The End ME/CFS Project: History Taking Root
The history books record that in the nineteenth century Louis Pasteur formulated a “germ theory” of microbes as the causative agents of disease, and thus revolutionized medicine. His findings, along with his contemporary, John Snow (who linked cholera to infected water supply),...
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Is there BH4 supplement/medicine?

Discussion in 'Genetic Testing and SNPs' started by tim0011, Mar 23, 2013.

  1. heatherfeather7983

    heatherfeather7983

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    I just tried the one from Spectrum Supplements and a box popped up that said: "Pteridin-4 (2.5mg) - 60 capsules (formerly BH4 - TetrahydroBiopterin) is not for sale" It is cheaper, but I'm not sure why they're not selling it right now.
     
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  2. Mimi

    Mimi Senior Member

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    They have been running out on and off lately, I think due to increased demand or perhaps less supply from the manufacturer, Ecological Formulas/Cardiovascular Research.
     
  3. knackers323

    knackers323 Senior Member

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    Can anyone tell me the best bh4 option that is currently available.

    Thanks
     
  4. Mimi

    Mimi Senior Member

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    Funny you should ask. I'm about to place an order with Schircks Laboratories in Switzerland on behalf of a group of CFSers from BACFS. We're each pitching in at $200 for half a gram. It's a lot of money, but cheaper, more reliable, and fresher than the domestic brand. I find I need about 15 mg/day and more if I'm sick or particularly stressed, but I'm telling newbies to start low and go slow - maybe 5 mg or less if you have MCS. My MCS friend started at about a quarter of a miligram and worked up to 15 mg. She said it really helped her MCS and energy overall. Message me if you are interested in getting a share.
     
  5. malk

    malk

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    @Mimi
    Is it possible to give us an update on your order to Schircks? Did it work? How much did you get for which price? And especially, which item did you buy? There are several different forms of BH4 shown in their pricelist and I would not know which is the appropriate one or which is recommended ;-(

    I used the BH4 from Exological Formulas for a while and it had a fantastic effect (my brain is like new, seriously, no other treatment or supplement came close to it, but of course I prepared my body for over a year before I dared to try it the first time). Unfortunately this product is out of stock for a while now and my ADHS symptoms start to come back. So I am looking for an alternative (and maybe cheaper option).

    Any help is greatly appreciated.
     
  6. aquariusgirl

    aquariusgirl Senior Member

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    Anybody else get die off from it?
     
  7. aquariusgirl

    aquariusgirl Senior Member

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    @ Malk prepare your body how?
     
  8. malk

    malk

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    Well, thats a long list. Basically everything mentioned here in the forum and more like:
    Adressing all relevant SNPs in methylation cycle first (based on this forum and RichVK, Amy Yasko and many others)
    treating severe digestion issues (e.g. change to Paleo diet & safe starches, probiotics ...)
    getting theeth and jaw fixed (removal of: very toxic root canal treated tooth [tested by orotox.de], mercury fillings, gold fillings and especially NICO [tested by CAVITAT])
    various detox with liver flush, castor-oil, herbs, enema, DMSA (lead, mercury ...), DMPS
    lots of supplements
    doing lots of testing to find out weaknesses and deficits (tests: digestion, organic acids, heavy metals, genetics, hormones, neurotransmitter, blood, liver detox capabilities ...)
     
  9. Mimi

    Mimi Senior Member

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    Hi Malk,

    I found that BH4 actually stopped my mercury detox side effects. Thank god - I was moody as hell. I and another PR member in the UK both tried ordering from Schirck's but couldn't because we told them it was for human use. Turns out it's not approved for that . Only Kuvan, which is by prescription is allowed to be sold in the US. So that's what I'm taking now. And it works great! I also take P5P, L-5MTHF, MCT oil or pasture butter and vitamin C to help scavenge peroxynitrite. Now I'm working on reducing inflammation with diet, a few supps, and a couple of drugs. That will decrease how much BH4 is wasted by dealing with inflammation (it becomes unsalvagable after that.).
     
