1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process
Gabby Klein gives an overview of the P2P process, shedding light on the pitfalls with advice as to what we can do in protest ...
Discuss the article on the Forums.

Methylation - hair loss

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by BiancaS, Jul 12, 2011.

  1. BiancaS

    BiancaS

    Messages:
    39
    Likes:
    3
    I am new to this blog and also quite new to this disease (unfortunately). I had an infection last December from an insect bite in Asia, which lead to treatment for presumed lymes disease due to quite heavy neurological symptoms and response I had to doxycycline.

    Blood results were not straight forward, but it has been decided to treat due to the severity of the neurological symptoms. I had one month of IV Rocephine, followed by 3 weeks of iv Aciclovir (due to high level of viruses in my blood , HSV, VZV, HHV6, EBV, etc), tough they could not determine which one was active or not (again, blood results were quite murky). This was followed by one month of minocycline and ciprofloxacine, which has ameliorated my symptoms (albeit mystery infection still there), unfortunately, this antibiotic treatment was followed by a huge bout of heavy fatigue.

    Could barely move, let alone get out of bed. Luckily for me, I found treatment from a naturopath who specialises on CFS and EBV pretty much the same week and he ran various test and put me straight on an iv regimen with high doses of vitamins etc, plus oral regimen inbetween ivs (2x week)

    My lab results showed low NK killer cells, low NK cell activity, low CD 57 (41), reduced ATP, reduced intracellular glutathione in my immune cells, reduced oxidative burst, nitrostative stress with peroxinitrite (but acceptable citrulin and MMA), neurotransmitter imbalances (increased Adrenaline, increased Dopamine, increased GABA, increased Glutamate, increased DHEA and reduced cortisol profile).

    Huge gut dysbiosis. No food intolerance so far. Thyroid goes into hypothyroidism and back, positive Anti-Tg Ab.

    Metal toxicity test after provocation with EDTA and DMSA revealed high levels of aluminium, plumb, cadmium and only low levels of mercury.

    As far as viral load is concerned, an lymphocyte transformation test (LTT) revealed high level of EBV, followed by HHV6, HSV, VZV. Coxacie antibodies positive on IgG, nothing on IgM. Bacterial load on LTT is staph/strep (highest of all exposures). IgG for Ehrlichia and Bartonella positive, no IgM, Lyme negative on elisa, blot or LTT. Sent blood to Igenex for PcR.

    So far my supplementation regimen consists of the following:
    IV 2x week, including 7,5g Vitamine C, 3000ng Hydroxycolbalamine, B vitamine complexe, foloc acid, 600mg Glutathion, Inzolene, 300mg Alpha Liponic Acid, Taurine 1g, L-Lysine 2g

    Orally, I take daily 800mg of magnesium, 600g of zink, 300ng of selenium, Omega 3-6-9 acid, Vitamin B 100 complex (including 400ng of folic acid), CQ10, Vit A, E, D, glutamine, NAC, glycine, n-acetlylglutathione, l-lysine with beta glucane and other herbal supplements (cats claw, artemisinine, etc., curcuma complex with 900ng of molybdaenum). Additional Vit B5 and cytozyme for adrenal support. 5-HTP supplements for serotonine

    Ater approx two months of treatment, I am feeling generally better, the glutathione and alpha liponic acid are helping me a lot to detox, moving around and even biking for a few miles. Still feel the tiredness though and brain fog....I have a few good days, followed by a few bad days and so on. Symptoms of initial infection still there though.

    Now my questions: Since I started on the methylation protocol, my hair is falling out like crazy. My gut feel is that it has something to do with ammonia and sulphites and probably a disturbed CBS gene. Recent blood results showed the following:
    No more peroxonitrite, huge levels of B12, but MMA higher then previously. This would mean a methyliation block I assume?
    Strong increased levels of glutamate 432nmol/g (ref 117-262). This is mainly derived from high glutamine levels. 414nmol/g. I read somewhere that ammonia is converted to glutamine, by way of the glutamine synthetase pathways.
    Despite high levels of molybdenum supplement (900nmol/g), I still have a deficiency in blood (0,6ng/l (ref 1,0ng/l-10,0ng/l).
    Vitamin B6 in blood is within the reference range
    MCV is elevated 98fl/nl (ref 80-96). Does that mean I have a folic acid deficiency, or do I need to use the methylfolate insead of the folic acid? Blood levels for folic acid were within range (23,7ng/ml) ref is over 5.3

    Borderline positive for HPU

    Other notable results: homocysteine in plasma level is mid-range 5,1 nmol/l (ref <10), low erythrocytes (below range), low vit K. TSH at 1,98.

