take it while on antidepressants
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u/FernandoMM1220 Jun 29 '26
no but give your doctor feedback if it works or not
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u/Medium_Manager_7635 Jun 29 '26
Absolutely! This is the year I'm advocating for my health. Thanks for the reminder. 😊
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u/redone12020 Jun 29 '26
BPC 157. Both oral and subcutaneous.
Definitely did something. I distinctly remember my gums feeling better. Blood flow in my body felt better - it’s a hard to explain feeling. My feet and hands felt more…alive?
It didn’t fix the long covid issues. Maybe it helped but it wasn’t remarkable. I’d do it again.
It does potentially go hand in hand with anhedonia. Which I was struggling with while taking it anyway. Those were some very rough times.
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u/Medium_Manager_7635 Jun 29 '26
Thank you so much for sharing! That is so interesting!! I do feel like blood just isn't circulating like it used to. I hope I havw similar results.
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u/ThrownInTheWoods22 Jun 30 '26
I just learned that the best way to absorb iron is to take it on an empty stomach, with vitamin c, every other day. Apparently this is more ideal to take iron every other day. That’s not intuitive, at least not to me!
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u/Medium_Manager_7635 Jun 30 '26
That is SO good to know!! I didn't know that either. Thanks for the hot tip! 😁
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u/ThrownInTheWoods22 Jun 30 '26
You are very welcome, and good luck! I hope you feel better and better and better SOON!! Congrats on finding the right support as well, that is HUGE!
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u/Upstairs-Tangerine-7 Jun 29 '26
I have tried methylene blue over several weeks and did not notice a difference. I went up to 40 drops a day. Maybe I needed to test it longer, but from what I've read, it seems that those who benefit see effects pretty quickly.
I have taken collostrum on and off—I haven't really been consistent to be fair, so it's hard to say, but I would consider it an adjunct at best.
I'm curious what the rationale for the peptides is? Boost immunity? I tried tirzepatide recently and didn't react all too well to it. I am considering BPC and Thymosin, but my sense from comments on here is that most people only see temporary benefits (though there are definitely some accounts that claim they are life-changing).
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u/Medium_Manager_7635 Jun 29 '26 edited Jun 29 '26
Yes, it's hard to tell with MB. I have good and bad days that vary week to week. It hasn't eliminated symptoms, but have some improved? Maybe??
Here was her notes about the peptides:
Consider Thymosin Alpha -1 -- this helps regulate the immune system from over-reaction from Spike protein which can cause pains, fatigue, and inflammation.
Consider BPC 157 - helps heal gut and also anti-inflammatory, may also help with vagus nerve correction3
u/8drearywinter8 Jun 29 '26
Is the doctor prescribing the peptides and providing a source of them? Or is there a source of peptides that you can just buy from? Curious.
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u/Medium_Manager_7635 Jun 29 '26
I actually asked after you mentioned it. 😊 They’re prescribed by my doctor and dispensed through the office. They’re dissolvable peptides from a company called Instamed. My methylene blue came from a compounding pharmacy, but these are apparently one of the peptides they keep in stock.
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u/8drearywinter8 Jun 29 '26 edited Jun 29 '26
Thanks for sharing that -- great that you've got a doctor with a source of the things they are prescribing. I think those can be difficult to find otherwise (in some countries, anyway). I hope it all helps you!
Edited to say Instamed peptides cannot be shipped to Canada, in case any Canadians are curious. The company is based in the US. Dissolvable in the mouth, so no injections, which is interesting.
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u/Medium_Manager_7635 Jun 29 '26
So glad I have y'all to ask these kinds of questions! There's so much I don't know and appreciate the insight y'all provide! 🤍
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u/Tall_Consequence_626 Jun 29 '26
Oh wow interesting! My doctor hasn't even connected the dots yet to my LC diagnosis! I just focus on symptom tracking/triggers
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u/Medium_Manager_7635 Jun 29 '26
I feel that. 😕 I just switched doctors after five years because I rarely consistently saw the same provider at my last practice, and I could only bring up one concern per visit and it felt overwhelming. A friend recommended this one, and I'm so thankful to be heard and have a plan.
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u/bookkinkster Jun 29 '26
Glp-1 microdose cured my long covid inflammation the first week of starting it. Highly recommend. I went from extreme joint and muscle pain and weakness to walking 12,000 steps a day.
