methylation protocol, feeling wired

Discussion in 'Fibromyalgia Main Forum' started by donnaba, Nov 17, 2009.

  1. donnaba

    donnaba New Member

    Hi, I hope it's okay to post on this board. I was here years ago, then got diagnosed with MS and then lyme. I have had chronic fatigue as a symptom for over 10 years. I guess that's why my lyme doc put me on the methylation protocol. I tried 1/4 dose and it made me feel like I was on speed, very uncomfortable, increased heart rate, shallower breathing, and decreased sleep. It seem like everything I read said it will make you tired, but I had the extreme opposite reaction, anyone else? I actually took 1/2 of the neurological health formula one day, the actifolate and folapro the next day, and the B-12 and phosphatidyl serine the next day. Each day I had a speedy feeling, the worst being the folate day. Just wondering if anyone else had this experience and if it's wise to continue this treatment.

    Thanks, donna
  2. richvank

    richvank New Member

    Hi, donnaba.

    You may need to start with smaller dosages. Some people start with only "sprinkles" of the folate-containing supplements.

    Also, I don't know if you are on a thyroid hormone supplement, but a few people have found that they had to decrease the dosage of these, or stop them entirely, because their thyroid function improved on this protocol. If this is relevant in your case, it should be done in cooperation with your doctor. I note that increased heart rate and insomnia can be symptoms of HYPERthyroid.

    I hope this is helpful. I have suggested that Lyme can lead to CFS in people who are genomically predisposed. Some of the Lyme doctors have started testing for methylation cycle block, and it is showing up in some of their patients. Have you been tested? Vitamin Diagnostics offers a panel for that. I'd be interested to know who your doc is. If you prefer not to post the name, you can email be off the board at richvank at aol dot com. Thanks.

    Best regards,

  3. Catseye

    Catseye Member

    Hi Donna,

    Get a Comprehensive Digestive Stool Anaylsis done and go after the gut dysbiosis while you do the methylation protocol. I did and once the dysbiosis was fixed, the liver slammed back into working order not too long after. Unfortunately, my dysbiosis was so bad and had gone on for so long, it took about a year to fix it. Just telling you that so you don't give up too easily. For that year, I did several CDSAs and was able to watch the progress. I, too, started with 1/4 folapro and such. Now I can take a whole folapro or intrinsic B12 and not feel bad! I actually have stopped the folates. I have just been feeling so great I didn't order any more after I ran out the last time.
  4. donnaba

    donnaba New Member

    Richvank I sent you an e-mail.

    Catseye, thanks for your reply. I have had some gut issues,and took vanco for that, but guess I should be tested to see where I am now. did you have similar symptoms to mine when you 1st started the protocol? I'm glad your feeling great!

    take care, donna
  5. Catseye

    Catseye Member

    Hi Donna,

    Vanco is just an antibiotic so it will only make our kinds of gut issues worse. It is known to destroy lactobacillus, for one thing, which you need. Our gut issues are way too complicated to be taken care of with a drug. In fact, drugs are the last thing you need, they will further complicate the dysbiosis and further stress the liver.

    I didn't get speedy symptoms, just felt too bad if I took too much folate. But when I took the 1/4 dose, it was making me feel better. I actually just finally stopped taking it about a month or two ago. I don't seem to need it anymore so I'm assuming my liver is making it's own folate again.

    You really do need a CDSA to see what kind of shape the gut is in. It can really impede your progress and healing if it's all screwed up. And, of course, you need someone qualified to interpret it, NOT a medial doctor unless he has had additional specific training. See for more hints about the CDSA, what to do and where to find a doc.
  6. donnaba

    donnaba New Member

    Thanks, I have heard about ldn for ms but haven't tried it. I did try a couple of the standa,rd meds for ms, whew talk about terrible side effects!

    Just not sure what to be treating now, did the lyme cause the ms so I should treat the lyme, or are they seperate? My doc thinks it's lyme caused ms so I guess I'm going after the lyme.

    I think my doc wants me to try the methylation protocol before further lyme treatment because I've had bad side effects with everything i've tried so far.What a bunch of fun...

    Take care, diana