In So Much Pain And Scared, Getting Worse Rapidly

[S-VV]

Bro, pm me your PayPal :)

 

[energyandstruct]

Does anyone have a recommendation for hot water bottle

 

[energyandstruct]

Or electric blanket

 

[energyandstruct]

At this point the only thing that have helped me is high dose ketotifen and cyproheptadine when having severe reactions and insomnia

 

[boris]

Electric blankets are related to cancer incidences. High EMF. Peat mentionend them in a recent interview.

 

[greengr]

If you buy them, start with e coli only for one week until you load up on it, because Miyarisan lowers e coli. When taking both, make sure to space them at least a few hours apart.

Miyarisan is an interesting probiotic for sure, but I wonder about its butyrate producing effect. Some people with ME/CFS have EBV virus, is it possible that butyrate could reactivate it? Not sure if that is something a person with ME/CFS would want to do. But then there seems to be some conflicting information... Viral clearance is important in regards to lessening the burden/symptoms. Although it is strange that some people feel better during a cold. So who knows. It's a rather complicated illness and I hope they come with a breakthrough soon for those suffering from it.

Activation of lytic Epstein-Barr virus (EBV) infection by radiation and sodium butyrate in vitro and in vivo: a potential method for treating EBV-p... - PubMed - NCBI

 

[energyandstruct]

Click here to support Walker's Medical Fund organized by Walker Storz

 

[energyandstruct]

Homeless In The Southwest. Assistance Needed

 

[energyandstruct]

 

[freyasam]

View: https://youtu.be/lZjQB5Nl4UQ?si=OvLFR1we8bFlakYx


This is the latest update from OP. Hopefully ok to share here. If not, maybe his caretaker can let me know and I'll remove it.

I also have ME/CFS (14 years) and it's not as easy to "fix" as most people believe. It's one of the most severe illnesses, not to mention stigmatized, and people just call it "chronic fatigue" and then tells you to buck up, everyone is tired. While we have lower quality of life than terminal cancer or heart disease patients.

Been following Ray Peat's advice for 10 years and it has not cured me. I've declined a lot from ME/CFS the past year despite following Peat's stuff to the letter (and sometimes not following it, for experimentation purposes. It is the best diet approach I've found as I get even worse without it, but it's far from a cure). I love Ray but sorry, he didn't know how to fix this. which is a shame since it's a disease of energy production and that was his thing. And there are millions of us wasting away in bed, or homeless if really unlucky, with an devastating level of function. You can't imagine how bad until it happens to you.

this is waaay beyond the realm of magnesium and b vitamins as well. if probiotics and magnesium cured your "cfs" you didn't have what we have. Or it wasn't as severe, where a certain level of severity means passing a threshold where these supplements no longer help.

Sometimes diet and supplements just don't work and I hope people will understand how severely debilitating this illness it. OP is bedbound has been wearing an eye mask 24/7 for a year which is common with severe ME/CFS. Please be aware this is not just an easy fix and it is devastating.

Donate here to his fundraiser:

Donate to Support Walker's Recovery from Severe ME-CFS, organized by Hannah Burnham

walkerstorz.com "Mere survival isn’t waking, living, dying or dream… Hannah Burnham needs your support for Support Walker's Recovery from Severe ME-CFS

www.gofundme.com

 

[freyasam]

I recovered from clinically diagnosed CFS attributed to EBV. I do think undiagnosed celiac disease was involved too. I'm just letting you know because I'd hate for you to lose hope. I know it's hard not to when you're in the thick of suffering.

Hi Blossom, I'm really curious about this and have a few questions please.

How severe was your CFS in terms of reduction of function?
Were you able to continue working outside the home, full or part-time?
Were you able to perform all basic daily tasks to feed, cook for, bathe yourself?

Did you experience post-exertional malaise? (After mental or physical exertion, a severe exhaustion usually with cognitive decline that often takes days of bed rest to recover from)

how long did you have CFS?

 

[Blossom]

@freyasam, I had CFS from 1999 to 2012. By the Grace of God and sheer stubbornness I somehow worked 24 hours a week outside the home. I really didn’t have an option and even passed out at work one night while I was resuscitating a premature baby. I was at a teaching hospital and came to on the floor with a bunch of medical residents standing over me. In hindsight I should not have been doing it. It wasn’t like a switch flipped in 2012 either I just started doing better and went up to about 30-35 hours per week but still struggled. I was able to manage daily tasks with the help of my husband. I think it was triggered by a 50 day course of levaquin after a body fluid spray/exposure at work and the high Epstein Barr was just part of the overall picture. Yes, I had post exertional malaise. In the first couple of years I couldn’t manage being out of bed for more than 20 minutes at a time.

 

[freyasam]

@freyasam, I had CFS from 1999 to 2012. By the Grace of God and sheer stubbornness I somehow worked 24 hours a week outside the home. I really didn’t have an option and even passed out at work one night while I was resuscitating a premature baby. I was at a teaching hospital and came to on the floor with a bunch of medical residents standing over me. In hindsight I should not have been doing it. It wasn’t like a switch flipped in 2012 either I just started doing better and went up to about 30-35 hours per week but still struggled. I was able to manage daily tasks with the help of my husband. I think it was triggered by a 50 day course of levaquin after a body fluid spray/exposure at work and the high Epstein Barr was just part of the overall picture. Yes, I had post exertional malaise. In the first couple of years I couldn’t manage being out of bed for more than 20 minutes at a time.

Thanks for your response!
What helped you recover, finally?

 

[Blossom]

Thanks for your response!
What helped you recover, finally?

The biggest improvement initially was getting diagnosed with celiac and going gluten free. I found my way here in 2013 and thyroid helped a lot. I was also unknowingly eating low oxalate at first by focusing on fruit and dairy so that helped. I couldn’t eat that way long term because I gained so much weight that I had new issues develop but my CFS remained in remission. I finally figured out the oxalate piece in 2019 which helped even more. I think the levaquin destroyed my gut and ability to eat gluten and oxalate amongst other things so once I stopped eating those things my body could recover/heal. I also was poisoned by some pharma drugs during my CFS years and then overdosed myself with vA trying to get better so there’s been a lot that transpired over the years but I’ve considered myself basically in remission for 12 years now.

 

[freyasam]

The biggest improvement initially was getting diagnosed with celiac and going gluten free. I found my way here in 2013 and thyroid helped a lot. I was also unknowingly eating low oxalate at first by focusing on fruit and dairy so that helped. I couldn’t eat that way long term because I gained so much weight that I had new issues develop but my CFS remained in remission. I finally figured out the oxalate piece in 2019 which helped even more. I think the levaquin destroyed my gut and ability to eat gluten and oxalate amongst other things so once I stopped eating those things my body could recover/heal. I also was poisoned by some pharma drugs during my CFS years and then overdosed myself with vA trying to get better so there’s been a lot that transpired over the years but I’ve considered myself basically in remission for 12 years now.

I'm glad to hear you are in remission! So would you say the piece that helped you from Ray's work would be thyroid, and incidentally low oxalate from his focus on fruit and dairy?

 

[Blossom]

I'm glad to hear you are in remission! So would you say the piece that helped you from Ray's work would be thyroid, and incidentally low oxalate from his focus on fruit and dairy?

Yes. I tolerated gluten and oxalates fine before being poisoned by levaquin. I think probably the drug and not EBV caused CFS by damaging my mitochondria and gut.