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  10. Mimi

    Mimi Senior Member

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    FYI, I think Candida can be a big thing for us folks. Never did before. But now that I've looked at the science that's available, plus with what I've learned about BH4 wasting, I think it's crucial. I also read on Body Ecology that Candida causes low acetylcholine but haven't researched that yet. In any case, 4 days of huge gains in brain function from taking DMAE (an Ach booster) has convinced me that low acetylcholine could very well be the cause of my ADHD.

    Here's a link on Candida and MTHFR SNPs. What they say about folate problems also means less BH4 salvage and low mood: http://mthfr.net/methylation-inhibited-by-candidas-toxin/2012/09/08/

    And here's the best deal on Lufenuron for killing Candida safe and effectively: www.shop4lufe.com. Any profits go to fund a charity clinic in Mexico for HIV/AIDS and cancer patients.
     
  11. Ema

    Ema Senior Member

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    Do you mind to share the dose of Kuvan you've found to work best?
     
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  12. Hip

    Hip Senior Member

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    FYO: the reason BH4 is expensive and only available without prescription in small dose tablets is because BH4 was given orphan drug status in 2002, giving specific companies the exclusive right to sell BH4. Biomarin and Merck Serono has this right, and they sell their BH4 (trade name Kuvan) in 100 mg tablets.

    But all the other sources of BH4, such as Pteridin-4 from Ecological Formulas, are at low doses (eg 2.5 mg), sold as "homeopathic" formulations.

    However, this BH4 orphan drug status is due to expire in June 2015, ending the exclusivity, so the price of BH4 will hopefully drop, and the availability and dosage of BH4 will hopefully increase.

    I recently wrote to several supplement manufactures pointing out that BH4 will be classes as a supplement after June 2015, and that they might consider adding this supplement to their range.
     
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  13. Mimi

    Mimi Senior Member

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    Oh that would be wonderful. Thank you so much for doing that. BH4 is magic for me.
     
  14. malk

    malk

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    Hello Mimi,

    Thanky you very much for your update. It is very interesting what you describe.

    Regarding lead & mercury detox I had the impression that BH4 removed several blocks in my metabolism and enabled me the first time to detox at all. I mean I had some success in detoxing before as well, especially with DMPS, but many problems like brain fog and ADHD (in German ADHS) did not go away for long (only for a fiew days). Tiredness, memory loss, digestion issues etc. stayed as worse as they were.

    I always had very low catecholamines and neurotransmiter (in saliva and urine tests) and they stayed low (this is typical for brain, concentration, ADHD, and mood problems). Therfore I assume my methylation cycle (esp. BH4 cycle) still did not work properly. No wonder that I had no significant improvement despite the fact that I removed some toxines. I made an organic acid test and genetic test which hinted in many ways to a low BH4. Therfore took several suplements like the L-5MTHF in preparation before I tried BH4.

    It seems BH4 was able to improve general detox capabilities and catecholamines. No wonder because BH4 is known to be required for several detox metabolism processes and some toxines block BH4, which is a vicious circle.

    I have ADHD brain issuse since childhood, now with BH4 my ADHD symptoms are nearly fully gone (what a relieve with 43 years) and every new detox session with DMSA has good results (meaning that I feel great afterwards for a view days and I can sense a slow but steady improvement in the long run). Also my urine tests show heavy metal excretion.

    May I ask you which detox side effects disapeared in your case after BH4? This is very interesting to me in order to understad, which side effects you had in comparison to me. Also, what kind of detox regime do you do and for which toxines? Thanks in advance for your details.

    Candida I always had on the radar. But with testing (organic acids), stool etc. there never was a significant marker. So I am still questioning if I have Candida problems. From a diagnostic standpoint many hints to that.

    In general I have the feeling that I can do whatever I want for my digestion (diet, probiotics etc.) and nothing really helps in the long run. It feels like there is a missing piece which still blocks everything in my belly. Interstingly a DMSA session usually improves my digestion the best. This is somewhat strange because I read (I think it was Klinghardt) that DMSA increases the Candida load and therefore is not recommended. In contrast to that I always have the impression that DMSA improves my digestion as if it heals the "missing piece" which I mentioned above.