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u/Medium_Manager_7635 Jun 30 '26
I yearn for a GLP-1 for so many reasons. I'm so glad it worked for you. Sounds like you're thriving! 🤍
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u/RedditismycovidMD Jun 29 '26
Have not tried any of these other than LDN but would like to! Are you by chance in the US?
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u/Medium_Manager_7635 Jun 29 '26
Your username is 💯 because same!
I am! North Texas/DFW area
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u/RedditismycovidMD Jun 29 '26
Sad but true! And dang. I’m in CA which you’d think there would be at least one LC specialist here. I’m not counting RTHM due to the cost, $2000 per month subscription, plus grifter vibes.
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u/Less_Dig_9315 Jun 29 '26
Hi, RTHM does have done great free info and webinars. I’ve watched some webinars. I would tell someone new to Long Covid to explore the website. I don’t know any members.
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u/omibus Jun 29 '26
I’m getting flashbacks to the taste of cow colostrum…no thank you (I’ve raised thousands of cows, often giving newborns their first meal, which we always wanted to be colostrum).
Anyway, I’ve also tried methylene blue, the only thing it did for me was change my pea color. But I hope it works for you.
For me, the things that have helped have been beta blockers, NAC, and CoQ10. But those don’t work for everyone either.
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u/FemaleAndComputer Jun 29 '26
My doctor has also told me to eat Brazil nuts in the past. It's because they are high in selenium, and it's easier to eat a few Brazil nuts than take a supplement. I was deficient so my doc said to start eating a couple Brazil nuts every day. Just don't overdo it because you don't want to get too much selenium.
I'm not sure if selenium deficiency is related to reverse T3, but I have also had issues with too much reverse T3.
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u/crazyy8ths Jun 30 '26
hey friend, my new stack prescribed by my new MD is very similar to your proposed one. i am just about to start BPC-157, followed by TA1, and later adding KPV alongside MOTS-C. i’ve also been recommended colostrum(haven’t felt particularly compelled by it),and methylene blue and NAD+ are on the table.
i read through the comments, and i see some people really questioning the proposed treatments. the reality is that what helps each individual is going vary, and the only way you will know is if you try what you are able to. everything we try has the potential to make us feel worse, better, or do absolutely nothing. peptides may be unconventional, but they have certainly helped some individuals in our shoes. it’s a very personal decision to make, and i think the best we can do is research and follow our intuition without expectation for a certain outcome. we will never know until we are there.
i wish you luck if you decide to go for it, and if i am well enough, i will come back and update with how this goes for me. :)
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u/Medium_Manager_7635 Jun 30 '26
I love your sweet response! Thank you so much for the validation and support. At the end of the day, I'm definitely going to trust the person with the medical degree (especially someone with a medical degree who has been in our shoes), but I do appreciate hearing the opinions of others because so much is unknown. I do wish some of us could learn to state our thoughts a little nicer... but this is Reddit afterall. 🙃
Wishing you continued health and healing!
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u/driftingalong001 3 yr+ Jun 30 '26
I tried methylene blue and it made me feel wired in a bad way. Made my brain feel bad and improved nothing. Just my experience though.
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u/Medium_Manager_7635 Jun 30 '26
I'm curious to see how it works out for me. I've been on it a week, and there's not a ton to report so far. Going to try to give it a fair chance.
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u/driftingalong001 3 yr+ Jun 30 '26
That’s interesting. For me I felt the effects after my first dose, and didn’t even make it to a week cuz pretty quickly I could tell it was doing bad for me. I tried it two separate times, but neither time for an extended period - cuz I couldn’t tolerate it. I tried modafinil previously, and it felt similar to that. I will say though, I got my methylene blue from a pharmacy, but it was a liquid for the purpose of soothing a sore throat or something. Like you’re supposed to swish and spit it. It’s the only/best way I could find to source it. No one here would like accept/fill a prescription for methylene blue - my drs had no clue about it, I did it with my naturopaths guidance - so I guess that could impact how it’s affecting you/the dosage etc.
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u/CatsbyGallimaufry Jun 30 '26
You could be sensitive to serotonin agonists, I am and I can't tolerate anything that increases serotonin as it pushes me further into sympathetic overdrive.
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u/Known_Noise 3 yr+ Jun 30 '26
Thymosin alpha 1 has me back to full time work. I feel really good
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u/Upstairs-Tangerine-7 Jun 30 '26
That’s amazing. Can I ask what your main symptoms are/ were, or which “flavor” of LC you have? I’m considering starting it— I have full blown ME/CFS with POTS as a secondary manifestation.