    Before the end of last year, I was healthy. I am 34 years old, live now alcohol, smoke, coffeine, sugar free. Try to eat a balanced diet with no gluten at the moment. Meat roughly 4 times per week (lean chicken or lean steak), cooked vegetable, potatoes, rice.

    I have now ordered the HH genetic test, to see where I might have any gene methyliation problems and am also considering the NutraEval test. Aminoacid in blood test in on its way and results should be here in a week, but I am keen to stop the hair loss urgently.

    Any ideas? Thanks.

    PS, does anybody know a practitioner in Germany or Switzerland who works with Genova Diagnostics? The don't want to send me a test kit, unless I am going via a practitioner who is registered with them.
     
  2. Freddd

    Freddd Senior Member

    Messages:
    4,544
    Likes:
    913
    Salt Lake City
    HI BiancaS,

    Hair loss can be caused by any number of things. One of them is methylation/cell-formation SHUTDOWN. That is why cancer treatments can cause hair loss, the cells don't keep making hair and it falls out.

    Depending upon your responses glutathione and/or folic-folinic acid can also do it.

    Male pattern baldness can be put on hold for decades with mb12/methylfolate deficiencies as testosterone levels can fall through the floor. When hormone levels come back up male pattern baldness can start up again.

    3000ng of Hydroxcbl is only 3 mcg, not nearly enough. You would likely do much better with some mgs of methylb12 and adb12 daily as well as Metafolin instead of folic/folinic acid.
     
  3. BiancaS

    BiancaS

    Messages:
    39
    Likes:
    3

    Thanks Freddd,

    Well, my B12 blood levels ended up somewhere around 22,500. The lab tripplechecked. Ref ranges are around 200-500 or something. Nevertheless, MMA increased over two months and I got the advise to supplement B12. Clearly, the B12 I took (Hdxcbl) is either not doing enough or not being converted quickly enough or something else is hijacking my B12 (like glutathione).
    Will order the Mcbl and adcbl and follow your protocol. Given the B12 level I currently have, what dose would you suggest and would you start with both at the same time?

    Same with 5-MTHF (ordered it already). I guess I need to start slow?

    Will see how that goes and then decide on the glutathione. So far, the iv protocol got me out of bed and returned some energy, so it is working on some level. Not taking the NAC anymore, but going straight to s-acetyl glutathione for oral regimen.

    Regarding sulfur, I read that people with HPU have some problems with sulfites, etc. Wonder where all my molybdaenum is going to and I still run a deficiency. Will up the dose by another 1g and see how it goes.

    Regarding Ammonia, I read on this blog that there is a possibiliy of a CBS enzyme polymorphism (still to be checked for me), which send the methylation towards taurine rather then glutathione. Given my increasing Glutamate levels, I assume this has something to do with ammonia. If this should be the case, what is the most effective way of lowering ammonia levels?

    Btw, my SAMe levels were normal in blood, so I guess some methylation must be going on (or do I have that all wrong?)
     
  4. Freddd

    Freddd Senior Member

    Messages:
    4,544
    Likes:
    913
    Salt Lake City
    Hi BiancaS,

    Make sure you order the correct brands, Jarrow Mb12 5mg and/or Enzymatic Therapy 1mg. Also, Source Naturals dibencozide which considering the folic acid in the Country Life is probably a better choice for many at this time. In Japan, the LOW limit is 550pg/ml. It would probably take a level of 6000 for most people to be asymptomatic.

    The problem with hydroxycbl is that only very little of it converts to the two active forms. The mb12 and adb12 are 100 to 10,000 times more effective. With a folate deficiency no amount of b12 of any kind can do much. The usual serum cobalamin range is about 170-1100. I have estimated mine at over 200,000.

    I would start with one tablet of each. but increasing only the mb12 up to 25mg in a day holding each tablet or set of tablets for 2 hours under the lip and tongue. Please understand cobalamin level. It will typically drop from the 22,500 you had to 1500 in a few days. A 1 mg injection can raise it to 200,000 in an hour and the next day it can be down to 2000. After a couple of weeks, including the Metafolin and then adding the l-carnitine fumarate on top of all the basics, ie POTASSIUM, magnesium, calcium, zinc, A, D, E, C, b-complex without folic acid or folinic acid twice a day and everything is stable then you can try a CNS penetrating dose of each mb12 and adb12 on successive days.

    Will see how that goes and then decide on the glutathione. So far, the iv protocol got me out of bed and returned some energy, so it is working on some level. Not taking the NAC anymore, but going straight to s-acetyl glutathione for oral regimen.


