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Methylation - hair loss

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

  1. Sparrow

    Sparrow Senior Member

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    I appreciate the info. I had assumed that it was probably related to folate or B12 (seemed too likely given everything else). My ferritin has gone from being too high (228) to 52 the last time it was checked. Not certain why. RBC folate was also VERY high at the time of that high ferritin reading. MCV has been pretty consistent since becoming ill again (abnormally high by a little). Does not seem to be changing despite a big change in how I feel overall, so clearly something hasn't been addressed yet.

    Dealing with any potential thyroid issues has been mostly on hold while I try to pin down some of my more obvious symptoms. Once other things are more stable, I'll be looking there if there are still signs of a problem.
  2. BiancaS

    BiancaS

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    Hi,sorry for not having been around for a while. I have quite some updates/progress. First of all, I have managed to find out a big piece of my puzzle, the main reason apparently why all my lyme's treatment did not really go anywhere. Tapeworm! Gigantic! Lost 17kg in a short space of time and doctors could still not figure it out. Well, in the end I went to see a doctor who works with alternative testing methods (like acupunture, bioresonance, etc, etc). He diagnosed and prescribed. Oh boy, for one week there was only worm coming out of me. Went back, he retested, worm still there. So I took a new dose, maximum strenght. Another 1.5 weeks worm coming out. Just gross! He tested me again, all gone. Still tested positive for filaria (Asain souvenir) and some other parasites. Been on Albendazole, Mebendazole, Prazquantel, Yomersal and Invermectin. Apparently all clear now (almost). Feeling much (!) better. Digestive system still in the gutter, malabsorption. Am now on Minocyclin plus teasel to treat lyme. According to the alternative testing, works very well for me. Actually, it does.
    The scary part is that the tapeworm was undetected on each and every single test I have done. No blood, no stool, no MRI, no ultrasound, nothing! But it was there, big time.
    Have also now changed gear a bit on supplementation. I have done the Metamatrix and all genetical testing on CYP, GST, MDR1, SOD2 etc, etc. Basically a few polymorphisms. MDR1 is reduced, which means cellular detox is impaired (no news there). SOD2 also heterocygot reduced, so am dealing with increased oxidative stress, also no news.
    Have now changed my supplementation regime to what the Metamatrix book is recommending for me. Evening promrose oil, carnitine fumarate, a compunded multi vitamin, methylcobalamin, active folate, 5mg of biotin a day, active B2, NADH,etc.
    Mulivitamin to include just broad spectrum, trying not to focus on one or the other. Apart from that, I got a FIR sauna and have now changed to tons of freshly squeezed green veggie juice and wheatgrass shots (2-3 a day). Additional coconut water. Works just great. A lot of good vitamins.
    Went through my chelation protocol and got rid of all the metals. Some Aluminium is left, which I am now chelating with malic acid. Turned out, one of my ceramic inlay tooth was for some reason leaking aluminium and nickel. Docs tested that in the saliva and levels before provocation were constantly high. Got the tooth localosed through kinesiology and removed inlay. All metals down now, apart from the igher aluminium. Since my GST M1 is functioning, I have hopes to get rid of that in no time.
    Thyroid and adrenals, progesterone big issue. Have decided to leave that till the end and see where I get after my antibiotics have finished, my gut gets restored. If there is still a problem left, I hae to clean up that mess to.
    Had huge lactate, almost no pyruvate. High dose of carnitine corrected that and I am takining a powder who deals with high acid in blood.
    As far as diet is concerned, I ran another food intolerance test and am now avoiding this food and milk plus guten for a while. I was really confused about what I can eat, as according to my SOD2 and my lactate, low carbs. According to my insulin resistance as well. According to my high cholesterol low fat and according to my low BH4 and CBS upregulation low protein :confused:
    So now I am eating just balanced! A bit of everything, freshly cooked (steamed) with a lot of nuts and seeds, flax seed oil. Works great. trying to eat a few meals a day, so to avoid insulin spikes.
    Hair loss stopped am slowly putting on weight again. Have restarted full time work, albeit taking it slowly. Supplementing with BH4, levels rising :D
    New blood test on minerals shows still a way to go, all very low levels, despite iv treatment. So gut is now main priority. One step after the other, but direction is the right one!
    SunnyInside likes this.
  3. richvank

    richvank Senior Member

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    Hi, Bianca.

    Wow! What a whirlwind you have been through! It's really great to hear of your progress. We should probably all be more aware of the possibility of parasites, and I continue to be amazed at the detailed testing that you have been able to get. The saliva testing for metals and the localization of the "leaker" tooth is really cool! I'm looking forward to hearing more about your progress as time goes on.