    I suspect that parasites, bio films and viruses are a bigger problem in my digestion than Candida, but that is just a gut-feeling of me.

    By the way, I was able to boost my concentration and brain with CDP-Coline (=Citicoline). I bought the powder bulk stuff because it is very expensive. DMAE I tried a long time ago and it had no impact, maybe I should try it again after BH4.

    I cross my fingers that BH4 will again help when it is available. I think I might switch to Kuvan as well because if you look at the price per mg it is even cheaper than the one from ecological formulas.
     
    Last edited: May 8, 2015
  15. malk

    malk

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    Another interesting observation: Since my metabolism changed due to BH4 I am starving for pasture butter. I eat it every day together with any meal, like others use Mayonaise or Ketchup. Somtimes I just bite into a block of butter with pleasure. This would be an explanation to Mimi's description that pasture butter is a peroxynitrite scavanger.
     
  16. Mimi

    Mimi Senior Member

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    Hallo, malk! Thanks for your post.
    (Ich have in die Schweiz geliebt. Es gefelt mir gut Deutch zu sprechen. Aber ich kann nur ein bisschen Deutch.)

    First, regarding biofilm, I think you are right on. I just read an article up on PubMed about how fungi and bacteria interact. Some of these interactions, or BFIs, are synergystic. Other times fungi and bacteria are at war. When they are synergistic, the fungi protects the bacteria. Candida and Staph are one example. This can make biofilms much more difficult to remove, which is particularly a problem in controlling hospital infections.

    A doctor I've been corresponding with in Mexico treats his AIDS and cancer patients for Candida and parasites prophylactically. He uses Lufenuron for the Candida because it's safe, effective and cheap. For parasites, he uses Ivermectin. I haven't asked him what he uses for bacteria yet, but I know he does a variety of wholistic approaches, including juicing. I personally like a locally-made herbed saurkraut that includes fresh oregano, thyme, garlic, burdock and horseradish. A few bites of that gives me a total body thrill. Can't say the same about das Saurkraut!

    Regarding testing, Candida can invade any organ in your body. The CDC calls this invasive systemic Candida. I don't know if it would show up in the gut if it's outside the gut, but if it is outside, I believe it can really be a problem. Dr. Luna says flat out you can't cure chronic illness without first treating Candida. That's why he treats everyone.

    I did frequent low dose DMSA so your comment about Candida is very interesting. If you can provide me a link, I will send it to a friend who did a lot more DMSA than me. Make that two friends, and their friends, too.

    Other unusual risk factors I've read about: swimming in chlorinated water at lot (www.candidamd.com), hormone replacement therapy or birth control pills, and any stay in the hospital that involves feeding tubes, such as the ICU.

    BodyEcology.com says Candida interferes with acetylcholine synthesis and MTHFR.net says it interferes with methylation leading to low MTHFR (which in turn I know leads to low BH4 due to insufficient salvage/recycling).
    BTW I'm so glad to hear BH4 solved your ADHS! I definitely improve with it but I seem to need something more. Which is to say, BH4 is tremendously helpful all around, but the biggest difference is in mood, with energy and concentration after that. They all seem part of the same thing to me, so I can't really rank the differences. During the DMSA regime, or any other time, BH4 lifts my mood in half an hour. I think it feel it in 15 minutes but 30 after minutes I'm sure. Oh, and I also sleep better. Good to take at night but it doesn't really matter. Just like to take with butter or MCT oil for better absorption. Important when it costs me $38.85 for 3 doses!

    I'm now on Day 3 of Lufenuron and have had good results from Day 1. No side effects, and visible sinus drainage. Candida commonly infects the mucoidmembranes, so I was very very hopeful that this would happen. I just didn't expect it right way.

