I went back and read your lyme story. Let's see, positive LD bloodwork, rash, the full range of LD symptoms, could it possibly be---LYME DISEASE?

I don't take CJD or mad cow lightly at all, and it's not insane to worry about it. And the brainfog, psychiatric sx, apathy, and motor problems do overlap. But, taken all together, your symptoms point strongly to LD and coinfections, not to CJD/BSE. So hang in there with treatment.

It's so easy to start obsessing on stuff when you have LD. ...You've had the infection for what, 2 years at least? You haven't been treated for long, and you didn't start with a competent LLMD, so it's going to take a while.

It doesn't seem that you were treated with any drugs that would combat the cyst form of LD, and Rocephin has been reported to be the drug that causes the greatest conversion rate to cyst forms.

I'm not clear on the timing of your tests, but you did get a positive PCR, right? Was that post treatment? Because that's a powerful indicator. You also had positive IgM after abx, right? Indicating current infection. And you did respond to certain abx with a clearing of brainfog etc, at least for a while? Which would not happen with CJD.

I'm one of those that never or weakly tests positive; all my treatment has had to be evidence based. I completely understand how rotten it is not to have clear serologic evidence of infection.

Your history seems to have been one of you being given the works by non-LLMDs, and never having had an effective, long-term, combination abx. Also, from the stuff you posted, it doesn't look as if you were treated for coinfections. I'm now getting the babs tx, and what a difference it's making after years and years of LD.

Finally -- there's always the yeast question, which can play merry hell with you after abx, and really muck you up both neurologically and physically.

I don't know where you are right now with treatment or LLMDs, but there are a lot of folks whose sx are largely and floridly neurological. I do think it's the LD that's messing with you and making you scared of CJD. It's always wise to keep considering other potential causes for your symptoms, but from what I can tell, you're very solidly in the LD camp and really need to pursue LD tx aggressively with a good LLMD. If abx don't do the trick there seem to be other very viable options, you just gotta stretch for them.

Check out Tom Grier's Why we are still sick (hard to read in this online format; I pasted the text into a Word document) at http://www.wildernetwork.org/TomGrier.html

Panther has posted some interesting info about B12 insufficiency and neurological effects -- might be worth a try for you, too?

All the best. Wish this could be easier for you.
 

What I DO have:
Muscle twitching all over my body;
face,limbs, trunk, ect.
several kinds of twitching:
small, localized fasciculations just
underneath the skin. Some are like buzzing
and some are wave like movements that move around and can't be felt, only seen.
then there's a pumping action that occurs
in different places (the right side of my right elbow did this for weeks every time I tried to stretch it would twitch uncontrolably) and also whole muscles sometimes jump. Like my tricep or bicep or thigh muscle. usually in rapid succesion.

difficulty with abstract thought.
poor short term memory
brain fog.
Bad math skills and reduced spelling
myoclonus 2 types. (when I try to sleep, it wakes me up) and another that happens when I'm awake.
constant, high-pitched tone in my head
bad floaters (regular squiggles and bizzare swimming specks)
Tremors that usually occur when I use my muscles. Examples: If I scrunch up my nose, my face tremors, if I make a tight fist, my hand shakes. anytime any muscle tenses up, it tremors.
Occasional lancinating or aching pain the trunk or limbs (not common)
I think that's most of it....
-tim

 

Tim, did you see terter's posting on myoclonus in Medical? http://flash.lymenet.org/ubb/Forum1/HTML/025741.html

Sounds so much like what you're going through.
 

Have you had a WB with Igenex?? My test did not come up CDC positive, but I KNOW I have Lyme. I'd had previous treatment with steroids and even methotrexate, so I don't think the WB could have come out positive after that and the fact that my immune system is so far down, it couldn't possibly register any antibodies.

Don't be too concerned about not improving with 4 months of treatment. I know that's awful and I felt hopeless too at that point. It took me an entire year of treatment before I felt any better.

You may have had this alot longer than you think, so be patient. Don't give up too soon! I'm now on year 4 and still on abx.

Be sure you get tested for Bartonella ... it requires different meds than the ones for Lyme.

Gotta run.......keep on keepin' on!

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oops!
Lymetutu

 

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Do unto others as you would have them do unto you.