    Best regards,

    Rich
  4. Nina

    Nina Senior Member

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    Wow indeed! Thanks for coming back here to report on your progress.

    I thought it was particularly interesting that an alternative doc found out about the tapeworm since my trust in kinesiology, bioresonance etc is basically non-existant (doesn't mean I haven't tried it though).

    Does supplementing BH4 work well for you? Did you get a doc to prescribe it?

    Anyway, very happy to hear you've improved so much!
  5. BiancaS

    BiancaS

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    Got some very good news today! Latest ATP measurements show ATP of 2.6 (Ref > 2) :victory: At my lowest, it was somewhere around 1.2 or so. My doc believes it is down to the Apheresis that removed a lot of the toxins out of me! Just need to keep it up now, am a bit worried because of the antibiotics.

    Bad news is my NK cells are 7% or so (Ref min 10-20%) and my CD 57 is 18. So a lot of work to do, as trend is downwards.

    Nina, the doc I worked with in Germany is a IST specialist. He works according to the testing developed by Fr Dr Fonk. That is specialised in parasites.
  6. BiancaS

    BiancaS

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    And yes, BH4 works for me. I take very small dose (I 100mg tablet a day) and my levels have gone up from 1.8 to 2.4 (Ref > 1.9). Will continue to take a second pack I guess (I just need now to find a doc in Singapore to prescribe, but German doc will give me a reference - after much convincing one GP gave me one prescription, after I had to spell it......but now the clinic doc took over and is happy to use me as a test case). Will retest in 3 months time.
  7. rydra_wong

    rydra_wong Guest

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    Bianca, that's great progress! Since I have almost the same genes as you I am very interested in what vitamins are recommended in the end. I don't have parasite issues nor gut issues nor lyme, but as you clear the parasite and stabilize a bit, when you have determined your longterm supplementation regime, I would really love to hear it. It sounds like you are working with an exceptional doctor!

    Some of the genetic testing you have had done beyond the Yasko panel is very expensive. I have wanted to test for CYP but that costs $1,500 just for that. I am also looking for a place to test genes related to metallothionein and conversion of beta carotene to Vitamin A eventually. I wonder what made you/your doctor think to test for MDR1 (what is it??) and SOD? The Gst I can understand as it relates to methylation.

    We differ only in one gene -- you have mthfr 677 and I have ACE. So we both have all the BH4 genes in common.

    So - and you have to decide if this is valid or ask your doc, but I can tell you that I ate 80g protein then tested for serum ammonia and it was in range. So I do not think you have to be low protein - you just can't do HIGH protein. Maybe ask your doc what s/he thinks about a serum ammonia test to determine if a normal protein diet is ok. (fyi, Atkins causes low blood sugar for me).

    It's great to hear you're doing so much better!
    Rydra

    P.S. I got BH4 also - dose 25mg. It made no difference to me, but 500mg tyrosine made a big difference to me. Now I read for dieting 1g tyrosine is often recommennded so I tried it and got a low blood sugar attack. I am not yet sure they are related. But the 500 works great anyway. I am really interested that you were able to measure BH4? How / where do you DO that? And how/where do you measure ATP? Holy Cow! To be able to measure that stuff can take the guess work out of everything! I have never seen a test for that and never knew a doctor who knew of one either... what category of doctor measured that for you? Not the parasite doctor?
  8. rydra_wong

    rydra_wong Guest

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    Sparrow, usually ferritin should be measured with CRP because it is an acute phase reactant, meaning it changes with stuff like inflammation. High ferritin means inflammation is going on. Even normal ferritin could really be low ferritin + inflammation. I don't bother with the CRP because mine is normal. idk, but I suspect it is because I place an emphasis on high dose antioxidants. But possibly it's just because I'm not far enough past menopause yet for this problem. Or maybe it's because I take DHEA which inhibits TNF-alpha.

    Rydra
  9. BiancaS

    BiancaS

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    Hi Rydra,

    The doc who is treating me now is an environmental disease doctor at the clinic who washes my blood. He was also the one advising on the genetical testing.
    MDR1 si the Multi-Drug resistance gene, which, if you have a polymorphism like me, means that medicine has a difficult time entering your cells and it unfortunately bad stuff also has a harder time getting out your cells, ie your cellular detox is impaired. SOD 2 is equally important, as SOD, if I understand correctly, is dealing with inflammation and oxidative stress and the whole nitrostative stress (Pall). Now I know why I will never be a professional sportswoman ;) Doctors (genetical/environmental (!)) here are recommending for professional sportsmen to have their SOD2 gene tested, as the radical produced during sports cannot be compensated by the SOD2 gene if a polymorphism is there. The gene is approximately 50% slower if you have a heterocygot polymorphism like I so. People with that are apparently more prone to CFS and the whole nitro business.

