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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Where to start?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Tarigal, Jun 25, 2013.

  1. Tarigal

    Tarigal

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    I stumbled upon this site while doing some research on mercury and sulfur. I don't have CFS, but am a type 1 diabetic who had hidden heavy metals on a hair analysis. I was on a protocol by Dr Larry Wilson which had a high amount of cruciferous vegetables and eggs as the main staples. I was not reacting well to it however. I had been doing it for 3 months or so and was slowly getting worse. I decided to really start looking at why when I had some new gray hairs come in.

    My efforts led me to a connection between sulfur and possibly liberating mercury. While on that search, I came across mention of Dr. Von K and methylation, and some connections started to be made.

    •I once had a cyanacobalamin B12 shot and contrary to what the lady said, got very tired afterwards. In fact several times when I have taken B12 supplements, (methlycobalamin,cyana, hydroxy), I have gotten very tired.

    •As part of Dr. Wilson's protocol, TMG 500mg twice a day was prescribed. After the first day, I felt a little nauseated. The second day I felt more nauseated and so dropped it to one tablet a day. The third day, after the third tablet, I felt so sick I went home and proceeded to violently throw up and dry heave for 12 hours. I decided to stop taking the TMG.

    •Yesterday, remembering these facts, I tried a hydroxycobalmin 1mg/folinic acid 1mg sublingual from Olaloa. Soon after taking it, I felt angry, then a little scared, and my knees started hurting. I went to take a nap and noticed two large swollen lymph nodes in my thighs. After the initial emotions, I felt great for the next four hours. This leads me to believe I could benefit from some type of methylation therapy.

    I read the papers by Von K which were very enlightening. I am also reading Dr. Amy Yasko's book. I am now wondering where a good place to start would be for research. I do not want to jump right in on methlyation and mistake detox symptoms for worsening. It seems very complex, but I am willing to do the ground work in making sure I get it right. Any suggestions?

    Thanks
  2. caledonia

    caledonia

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    Cincinnati, OH, USA
    Watch the Methylation Made Easy video series. The link is in my signature.
    Tarigal likes this.
  3. PennyIA

    PennyIA Senior Member

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    I would also consider genetic testing at a place like 23andme (you can opt out of the research side if you want to). It's affordable and helped answer a lot of questions for me. I then did a google search for genetic genie (which gave me the list of results you see in my signature) based on the genetic test results.

    I struggled figuring out a treatment plan on my own. But, I found a great doctor who is working with me over skype to develop a treatment plan that is working for me (outside of health insurance)... best $150 x 2 visits I have ever spent on medical care.
    nkm and Star-Anise like this.
  4. nkm

    nkm

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    Could you please elaborate on what you attempted and what the Doctor did which is working for you?

    I think many people may benefit from your experience.
  5. PennyIA

    PennyIA Senior Member

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    On my own, I tried adding methyl folate, methyl b12, p5p... but I started with tiny doses and really slow ramp up... the minute I experienced racing heartbeat - I slowed clear down and started back up again. I did this for about six weeks with no improvement in my symptoms. I did learn about epsom salt baths - and that did help quite a bit with some of my chronic pain... but it was the fatigue that was disabling me.

    Then I found a naturapathic doctor in my area who agreed to learn about MTHFR who was willing to take me on and help me out (well, she said she was willing to learn). She immediately recommended Folic Acid, B6, and cyanocobalamin (which required pushback from me and slight concession from her) - but she also worked on my gut. A nutritional shake, probiotics, fish oil, Zymex, Protofood, Zypan, Cholacol. The B complex we agreed upon was the MethylGuard Plus - but she had me taking one in the morning and one at night (which kept me up at night) - so I dropped down to one in the morning. She also wanted me taking Calcium with added magnesium - but I can't take magnesium orally - and got really ill off of it - so I stopped it as well. Lifestyle changes were to cut gluten out (already had cut dairy), as well as to eat more Mediterranean style diet (Dr version).

    After four weeks on this protocol - I still wasn't seeing any improvement in my symptoms. FWIW - I had chronic fatigue (that soul crushing, unable to move fatigue), PEM, chronic pain - muscle, joint and neurological pain, as well as weird undiagnosed nuerological symptoms - dizziness, numbness and tingling, temperature insensitivity for part of my body, etc.

    She was shocked that I wasn't better (I wasn't - it wasn't like I hadn't tried most of these before). But, she was ready to stop recommending next steps - sigh. Since she was resistant to treating the MTHFR more aggressively and hadn't yet read any of the site links I'd sent her with methylation info - I decided to go back to my search for an MTHFR specialist. I found a guy Dr Fred Grover in Colorado who is an Integrative MD - www.revolutionarymd.com. He works outside of insurance - but for $150 for a 30 minute session with him via Skype? He set me on a better track. I've only had two sessions with him. So, for $300 out of pocket? He's already done more good for my health than the $50,000 medical debt I incurred in the first few years of my illness.

    First thing - I needed MUCH more Methylfolate, etc. He had me increase immediately to 3 Methylguard plus every morning, then 5 within two weeks. And that's just until I use up the supply I already had. He had me add ALA and NAC, as well as Vitamin C and Vitamin D drops. Within two weeks the fatigue was almost completely gone. Most of my chronic pain from the areas that hurt worse while I'm inflamed receded... and the chronic diarrhea was gone. It's been six weeks now, and I'm buying some zymogen (I think) Methylfolate and am going to double my intake when I get it as well as start using Opticleans (sp?).

    Additionally? I was also experiencing some severe dental issues - so during this time I also broke down and got most of my teeth pulled. I realize it's drastic - but it was easier than replacing all of my amalgam fillings and my teeth had gotten really bad (thanks genes) - so I am now using dentures. I do have a few teeth left, but am fighting to avoid having any metal added back to my mouth at this point. I know there's a lot of controversy around amalgam fillings... and I think it very possibly could boil down to specific Methylation and detox genes combined with a number of old fillings. I'd never connected the metal taste in water to my fillings - but without them, I'm now able to drink water without gagging (or using an additive to cover the taste) for the first time in years.

    At this point - the fatigue is completely gone (I was even able to take a five day trip across country with minimum PEM afterwards). The little bit of pain I have is down to a 1 or 2 at most at any point in time. And instead of having multiple experiences of diarrhea 9 out of 10 days, I've had it twice in six weeks.

    I can only hope this is more than a remission. I've had remissions in the past, and they've honestly never felt this good. My mood is improving dramatically. I'm feeling more social. And I'm finally able to get back to cleaning my house (thank goodness, it was getting close to being able to be condemned for nastiness).

    Ok - not sure this didn't ramble too much. But if it's too generic, please let me know.
    helen1 and Tarigal like this.
  6. Tarigal

    Tarigal

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    Wow thank you for the story. Super helpful. Down the line i may contact that doctor. i watched all the stuff in caledonia's sig, some really good info in there. I ordered 23andme as well.

    Sorry to hear about your teeth, that's rough, but at least no more mercury exposure.

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