Discussion in 'Fibromyalgia Main Forum' started by nitekitty, Feb 14, 2011.

  1. nitekitty

    nitekitty New Member


    Not sure if you'll remember me but I'm sushila's friend, the one with the only documented case of betaine (trimethylglycine) deficiency in the world. (Caused by a genetic flaw in both a choline transporter and choline dehydrogenase). This in turn causes my baseline homocysteine to be about 46. I also have fibromyalgia, POTS, and neurocardiogenic syncope.

    So far treatment which lowers the homocysteine causes my SAM-e to skyrocket into liver damaging levels. (It's as if the cycle somewhat stops at SAM-e and gets into a traffic jam). Until this can be resolved I'm interested in after-the-fact treatment, meaning okay so the homocysteine levels are raised and doing damage, so how can I fix the damage.

    (Oh, as a side note to treatments for fibro--- I tried Low Dose Naltrexone which actually elevated my homocysteine! That they can't figure out either. On a dose of 1.5mg it went from 46 to 65. and the more I raised the LDN the more the homocysteine went up. It's absolutely wild. and heartbreaking to a degree.)

    I'm interested in IV glutathione treatment as an after-the-fact treatment for the oxidative stress caused by the elevated homocysteine but I wanted to hear if you had heard of asthma patients doing poorly on it. And if you know of any research articles regarding IV glutathione treatment in general. I know I had read the inhaler version could sometimes cause a reaction in asthma patients (and many times that was just at the onset of treatment).

    My concern is I have a bunch of conflicting biochemistry things going on in my body. I could add Glutathione to lessen the oxidative stress caused by the homocysteine, but actually in turn cause enough disulphide bonds in my body I could get hives or asthma. I cannot eat food with disulphides, sulphides, and sulfites because they give me asthma. I get hives from sulfa drugs (I know, sulfites and sulfa drugs ssupposed to be totally "unrelated", but whatever).

    This is a huge thing for me. If I can turn around the oxidative stress I might be able to live with elevated homocysteine until they can come up with a solution for it. Otherwise day by day i up my chances of heart disease, stroke, and alzheimers. Not to mention I'm sure it worsens fibro and POTS symptoms.

    Currently we cannot find a way to lower the homocysteine without detrimentally elevating my SAM-e levels in to liver damage range. Until we can figure out that puzzle (and they're all stumped), I want to at least utilize some after the fact treatment.

    Vitamin C and folic acid are supposed to act as good antioxidants but I can't take either one regularly. The vitamin C causes urinary tract infections (and my urine is highly acidic as it is, promoting kidney stones) and folic acid in a very conoaluted way raises SAM-e in me (too long of a biochemistry story).

    Oh, and is there an online list of doctors who currently administer IV glutathione treatment? if so, where?

    Thanks so much.

    Best wishes,

  2. richvank

    richvank New Member

    Hi, nitekitty.

    Wow! Long time! Glad you're still kicking. TMG deficiency, huh? That's pretty wild.

    I get what you are trying to do. Not a lot of options for antioxidants if you can't use vitamin C, and disulfides are problematical, too. There's vitamin E, and beta carotene, coenzyme Q10, and alpha lipoic acid (which also has sulfur) Maybe you could do once-through antioxidants that aren't recycled, such as grape leaf extract or pycnogenol, or citrus bioflavonoids, or green tea antioxidants.

    I haven't heard of asthma patients doing poorly on IV glutathione, but I don't have much contact with asthma patients. I do know that nebulized glutathione can cause them problems. Dr. Clark Bishop of Provo, Utah emailed me some years ago concerning nebulized glutathione for treating cystic fibrosis, and he recommended using the sodium bicarbonate buffered glutathione from Theranaturals for nebulizing, to prevent bronchospasm.

    IV glutathione has been used by Dr. David Perlmutter for quite a few years for treating Parkinson's disease. He and coworkers published a paper on a pilot study of it recently, and the results weren't very striking.

    I think you could find doctors who do IV glutathione on the ACAM doctors list (American College for the Advancement of Medicine).

    I am kind of fascinated by your biochemistry. I don't understand why SAMe would go up. It sounds as though the metabolites in the methylation cycle are trapped in this cycle, and are not able to go down the transsulfuration pathway. Also, I wonder if your glycine N-methyl transferase is working properly. It's supposed to limit the ratio of SAMe to SAH by making sarcosine from glycine.

    I don't know what kind of testing you've had, but I think it would be really interesting to see the results of a Health Diagnostics and Research Institute methylation pathways panel on you, together with a Genova Diagnostics metabolic analysis profile (urine organic acids test panel) and Doctor's Data Lab plasma amino acids and urine amino acids panels. I think they would make it possible to help sort out what's happening.

    But no doubt you have some good minds working on this problem. It's good to hear from you again.

    Best regards,


    [This Message was Edited on 02/15/2011]
    [This Message was Edited on 02/15/2011]

[ advertisement ]