    There is onle lab in Germany that tests BH4 in urine. And two I know of that test intra-cellular ATP. So this is indeed a good way to measure progress, but I guess for ATP, you just feel if it gets to normal levels as your energy levels do go up.

    As far as supplementation goes, i dont give my docs any credit, they unfortunately still have the "1 size fits all" protocol, which typically include the Cyano form of B12 and regular folate. That's where it starts and it continues via high dose of taurin, NAC, etc, etc. All geared around sulfates for glutathion production. High dose of glutmine is also typically included to address gut issues. In my case, that was all a recipie for disaster, as I am a typical Yasko case, where glutamine led to very high glutamate, need methyl B12 and active folate, can't take taurin as I am already producing a lot of it, etc, etc, etc. So it was down to "do it yourself" by way of yasko testing, metamatrix to double-check, reading the whole meta book and putting together a vitamin schedule which I got tested by a Klinghard therapist with kinesiology. A bit of a puzzle going on with trial and error.

    My supplementation list looks a bit OTT at the moment and I am seriously hoping to cut this down once my antibiotics is over and my gut is re-built. Can't continue like this forever! I need to book oversized baggage whenever I am travelling, due to the wieght of my luggage carrying around all those pills!

    I am currently taking:
    * 3 Coleus forskholi - Adrenals
    * 1 5000mcg Methyl sublingual (Jarrow)
    * 1 Adenosylco B12 sublinual (Thorne) - the ones recommended by Freddd
    * 1 active B2 by Thorne
    * 1 NADH 12mg
    * 5mg Biotin
    * 1 Vit B Complex (Pure Encapsulations)
    * 100 mg CQ10 (super ubiquinol)
    * 1 super K (Allergy Research)
    * 1 500mcg Moly (Douglas Labs)
    * 3 evening primrose caps (3x500mg)
    * compounded multi-vit according to my metamatrix result, to include 300mg zinc, 200mcg selenium, 5mg manganese, 3mg copper, 75mcg moly, 75mcg iodine, 1mg Bor, 400mcg chromium, 200mcg vanadium
    * 1500mg malic acid (to get rid of that residula aluminium)
    * 1 20.000 IE Vit D for a short while to rebuild to normal levels, then swap to 1000 IE per day and check regularily
    * 100mg pycnogenol (for that increased oxidative stress)
    * 4x carnitine fumarate (pure encaps) - need high dose according to my klinghard therapist
    * 5mg Lithium
    * 2 milk thistle tablets
    * 100mg of beneficial bacteria for gut.

    I think that's all really. Will let you know if I forgot anything. And please, do not underestimate parasites, especially when you have low BH4! Mine never showed up on any conventional testing, EVER! and it ate me up inside. i was just a skeletton with skin on it up until November.
  10. BiancaS

    BiancaS

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    Here I go. I obviously mean 30mg of zinc, not 300mg.... Also, I am taking a compounded amminoacid based on Metamatrix, without phenylalanin obviously. 1 time per week currently a 1000 mcg methyl and a 1000mcg adenosyl injection. Now I hope I have covered it all......
  11. rydra_wong

    rydra_wong Guest

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    Bianca, that is awesome that you figured that out all by yourself. I also just started taking coleus! I was having problems shaking which turns out to be from low thyroid and coleus helps thyroid get into the cells! I take it with a T3 supplement from iherb that has tyrosine, guggul, and several other ingredients in it for the thyroid. Between the two of them, they
    zap the shakes in minutes! I did not know it had anything to do with adrenal function. I'll have to print your list out to see what I'm taking that you're not because my supplement list is longer. I dont take carnitine (I make enough), nor the malic acid, nor aB12, pycnogenol, or evening primrose oil (although maybe I could use the latter).

    The main things I take that I don't see on your list are DHEA&pregnenolone hormone replacement (for the CBS genes) and an extra 50mg P5P (same reason). I take omega-3 and eat a lot of fish. I will have to compare our lists. But we do take a lot in common. I don't have oxidative stress - I take a high dose (2g mineral ascorbates, 1g E) anti-oxidants lifelong. Also I take calcium/magnesium capsules - pretty important - with K to make sure they get in my bones.

    Have you had health problems all your life with those genes? I have had. It sounds like for you it was a bout of tapeworm that made you sick and you were always healthy before? Did you used to take vitamins before then? I did ok but took lots of vitamins my whole life. I would not have done ok otherwise.

