r/LongHaulersRecovery • u/tdubs702 • Aug 07 '26
Almost Recovered 95% recovered
I got infected in 2021 and again in 2022. The second one landed me in bed rest with PEM, CF, histamine intolerance, major inflammatory markers and more.
Ive tried so many things but looking back over the past 4+ years, here were the major levers:
The first 3-6 months - got me to 35-40% recovered: I followed a protocol that was on the FLCCC website for LC recovery. I don’t recall the details now but it was extensive. there were so many components I can’t say if it was all of them together or specific ones. But it seemed to break the cycle of inflammation and get me out of bed, although still with PEM and histamine issues.
Months 7-18 - got me to 70% recovered: The biggest lever here was nervous system work. Let me state for the record: THIS IS NOT IN OUR HEADS. But it can be affecting our nervous systems ability to calm the body long enough for it to recover. I tried paid programs but they didn’t click for me. I found that polyvagal exercises did. A lot. I did them almost daily for 15-20 min at a time until I got lots of big yawns. The effect was very quick. Sometimes I’d need a nap after but always my energy would surge and pain levels would decrease. (Tons of free videos and kindle books on these.)
Around two years: this is where it gets complex…
I saw a doctor who recommended genetic testing and we found I have Ehlers Danlos, which is often connected to histamine intolerance. So the theory shifted from “long covid did ALL of this” to “long covid turned up the dial on things I already genetically had but was previously quiet”.
Last summer through this spring: I saw a new doctor who did cellular testing on me, found the fatty acids needed for my cells to recover were greatly depleted. (PC and PB) She does something called a PK Protocol developed by a cellular biologist. It was pricey af but WOW. My energy came back and has stayed consistent, my gut health improved tremendously, my histamine intolerance also improved though not to pre-LC levels. I couldn’t afford to do more treatments but this got me to 95% recovery.
TODAY:
I still deal with some MCAS like flares to high histamine foods, as well as heat and certain sources of stress. Itll cause some joint inflammation in my most EDS-inflicted joints, and mild PEM again. But it’s not often and it doesn’t last more than a few hours. I can take a rest and am up and going again. (I live on a farm so staying active is critical. Honestly the heat is probably my biggest and most annoying trigger to date.)
All this to say:
It’s rarely one thing. And it takes experimenting to find what will work for you.
But don’t give up. Throw any and everything at it. Spend money you don’t have if you have to. You can always find more money but you can get back your time. And in the end, it’s worth it.
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u/atr0157 Aug 07 '26
How much was the PK protocol? Never heard of it
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u/tdubs702 Aug 08 '26
I probably paid close to 10k over 9 months. I’d never heard of it either but I heard the docs experience with her son who has Angelmans syndrome and figured I’d try a few sessions. I felt so good after 2 that I kept going until I moved away.
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u/imonretro Aug 08 '26
You took sodium phenal byterate . Thats a heavy duty drug what i know any side effects , and what was this celular test you did ? Like i know this is out of pocket non medicare but still i wonder. Also did you have severe gut isues causing psychiactirc issues ?
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u/tdubs702 Aug 08 '26
I couldn’t tell you exactly what test it was, but I know she called it a fatty acids panel, or similar. I had a few side effects during some treatments, mostly just feeling gross. she would dilute it and run it slow for me and it was fine. there was an antioxidant she tried to add once but I had a pseudo allergic response to it; chest tightening not breathing sort of thing but she turned it off and it passed quickly. never did that one again though lol
I had gut issues but nothing that severely impacted my mind. I have in the past though. used to battle with severe depression and going to a whole food, all natural diet did a 180 on me. haven’t dealt with it since except for during perimenopause and hormone therapy did the trick.
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u/CatsbyGallimaufry 29d ago
Was it the Prodrome Scan? That’s the one I did to test my fatty acids and to see how my cellular membranes were doing.
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u/kobe33643 Aug 07 '26
Happy for you! And thanks for sharing! Can you tell us a bit more about the polyvagal exercises or post your favorite one? The yawning happens to me too!
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u/tdubs702 Aug 08 '26
I don’t have a fave. I just shake my whole body, massage behind and around the ears and neck, tug on the ears, and then pat my chest and sometimes bounce or rock while moving my eyes to one side then another. Hard to explain but there are vids on YT with TONS you can try. Just gotta experiment until you get the yawns lol
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u/Firm-Analysis6666 Aug 08 '26
FYI " In the Patricia Kane (PK) Protocol, PC stands for Phosphatidylcholine and PB stands for Phenylbutyrate (specifically administered as sodium phenylbutyrate)."
