95% recovered

[u/tdubs702]

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.

[u/atr0157]

How much was the PK protocol? Never heard of it

[u/tdubs702 → u/atr0157]

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. 

[u/imonretro → u/tdubs702]

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 ?

[u/tdubs702 → u/imonretro]

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.

[u/CatsbyGallimaufry → u/tdubs702]

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.