    Take care
    Rydra
  12. BiancaS

    BiancaS

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    Hi

    What is the name of your iHerb Thyroid supplement? I ordered Phyto ADR now for my adrenals. Let's see how that goes. Some of the ingredients help as well with thyroid.

    I don't take (yet) DHEA or pregnenolone. I also have to be careful with DHEA, as I seem to have some enzyme polymorphism there as well, as i seem to be having to high testosterone. So for me, it would be more the DHEA-S, or whatever it is called, which is not used to turn into hormones. THe Evening Primrose Oil helps there as well. It also helps where your 6 Delta Saturase...(?) enzyme is not working (probably due to lack of zinc, as zinc dependent) and your body cannot transform ALA to GLA. Happens for me, found out by Metamatrix, so I am supplementing GLA directly by taking Evening Primrose Oil.

    I have decided to wait with the hormones stuff until my digestive system gets better and my nutritional status improves. ALso when my adrenals get back on track. Then I still want to see what is still off. A lot of the things might resolve themselves and I only want to mess with hormones if there is a real need. P5P I do not take that much, as according to Yasko it is contraindicated when you have a CBS upregulation. Then you should only take moderate amounts. Even though I have HPU, my B6 markers are always in the normal rages (Metamatrix), as are most other B vitamins.
    I do not take magnesium and calcium yet, but I need to. i get confused, as some biofilm protocols clearly advise against it, but my bloood levels are so low, that I need to start. It is included in my "Athletic Nutrient" tablet I got from Pure Encapsulations, so will see how that goes. It also has some low levels of sulfates (like NAC) in it, no Taurin. My Moly levels are nice and normal now, so I hope this should be OK. Not sure what to make of my SUOX mutatuin (-/-) ANy idea??? I take Super K and high dose of Vit D3 currently, to fill up the tank, then will switch down to maintenance levels. So calcium utilisation should be OK once taken.
    I also take now 700IU Vitamin E. Can't take Vit C, somehow I am allergic to it or don't tolerate that well.

    Interestingly, I have never had any health issues in my life, nor was I on any supplements. The only time I took vitamins was when I was pregnant and then I took regular pregnancy supplements (with folic acid and all). No issues either. And that is quite surprising, given my lifestyle. Always working late, out till late, not much sleep, crappy food, a bit of alcohol, but no smoking. So all in, I burnt the candle on both end and i was somehow still fine. I could always eat and drink what I want without putting on one gram. My blood levels were always picture perfect. One doctor even called me "genetically lucky" in one of my health reports, given how good my blood levels and body weight were condsidering my diet and alcohol intake. Go figure! I am wondering if this was not the tape worm all along, helping me keep in shape :D
  13. richvank

    richvank Senior Member

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    Hi, Bianca.

    If you keep talking like this, everybody is going to want one!!:D:D

    Best regards,

    Rich
  14. topaz

    topaz Senior Member

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    Hi

    Ive recently been focusing on BH4 following listening to an Amy Yasko vid.

    What test identifies BH4 levels please?

    thank you
  15. richvank

    richvank Senior Member

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    Hi, topaz.

    One indicator of BH4 level is to run an amino acids panel and look at the values for phenylalanine and tyrosine relative to their reference ranges. If phenylalanine is high, and tyrosine is low, relative to their lab reference ranges, that suggests that BH4 is low, the reason being that BH4 is needed by the reaction that converts phenylalanine to tyrosine. BH4 is used in some other reactions, too, but they are not as accessible to testing. They are the conversion of tyrosine to L-dopa, the conversion of tryptophan to 5-HTP, and the production of nitric oxide by the nitric oxide synthase enzymes.

    Best regards,

    Rich
  16. topaz

    topaz Senior Member

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    thanks Rich

    I have to pull out my amino acid profile to review again. I had a urine based one done about 6 months ago here in Australia [I am presently investigating having the panel that you recommend done in the US as I want a better base line diagnosis]. My practitioner prescribed a Thorne L Tyrosine supplement based on these results so I must have been low in tyrosine.

    I will discuss BH4 with him but prima facie, do you think supplementing BH4 would likely be beneficial?

    You mention the conversion of tryptophan to 5HTP. A general question, based on your experience do you find supplementing with tryptophan, 5 htp or melatonin to be most benefical? I understand from the posts here that it does vary from individual to individual and there are some benefits from supplementing with tryptophan as that can be used for more processes than just 5 htp. [I supplement with 5 htp at present and am finding it difficult to determine its effectiveness as I have just switched back to brand A having switched to brand B following what *appeared* to be a detrimental impact - hard to tell as I introduced a few supplements at the same time as that change].

