posted
Here's the basic concern. I just happened to stumble into a LLMD's office in Dec of 2006 looking for answers to the constant urethral/prostate pain/irritation that began Jan 2006. A friend of mine worked in his office and though very highly of him as a doctor so I figured what the heck.
He asked me a bunch of questions and ran some test and in the end he determined I had lyme disease and suspected Bart as a possible coinfection based on the Fry test and that it could also be a source of the pain (Babs test came back dirty as well).
The only other things going on with me was I always seemed to have sensitive skin and was prone to random rashes (which have since mostly disappeared while eliminating foods on my lyme/yeast diet),occasional sleep issues/fatigue and had occasional aches in my knee (as well as lower back & toe...these also happen to be past injuries though). Anyway...no neurological stuff.
I have to add that at no time did my doc ever till me to change my eating or drinking habits. I'll take fault for this as well for not asking him, but for the most part I felt normal so really didn't think about it...why would I. I didn't know these things were so important in lyme.
Anyway I did three months of Mino, over that time the only thing that changed was my sleep symptoms got worse ( somehow I was never told to take a probiotic as well I might add). Two days after a crazy weekend of partying (don't worry, I don't drink now..I figured it out) I suffered from extreme insomnia...could not get to sleep. Also this feeling of "being out of it", like I had inhaled fumes or something came on. It lasted 2-3 days until I finally stop taking the meds. I tried taking them again a few weeks later and boom. Same thing...no sleep/spacey feeling.
I said the heck with treatment...I was obviously feeling worse than I ever did before so I stopped and didn't take any antibiotics for 18 months. Not once did I experience anything like describe above. No Nuero symptoms at all. I had the same old urethral/prostate issues & occational sleep/fatigue and that was it.
With the positive lyme test haunting me I went back in Dec 08. Actually that's when he did the Fry test and then suspected Bart or Lyme...that's right (just remembered). That's why I decided to try it again.
So again we started out with Mino & Zith (this time with a probiotic luckily, but still not briefed on diet or abstaining from booze)....3 months into it one day I got a massive headache, had a short period of disturbed vision (trouble reading words), and my right hand tingled for a bit (this has never reoccurred other than this one time, of course I have made positive changes in my lifestyle as well since then).
For a solid week I had a headache, and was feeling out of it...my doc then added Rifampin and then I started getting a strange brain buzzing/buring feeling, short term memory went to crap, etc,etc. Finally I stopped everything. Sure enough felt better. Tried the drugs again and worse. Stopped everything. Thought all was well.
3 week later I noticed a very subtle reoccurance of feeling spacey, brain buzzing, etc...I eventually linked this to occuring only after consuming sugar, starches, fruits, dairy, nuts, etc, etc. I told the doc and he didn't say much about it except try and stay away from sugar & starches. Meanwhile on my own I discovered canidida and aggressively began eliminating things it said to take out. Things are much better.
Here's my question. I never had any neuro symptoms before the treatment with abx. I never had any nuero symptoms during my 18 months off of abx. They have only occurred 3 months deep into abx treatment and seem directly tied to what I eat.
The doc doesn't seem to think much of this connection and thinks it's all lyme. This is important to me though.
If my nuero symptoms are being caused by or worsened by some type of yeast issue or damage to my digestive system then I'd rather do what we have to do to fix that and then go after lyme/etc. I work in the transportation industry...the nuero symptoms are the only things that are keeping me from work.
Everyone is telling me I'm suppose to feel spacey, etc, etc, bugs being killed, etc,etc, etc, but for me it seems like i can not only directly control its intensity by watching what I eat, but make it go away all together by stopping abx.
Also we have to remember there is absolutely no change in my diagnosed symptoms...just the new nuero symptoms.
Can abx over time be a culprit? I know the description of symptoms above all find their place somewhere in your typical lyme case. But they way the appear/disappear and seem directly related to long periods of time on abx (no other times) seems odd.
I have to add since starting on no Dairy, Sugar, Carbs, fruit diet: Headaches rarely occur; Memory is much improved if not an issue, vision not an issue, sleep is 8-9hrs, rashes are not occurring at all. The remaining nuero symptoms do seem to still be connected to what I do or don't eat.
Posts: 101 | From Living in the Now | Registered: Mar 2009
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bettyg
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posted
up, anyone else have input here .... thx
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