Has anyone on this site cured him or herself of CFS/ME? Did I?

overtrain

Medical Mafia needs to die via this virus.
Back for my yearly update in this thread I started a decade back.

Not doing so hot. No idea what's wrong, but I'm down to 100 pounds at 5'5 & 1/2.

I'm shaking uncontrollably in my upper torso, head, & neck though my hands are fairly even, & the shaking comes on 5 or 6 times a day, like if I'm standing at the kitchen sink after I wake up, I look like a wet Chihuahua. It's not terribly bad, but noticeable enough to be embarrassed about it in public, & people comment. I can't take photos anymore unless I rest the camera on a surface.

This might be what's called "Essential Tremor." I think I remember my Dad's mother used to shake her head. She was in her 70s, though. I'm 61, though I read it often attacks those 60+. It is what it is. With zero cash & no health insurance, in other words, as a typical American, there's no a lot I can do but watch & wait. My blood panel a year ago was fine. Also did the poop sample & all came up roses.

Having whittled down to a hundred, for no apparent reason, I can't help but feel like the Reaper's is on my tail. I eat excellent, nutritious vegan food, grow some of it myself, & cook from scratch most meals. I've deliberately gone out of my way to stuff my thin face with moronic food like frozen tarts, cookies, nutritional shakes, vitamin packets, anything & everything as caloric as I can get it.

Anyway, I'm overly physically active looking after feral cats & gardening & it's been a stupidly stressful year filled with several deaths, job losses, a still-dead car, housing insecurity, dental drama, & a very difficult 87 year old Narcissist for a mother who just lost her partner.

Also, Covid finally, in November, '22. Sick for 3 weeks. Took Paxlovid, got no rebound. With a dead car (a squirrel had a baby in my engine. Mama chewed the hell out of it. Baby is fine, long since flew the Ford-coop), I'm on foot everywhere, & many days I'm simply not well enough to go out anywhere. I can't even stand & wait for a bus. It's too taxing & stressful.

Waking up unrefreshed more & more, & Circadian getting back to how it was when I was sick with CFS. Start feeling almost normal around 10pm to 3am. The thing that makes me veer away from thinking this is a CFS revisit is I can THINK straight. My memory blows, but I can THINK. I can read, I can fill out forms, I don't get confused easily. How I feel now is miles away from how bad off I was in 2011-2012.

That said, lights & noise are such stress to my system. And I have to force an appetite. Things don't taste that good, & usually I love fruit but now it just tastes watery & cold, so what's the point. And I know I got over Covid, so this isn't LC (+ took serrapeptase, natto, etc.). I think it's just stress. My elderly neighbor lost her husband, didn't change her food intake at all, then almost overnight dropped 35 pounds.

Last, if anyone made it this far (what a trooper 😂, have a bouquet 💐), my 63 year old brother up in Canada has intestinal problems no doctor can suss out. He keeps getting blockages & operations. He was close to septic the first time he got surgery. They took out a lot of his colon or intestines or whatever that all is called. He lives healthy, no drugs, etc., so please, if anyone has any idea what it might be, or why a competent doctor can't determine what is wrong nor stop it from recurring. Thank you!

Hopefully I'll be back next Summer as always, but if I'm not, you can do the math. I hope people are hanging in there & finding comfort & peace any way you can. At least with Covid, the world learned about ME/CFS at last. Holy crap it took long enough. Now for A CURE.
 

hapl808

Senior Member
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2,446
I'm not sure why getting over Covid would preclude Long Covid - as the latter is just 'after' the former. I do know some people with similar symptoms (especially the weight loss, parosmia, etc) either after Covid or after the vaccine, but I don't have a lot of suggestions on what to do about it unfortunately.
 

overtrain

Medical Mafia needs to die via this virus.
I'm not sure why getting over Covid would preclude Long Covid - as the latter is just 'after' the former. I do know some people with similar symptoms (especially the weight loss, parosmia, etc) either after Covid or after the vaccine, but I don't have a lot of suggestions on what to do about it unfortunately.
Because I had Covid mid-November, '22. I went back to work fine for several months until my car died. I felt like I completely got over Covid with no residual effects. My breathing was back to normal, all that. I did lose smell at one point, but that came back fine.

