Anyone taking Cerefolin?
AnonymousSeptember 12, 2006 at 9:41 am
Hi, I’m new (again) to this forum. It’s been a long time since I visited and I had to re-register since forgetting my ID.
My neuro prescribed Cerefolin (a super high dose of folic acid) about a year ago. My CIDP is not motor-related, although I do have a “sense” of weakness in my legs and feeling as if moving through water. I would consider myself mildly afflicted, so I don’t want to offer false hope to anyone when I tell you that this drug has been an enormous benefit to me. As my doctor says, it’s not “rocket science” that folic acid repairs the myelin sheath.
I used to have episodes of feeling just really lousy with indescribable sensations in my arms and legs–worse at night. In a few weeks after taking Cerefolin, I quit having these episodes–with one exception: I had a stomach virus last December which caused an auto-immune reaction. It was the first time I thought I might actually be unable to walk. But it lasted only five days. That was the last time I’ve had a serious bout.
Now, although I can still tell I have it (a slight feeling of weakness in my legs and some fatigue), I am so much better than I was five years ago.
And then, in July, my neuro prescribed a newer version of Cerefolin that is able to deliver the “juice” to the nerve cells more effectively. I am continuing to improve. My 85-year-old mother is taking it for it’s ability to lower homocystein levels and improve memory.
I’m just wondering if anyone else is taking Cerefolin and what the effect has been. By the way, IViG was not helpful to me. Apparently, it doesn’t work as well for patients who have sensory CIDP rather than the motor version.
AnonymousSeptember 12, 2006 at 2:59 pm
It sounds very intresting with the folic acid. I have predominantly sensory symptoms, tingling and pain in my feet.
How were you diagnosed with cidp, did you do EMG and/or Lumbar Puncture?
I´m very intrested cause your symptoms seems similar to mine.
AnonymousSeptember 12, 2006 at 6:37 pm
I was diagnosed in 2001 through an EMG. I refused the lumbar puncture and my neuro doctor said it would not have proved more than the EMG already showed him. I had five IViGs in one week, followed by an additional five every thirty days or so. I could never tell any difference.
I’ve always been able to work, though feeling pretty punk for weeks at a time. Strangely enough, Xanax is/was the only thing that brought me out of the sickly fatigued feeling.
I also have Graves Disease which seems to go along with CIDP in a lot of patients (as does diabetes). It’s important to make sure your thyroid is functioning–or if you are on thyroid med, make sure it’s at the right level. I stay slightly overdosed because low thyroid really aggravates the CIDP symptoms.
This new Cerfolin specifically says “with NAC”. There is a cheaper generic but my neuro said some of his patients have told him it doesn’t work as well due to absorption, I think. He’s giving it to MS patients and a friend of the family who is also going to him has just started taking it for some other neuropathy problem.
I don’t think there are any side effects. I’d say it’s definitely worth a try. If your doctor doesn’t agree, you might want to try another doc. My primary care doctor loves the stuff. It’s primarily advertised for memory loss. Here’s the website: [url]http://www.cerefolin.com/[/url] Hope this helps!
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