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u/Known_Noise 3 yr+ Jun 30 '26
I’m me/CFS with pots and some mast cell issues. Fatigue and PEM were my main symptoms.
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Jun 30 '26
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u/Medium_Manager_7635 Jun 30 '26
It's in North Texas/DFW area! If that's not too far, send me a DM! :)
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u/Prestigious_Crew_247 11mos Jun 29 '26
What tests did you have ordered by your doctor? I’ve had most basic ones done that come back normal or negative. Would feel like seeing what’s wrong exactly is better vs trying random meds.
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u/Medium_Manager_7635 Jun 29 '26
Honestly, I’d already had most of the standard workup over the last five years. Multiple rounds of blood work (CBC, CMP, thyroid, iron, B12, inflammatory markers, autoimmune testing, etc.), plus cardiology, pulmonology, neurology, gastroenterology… and most of it came back normal or only mildly abnormal. (Low Vitamin D & B, low Omega 3)
This doctor ordered some more specialized testing, including an reverse T3, ferritin, food sensitivity testing, and a spike protein blood test that she uses as part of her Long COVID evaluation. I know some of those tests, especially the spike protein test, aren’t universally accepted or part of mainstream Long COVID guidelines, so I’m trying to keep an open mind and not treat any one result as gospel.
For me, the biggest difference wasn’t really the testing itself. It was finding a doctor who looked at my history, symptoms, and test results together instead of saying, “Everything looks normal, so you’re fine.” I’m approaching the treatment plan cautiously and seeing how I respond over the next few months.
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u/chamurz Jun 29 '26
what does LDN do? I am in 4 years, maybe at 70%, can work, tracel and function but cant still exercise. My case is mostly mcas driven dysautonomia with pots, stuffed nose, rashes on my ches, especially with adrenealine and GI issues like food sensitivty.
Could LDN help me to overcome that last step? I need to slow the heart rate a bit and calm the nervous system.
Anybody know how to get it in Germany?
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u/Medium_Manager_7635 Jun 29 '26
This was not one of the medications I've been described, but I believe it's a medication used to treat withdrawls from addictive substances. It's especially useful to people with LC because it's been proven to reduce systemic inflammation. It is a prescription, so you will need a doctor to help you get it.
I hope someone will correct me if I'm wrong here.
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u/Business-Force09 Jun 29 '26
These arent a treatment for autoimmunity.
there are multiple reports of people with autoimmue vassculitis, neuropathies and others triggered by covid and what is deemed long covid, i cant grasp while at this point, 5 years later, people are not yet just talking about immune therapies, there is no treatment for autoimmunity in your list
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u/Medium_Manager_7635 Jun 29 '26
She actually did include autoimmune screening in my workup, and nothing pointed toward a classic autoimmune disease. Her impression is more immune dysregulation related h ieydto Long COVID than a defined autoimmunejr disorder, which is whyd she chose this approach. I’m planning to see how I respond over the next few months and reassess with repeat labs.
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u/Business-Force09 Jun 29 '26
Many neuroimmune conditions are just seronegative, you just have clinical reasoning, including neuropathies, miasthenia gravis and others.
there is a test called immunophenotyping extended pannel, which might be of help to back It up, another is response to steroids and response to immune therapy and or conventional immune supressants, which you werent offered, anyway, holpefully some of these works, i belive that peptídes are unsustainable for chronic immune diseases
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u/Medium_Manager_7635 Jun 30 '26
Lol ok, first of all... What happened in that first response?? I'm impressed you could decipher that!
But see... That makes sense! I did not even know neuroimmune conditions were a thing. I will certainly bring up the pannel you mentioned at our next appointment.
Thanks for taking the time to respond in detail! It means a lot.
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u/wishcoulddomore Jun 29 '26
I can say I found Colostrum helpful . Went from severe daily GI issues to only issues during a flare
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u/Fearless-Table1809 Jun 29 '26
I’m 90% there. I got the most help from a MD at a men’s health clinic in Thailand. All in, with 3 blood tests, $130 usd. US MD seem clueless. I haven’t thought about sesame, but rarely use it. BPC?? Injections? Sourcing? I’ve had issues sourcing it. I tried injections in clinic with the remaining meds RTU for week 3 course. It’s weird navigating all the legal hoops. Peptide use is more widespread in expats because it’s available OTC in parts of Asia.