Maybe my EBV got reactivated. That would make sense.
 

JasonPerth

Senior Member
Messages
155
There's some kind of general consensus that you have to wait 5 years before you can claim recovery. Think this rule is related to cancer, not sure so don't quote me on that.

Did you notice a turning point in your illness - a date when things seemed to start improving, if you look at your illness retrospectively?
Ill know im recovered as soon as i can run/jog like any other 27 year old and have a normal huff and puff after it just like a normal person running beside me. Even if it was 1 week!
 
vamah
Thanks for the Q. I unfortunately don't know what worked to turn this. I can go thru what notes i did keep and try to find milestones. Off the top of my head:
Supplements up the wazoo. Constant, continuous tablets, capsules, tinctures, chewables, powders, liquids, sprays. I was and still am continuously injesting wellness stuff. Dry herbs, anything. Protein shakes, green drinks, ayurvedic or chinese herbals. I ate a lot of tofu. For a while i ate no vegetables bc i cldnt stand them. Probably lasted for 2,3 mo. Where had to force self to open something canned like potatoes every once in a while, and i'm not a canned food type. Always did fresh food before getting sick.

I was not able to cook, and many many times skipped whole days of eating. I did frozen, canned, prepackaged foods. When i felt able to stand, i did a blender w fruit and soy yogurt A LOT (noise was unbearable. Only able to face blender sometimes, & then with earplugs & towel over head). I tried to have one hot item a day, like ramen.

Ate much dark, dark chocolate for about 4 mo. I craved it. I had cinnamon on everything for a stretch. Just weird cravings. Went on an icecream binge for the needed cholesterol for a few mo. Also craved Recees cups and chips, corn or potato.

Basically, i ate what i craved, as if pregnant. I quit flax oil bc i thought it was causing inflammation. Oh, i started taking herbal anti inflamms daily. Ate himalayan rock salt a lot every day. Drank coconut water daily as my body won't hold potassium.

Took isocort for like a year. Still taking thyroid supps. Took the lesser knowns like digestive enzymes, selenium,chromium. BIG diff when began probiotics. Felt way diff the first morning i woke up after taking the night before. Like i could think better! I ceased taking senna at all.

I did a few parasite cleanses, just pkgs bought at cvs type stuff. I also took whatever new thing i could afford at the moment that i read about here, often working for a little while then seeming to stop working. Felt heartbroken for a stretch to where i stopped rdg this site or if here wld not open forums w the latest 'this works' type info.

As an aside, not able to read or be social, i watched a buttload of vids on youtube, and dvds in general. Stircrazy, & the only venture out into the world being when forced by hunger for food, i had no outlets, really, no tv, just a sometimes working wifi & a shut off phone. 6 mo. into illness one day at the groc store, unable to bike home due to overexertion shopping (you know the drill), i sat resting & saw rock piles in pkg lot. Picked a few pretty ones up. After that, each visit over there i'd sift thru for more rocks. Take em home, clean em, then figure out jewelry designs for them. Then lose the design, or the rock, etc. lol

That grew to a full blown obsession. Got so ppl had to move rock boxes to sit down. I mention this for 1 reason: the collecting, cleaning, identifying, storing got my mind OFF my problems for very short periods of time. Soundbites of learning something new, & since my mind was shot it gave me a minor physical thing to engage in that was not taxing (sitting in a pkg lot clawing thru rubble is a no brainer). Many times i'd find a spot somewhere in town, then go late at night and sit till the sun started rising. I know it sounds cracked, but it had a role in healing. Also, the beauty in the rocks fed me, & i began collecting valuable rocks online.

Sleep: when i wanted however long i wanted. Too bad if the rest of the world rose when i was turning in. I used to feel guilty about that for some weird reason, but loved the silence. Now my cycle has reversed ON ITS OWN and i'm fine with the new conventional sleep pattern.

