sdarrah Yes I do continue to have ataxia symptoms but they come and go...trying to figure out what makes them worse is almost impossible and frustrating..could be trace amounts of gluten or could be collateral damage from infections?Have you discussed your symptoms with your doctor? What is their explanation for cerebellum ataxia on the MRI?

blueize said...
sdarrah.... I was diagnosed celiac in 2008 through bloodwork and endoscopic biopsy. I have never had any doctor tell me for sure that is the cause of my symptoms. I follow a very strict gluten free diet but as I said before even trace amounts can be present in “so called” gluten free food. The regulations are not that strict and then there is the whole issue of medicine and supplements containing gluten. I do the best I can to avoid it. To further add to the confusion I had ataxia and some related issues when I first got sick with Lyme and babesia. When I feel I have been “glutenized” it takes me awhile to recover.Hope this helps....you can always get tested to rule out celiac.

Blueize my first symptoms also were ataxia related though mild off balance then the handwriting difficulty and finally very difficult to speak. I am so confused as I have been treating for Lyme, Babesia and Bartonella for the last 2 years and my list of symptoms are gone, except the Ataxia which has ruined my life. Do you still experience the Ataxia symptoms? I am going to ask to do IVIG next as I have exhausted all other treatment with my LLMD.

Orbitingaround hasn't been on the forum for several months.

So, not sure if you will get a reply.

And his email address isn't enabled.

sdarrah said...

orbitingaround said...
I’ve had deteriorating handwriting, slurred speech, balance issues, foot dragging, and have fallen down a few times -- I’m guessing from Bartonella because that’s my worst infection.

Before I was diagnosed with Lyme I collapsed with full body spasms and was taken to the hospital (they had no clue). I have lesions all over my brain and had been misdiagnosed with MS, with multiple brain MRIs over the years.

Those symptoms were never constant, they were always worse in the heat and have all pretty much gone away. I only treated with herbs and LDN, no antibiotics.

If you are still an active member, I continue to have Cerrabellur Ataxia; off-balance, slurred speech, Loss of fine motor. I am currently treating w/ diflucan for Candida albicans. I had a recent OAT test that revealed it and also high markers for mitrocondrial damage. I am so afraid I will never get well and no Doctor to date has diagnosed the cause even with mycotoxin test found 10 years of daily mold exposure and treating with binders has not lessoned any of these symptoms, I am looking for any suggestions at all.

I assume you are treating with a doctor so I apologize if this is info you are already aware of.

Here is Dr. Ross's take on mitochondria repair: https://www.treatlyme.net/guide/mitochondria-dysfunction-repair-lyme

From Dr. Horowitz's book "How Can I get Better" he recommends:

* NT Factors or ATP fuel, 5 per day for two months, then 3-5 per day
*CoQ10, 200-400mg a day, only if not on Mepron or Malarone
*Acetyl L-Carnitine, 1000mg, BID
*NADH (Enada), 5mg per day
* He mentions D-ribose, but don't think he uses often due to potential side effects

There is some thought that ozone can be beneficial for mitochondria. I'm not sure how true this is. I know one of my LLMDs is a believer.