This is an ongoing/under-construction page for me to track the things I’ve tried and what has helped or not…
Current supplement and diet program:
2,000mg Acetyl L carnitine (1,000mg 2/day)
1,200-1,250mg Alpha Lipoic Acid (400mg 3/day)
4,000mg Borage Oil (960mg GLA) (2,000mg 2/day)
10,000iu Vitamin A
2,000mg fish oil (1,000mg EPA, 50mg DHA)
Vitamin B-complex (Thorne #12)
400mg magnesium glycinate
400mg riboflavin/B2 (200mg 2/day)
4,000iu Vitamin D
324mg Ferrous Gluconate sometimes
200iu Vitamin E sometimes
15mg zinc sometimes
500mg vitamin C sometimes
thyroid hormones (T3 and T4)
2x tsp fiber
1mg Melatonin (sometimes)
2 tbs tart cherry juice concentrate
NO grains (except GF oats)
cut down on fatty meat
cut down on sugar
decaf green tea
Other treatments I have tried:
Gabapentin (weight gain (about 5lbs in 2 weeks), swelling, shaking, vision changes, nightmares, drugged feeling, heartburn, vertigo, constipation, pain in kidneys?)
Low-dose naltrexone (stopped sleeping)
norco (allergic ~ can’t breathe)
solpadeine (allergic ~ can’t breathe)
solpadol (allergic ~ can’t breathe)
Alpha Lipoic Acid
calcium citrate (worst headache of my life)
cannabis (bad for lungs)
benadryl (12.5ml ~ headache next day)
epsom salt baths
acupuncture (not doing anything after 6 months)
birth control pill (loss of libido, daily headache (?), positive effects on skin, mood, period)
light box (very bad pain in right eye)
Tart cherry juice
dust mite detergent
dust mite duvet
dust mite mattress and pillow covers
thermometer and humidity monitor
activity log tracker
SOMA physical therapy
Your list is as long as mine! This illness is all about trial and error isn’t it? Have you tried D-Ribose? It’s a naturally occurring sugar in our blood that works on the energy chain. I’ve been taking a daily supplement of it for last month or so and seen an improvement in my energy. Just thought I’d mention it as didnt see it on your list (tho I may have missed it!)
I haven’t tried D-Ribose yet. I keep bringing it up to my doctor, but she doesn’t think it’s the time or doesn’t know much about it or something. I’m trying to stick with her and I’m about to start Chinese herbs, so maybe D-Ribose will have to wait a few more months. Thanks for the reply ~ did you notice there are only a few Rx drugs? Am I the only one with this disease who is spending years not trying drugs to help my symptoms?!
Drugs won’t help the cause(s) of your illness, they’ll only suppress the symptoms, and temporarily at that. Sometimes they’re necessary, but as you saw with Gabapentin for example, they typically just fight something your body’s trying to work out.
I’m curious about two things: The high-dose alpha lipoic acid, and no mention of any methyl-b12, hydroxy-b12 or adenosyl-b12. I know that some have no problem, and in fact a lot of benefit from ALA, even in high doses, but then there’s Andrew Cutler, who argues it strongly chelates heavy metals, so it must be taken at very low doses every few hours to minimize what he calls ‘redistribution’. Maybe you’ve heard of him? If not, a google search will turn up tons of info.
And while many have issues with b12 and the various ‘active’ folates, (and I did as well), if one starts with microscopic doses and very slowly raises them, they can help with low blood volume, circulation, detoxification, etc.
Lastly, some have seen crazy-remarkable improvements with the sublingual co-enzymated form of thiamine — b1. It sounds ridiculously way too simple, but there are a lot of ‘antihiamine’ compounds in foods and the environment, so taking this has helped some people to a surprising extent. Severe thiamine deficiency can sometimes almost equal ‘classic’ ME symptoms, especially heart/circulation and nervous symptom dysfunction.
Wow. I kinda wish I had this to hand for when people come up to me saying, ‘have you tried x?’, assuming it’s going to be a miracle cure…
Looks like mine! I didn’t have as many bad reactions to Neurontin as you did, but I wouldn’t mind losing it at some point, because it DOES make me feel sluggish and drugged. Unfortunately, if I skip it for more than a day I get burning pain. I like Xyzal better than Zyrtec, but they are pretty similar. I started HistDAO, methylfolate and methyl B-12 recently, and they seem helpful, or at least I am not having any bad effects. Then again, I am crap at keeping track of symptoms. Acupuncture is helping me a lot now, but I switched practitioners three times. Sometimes they do the wrong points. I think I have predominantly fibro, thyroid disease, and Lyme (and now my doctor is waffling on that), but two doctors said M.E. as well. I don’t know, honestly. I have just been all over the place medically for the last three-odd years, and I want my life back.
Sorry for always leaving such long comments. I really like your blog and your writing style, and I relate to you a lot, so I always feel very chatty after reading.
Good morning Elizabeth, I came across your blog which we have the same mutation and struggle with very similar symptoms. As of August 2014, I couldn’t find if there was something current or if you have found foods & a system that works for you? Thank you. Stefeni
Thanks Elizabeth, what foods have you found that are working more like a green with you?
I have lots of similar symptoms but not as severe as what you sound, and some common methylation mutations. Some ideas for you based on my experiences… I have noticed a massive increase in energy with b12 supplementation. I am homozygous for tcn2 mutation and hetero for mtrr. I have macrocytic anaemia on blood tests for past 10 or so years likely due to b12 deficiency. I take hydroxyb12. Methylb12 gives me huge energy surges but I cannot tolerate it due to anxiety and irritability (probably because of COMT). I’m going to try it at a much smaller dose soon. Another idea is to try phosphatidyl choline since you have PEMT mutation and this can also help CBS related problems. The other thing which has helped me a lot is N-acetyl cysteine (precursor to glutathione) which is essential for energy and deficiency has also been linked with autoimmune thyroid problems. Only issue is that it is high sulfur but I tolerate 1200mg slow release daily despite CBS etc.
Also, have you looked into glutamate in foods? I eventually identified glutamate as the main trigger to my migraines, sleep disturbance and anxiety after I got results of multiple GAD mutations. I am never eating any high glutamate foods again!!
Good luck. I hope you find some answers and good health.