Got a tooth pulled that may have affected my bloodstream, who knows. Anyway, whatever has turned it, it's prob not even on this page. Too many variables. I think my CFS is viral in part & also think pro/prebiotics have gone a long way in my healing. There may be things i STOPPED like senna, flax, etc i'm not even aware of. Last, of course when 23andme came back, did whatever test indicated, like methyl pathways.

Feel free to pm me if you need more info. Good luck :)
I know this thread is old, but I'm wondering how you're doing now? Also, what types of rocks were picking up? I've been researching different types of rocks. Nobel Serpintine blocks EMF. If you look at alot of the old buildings they are built with stone and have this Nobel serpentine stone meshed into the outer rock of these old houses. I believe the bunkers they were making plutonium in were also housed in this stone. Look up Nathan Reynolds on YouTube or Rumble. I was mind blown! Anyway, I truly pray that you are still recovered and your story gives me hope!
 

Wishful

Senior Member
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Nobel Serpintine blocks EMF
So does any conductor, such as metal, and does it more effectively than rocks with slight conductivity or magnetic effects. People living in houses with aluminum siding would be even better protected, yet we don't hear stories about the healing effects of aluminum siding. Rocks, especially with fancy names, are just more mysterious, and thus open for superstition.
 

overtrain

Medical Mafia needs to die via this virus.
Yearly update. I'm still here 🍀, & pretty much nothing has changed except less sensitivity to light. 5'4 I figured out, after measuring for first time in a long time, so aging is kicking in. Best hours remain late night into the next day, each night a struggle to get to bed because I finally start feeling normal, it's quiet out, all that. Whether or not EBV got reactivated, I have no idea, but blood tests doctor wanted to do all came back within range, as did pee test. He wants to do further testing which I'm so not up for, so won't be partaking in unless I'm at death's door. Even then, I'm not up for intervention I don't think. After my ME/CFS experience I simply have zero faith in anything medical, & even just *thinking about it* can put me in a vitriolic rage.

I think it boils down to stress, genetics, plus a lot of daily activity along with eating well and a LOT less than people usually do, plus when I eat, it's plant-based. Holding around 100lbs, give or take. So life continues on. Apparently what I have in addition to this is ET, or Essential Tremor. It is what it is. I've learned to live with it when it comes a few times per day. I can also make it stop immediately by tilting my head up toward the sky, like I'm looking up. It's a very temporary fix but comes in handy, say, in the grocery checkout line. So that's all the news that's fit to print this year, will be back next. My thoughts are very much with everyone suffering from ME/CFS, & we've GOT to be closer than ever now to some answers. There's no words in any language than can adequately describe the illness to anyone who hasn't been there. Take care
 

dannybex

Senior Member
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Seattle
I think it boils down to stress, genetics, plus a lot of daily activity along with eating well and a LOT less than people usually do, plus when I eat, it's plant-based. Holding around 100lbs, give or take. So life continues on. Apparently what I have in addition to this is ET, or Essential Tremor. It is what it is. I've learned to live with it when it comes a few times per day. I can also make it stop immediately by tilting my head up toward the sky, like I'm looking up. It's a very temporary fix but comes in handy, say, in the grocery checkout line.

Thiamine has been used quite successfully for essential tremor:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5884259/

Same w/B12:

https://pubmed.ncbi.nlm.nih.gov/24852503/
 

overtrain

Medical Mafia needs to die via this virus.
Hi, I'm clocking back in 6 months early because I found something that helps. I know, I know. Everytime you read something like this it makes you want to scream & throw something against the wall. Believe me, I've been there. I'm still there. When I read a post about some supposed miracle cure I roll my eyes & scroll on. God knows this community has run the gamut from bizarre stratosphere magnets to mud. Whatever.