    This can completely disable mb12, adb12 and methylfolate and cause severe deficiencies. You need to stop this to let the mb12, adb12 and Metafolin to work. They will generate glutathione to a safe level.
     
  5. BiancaS

    BiancaS

    Messages:
    39
    Likes:
    3
    Thanks Freddd, will follow your guidance. Btw, in the GErman forum, the aktive form of B2 (riboflavin-5-phosphate) is recomended to generate Glutathione. Have you heard of that?
     
  6. Nina

    Nina Senior Member

    Messages:
    220
    Likes:
    14
    Hi from Germany, Bianca!

    I'm not a methylation expert by any means but have been on the Yasko protocol for quite some time (so far without much success). I had problems with hair loss ever since I got sick (just lots of hair falling out but not really getting thinner). This improved greatly when I introduced 10mg of Biotin per day. As far as I can tell your regimen doesn't include that, maybe worth a shot?

    It will take a couple of weeks before you notice any improvement.

    Freddd, could you maybe elaborate more on how gluthatione supplementation can disable the B12s and folates?

    Thanks,
    Nina
     
  7. BiancaS

    BiancaS

    Messages:
    39
    Likes:
    3
    Hey, thanks. Am taking 100mg of Biotn as well, unfortunately, so this cannot be the caus. Blood levels on that also look good. Vit K is low, not sure if I need supplements on that.

    Will order the supplements that Freddd suggested and will give it a go. Until they arrive, I will get them as injections from the Arnica Pharmacy in Munich and start supplementing. the 5-MTHf should arrive any day now hopefully.

    Found a doctor who is a distributor for NutrEval in Germany. Will call him and he should be able to help (hopefully.........) I must say, dealing with doctors in Germany is a highly frustrating undertaking.
     
  8. Nina

    Nina Senior Member

    Messages:
    220
    Likes:
    14
    Good luck ordering at iHerb, I tried 3 times, never made it through customs...

    Are you sure you're taking 100 mg Biotin? Most supplements contain only a couple of hundred mcg.

    When it comes to orthomolecular medicine, I gave up on doctors long ago. At best, they have a very basic knowledge that is nowhere near sufficient to treat multisystem illness.
     
  9. BiancaS

    BiancaS

    Messages:
    39
    Likes:
    3
    well, my naturopath is supposed to be an expert in CFS, but nevertheless, I had a row with him today on he topic. He thinks, another form of Cbl or Folate is not going to help me in any way. Well, the 5-MTHF arrived today and I just started it. It's from Thorne.
    Will see how iherb goes, but I know customs here is very difficult and I on't quite understand that, given that it is just vitamins. I have resorted to ordering all things from within the EU, so no problems there. Will look if the same brand can be found somewhere in Europe. Alternatively, it still leaves me with the Munich pharmacy who sells both forms of acive B12.
     
  10. rydra_wong

    rydra_wong Guest

    Messages:
    514
    Likes:
    31
    Bianca, you said you had a thyroid antibody - I am not an expert at thyroid problems, and your TSH looks good, but with antibodies, your T3 must be jumping around. If it jumps HIGH, hyperthryoid causes hair loss. You can CAUSE hyperthyroid with molybdenum because it is well known to prevent copper absorption. So I would research a bit the accuracy of serum molybdenum levels (many things cannot be measured meaningfully in serum) and I would also consider that molybdenum is affecting my absorption and say - take it separetly from any multi vitamins I was taking (whether by iv or pill).

    You made comments in other posts about sudden weight loss and carnitine being helpful - these will both be true in hyperthyroid. You can find out more about this and about mineral balance for the thyroid at www.ithyroid.com. Just for energy or for protecting muscle mass in the case of hyperthyroid wasting, you can take quite a lot of carnitine. Velha treats her CFS with a large dose of carnitine (which you could do while you are getting your methylation right) because she never could make enough through methylation...but supplement it big time - I dont remember - maybe 5-15 pills a day - enabled her to go back to work and get on with her life. Enough carnitine can totally prevent the muscle wasting in hyperthyroid. Also be aware that estrogen increases the half life of copper, so after menopause it is common to lose copper status.

    As Freddd said, the only other things to cause hair loss that I know of is insufficient B vitamins.

    However www.lef.org has info on baldness that indicates free radicals play a role and anti-oxidants play a role in protecting against it.

    All my sisters started losing hair at menopause due to less estrogen thus less copper. For them, it was self-limiting. Some people adjust their diets for example to include different nutrients to meet menopause - so for example eating more copper-containing chocolat, etc.
     
