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Not sure where to start! Heterozygous C677T/CFIDS Diagnosis

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by becky82, Mar 1, 2012.

  1. becky82

    becky82

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    Sandusky, Ohio
    Hi all, I posted in the general treatment forum but my post was quite long and scattered. I'll try to sum it up here! Here's my original thread if interested.

    I'm 29 years old, mostly housebound at the moment, not able to work but am a full-time single mom (need lots of help though). Have lots of muscle pain, nerve pain, joint pain, BRAIN FOG (HATE HATE THIS!), muscle cramps, fatigue, post exertional malaise, depression, anxiety, irritability, no zest for life, vertigo, sinus problems, daily headaches, the list goes on!! I'm very angry that I'm like this. I'm very much in mourning for the life I should be having.

    A doctor at the Cleveland Clinic tested me for MTHFR last August, and it turns out I have one copy of the MTHFR C677T mutation. I've been told that this isn't that severe, but she did put me on Metanx and I noticed an improvement pretty much right away. However, I'm a little over a month in (only started taking consistently in January) and am starting to get old symptoms back. I realize I need to work on a lot of things to get any kind of better, but I'm so overwhelmed and not sure where to start.

    Should I be focusing on methylation at all? I have lots of lab work...most things are normal except for low levels of inflammation over the years. I can post lab results if needed. Any advice at all would be so helpful. I'm feeling very down, as if there's no light at the end of the tunnel. Especially after reading that the average age of death for someone with CFS is 55!! Ugh! I would give anything for more of a life than this...to be a good mom and be there for my son. Anyway, off to sulk now (PMS doesn't help!!). Thank you in advance.
     
  2. aquariusgirl

    aquariusgirl Senior Member

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    I think if you google it, you will find that genetic SNP is quite common among white Europeans, something like a third or a quarter have it.
    That doesn't mean your doctor isn't on track with the metanx. You could be deficient in folate for the reasons that RichvanK & Freddd have posted about on this forum, and ultimately the DAN! movement.
    Lots of threads on methylation on this forum, but it's probably just one part of the treatment puzzle.
    The tough part is finding a doctor/professional who can help....
    Good luck
     
  3. determined

    determined Senior Member

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    USA: Deep South
    getting worse is not unexpected

    I don't think it's that uncommon to improve a bit early, then have symptoms return and even be WORSE than before you started. I went through several weeks where I worse than when I started. Meanwhile, you can start through the numerous threads about the possible cofactors that may be necessary to fully restore methylation. Don't give up! It can get better! I have had this illness for DECADES and I am getting older, but I'm also getting BETTER.
     
  4. therron

    therron

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    Hi Becky,
    I also am heterozygous for C677T (and the more dreaded 1298 as well). Methylfolate is a good place to start, but you also need methyl b12. They work together. Check out the basics thread for other cofactors, but be aware that start up symptoms can be intense for us! Avolid folic acid like the plague.

    therron
     
  5. adreno

    adreno PR activist

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    Metanx already includes both methylfolate and methylcobalamin.

    Some "side effect" that many have noticed when boosting methylation, is a drop in potassium levels. Make sure your potassium levels are good.
     
  6. becky82

    becky82

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    Sandusky, Ohio
    Thank you all SO MUCH for replying!! It means a LOT to me!!

    So Metanx is okay to take? I'm trying to figure out the protocols and stuff but I have strep throat and am really out of it. Went to my doctor today (he specializes in CFS/Fibro...has it himself even) and mentioned the Metanx and MTHFR to him. He's going to look into it which made me happy. I just started going to him and he seems open to thinking outside the box so I hope it works out.

    I did buy some potassium supplements from Target but not sure if they're any good or not. I have lots of muscle cramping as of late so I'm assuming that I did have a drop in potassium. I don't know though, I still have so much to learn but I hope working on methylation is a good place to start?? Can anyone recommend a particular thread for super brain fogged n00bs at this? Haha. If not, I'll keep working my way through and hopefully can start to decipher things. Just wonder what else I should be taking besides Metanx (or no Metanx at all)?
     
  7. becky82

    becky82

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    Sandusky, Ohio
    determined - I really needed to read your post today. Thank you and so glad to hear that you're improving after decades of being ill!! What an amazing story! Were you ever tested for the mutation or are you doing the protocol anyway?
     
  8. chilove

    chilove

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    Hi Becky,

    Keep on reading and learning little by little as you feel up to it.. don't worry.. it all eventually starts to sink in. :)

    I'm about 8 weeks into finding out I have a MTHFR hetero compound mutation and an autoimmune condition and adrenal failure... I know how you feel.. It's hard to become an expert in all this when we aren't feeling well. Oh, AND all my sensitivities increased and I developed EMF sensitivity for the first time ever in my life and so I can hardly be on the computer or phone at all! LOL It makes it very hard to research. I just ordered this book that was recommended on one of these boards: http://www.amazon.com/Reversibility-Chronic-Degenerative-Disease-Hypersensitivity/dp/1439813426/ref=pd_ecc_rvi_cart_1

    Try some magnesium baths and foot soaks in addition to the potassium for the muscle cramping. Epsom salt baths rock!!! :)

    Seems likes lots of folks here do well with potassium gluconate. I tolerate it pretty well up to about 2000mgs per day.. beyond that I get gastro symptoms.. I use the powdered form made by NOW.

