methylation: VERY low, very slow.....results

[determined]

I have kept my full time job for one year now.....there were some struggles, and I'm not sure how long I will be able to work full time, but I really love my job and the social contact it provides.

I am hanging in there. The methylation supplements really seem to have provided an ongoing help with weakness/fatigue, but my challenges are still chemical sensitivity and pain cycles. When I have pain, I must medicate, which makes the chemical sensitivity worse.

I still think of Rich often and am so thankful for his willingness to share his ideas with all of us!

 

[Little Bluestem]

Thank-you for taking the time to let us know how you are doing.

 

[Lotus97]

Hey Lotus,

Could you point me towards the thread where Rich talked about folinic acid helping with excitotoxicity?

Based on my research I think Rich was mistaken on that. He only posted about it once as far as I could tell. Since then, he posted multiple times about supplements helpful for excitotoxicity, but never mentioned folinic acid. The main reason Rich recommended folinic acid was due to it's role in creating nucleotides. This is from Rich:

Folinic acid is helpful for a couple of reasons. One is that it is very versatile, in that it can be converted to other forms of folate. Normally, folates are needed to make nucleotides, but the folate metabolism is dysfunctional in ME/CFS because of the partial block of methionine synthase and the methyl trap, which drains folate from the cells when this reaction is partially blocked. One of the main reasons for including folinic acid in the protocol is to help with the production of nucleotides until the folate metabolism has been restored. The nucleotides are important for making new DNA and RNA for new cells, and also for making ATP.

 

[determined]

I have now kept my full time job for 1 and one half years. It has been difficult to be sure and I am far from "cured," but I think the supplements have created a major shift in symptoms away from the weakness and fatigue that made full-time work impossible for so long.

I have never changed my approach with mB12 and methylfolate. I believe that, for me, the "almost homeopathic approach" has been a safe and effective one. Merry Christmas everyone and I wish you better health in 2015.

 

[juniemarie]

@determined I'm sure this gives many of us hope. So happy for you and thanks for posting this update.

 

[determined]

Hello everyone,
I wanted to stop by and report on my progress. I'm still working full time and I've been able to add exercise like never before. My job is very demanding, but hopefully it will get a bit easier in a semester or two.

I still have CFS. There are things that I can't do and wouldn't even try, like carrying heavy things uphill, for example. But I can do water aerobics several times a week, AFTER work!! And while I still consider myself to be chemically sensitive, I am teaching anatomy/physiology courses using cat dissections. Sometimes I can't believe it myself.

My biggest problem now is anxiety. I need to stop using caffeine and sugar and that should help.

While I don't have time to read up on everything you are learning, I want to stay connected.

I still use ridiculously tiny doses of mB12 and methyltetrahydrofolate twice a week or so.

 

[determined]

Hi all, I am going on year three of working full time. I can still exercise (okay in a water aerobics class with 70 year olds, but it's an hour long EXERCISE class!!!). I can also walk pretty fast and go for a few miles.

I still believe that the methylation supplements were the answer to my weakness/fatigue symptoms. I still have lots of other problems, but so far I am managing.

I want to check back more often. There is so much wisdom here!

 

[smileygirl]

Hi all, I am going on year three of working full time. I can still exercise (okay in a water aerobics class with 70 year olds, but it's an hour long EXERCISE class!!!). I can also walk pretty fast and go for a few miles.

I still believe that the methylation supplements were the answer to my weakness/fatigue symptoms. I still have lots of other problems, but so far I am managing.

I want to check back more often. There is so much wisdom here!

@determined

Have you continued with small doses of mb12 and folate? Have you added any co-factors? I'm starting @Freddd 's protocol and have reacted to adding the foundation pills! I haven't even started the b's yet. What brands are you using? I'm curious because I react to everything too.

Are you just drinking your dose now? You said you stopped the sublingual method.

Wish you all the best!

Jennifer

 

[determined]

Hi Jennifer,
Yes, I have stayed with the same, almost homeopathic, doses. And yes, I have added other vitamins as well, all in the same tiny doses. I use Thorne Methylcobalamin and Metagenics FolaPro.

I drink my dose, although my teeth stopped hurting a long time ago.

If you react to "everything" then it's all the more reason to go very slow. Good luck!

 

[determined]

Hello everyone, it has been 5 years of working full time. It's not easy, and I definitely don't have the stamina of a normal person. I work and come home and don't do much else. I am also fortunate that my job comes with LOTS of vacation....I get about 4 months off a year (assuming I don't teach in the summer) and I think that makes it possible, at least for now.

I still take my micro-doses of the supplements. I've never tried to increase the dose and I still believe they are effective.

During the second summer of water aerobics classes I was able to do when I first started the supplements (in which I worked pretty hard) I suddenly could no longer do it (just like the very onset of my weakness/fatigue way back in 1991, it was very sudden and very obvious).

However, I can still walk at a quick pace (for a few miles) as long as it is on flat surfaces, in an air conditioned place.

I've developed other manifestations of the disease such as Sjogren's syndrome with some pretty intense joint pain. This is a complicated disease and the supplements are not a "cure." But given Cort Johnson's new article about the higher percentage of problems with the MTHFR in CFS patients compared to normals, I though I'd check in. For me, there is very little else that rivals the effectiveness of these supplements.

 

[determined]

Update: I have completed 10 years of full time work. In addition to the methylation supplements, I found antihistamines (H1 and H2) to be very helpful.

Last summer I experienced a very significant relapse, though. I got sick about once a month and was tired all the time. In my fall semester of 23 I thought I would have to retire. I am still struggling this spring, but I changed my antihistamine and I think that has helped. I also brought back some "oldies but goodies" with my supplement regimen (evening primrose oil, amino acids, and turmeric). I also find that "preemptive rest" is critical to getting through the day.

Luckily, I have summers off and I'll have more time to work on my health. I hope everyone is doing well.