Well, it's not a miracle cure. It's like 28 bucks on Amazon. I've taken a variety of vitamins for over 50 years, so I can tell when one is beneficial, & when to skip one. Before I got sick, I'd notice some vitamins & herbs seemed to help, impact my health in some minor positive way. Evening Primrose capsules, Flax Oil, whatever. There's a lot out there that I notice nothing after taking, too. I don't take much of anything anymore. It's expensive. I wish I'd discovered this when I was so profoundly ill over a decade back. Will I hit that plateau we're all so familiar with? Maybe, maybe not. This vitamin helped me within HOURS of taking it the first day. Will I get to where I can't tell the difference anymore, then stop taking, then restart? Who knows what'll happen.
Live in the moment, baby.

But with MTHFR + MTRR gene mutation(s), I finally! Got around to trying at least *something* for it after rdg a Twitter thread last fall. I'd be out $30 if it was a flop. I'm a gambler 😆. It's a methylated multivitamin by a brand called "Power by Naturals." Vegan, without Iron. You take just one per day. I'll take a photo of ingredients & hopefully it will attach to this post.

If you do try this, do NOT take one at night. Don't even take it in the afternoon 😄 unless you're interested in staying awake all night. It has a subtle but powerful effect I can't describe, but I know it's really helping. I have more stamina. I'm up to almost 105lbs. I have zero clue what's contained in this that's being beneficial, or if my body was lacking one or more nutrients. I doubt that, as I have an excellent diet, though I'll admit I don't get enough food in. And I don't know why just a little powder in these gel caps can have such an effect, but who cares, it does. It's likely tied to the gene mutation why it's helping.

I've also tripled my Bragg's Nutritional Yeast, & begun taking Hawthorn Berry for my Essential Tremor. Those, too, are helping. I'm shaking a whole lot less THANK GOD. This is a separate health issue, but am writing about it in case any of you want to try something new. You start feeling desperate when you have trouble feeding yourself & don't want to go out in public because you feel like such a freak.

So hopefully this helps one of you out there, & I'll see you in July, good lord willin' & the crick don't rise. Stay warm, keep the faith. --Ok, I can't attach pics. Yeah, Amazon. Good luck
 

Mary

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@overtrain - I thought your B12 might be in the toilet because you've been vegan for so many years, and B12 deficiency can cause tremors.

A lot of us here on PR have MTHR gene issues. I started taking methylfolate in 2010 and had an immediate boost in energy, really nice, followed quickly by severe fatigue - it caused my potassium to tank (refeeding syndrome) because it increased my need for potassium as my body started to work better, causing a functional potassium deficiency. (this thread explains more about potassium and methylation: https://forums.phoenixrising.me/thr...ded-in-methylation-treatmt.18670/#post-283712

I've also been taking methylcobalamin forever as well as all of the other B's.

I'm glad the Power by Naturals is helping you so much! I've found this to be a good B complex and it's cheaper than the Power by Naturals: https://www.iherb.com/pr/life-extension-bioactive-complete-b-complex-60-vegetarian-capsules/67051 - you'd have to compare them to see if it might work for you.

Anyways, I'm glad to see you checking in here with some good news!
 

Wayne

Senior Member
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4,772
Location
Ashland, Oregon
Thiamine has been used quite successfully for essential tremor:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5884259/
Summary:
Essential tremor (ET) is a common neurological condition typically treated with propranolol, primidone, and other medications, which often have limited efficacy and notable side effects. This study reports that two patients with ET showed remarkable, sustained improvement in tremor symptoms following intramuscular injections of high-dose thiamine (vitamin B1). The treatment improved both patients’ functional abilities and tremor severity by over 60%, with no side effects observed even after 3 years of continued therapy.

The underlying rationale is that ET may involve glucose hypometabolism in certain brain areas (cerebellar-thalamic-cortical circuits), potentially due to dysfunction in thiamine-dependent processes. High-dose thiamine may restore these processes by bypassing impaired cellular transport. One patient was also taking metformin, which is known to inhibit thiamine transport and may have contributed to a functional thiamine deficiency.

The authors suggest that high-dose thiamine injections could be a safe, effective, and affordable alternative treatment for ET, meriting further research. They emphasize the possibility of lifelong treatment and highlight the need to investigate intracellular thiamine metabolism in ET.
 
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