    I'm doing the Gupta Amygdala retraining program and finding it very helpful in dealing with the stress and depression that can come with having a chronic illness.

    I'm much better physically now than I was 8 weeks ago.. still a long way to go.. but much better. There is hope! :)

    Best to you!

    Audrey
     
  9. baccarat

    baccarat Senior Member

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    Hi Becky,
    could you explain what your diagnosis means?

    In any case you can find the supplements list for the simplified methylation protocol here (post n.7)
    http://forums.phoenixrising.me/show...fied-Methylation-Protocol-Revised-as-of-Today

    You seem to be taking folate and B12 only. There are a number of posts where the importance of taking cofactors which are part of the protocol, in addition to folate and B12, comes up again and again.

    and you may also find helpful this video by Rich
    http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/$%7Bweburl%7D
     
  10. Rosebud Dairy

    Rosebud Dairy Senior Member

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    I also have a single C677T and I have found that I MUST TAKE MY POTASSIUM.

    Target brand should be fine. If you crash out, take a little potassium to see if that could be it. I think if you have OTHER low potassium symptoms, then 500 mg as a starting dose should tell you. Coconut water may be safer and faster for a potassium response. Women with heavy periods may need more potassium during their period, and for 5-8 days after as the body is making more red blood cells during this time to make up for the loss.

    I do well with metafolin, b-12, potassium, and a few other things.
     
  11. greenshots

    greenshots Senior Member

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    I'm glad you have a doctor who is at least open and objective but if he doesn't know the first thing about treating the methylation Pathway, he isn't the right one for you. This isn't something you can simply research in a few months, it takes years to become proficient in this highly complex pathway and you can't just play around with it without fully understanding it. There aren't alot of experts out there but they are out there.

    I wish you the best in getting your life back but be sure to do whatever hoemwork on this you're able to since no one looks out for you like you do.

    Angela

     
  12. becky82

    becky82

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    Greenshots, thank you for replying. I'm really concerned about the doctor thing now. I've always had horrible luck finding a doctor that understands these symptoms, and I'm not sure where I'd find one that knows much about methylation at all. Does anyone on the site have any recommendations regarding this issue? I'm in northern Ohio.

    I've been so horribly sick for the past couple of weeks and keep trying to absorb some info here, but my brain can't seem to handle it. I so so badly want to get better. It doesn't help that I feel so "blah" and brain-dead all the time. I've been on so many different anti-depressants in the last couple of years and nothing has worked. Everyone keeps saying that they "miss" me and want the "old" me back. It's so disheartening to hear this as I'm not sure I'll ever be the same again. I have no energy, no enthusiasm and am irritable and grumpy all the time. Still taking this Metanx and not feeling any different (maybe it's because I've been so sick with strep, the flu and who knows what else) so I don' tknow what to think. Just wish I could absorb some information here and didn't feel so clueless.
     
  13. drex13

    drex13 Senior Member

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    Columbus, Ohio
    Hi Becky,

    Here is a link to the heartfixer.com site, which explains methylation and treatment for various defects. As luck would have it, this guy is near to you. He is in Toledo. He is a heart doctor so I don't know if he sees other patients or takes patients without heart trouble.

    http://www.heartfixer.com/AMRI-Outcomes-Non-CV-Autism-Methyl Cycle.htm
     
  14. rydra_wong

    rydra_wong Guest

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    He's seeing me because I have high blood pressure and I told his receptionist that if he didn't see me now I'd be his heart patient later. If you can find an angle like that he'll take you. Anyway you can get your genes mapped by him and he will answer questions about them. He is really smart and was able to show me I had an adrenal problem I never suspected. He gets me BH4 much more cheaply than by prescription. And he is really smart. So if you have a weird issue because of your genes he knows what you are talking about and what it means medically and has a clue how to approach it. But he has no real experience with CFS. I am going to him for "genetic problems of a diverse nature" and we are proceeding by symptoms. He made me take a neurology lab and I failed it (11/13 measures way out of range) and we are working on that. We already got my bp under control but every so often we have to revisit that - because for instance I learned that a UTI drives your bp into the stratosphere, and I was SO happy to have him because he gave me a bp drug prescription I could take only in the event of problem and meanwhile I could adress the UTI and not have to be on longterm bp drugs. Etc. He is very helpful but only an expert about the heart. He also does weightloss - he injects with a pregnancy hormone which causes the body to mobilize calories for the baby and with no baby the calories are just lost. I am not sure why he's dabbling in that. He's the best doctor I ever had, but he is a heart doctor.
    Rydra

    He also does chelation...he wants to chelate me but I dont believe I have anything to chelate. I have enough bad genes to cause problems without having to suppose other things are causing my issues.
     

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