    Thank you again.
  17. rydra_wong

    rydra_wong Guest

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    Rich, I am curious about this as well. I always turn up low serotonin on tests but 5-HTP does nothing for me. I have 3 genes that cause low BH4. Is that the issue? I tried 25mg/day BH4 and it did not seem to have an effect. BiancaS is taking 100mg but by prescription (kuvan). What she is taking is very expensive. I have never noticed any real issue from low serotonin (it does not make me depressed, but I do believe I read it effects blood pressure and mine is very high - although I have it totally under control). I think maybe low dopamine has more to do with depression despite serotonin's reputation. Still I'd lik eto fix everything.
    Thanks
    Rydra
  18. rydra_wong

    rydra_wong Guest

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    Boanca, SUOX (-/-) means you have NO SUOX MUTATION! (I was taken aback when you said you had it because I do not, but then I realised -/- is NONE. You should look at your documentation because the labs/docs get so tired of saying that -/- is a mutation, that they finally switched how they report it to patients. It means none.

    I cannot believe you were healthy all your life with those genes. I have all my life had to be very careful with what I ate and avoided, had to take vitamins, had 'the worst allergies my allergist had ever seen in 20 years of practice', had low level neurological problems (my Mom got me glasses thinking I could not see when really I was just clumsy!), etc. I always had problems with low blood sugar and shaking. I always had problems with my back hurting so bad my spine did not feel like it would support me during PMS. I always had migraines. I have always had problems eliminating greasy food gunk from my body (whether liver or kidneys that were slow to move the sludge). Blah, blah, blah. It was always something. But except for allergy seasons I always looked healthy. I tried real hard and never failed any blood tests. It wasn't until I started ordering my own labs that I started to put the picture together.

    I thought I listed the thyroid supplements, but not sure where. Here they are:

    http://www.iherb.com/Absolute-Nutrition-Thyroid-T-3-Original-Formula-180-Capsules/27664?at=0
    http://www.iherb.com/Thorne-Research-Coleus-Forskohlii-60-Veggie-Caps/18578?at=0

    I knew about D6D way before I knew about mB12 but evening primrose does nothing for me. I am not sure I have a D6D problem as I have normal zinc and I take vitamin C in high dose and I have low, not high, blood sugar. I used to have a list of what supplements were needed for that enzyme but it was on my flash drive that was stolen. So idk if that is a problem for me but I have no real reason to think it is (other than that enzyme requires quite a lot of nutrients to work and so there is a higher chance of it not working). I read all about D6D in The Omega-Rx Zone by Dr. Barry Sears, PhD, lipid science.

    I do take VERY HIGH (9g/day) omega-3 during allergy season as it really does uncrab my head. I have not found anything to stop the nose running though. I tried nettle and in high dose that works too but it also raises your insulin causing more low blood sugar so I can't take that.

    Take care. I am about to metamorphize into Triffid113. I don't want to use a name I use for other things in this board. If you read Sci Fi you'll know it's me as I am switching from one sci fi name to another. Take care
    Rydra
  19. nanonug

    nanonug Senior Member

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    Virginia, USA
    Metametrix has one called Neopterin/Biopterin Profile Urine.

    I am going to be doing this one in a few days.
  20. triffid113

    triffid113 Day of the Square Peg

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    Just thought I'd post this here. I did not know I could get BH4 so I made myself this list:


    Methylfolate and vitamin C both raise BH4: http://www.life-enhancement.com/arti...ate.asp?id=841
    Estrogen replenishes BH4: http://journals.lww.com/menopausejou...scular.20.aspx
    reservatrol raises glutathione and BH4 (but moreso in women): http://74.125.155.132/scholar?q=cach...s_sdt=80000001


    Things that raise BH4
    ?Methylfolate
    ?Vitamin C
    ?Niacin, niacinamide
    ?Saunas
    ?Estrogen
    ?Insulin (normal/low blood sugar) [5]
    ?Possibly helpful: purine GTP (BH4 can be made from it)

    Things that lower BH4
    ?Genetic polymorphism MTHFR A1298C
    ?High protein (Ammonia -- 2 BH4 required to eliminate 1 NH3)
    ?ROS (radical oxygen species)
    ?Salt
    ?High blood sugar (due to oxidative stress)
    ?Aspirin (interferes with folate absorption)
    ?Excessive exercise? (Protein breakdown into ammonia)
    ?Hypothyroid (oxidative stress) (probably hyperthyroid too, I'd guess)
    ?Lithium, if it causes hypothyroid (it can)
    ?Hypopituitary (causes oxidative stress)

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