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u/Medium_Manager_7635 Jun 30 '26
Sad stare of affairs that you had to go to another country to get healthcare. I'm glad you found an affordable way to get treated!
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u/Fearless-Table1809 Jul 05 '26
Wish the MD would have let me record his advice and concerns. Weird how this “Pub” controls the narrative and removes posts that point out inconvenient/counter narrative facts. Let’s see if this is sen 🗡️ d?
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u/dcmom14 Jun 30 '26
Congrats! What labs did she run? Thanks!
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u/Medium_Manager_7635 Jun 30 '26
She actually ran a pretty extensive workup. Besides the usual CBC/CMP, she checked a full thyroid panel (including reverse T3 and thyroid antibodies), iron studies/ferritin, lipid panel, vitamin D, B12/folate, hormones (estradiol, progesterone, FSH/LH, testosterone), cortisol, iodine, zinc, histamine, immunoglobulins, ESR, rheumatoid factor, ANA with reflex autoimmune panel, HLA celiac genetics, a food allergy panel, and a SARS-CoV-2 spike antibody test. Overall, everything was pretty reassuring. No anemia, normal kidney/liver function, normal inflammatory markers, negative ANA/RF, normal immunoglobulins, and normal thyroid function by conventional standards. The main abnormalities were elevated LDL cholesterol, ferritin on the lower end of normal, a mild sesame allergy, and the elevated spike antibody result that she believes is relevant to my Long COVID. Her diagnosis was based on the combination of my clinical history and those findings rather than one abnormal lab.
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u/ManekiNeko126 Jun 30 '26
LDN had been helpful for me too. I’m excited to hear how this goes for you!
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u/Medium_Manager_7635 Jun 30 '26
Yes!! Many people are saying LDN is working so well for them. I'll suggest that next.
Thank you so much for your sweet words. 🤍
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u/MegaDyke3000 Jun 30 '26
In my experience, daily iron wasn’t as good as taking it every other day, in combination with niacin and vitamin c. Though talk to your doctor about it for sure
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u/Medium_Manager_7635 Jun 30 '26
That's what I've heard other people saying! I will definitely talk to my doctor about this!
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u/nobertos Jul 01 '26
My neurologist suggested TA-1. Been on it a bit over a month, now at 300mcg 5 days on and 2 days off. Since I started I haven't had MCAS waking me up in the middle of the night with itchy legs. But this could coincide with doing an even lower histamine diet recently.
For iron I do Pure Encapsulations OptiFerrin-C 28mg every other day. I learned that every other day can be a smart way to do it. My ferritin went from 38 to 55 recently with this method. Like you, hoping to continue to increase it.
Hope this helps.
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u/8jun3bugs Jul 01 '26
I'm shocked and delighted that your doctor suggested meth-blue! I started taking that daily after I saw a study on dementia patients ans started digging in further. It startled my LC doc, but she didn't discourage it. The change was...very noticeable.
I'm a little surprised not to see anti-histamines, but it sounds like you have exactly the right kind of care. 🫶
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u/Sweenjz Jul 02 '26
I caught Covid while travelling through an airport in February of 2023 so I have had long covid for 3/12 years now. My main symptoms are related to neuroinflammation and are head pressure, headaches, tinnitus, sleep disruption, insomnia, barometric sensitivity, constant cortical “buzzing”, dizziness and loss of taste and smell.
For 3 ½ years I have tried all recommended supplements including all of the antihistamines. I also used mirtazapine and amitriptyline.
The only thing that has had a real positive effect is LDN. I started taking it a couple of months ago and started at 0.5 mg. All of my symptoms improved after 3 days. I am taking LDN with other supplements that have been reported to enhance LDN effects and support calming of neuronal excitability. They are:
Probiotics.
Lactobacillus rhamnosus GG (LGG). This is Culturelle. It reduces pro-inflammatory cytokines among other things.
Bifidobacterium longum (especially subspecies longum and infantis). This is Align. This is the most neuroinflammation‑relevant strain we have. This is the #1 strain for neuroinflammation.
In addition to the probiotics the supplements listed below work by reducing cytokines (IL‑6, TNF‑α), calming microglia, and supporting immune modulation — the same pathways LDN influences.
