RICHVANK Methylation and the

Discussion in 'Fibromyalgia Main Forum' started by redhummingbird, Jul 29, 2008.

  1. redhummingbird

    redhummingbird New Member

    Hi Rich-

    I don't know how often you check this board. I had some testing done including MSH, MMP-9, C4a, HLA DR, CD57 Panel.

    The results show I have the "dreaded genotype" or the multi-susceptible type. I've been reading Mold Warriors and found out also that my MSH is low, the MMP-9 is high (according to Dr. Shoemaker though within reference range by LabCorp).

    I'm wondering about the relationship between those who have a methylation block and people, like me, who are unable to get rid of toxins.

    It seems that starting the methylation block when the body isn't able to detox properly can cause a cascade of toxins to build up in the body with no place to go.

    What do you recommend for this?

    I know that Dr. Shoemake recommends cholestyramine to bind to the toxins. Would this be helpful with the methylation protocol?

    I still haven't recovered from starting and have now stopped antibiotic treatment until I can speak to my doctor.

    Thanks for any light you can shed.
    [This Message was Edited on 07/29/2008]
  2. redhummingbird

    redhummingbird New Member

    Hi jam-

    Ugh. Things are hard. I found out my dad has a reoccurance of prostate cancer. I saw him yesterday-he doesn't look good (also has leukemia). Then today I got my denial letter from SSDI.

    I'll post my CD57 results. I can't find the labwork at the moment.

    I'm glad you're getting tested for the methylation block. I'm probably going to request it myself. It's just so expensive!
  3. richvank

    richvank New Member

    Hi, red.

    I, too, am sorry to hear about your dad's situation and the other unpleasant news you've had lately.

    Your question is right at the cutting edge of the research now. I hope to learn more about this soon, but my current position is that if a person has biotoxins, as shown by the visual contrast sensitivity test, they should try to ascertain whether they have Lyme or mold illness or both, and should treat accordingly. I think Dr. Shoemaker is the leader in treatment of mold illness and the biotoxins. There are differing approaches on Lyme treatment, and I'm not sure what is the best.

    My current best guess is that people with CFS who have a positive VCS test will need both treatment for Lyme or mold illness and methylation cycle treatment. This might need to be done sequentially to make it tolerable. However, so far this is all a hypothesis, and is not proven.

    It's very important that you work with a doctor in treating your case. My suggestions above should not be viewed as medical advice. We are just in the process of trying to learn what the best treatment is in these cases. I realize that you can't hold up your case until we find out! (;-)

  4. redhummingbird

    redhummingbird New Member

    Thanks so much for your support. I, like all of us, can use it right now.

    Things feel overwhelming but I'm a fighter so will fight on as usual.

    My time with my dad is precious. Unfortunately, he and his wife are moving to Utah at the end of August.

    I'm housebound and too ill to travel so I worry I won't see him again.

    The move was planned and ultimately will be good in that the health care is better where they are moving but it does break my heart.

    Thank you both.
  5. redhummingbird

    redhummingbird New Member

    Thank you for your reply and attentiveness to us methylation folks.

    I spoke with my doctor who is located in northern CA. He advised me to stop the antibiotics and then restart methylation supplements one at a time.

    I'll start treatment in a week with mepron for babesia to see if that's the culprit.

    Regardless, I'll be slowly restarting the methylation protocol.

    I figure I'll start with the Perque B12 for 2-3 days and then add in something else for 2-3 days.

    Thanks too for your support about my dad.
  6. Mikie

    Mikie Moderator

    Sorry I can't help with your question but want you to know I'm sending up a little prayer for you and your Dad.

    Love, Mikie
  7. redhummingbird

    redhummingbird New Member

    Thank you for your kind words and support. It means a lot.

    How are you doing these days? I don't see you on the boards too much.

    You've had good results with the methylation if I'm remembering right?

    I hope you're well...
  8. Mikie

    Mikie Moderator

    I do seem to respond very well to the MCP but I can only do it part time as I seem to purge a lot. I'm off everything right now as I got something like gastritis after eating a hamburger and it won't go away. I'm seeing the doc tomorrow. It's taking its toll on my energy. I am giving up my cable internet connection and will not be here as much. I've been weaning myself off slowly :)

    Hope your Dad is doing better. I'm happy to pray for you both. Take care.

    Love, Mikie
  9. marti_zavala

    marti_zavala Member

    Hope you get to spend some quality time with your dad.

    May I suggest that you go slower. Starting something every two or three days may be too fast. Some folks wait a week or even two before starting something new or increasing a supplement.

    I know that is slow but sometimes it takes a little while to kick in and then you won't know exactly which one it was. If it goes well, you can bump it up a little.

    Just an idea.
  10. redhummingbird

    redhummingbird New Member

    Thanks for your support. It's hard with my dad. Being sick, as you know, just makes me all the more emotional. I think it's also hard on him to see me so sick and non-functional.

    My doctor had told me to take each supplement one at a time for 2-3 days and then add one in at a time.

    But you were so right on with your advice to me last time I'm going to slow it down even further.

    Starting Mepron and another antibiotic after I get started on all the supplements feels like a bit much so I'm rethinking my whole treatment plan.

    I wish there was a book called the Methylation Protocol for the Cognitively Impaired. This stuff just goes over my head.

    Thanks for the reminder to slow it down.
  11. deliarose

    deliarose New Member

    I first ran Shoemaker's VCS test a year ago & got a clean bill of health.

    Ran it again this week, almost exactly 12 months later, and it was positive.

    It should be noted that during that time I was on yasko's protocol..although I'm not sure if this is relevant.

    The site says I tested positive for neurotoxins, but Rich seems to think it's biotoxins, .. mold or lyme.

    But I would have thought neurotoxins could be mercury or lead, not necessarily Lyme or mold.

    Now I need another doctor. One who treats biotoxins. God, this is getting so OLD!

    I wonder what my first step should be? Cholestyramine?:


  12. ETN

    ETN New Member

    Just checking in and saw this post and was wondering how you are feeling and hoping your dad is well.

    I am on the methylation protocol also, who do you see in Northern CA, I go to Dr. Powell. I am in Elk Grove just outside of Sacramento.

    Hope you are doing well.
  13. richvank

    richvank New Member

    Hi, delia.

    I just learned that mercury toxicity in the brain can cause a person to have diminished visual contrast sensitivity, just as biotoxins can. So can drugs, alcohol, organic solvents, and other neurotoxins. Sorry to mislead you in the past. I didn't realize this, and Dr. Nathan told me a few days ago. I just did a PubMed search, and there are several published papers about it.

  14. deliarose

    deliarose New Member

    Hi Rich

    You didn't mislead me. I was just thinking aloud ...trying to figure it out.

    If mercury were the culprit, then I would have expected to test positive a year ago.

    I did have a recent mold exposure. MIL's flooded basement.. so it could be mold.

    I honestly don't know how much stock to put in this test, or specific results. It might be more useful to do it every three months and watch trends.

  15. redhummingbird

    redhummingbird New Member

    That's so nice of you to ask about my dad! He's doing okay. We found out his cancer has spread to his bladder and maybe more.

    The good news is that his PSA levels are decreasing so it means the cancer is responding to treatment.

    I see a doctor in Santa Rosa.

    I've heard of Dr. Powell-he's in or near Sacramento?

    Thanks again for thinking about my dad...

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