Halfway Recovered (B2,B5,B6,Nutragenomics)

[Mitomystery]

Lifelong - 25yrs - mild to moderate MECFS.

Brain-fog, Intermittent extreme fatigue brought about by many things, Sleep issues, Hearing distortions and sensitivities, pain, tingling and loss of feeling, migraines, chemical and food sensitivities etc...

20 years of blood tests showed nothing out of ordinary except slightly elevated RBC/Hemoglobin. Did a Organic Acids test a couple years ago. Showed Low B2,B5,B6, Dopamine, Serotonin, Epinephrine. Suggested methylation issues. Did a DNA test and put raw data through StrataGene. It showed lots of issues but 5 main polymorphisims stood out. MTRR, PEMT, CBS, MTNR1B, MTR. These polymorphisims each showed decrease ability to convert high levels of homocystine into less harmful products. Also had SOD, COMT, DOA, and a few others that showed poor ability to handle high oxidative stress.

Started taking B2,B5,B6 and using Hydrogen Inhalation therapy. Over a course of months to a year I noticed a slow increase in energy, elimination of migraines, return of feeling in certain parts, better mood, less sickness over all. I would say over the last 2 years I am 50-75 percent better than I was the previous 20 years. But Im not done and not yet were I would like to be.

I've tried methylated vitamins and they give me a big burst of energy, make my mood wonderful, and then I crash the next day. I have tried TMG/betine and it makes me feel good, but still my Homocystine Lvls hover just outside normal range. I think the increase RBC/Hemoglobin counts are from an increase in the need for Heme in the inpaired CBS function I have. I think I need to eat less protein. I have a sulfur test and am seeing if I suffer from sulfur intolerance.

I would like to try Methyline Blue at some point. I think I need to use more antioxidants to reduce my overall oxidant load. Im debating between trying astaxanthin or catalase next. I am open to suggustions and open to talk to others that might be starting down this route. Good luck to all

 

[Mary]

I've tried methylated vitamins and they give me a big burst of energy, make my mood wonderful, and then I crash the next day.

@Mitomystery - it's possible that the next day "crash" was actually your potassium tanking due to refeeding syndrome. This happened to me and has happened to many other people on this forum. Refeeding syndrome usually occurs in people who are malnourished - their electrolytes get way out of whack when missing nutrients are replaced, so it has to be done carefully. But for some reason many persons with ME/CFS are prone to refeeding syndrome reactions when taking B12 and methylfolate. B-1 also caused a very similar reaction for me, only B-1 depleted my phosphorous instead of potassium very quickly.

In each case I initially had a big burst of energy followed a day or 2 later by severe fatigue. I knew about the possibility of my potassium tanking when I started taking methylfolate due to member Freddd's many posts about methylation where he talks about refeeding syndrome and potassium. I had potassium on hand and when the severe fatigue hit after initial boost in energy, I started taking potassium, titrating up over a couple of days to 1000 mg. (in divided doses), which finally caused the fatigue to go away.

This post explains why potassium is important for ME/CFS patients when starting methylation: https://forums.phoenixrising.me/thr...ded-in-methylation-treatmt.18670/#post-283712

With B-1 something very similar happened. I didn't know at first what was causing that particular fatigue as potassium didn't help. Then I read that hypophosphatemia was the hallmark of refeeding syndrome so I drank several glasses of kefir (dairy is high in phosphorous) and sure enough, the fatigue started to dissipate. I eventually started taking a phosphorous supplement which I still have to take.

https://pmc.ncbi.nlm.nih.gov/articles/PMC2440847/

Refeeding syndrome can be defined as the potentially fatal shifts in fluids and electrolytes that may occur in malnourished patients receiving artificial refeeding (whether enterally or parenterally5). These shifts result from hormonal and metabolic changes and may cause serious clinical complications. The hallmark biochemical feature of refeeding syndrome is hypophosphataemia. However, the syndrome is complex and may also feature abnormal sodium and fluid balance; changes in glucose, protein, and fat metabolism; thiamine deficiency; hypokalaemia; and hypomagnesaemia

 

[linusbert]

^ what Mary said,

and for methylation you need all those cofactors requried in methylation, one is a methylgroup source, that is like choline (egg yolks) or methionine. and you need a buffer for methylgroups, thats glyCINE.
also closely related is acetylation, therefor you need a acetylgroup buffer or donator, that is casual l-carnitine or l-carnitine-fumarate as buffer for acetylgroups and for spending acetylgroups there is acetylcarnitine. one might tolerant one or the other depending if you are short or too much on aceteylgroups.
also closely related with all of those is B1 , as its required to make acetylcholine. so you can beat two flys if you use benfotiamine as its acetylated b1. BUUUUT , as you say you are intolerant to sulfur, acetylated vitamins might be a problem as they are bound to a sulfur group.
you might try molybdenum, it might help either way, 1 in your metabolism and 2 reducing sulfur producing microbiom in your guts or sulfur production in your microbiom (not sure what it was).
but for that matter check out Chris Masterjohns blog, he had a series lately speaking very detailled about sulfur intolerance or excess in sulfur and how to handle it.