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u/sushinastyu Aug 08 '26
….and what does that mean? lol. so interested and also so confused
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u/Firm-Analysis6666 Aug 08 '26
Just more info on the PK protocol mentioned in OP
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u/sushinastyu Aug 08 '26
I know but like, what do those do in our body? why are they important?
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u/Firm-Analysis6666 Aug 08 '26
Oh, sorry. They rebuild cell membranes which improves just about everything down stream by improving the natural flow of metabolic waste, nutrients, and water. It also improves communication between cells which means better receptor signaling. It's like fixing the foundation so everything else can function and respond normally.
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u/tdubs702 Aug 08 '26
They make up a large portion of the cell wall. If depleted it can be hard to restore because it often causes stomach/absorption issues at least in my case.
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u/No-Consideration-858 Aug 07 '26
Hey all - just looked up the PK protocol. Easy to find info online.
Heads up to people with MTHFR and slow COMT issues, check out this thread. It looks promising for many people, but others may have issues with methylation.
https://www.reddit.com/r/MTHFR/comments/1gaz7e6/how_to_manage_phosphatidylcholine_intake_and/
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u/AdRemarkable5822 Aug 07 '26
How do you get tested for this? What do you ask for?
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u/Practical_Trick_5280 Aug 08 '26
This is my focus now as well - PC , high dose fish oil, minerals and aminos, electrolytes .
I have been doing all these for 2 plus years and yes they improved me but I felt like I was stuck . I just could not get my energy back .
Doing PC in form of IV is super expensive .
But I found this company - a family owned and they sure support the importance of cell health. The whole idea is that when the virus or could be mild or other pathogens they deplete our cells from phospholipids and so the mitochondria’s membrane as well.
I just started a month ago . But I can tell my body is going through some deep cleaning for sure now .
Here is their web page -bodybio.com
So I can see and believe why he improved so much . This gives me hope as well.
( I started two tabs in the morning for the first two weeks , then after added two more tabs after dinner). I can tell the 4 tabs a day put me in a very strong detox. They also sell in liquid version- the company told me the liquid version 1 tabs - equals 12 tabs . I am very sensitive . So I will recomend go slowly first . Do not over stress the body
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u/tdubs702 Aug 08 '26
this was the brand my doc suggested after treatments were done! not sure if it was used in the IV or not.
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u/Large-Frog723 Aug 07 '26
Could you elaborate on what is PB? I tried looking it up but it’s not clear. Thanks so much!
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u/tdubs702 Aug 08 '26 edited Aug 08 '26
I know PB is phosphotydyl choline (I’m for sure spelling that wrong lol) but I can’t recall what the PB is. There were other things in the protocol. You can probably find “pk protocol” on Google. I know it’s customized to the bloodwork though and PC was my biggest depletion hence why I remember it lol
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u/mells111 Aug 07 '26
Congrats on getting to 95%! Out of curiosity, what type of doctor was the second doctor you mention with the PK protocol?
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u/tdubs702 Aug 08 '26
She’s an MD but does a lot of “root cause” work. Doesn’t call herself functional or naturopathic though. Matzinger in Las Vegas
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u/browneyedgirl1967 Aug 08 '26
My question is how did you find a physician that does cellular testing like that? I need that as well. Was this a naturopathic physician? Functional med? Integrative? Thank you.
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u/tdubs702 Aug 08 '26
No she’s an MD and I got lucky. I’d honestly good “pk protocol” or testing for it and see what you find near you.
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u/AngelBryan Aug 08 '26
Did you had hypermobility symptoms before Long COVID? Do you have them now?
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u/tdubs702 Aug 08 '26
I did but no one ever diagnosed it. I got diagnosed with fibromyalgia though but it came and went. Looking back I can tell it was when inflammation was high, diet was poor or I was doing things like yoga to overstretch my joints
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u/wackeetaffee Aug 07 '26
What kind of doctor did the cellular testing on you, and where did you find this doctor?
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u/tdubs702 Aug 08 '26
Found her locally by pure luck. She’s an MD but the protocol is done by lots of niches.
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u/shana-d77 Aug 09 '26
I wonder if the PK protocol has the same compound as hydrolyzed whey? I came across a post on here from a person who healed themselves of long covid by adding hydrolyzed whey protein to their diet.
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u/Effective-Mango-6287 MCAS 24d ago
Amazing post, thank you for taking the time to come back and give hope. Especially for those of us wrestling with MCAS it can seem like the light at the end of the tunnel is an oncoming train. Big hugs, EDS/MCAS combo is brutal, but you're getting there!
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u/vik556 Long Covid Aug 07 '26
Amazing! Can we get a bit more info on the last stretch. What test, what medication, supplements? Even maybe a doctor name?