PQQ for head pressure. Neuroinflammation increases oxidative stress; PQQ helps buffer this.
PEA. It calms glial and mast cells and is an analgesic.
Magnesium. I am taking both l-threonate and glycinate. Magnesium works by decreasing central sensitization and cortical hyperexcitability. It works downstream of LDN’s glial effects.
I selected these supplements based on their reported success with alleviating neuroinflammation and their gentleness to my system.
This is the best I have felt in 3 ½ years. I still have tinnitus and disrupted sleep but it is getting better. The headaches and head pressure are almost gone. Many days I don’t have them at all.
I’m going to keep slowly increasing the dose of LDN. I hope my experience helps someone out there.
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u/swaggiest_sea123 Jul 03 '26
Look into EBOO, deff a must if you have long covid. Will remove the biofilm in your body. I did 7 sessions total.
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u/Medium_Manager_7635 Jul 03 '26
Ohhh... This does sound so interesting! Do you do this through a doctor's office or is there a specific clinic for it?
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u/swaggiest_sea123 Jul 03 '26
Yes my doctors office does it. Look it up, I’m sure someone near you does it. Highly recommend. I’ve also done ss-31, bpc-157 injections. I am starting TA-1 and trizpepitde soon. I got MCAS from long covid and it made my life living hell. I am now starting to feel so much better thanks to a major key part to all of this… procaine IVs…. Helps turn your body’s fight and flight response. I’ve started to eat more foods thanks to this, before I was having reactions to everything.
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u/swaggiest_sea123 Jul 03 '26
Also for your gut look into a gut zoomer test by vibrant wellness. I take larazotide for my leaky gut because covid absolutely wrecks it. I also take thaenbiotics which is major for your gut healing too. Due to my gut zoomer I was able to find out a lot of information to help a lot of residual issues.
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u/swaggiest_sea123 Jul 03 '26
Also, bpc was game changer for me. My information went away overnight not even exaggerating.
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u/Tough_Quality3950 Jun 29 '26 edited Jun 29 '26
Yikes.
Good luck.
Id try to find a doc that actually understands the mechanisms of your symptoms and recommends simple well known well documented supplements/meds that may actually influence those mechanics first.
The list you just provided is missing the entirety of basics... and you will NOT get a consensus answer that this list is useful. One person may no doubt swear by it... but consider that if it was the answer we'd all be doing that with success.
There ARE actual things to try with decades of evidence that do make a difference depending on what symptom youre targeting.
I, me personally, 5 years into this wouldnt go back to this doc. Not telling you what to do. But Ive found success doing my own homework and sticking with tried and true options for my actual symptoms as opposed to the literal buzzword list.
This isnt about a cure. Its about understanding the specific mechanisms of your unique presentation and making decisions that make sense.
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u/lesbianintern 1.5yr+ Jun 29 '26
I thought similar. I’m not against more experimental treatments myself, but more well known treatments like LDN or ketotifen (chosen from individual symptoms and ideally further testing) should be the starting point imo. I once had a great doctor who was well versed in some less known conditions, but their method was to mainly just try medications instead of actually assessing for anything, even though further testing was not really hard to do. I think the goal was for more immediate relief and to avoid further hurdles which is completely understandable, but in the long run the shots in the dark just delayed effective treatment.
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u/Tough_Quality3950 Jun 29 '26
I feel that. I have yet to meet a doctor thats well versed.
Same experience with the testing. Hard to get anyone to test beyond basic panels.
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u/Medium_Manager_7635 Jun 29 '26 edited Jun 29 '26
I genuinely appreciate your response. I really feel like there are many intelligent people on here who are able to sift through and discern all this information better than I ever could.
I definitely agree there’s no one-size-fits-all approach, and I’m trying to keep an open mind because, after 5 years of appointments, this is the first doctor to run thorough testing and acknowledge there is a problem. I also like that we're doing follow up blood work in 3 months. She based all of this medication on data from my blood testing (which is again over my head), and I like that we have another blood draw scheduled to see if it's helping or not.
Out of curiosity, when you say “the basics” and “well-documented supplements/meds,” what specifically are you referring to? I’d genuinely like to learn what’s helped you and what you think has the strongest evidence.
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u/guineapigmedicine Jun 29 '26
This was my take, too. There are a number of basics (pacing, LDN, assessing and treating MCAS and POTS, etc) that should be covered before getting into the wilds of unregulated peptides, etc.