  11. Freddd

    Freddd Senior Member

    Messages:
    4,544
    Likes:
    913
    Salt Lake City
    Hi Nina,

    Somehow I missed this before. So in case you haven't come across the answer as best Rich and I can put it together here it is. I think we agree pretty much on what hypotheically is occurring but not the meaning and some details.

    First glutathione combines directly with mb12 and adb12 into glutathionylcobalamin. I would be inclined to add "probably the free unbound mb12 and adb12".

    And maybe:
    Some people can't recovert glutathionylcobalamin back to the active forms (agreement) and I would be inclined to say "back to active forms in adequate amounts". Or maybe with overwhelming amounts of glutathione the glutathione can reconvert it to glutathioneylcbl over and over until methylation capacity is exhausted or the required enzyme is exhausted or ATP is exhausted.

    The mb12 deficiency symptoms start showing up in a week or so and build from there.

    Adb12 deficiency symptoms start becoming visible in week 4-6

    With the active mb12 not available in the cells of the DNA transactions in cell division the methylfolate is then flushed out of the cells via ther "methyl-trap" which I had read of and Rich identified as likely the mechanism. The fastest showing symptoms of methylfolate deficiency are cell reproduction in the epithelium and inflammatory and allergic responses. Inflammation is noticably increasing by hour 2. Possibly permanent neurological damage can manifest in 4 weeks or less becoming visible in multiple people of 10 by week 6. Within hours nerves that were in painful awareness which is a stage on the way to healing faded out considerably. This contunued changing until it was clearly damage in weeks 4-6.

    We agree that there are probably 3 groups as he proposed, wording is not the same but I intend it to be interpreted as his original wording.

    1- The ones for whom it is quickly a negative and worsens from there.
    2 - Those who start out with favorable response and go to negative and continue from there.
    3 - Those who start favorably or neutral effect and don't go negative.

    We disagree about what are likely reasons for categories 2 and 3. For instance a person who finds a medium sized dose of Metafolin, not titrated, unpleasant and maybe unbearable aborts the effect with glutathione and it ends much of the effects pretty quickly. It would also pretty quickly end the effects of free mb12 as my experience showed. Even a 10mg or 20mg mb12 injection had no effect at all when on glutathione. That was it's benefits. Glutathione can function as a methylfolate antagonist and as a flushing agent of most forms of free cobalamins including ab12 and mb12, much more rapidly excreted in the urine.

    I would expect that there is a dose and duration at which #3 folks become #2 folks. The negative effects are due to doing CNS and probably peripheral nervous system damage. One researcher I spoke with considers glutathione "in any form is too dangerous to take". Even if it is 33% at each of the 3 groups and 33% have no damage and even benefit that still leaves 66% who could undergo neurological damage up to and maybe especially Sub Acute Combined Degeneration. My opinion is that is similar to MS in most ways based on symptoms and damage done, and even causes as MS also shares low cerebral spinal fluid cobalamin with elevagted CSF HCY. This is playing Russion Roulette with neurological damage possible to your brain and spinal cord. If anybody had mentioned these risks I would NEVER have taken it. What odds would you be willing to take a go on. Not everybody is going to respond this extremely or exactly the same. There are gazzillions of possible combinations of symptoms which makes it so difficult to diagnose. I seem to have somehow come to be with a really screwed up set of genes as far as folate and b12 are concerned including whatever causes low CSF cobalamin in those with FMS/CFS. We all share so many smptoms.
     
  12. rydra_wong

    rydra_wong Guest

    Messages:
    514
    Likes:
    31
    BiancaS I have so many genes the same as you that I would be interested to hear what your doctor says if you ask him/her if you cant just eat a set amount of protein and measure serum ammonia to see if you need to lower it? I tried this with a 40g protein diet and also with an 80g protein diet and neither times did I have elevated serum ammonia. I have 17 genes in common with you - we differ only in that I have an ACE defect instead of the mthfr 677. For me, ammonia is not the issue. However I do take DHEA as hormone replacement and estrogen has been proven to protect against glutamate toxicity (which can be caused by ammonia stealing the magnesium gate of the NMDA receptor).

    Rydra
     
  13. rydra_wong

    rydra_wong Guest

    Messages:
    514
    Likes:
    31
    Nina, I recently found a very interesting paper on biotin -- it seems to ME that it might be of CRUCIAL importance in CFS because it appears to be the determining factor as to whether carbohydrate is processed anaerobically (leaving acidic lactate in the blood and producing only 2 ATPs), vs processing it via the aerobi Kreb cyle producing 36 ATPs (much more energy and no lactate).

    http://www.ncbi.nlm.nih.gov/pubmed/20798549
    I have an actual copy of the paper but dunno what website I got it from - the above is just the abstract.