    In terms of other detox protocols, in addition to a healthy diet with lots of fresh vegetables, few fruits, no grains, starch, sugar or milk, I most highly recommend s-acetyl glutathione. Glutathione is your body's detoxification system in your liver and brain. It may also act in the blood. The s-acetyl form is stable orally and is 100% absorbed. You can buy it directly from Arke Organics in Italy so the shipping cost to you should not be too high. Buying a larger amount with friends will definitely save you money. I bought a kilo last time and I take it whenever I need a pick me up.

    Another helpful hint for liver healing: coffee implants. They are supposed to make the liver release glutathione. It certainly feels that way when I do it. I use an enema bulb for convenience and start with a 1 c. warm water rinse.

    Castor oil packs also great for liver. But sticky. Recommend a disposable pad and the roll-on castor oil bottle found on Amazon.com. Haven't checked Amaxo.de.

    Okay, gotta run. Schoenen Tag noch.

    Mimi
     
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  17. Ema

    Ema Senior Member

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  18. Mimi

    Mimi Senior Member

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    This is what I got from Schircks. But warning, I did develop toe cramps after a while, so I think you are better off getting Kuvan, if you can wrangle a prescription. Also, BH4 powder is not stable - it degrades with exposure to oxygen or heat so it must be packed cold in vacuum sealed ampules. These can be tricky to open. BH4 powder is not approved for human use, and I've heard of someone not only developing cramps but bleeding from the eyes.

    D A T A S H E E T
    TETRAHYDROBIOPTERIN
    Synonym: 2-amino-6-[(1R,2S)-1,2-dihydroxypropyl]-5,6,7,8-tetrahydro-4(1H)-pteridinone
    Please note that none of the products shown below are sterile.
    They are sold in ampoules for laboratory use only.
    CAS No. 17528-72-2
    H2NNHHNNHNOOHOHCH3.2HCl
    6R,S-BH4 Product no. 11.209
    CAS No. 69056-38-8 CAS No. 109784-74-9
    OH2NNHHNNHNHCH3OHOH.2HCl
    6R-BH4 Product no. 11.212 INN: Sapropterin dihydrochloride
    .H2SO4H2NNHHNNHNOCH3OHOHH
    6S-BH4 Product no. 11.215
    Product Name
    Prod. No.
    Abbreviation
    Molecular Formula
    M.W.
    (6R,S)-5,6,7,8-Tetrahydro-L-biopterin dihydrochloride
    11.209
    6R,S-BH42HCl
    C9H15N5O3 2HCl
    314.2
    (6R)-5,6,7,8-Tetrahydro-L-biopterin dihydrochloride
    11.212
    6R-BH42HCl
    C9H15N5O3 2HCl
    314.2
    (6S)-5,6,7,8-Tetrahydro-L-biopterin sulfate
    11.215
    6S-BH4H2SO4
    C9H15N5O3 H2SO4
    339.3
    Chemical reduction of biopterin yields two diastereoisomers, 6R- and 6S-BH4. 6R-BH4 is the natural form of tetrahydrobiopterin. The 6R,S-BH4 that we manufacture contains about 70% of 6R-BH4 and 30% of 6S-BH4.
     
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  19. Mimi

    Mimi Senior Member

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    A simpler way to increase BH4 is not to waste it. Treat underlying infections and you'll stop wasting BH4 due to inflammation. Common sources of infection include parasites (yes, even in the West), gut dysbiosis, Candida overgrowth and viruses. There are inexpensive treatments for all of these if you look around carefully. M
     
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  20. Mimi

    Mimi Senior Member

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    To promote recycling and efficient use of BH4, I take L-5MTHF, NADH, P5P (active B6) and take dissolved silica. The silica gets rid of aluminum which blocks BH4 recycling. To further prevent waste, I take antioxidants like vitamin C, glutathione and idebenone. I also take L-carnitine when I remember to take it away from protein. Antioxidants help mop up peroxynitrite radicals so your BH4 doesn't have to. Estradiol and resveratrol stimulate estrogen receptors which increases BH4 synthesis, so I'm in favor of bio-identical HRT for peri and post menopausal women. Natural estrogen is cardioprotective, no doubt because it increases BH4 and therefore nitric oxide. (NO causes vasodilation.)
     

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