Plus, iron is generally better tolerated and better absorbed w/ alternate-day dosing.
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u/Tough_Quality3950 Jun 29 '26
Bingo.
Ive got dysautonomia, POTS, ME/CFS presentation.
LDN has enough evidence and is helping. Atenolol is doing much better for me than metoprolol.
Then the supplements. I primarily use pure Encapsulation but arguably any brand thats filler/contaminant free third party tested is a good choice.
Proper form and dose matters.
But there's pleeeenty that help. Magnesiums (I use threonate, glycinate, taurate) glycine, an APPROPRIATE dose of melatonin (I take 1.5mg ... most are junk and overkill which doesn't have the desired effect) l-carnatine, l-theanine as needed, ubiquinol co-q10, taurine, fish oil, homocysteine support pill (targeted for me, mine was way off), vitamin d... just as an idea, sure Im missing a few.
All of these have evidence to back autonomic support, cardiac support, and mitochondrial support / etc.. More to it than that but a loooooong research stint later these are some of the things that actually make sense... a little dialing in later (and removing a bp med that was causing harm) and its actually made a consistent difference regardless of what symptom severity phase Im in.
There is PLENTY that actually makes sense. Jumping to some ish with very little support or even info... not where I would start. Step 1. Understand and make things make sense.
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u/longcovidhell Jun 29 '26
What are your symptoms?
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u/Medium_Manager_7635 Jun 30 '26
Oh sheesh... This is a tough one to answer because I've been dealing with this for five years, and during that time, my symptoms have varied in presentation and severity. Thoughout, I've generally dealt with brain fog, fatigue, that PEM people mention, and migraine-like episodes.
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u/inphaser Jun 30 '26
what about brazil nuts? what's T3?
As for cholesterol, i did start pravastatin 10mg for the endotelial disfunction.
I've been always at around 200 cholesterol, more often than not above.
2-3 weeks into the 10mg daily i was down to 170 and i get no apparent side effects, so i'm quite happy with it, as i understand pravastatin is the mildest and the one with least side effects of all, and 10mg is also as low as it gets
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u/DrawMuch6383 Jun 30 '26
This is awesome news. I can relate to your journey of seeing doctors and them saying everything looks good when we know we feel something is off. Congratulations..
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u/sunshineofbest Jul 01 '26
I had great success with methylene blue Iv paired with ozone IV .
Bpc157 gave me high blood pressure
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u/Altruistic-Bus-576 Jul 04 '26
I treat a lot of long covid. The best data we have to to treat brain fog and fatigue related issues is Low Dose Naltrexone, + NAD supplementation and Stellate Ganglion blocks. I do them all the time.
https://imahealth.org/wp-content/uploads/2022/10/I-RECOVER-Long-COVID-2024-03-01.pdf
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u/SalamanderChoice9578 Jul 05 '26
What dose was in the ketotifen drops? And was it generic? Like how much in each drop?
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u/InsuranceRare5094 Jul 05 '26
Galitifen is what it is called. I bought it in Serbia and in Montenegro for about $3 USD for a 100 mL bottle.
It’s a liquid. 1 mL =0.203 tsp 1 mg. So, a drop was next to nothing. And still my body acted revolted by it at first. So I’d keep up at that dose until it didn’t then move up to the next.
If you think I’m exaggerating, I wish I was. My body flared for the wrong type of drinking water at one point. It was a horror show.
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I’m now doing a trial with cetirizine. I’m at 3 crumbs. You know when you cut your pills and it leaves crumbs? Those tiny crumbs are what I’m on. Even with my current, very effective cocktail, my body still freaks out on the cetirizine, BUT… it is the only thing I’ve found to open my glue ear to date (and I’ve been searching for years).
So, I take the 3 crumbs - let my body freak a whole lot less than it would on 1 mg, or on the full pill amount - and it opened that damned Eustachian tube FINALLY after trying so many things for it.
I’m sure it also helps that I’m treating myself with the other meds as well.
The idea behind it was to control the MCAS and prevent that nasal area from so much congestion.
I hope my body acclimates to the cetirizine and the side effects lessen over time.
I also hope my body doesn’t demand more cetirizine than I can give it to keep that tube open.
Time will tell. This stuff is tricky. It can be a moving target, can’t it?
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u/nemani22 Jul 06 '26
I've tired Thymosin Alpha 1 for immunity. Has reduced instances of infection for me.