    Rydra
     
  14. Nina

    Nina Senior Member

    Messages:
    220
    Likes:
    14
    Thanks for the explanation, Freddd. Coincidentally I've been coming back to find more info about methyl-trapping just this week after reading this article:

    http://www.alternativementalhealth.com/articles/walshMP.htm

    I find it extremely hard to know which supps are helpful in the long run and which ones do more harm than good for me. All I know is SAM-e and calcium seem to be great. Glutathione has helped in the past but I'm not sure what it does now. It may have been responsible for a recent crash.

    ADB12 does something but I can't reliably determine if good or bad. Folates are tricky and tiny amounts of any form (I cut out plain folate long ago) can make me crash. It seems for me a part of the problem seems to be histamine intolerance, but neither B12s + folates nor high amounts of SAM-e seem to help with that.


    Thanks Rydra, very interesting. Biotin is one of the few supps that really make a difference for me, although most noticeably on a cosmetic basis (hair and skin).
     
  15. Sparrow

    Sparrow Senior Member

    Messages:
    671
    Likes:
    770
    Canada
    I've had periods of bad hair loss too. ...Having one currently. Never determined for sure what was causing it, but I figure it's got to be a clue for something.

    I've been taking a reasonable dose of biotin, but my doctor felt that I still wasn't getting enough, so I'll be increasing that. If it helps, I'll try to let you know.

    I've also heard of certain hormone imbalances (too much estrogen, too much cortisol, etc.) causing hair loss. So maybe it's related to that?

    I'm interested to hear what others have to offer here...
     
  16. rydra_wong

    rydra_wong Guest

    Messages:
    514
    Likes:
    31
    Sparrow, hypothyroid is a wel known reason for hair loss, as is insufficient B vitamins. But you are addressing the B vitamins, have you checked your thyroid? (I mean not trusting the wide as a barn door lab ranges)? I posted about thyroid before from Life Extension...how even subclinical hypo causes raised cholesterol and hyper causes low cholesterol, etc. If you look at what values of TSH and FREE T3 are free of negative medical outcomes, that is a more useful range to target for thyroid. If I can find the link where I posted that, I'll put it here. Otherwise you can look up "thyroid blood test range" at www.lef.org

    Rydra
     
  17. Sparrow

    Sparrow Senior Member

    Messages:
    671
    Likes:
    770
    Canada
    Rydra,

    TSH has always come back under 2, though one doctor thought there might be some low grade hypothyroidism happening regardless, since my MCV and MCH were a bit elevated. Thanks for the info.
     
  18. Rockt

    Rockt Senior Member

    Messages:
    296
    Likes:
    13

    How much Biotin is recommended? I've lost a pile of my formerly thick, lustrous mane :) It's a price I'll gladly pay to get better... but I'm a long way from better... yet!
     
  19. rydra_wong

    rydra_wong Guest

    Messages:
    514
    Likes:
    31
    Do you know that if you have low ferritin your MCV is suppressed by that and correction of the ferritin to what it should be (70) often reveals folate deficiency by raised MCV? I quoted this somewhere here recently. There was a study but I dont have the reference now. I would think your MCV would be more related to methylation issues than thyroid.

    Under 2 is great for hypo, but what about hyper? I do not know what the cutoff is for that ...now that you mention it seems like I recently read something (just on an egroup) that subclinical hyper thyroid could be shown by something other than TSH (like MCV??) Although I recently read this I was skimming for something else and dont know if I could find it again...it is actually hyper that really makes you lose hair.
     
  20. greenshots

    greenshots Senior Member

    Messages:
    399
    Likes:
    139
    California
    I know exactly what you mean! I went through 26 with my son, 18 with my daughter, and finally got smarter when I crashed so only went through 4 before I stuck it out with the functional/nutrigenomics medical practitioner of a lifetime! As a former ICU nurse, I've seen my share of inept or plain cold & uncaring "specialists" and I vowed to stay away from anyone in conventional medicine. Strangely, from what I can tell so far, mine integrates functional, conventional, homeopathy, naturopathy, orthomolecular, & nutrigenomics and doesn't seem like anything I've ever seen before. I find it refreshing and sad that she also sees alot of conventional medicine physicians and their families so at least they know they don't hold ANY of the answers. Its just too bad for the rest of the world who trusts their "doctor's judgment" above all and have no clue that modern medicine is, at best, at least 10 to 20 years behind!

    Good luck finding the right one in Europe! maybe it won't be as bad as you think considering so many alternative theories came from German physicians.
    Angela



     

See more popular forum discussions.

Share This Page