Feeling normal - cfs conquered?

[Gandalf]

Hey! I thought I'd inform you about how I'm doing.
It's been ~3 months since I've been feeling normal now.

I did some serious physical labor (~6 hrs/day) the last two days and feel ok today. It's impossible to grasp how bad one can feel with cfs if one hasnt had it. After hours of physical work I dont even come close to the cfs feeling I used to have.

I'm thankful for every day and thankful for finding a treatment on the forum.
I wish you all also get better soon.

Mfg

 

[Soundthealarm21]

When you get a moment could you elaborate on what sort of a treatment you followed?

I'm very happy for you!

 

[joshi81]

yes i'm obviously also curious...which treatment???

 

[Esther12]

Good news Gandalf. Pleased to hear you've improved, and hope it continues.

 

[Gandalf]

I had weekly B12 shots a year ago(despite having normal b12 levels), which helped me improve a lot. As soon as the improvement stopped, I stopped the shots.
But I was still feeling better irreversibly. ( but still not anywhere near good)
After trying many supplements, I figured out, that potassium and vit D was doing it for me. (Again: was feeling better but not good)
And then I found out about methylfolate via the forum.
And that did it for me.

I tried taking away other supplements after taking MF, but I need all of them in order to feel normal.

I got a lab test back a week ago showing my low vit d and potassium.

Im also taking 5-HTP and alpha-gpc(choline source) atm but I havent tested enough to know if its doing anything for me, but ill take it till its empty and see if my cognition gets worse.

Here a list of my supps(Brand):
- 400mcg active folate (jarrow formulas quatrefolic / pure encap b-complex plus)
- 600mg potassiumchloride (kalinor retard p)
- 1000ie vit d (hevert)

- 300mg alpha-gpc (NOW)
- 100 mg 5-htp (zeinpharma)

 

[joshi81]

wow interesting.. so you are not taking anymore b12 .. do ypu know your genetic of MTHFR?
Can i ask you exacly which were your symproms? yhanks

 

[knackers323]

And could you tell us about your onset. Thanks

 

[Gandalf]

wow interesting.. so you are not taking anymore b12 .. do ypu know your genetic of MTHFR?
Can i ask you exacly which were your symproms? yhanks

The B-Complex I'm taking now includes B12, but I dont think its necessary.
I did 23andme but my saliva didnt yield sufficient DNA its in its 2nd round now.

I had many symtoms. I'll list the worst(not in order though):
- brain fog
- bad whole body feeling (feeling heavy, nerves feeling ill, feeling like I´m dying, exhaustion)
- muscle weakness
- orthostatic intolerance
- intolerance against histamine-releasing foods
- others

 

[Gandalf]

And could you tell us about your onset. Thanks

I cant exactly remember the onset. The change definitely took place in less than a month. But I dont know if the change took a week or days or if it was after I was sick.

All the sudden it was just there and I thought it would go away again, but it didnt go away.

 

[joshi81]

thanks gandalf had you any kind of muscle soreness? i mean a not once in a while but persistent? even if it was not pain but soreness

 

[Gandalf]

thanks gandalf had you any kind of muscle soreness? i mean a not once in a while but persistent? even if it was not pain but soreness

Yeah, the bad whole body feeling included it.

But its hard to exactly describe the awful body feeling I had. Maybe its like explaining red to a colorblind.

 

[Hanna]

That's great Gandalf ! By the way, could you tell us how long have you been sufffering from ME/CFS ?

 

[Gandalf]

~5-6 years

 

[*GG*]

And could you tell us about your onset. Thanks

@Gandalf I would like to know how your illness started? Sudden or gradual? Viral or ...?

GG

 

[SOC]

I wonder if there is a subset of ME/CFS patients with only methylation problems that can be almost entirely corrected with methylation-supporting supplements. I'm thinking that group might be distinct from one or more subsets with infectious agents (hhv6, ebv, Lyme, enteroviruses, etc). Possibly some (or most) PWME have both conditions.

I suppose I'm wondering why some of us have taken the same supplements as @Gandalf with some relatively small effect, while Gandalf and a few others have had a huge improvement with (relatively simple) methylation-type treatments.

Is there a difference in symptoms between these groups? Might it be possible to tease out a subset or two from this info?

Gandalf's success could be very encouraging to a subset of us (at least). If only we could figure out who fits into that subset. In a similar way, some PWME have had great success with antivirals, but how can we sort out for which of us they should work? It's a maddening, expensive, and time-consuming guessing game.

 

[Gandalf]

@SOC
Yes it would be cool to be able to identify this subset of people which responds good to methylation. I hope I will get my 23andme report soon. I'm sure it will give us good information.

I still cant believe how good I'm feeling. I was just out in a restaurant for a b-day party and Im feeling great.

In the meantime some of you are suffering in front of the computer, barely having enough power to type, barely able to write, barely able to think due to brain fog. This disease is a bitch.

If a had the possibility I would switch over to Medical education because its a shame so few docs (especially in germany) take this disease seriously.

 

[Sushi]

@SOC @Gandalf

Yes, I have taken more or less the same things with some improvement but certainly not major. I do have other intracellular infections and viruses though.

Sushi

 

[Gandalf]

I got my 23andme results today...methylation looks good.
But I found out something very relevant.

For a while I have a bump in the back-top of my throat and its usually infected.

My 23andme said I have an increased risk for: Nasopharynx cancer
The bump is perfectly in the right spot. Also it is strongly correlated with EBV.

EBV virus was found in my blood, but in a low amount.

Im very concerned right now. Especially because I told my doc about the thing years ago and he said thats nothing bad.

 

[knackers323]

I got my 23andme results today...methylation looks good.
But I found out something very relevant.

For a while I have a bump in the back-top of my throat and its usually infected.

My 23andme said I have an increased risk for: Nasopharynx cancer
The bump is perfectly in the right spot. Also it is strongly correlated with EBV.

EBV virus was found in my blood, but in a low amount.

Im very concerned right now. Especially because I told my doc about the thing years ago and he said thats nothing bad.

Can anyone explain why the test says his methylation is good but treating methylation has had such a big impact for him?

Tests are no good?
We don't fully understand things yet? Etc.

Also @Gandalf what form were the B12 shots and how long were you on them before they stopped having effect? Thanks

 

[Sushi]

Can anyone explain why the test says his methylation is good but treating methylation has had such a big impact for him?

Tests are no good?
We don't fully understand things yet? Etc.

Also @Gandalf what form were the B12 shots and how long were you on them before they stopped having effect? Thanks

Jumping in, sorry if this has been covered.

23andme is genetic--it doesn't measure the actual state of your methylation cycle and how it is functioning. It does show SNPs that could interfere with it. So Gandalf probably had methylation problems that were not caused by genetics.

This is just a guess!
Sushi