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Cured Myself After 4 Years of CFS

Adlyfrost

Senior Member
Messages
251
Location
NJ
@xks201 said:
I don't believe a majority of CFS cases are simply viruses. If they are all viruses then they would all respond to anti virals but I see very few people benefit long term from pharmaceutical anti viral meds.

There are to date no anti-viral meds that target enteroviruses that live in the stomach tissues. People are using the wrong drugs for the wrong virus with varying degrees of success because that is all they have right now.

However, you have me intrigued about your therapeutic doses of co-enzymated vitamins taken separately. I do believe my over fertilized gut could have been over-synthesizing B vitamins and I know piling on vitamins can make me worse. But taking just what I need is different- I think the methylation protocol is similar. I thought about trying that too but it seemed like a shot in the dark, and I couldn't find anybody with CFS who was actually cured with it.

You will notice people on this forum are careful where they put their energy because a lot of us can't work, haven't been able to work for a long time and can't afford to spend money and energy on a shot in the dark (because as someone else said, many of us have spent thousands, some even hundreds of thousands of dollars already).

We all know and agree that hormones and metabolism are a huge part of this mess, but it will take some convincing for most to start playing with those things, esp. if they believe like I do, all these problems are caused by viruses or an autoimmune response related to viruses.

Before you publish your ebook, may I suggest you look deeper into the viral theories of CFS, if anything, just to make a better argument about what you believe. I will read about your theories because now that I have a protocol that works at ridding me of my viral symptoms, I want to work torward getting vibrantly healthy again. Getting my hormones to work is of keen interest to me because I am always exhausted and want to have the energy to go back to work full-time someday.

However, like everything else, I have to proceed with caution, careful not to mess up the progress I have made with my current protocol. I know what works for my CFS (viral symptoms)- the question is how can I improve my regular health (mood, energy, etc.) without bringing the viral symptoms back.

Experience has shown me that exercise and throwing nutrients at the problem are not the answer. Improving cold weather and sun tolerance and reducing autoimmune responses to food and overstimulating immune system would be helpful because these things often precipitate viral attacks and my tools at controlling them are very limited.

However, I reject the claim that my CFS is caused by anything but a virus/autoimmune response. If the shoe fits...
 
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Adlyfrost

Senior Member
Messages
251
Location
NJ
The studies you posted @xks201 have me convinced that another go at b vitamins is at least worth a try- esp. in the summer when, if I do accidentally over-fertilize my gut and bring back the virus, I can more easily recover than if I tried and failed in the winter.

I am going to be purchasing some of the single doses of b-vitamins you listed: P5P, bentothiamine, Rib. 5 phos., biotin, folinic acid but maybe not niacin since I get adverse reactions in addition to flushes with that. Glutathione powder also sounds good.

I can't afford to be tested right now. If I become convinced it would be to my benefit and that there are supplements I could take for hormones and other things that would not screw me up with an autoimmune response, perhaps I will consider it.

I am on the fense about vitamin D- I have extreme sun sensitivity and I don't know if vitamin d is a factor in that or not. Some protocols eliminate it because it promotes the synthesizing of biofilms, if I understand correctly. I have never heard of anyone with CFS/ME getting better with it. But I am willing to try again- but only because my bone broth regimen has been sooooo successful!

I am in a good place right now to experiment. But only because I stopped taking vitamins and eating lots of nutrients. I am all about improving gut function and this research is interesting- not because of the studies but because there is at least one person who claims to have has CFS who benefitted.

I am inclined to believe your CFS because when I was young I just had CFS and it was devastating, but not as severe as when I was older. The ME symptoms develop gradually and after horrible flus. Everyone is different.

I will post back my results when I know something. In the past B vitamins helped with feelings of weakness, bladder infections and cervical dysplasia but did nothing for enteroviral symptoms or made them worse. If my virus was not in a fragile remission like it is now I would not entertain such an idea. But then I never took high individual doses before either.

I blew off methylation protocol because I was like," baloney- mostly just B vitamins"- been there, done that. But I am not satisfied with just not having flu symptoms- want to get back to a healthy energy level and eat solid foods and fruit someday.

Anything you can suggest to start improving gut function and metabolism with these B vitamins is much appreciated.
 
Messages
59
Hi there @xks201

I was inspired by your recovery from CFS and have just joined the board because of some threads including this one, i was wondering if you could help me (i have my own thread over in "introduce yourself" part of forum) but could give some details here about my situation if you can spare a minute, i need a little direction in what to do next.

I have had CFS for 3 years going on 4, hoping one day i can make a breakthrough in curing it as it has affected many different areas of my life. I have had some blood work done and it seems in my case the only immediate issues i could find was low cortisol levels through the saliva tests (thyroid was fine), i also noticed i have low vitamin d levels (switching between deficient and insufficient). I did not find much else other than my B12 levels being around 300 odd and my sex hormones being in the lower range of normal. Someone advised me in taking B12 supplements.

So i guess my question is what blood work should i be chasing and which supplements helped in your own individual situation?

I am going to read the whole thread here now to see if i can pick up some ideas on which direction to take as i noticed you told people to get neurotransmitter levels checked and some other things.

If you need to know anything else such as my symptoms or other blood work results i will be happy to post them.

I also noticed you spent much money on research of this topic and are now sharing it which is admirable, it makes me wonder if you have some kind of idea of what biological functions might be causing CFS to stay in its constant state. I am still trying to get a diagnosis even today.

Thanks for your time if you choose to get back to me.
 
Messages
76
I have seen this kind of claim before. I reviewed (privately) a book like you are describing in the 90s, though the postulated cause was different. It suffered from logical and biochemical flaws. I too have spent that kind of money - actually much much more than you, so does that mean I am a better expert than you? That is not a rational claim. I too have an appropriate background - so what, many of us do. When I came up with my first model of CFS I released it free of charge to the world, even though that cost money (I travelled to the 1999 CFS conference in Sydney at a cost of about $2000). I gave the information away for free. I am writing a book on medico-political issues around ME, and I plan to release that for free if I ever finish.

I have seen many who recover from CFS, but most had a limited range of symptoms. True recovery is uncommon. Claims of recovery are however very common, but for some reason I keep hearing them in relation to a commercial product. Later on its discovered the product didn't work as advertised, what a surprise. We have limited resources, and we are skeptical of miracle claims for good reasons.Are you planning on starting any clinical trials? That would be useful.

You got your info off pubmed? Do you mean abstracts? I hope not. You can never trust abstracts, you have to read the paper.

Bye, Alex

Hello,

Could you describe what helped to those who have been cured or partially cured? :)

Thank you