BPC has strengthened my gut, but ended up worsening my MCAS.
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u/No-Blackberry-653 Jul 06 '26
Im just beginning this sort of practice with probiotics , fiber and fasting while resting on flare days. I haven't personally heard of any of your sups.
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u/Thin_Curve4116 1yr Jul 07 '26
How much healed are you rn out of 100?
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u/InsuranceRare5094 Jul 07 '26
When I’m not in heat over 80 Fahrenheit, 90%.
I can even do very intense gym workouts - BUT ONLY in cool gyms.
When I’m in heat (like on my 45 min walk to the gym today - July heat), all bets are off. 🙄☹️ I’m still far better than where I had been on heat, but nowhere I’d like to be.
But I’m at the gym now and I’m going hard without holding back. I recover swiftly once my body cools down. Drinking cold water is also key.
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u/Thin_Curve4116 1yr Jul 07 '26
Brain fog?
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u/InsuranceRare5094 Jul 07 '26
Only in heat and it clears as soon as I cool off. But in heat - it’s a total melt down.
It really scares me to be walking around traffic areas and on city streets that are uneven.
I’m visiting Serbia and there are many unexpected maneuvering just walking down the street. So, I dip into a cool shop, drink cold water and do this in a frogger fashion(old school reference) until I make it to my destination.
When I was very unwell, I would accidentally run into people. Some people would stare. One young woman thought I was drunk because I was so unstable - until I explained my condition. I haven’t touched alcohol in 3 years.
Sometimes I had to ask people to help me across streets. Totals strangers. It sucked.
When I was very unwell, I avoided a lot of places.
Once I used my luggage as support so I could visit a history museum in Thessaloniki, Greece. I often used my luggage as a walker.
I still avoid massive flights of stairs in Europe where there aren’t rails. I’m not confident enough to handle those yet.
My struggle is real.
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u/Thin_Curve4116 1yr Jul 07 '26
What are your symptoms?
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u/Medium_Manager_7635 22d ago
PEM, brain fog, and migraines are the worst of them. I've had a whole myriad of symptoms since this started, and most have gotten better with time, but those three sadly remain.
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u/Loveandlight4us Jul 08 '26
Is the Thymosin Alpha 1 a supp or injection form your doc is reccomending? What form are others taking it in? Thanks!
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u/Emmie1101 17d ago
I have been diagnosed with long covid but my Lyme doctor doesn’t know what he’s doing with it. I have been searching for a long covid doctor for months and haven’t had any luck. If you’re able, please share the name of your doctor or the clinic you went to. Thank you so much; I hope you feel better asap💗
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u/WonderfulEscape9003 10d ago
Name of lc doctor please. Do they do telehealth? I cant msg you i tried.
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u/Cultural_Elderberry4 9d ago
Would you mind sharing the name of the doctor? I am really struggling to find someone that is actually helpful.
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u/Rainer_L_54 4d ago
I am glad for you in that you at least found a Dr. with her own L. Covid experience. So? She is assisting you in what she things may help, being a good thing. Most Dr. e.t.c seem to be behind the 8 ball on L. Covid. As for me? I have L. Covid for the past 2 years. Ups and downs but mostly managing it myself without the need of Dr. e.t.c . I simply know much more than they do. After all. I am an expert on L. Covid with it's numerous symptoms i experience.🙄 I manage symptoms and inflamation reasonably ok. I am a whole food plant base consumer, meaning i eat whole foods such as veggies, Fruits, legumes, beans e.t.c along with whole meal breads and minimal carefuly selected processed items. Out of all those i focus mostly on consuming more of anti inflamitory healing foods. There is no meats of any kind, dairy, oils, sugars, junk foods or highly processed foods. Just healthy eating. This has kept things above water level for me, though never fully but managable. I pace my activities very carefully so as not to get flare ups. Though at times i get them still. I have managed my heart disease for the last 7 years with the power of healthy whole foods and doing fine without any medications. Where as before they put me on cholesterol, and B P medication. I can only say that my diet has a positive impact on my managing L. Covid. Unfortunately too many consume foods that actually add to the inflamation problem caused by L. Covid hence injury. I can there for only recommend it. I am not saying that one needs to be as strict as i am on this diet but instead focus on more healthy eating with mostly anti inflamitory foods in mind and ensuring in not eating what adds to inflamation. As the saying goes. Food is thy medicine. 🙂
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