I was bitten 10 years ago and got Lyme disease and also other diseases that are common in people who get Lyme- HME, Babesiosis & Bartonella.

I am the support group facilitator for Santa Cruz County, California and have been for the past 8 years now. Outof maybe 350 people who have come through in that time, maybe 5 JUST had Lyme. MOST peopple have MULTIPLE infecetions which stay & cause symptoms if they are not treated.

I got very ill within a year. I was only initially treated for a month by IDSA types (there is a treatmetn divide in Lyme disease, IDSA favors short cheap tx, ILADS favors treatment until resolution of symptoms). I was not completely well and over the next year I accumulated syndromes- IBS, RLS, TMJ, MCS, FMS, CFS and THEN I began to have bad neuro problems that they called "a progressive multi-system nueorlogical disease triggered by Post Lyme Syndrome". What ILADS would call chornic progressive neuro Lyme.

I developed progressive weakness leading with my left side, slurring, micrography, chorea major, chorea with athetosis in my left hand, bradykinesia and choking and falling. Also progressive numbness from my toes upward progressively had gotten to my knees-

Finally I disocvered that the treatment controversy EXISTED, I had just believed my docs who told me there WASNO FURTHER TREATMENT!!!!
But I found a Lyme doc and went on oral antibiotics.

They did NOTHING, for a whole year I declined and I had progressive encephlaopathy and began to go into demetnia.

We took out a second mortgage because at the time, unlike now where it is very cheap, IV Rocephin was still on patent only by Roche and was expensive,
and we paid $50,000 cash for 9 months of Iv Rocephin.

The first 6 months I just kept getting worse. My Mom andmy husband were discussing a tertiary care facility behind my back I found out later, as I could no longer cook, drive or safely watch my child (hard to watch her when I couldn't remember her name!).

THEN one day there was a change. A tiny change. One tiny part of my left hand felt no pain!!!

ANYWAY, from months 7-9 I got to 95%!!! but for a whole year I was so weak I still could not run for a whole year.

Now I ahve been normal for years now again.

I had Babesiosis and Ehrlchiosis &Bartonella. Bartonella is cat scratch disease and they just learned it was a TBD a few years back.

So unless you are treated with meds for the right things you won't get better.

A truly Parkie Lymie is rare in my experience. In my experience it CAN happen that someone who is Parkie has Lyme & TBDs, I know that from my own experience. MS/Lymies, firbo Lymies, are a dime a dozen. MS is OFTEN Lyme misdiagnsoed in my experience of leading the local support group for 8 years. Parkie is rare, but I met a woman from Sac who had been diagnosed Parkie for YEARS who had Lyme and got recovery. So it does happen. And I had more Parkie symptoms than others...

If I had a loved one diagnosed Parkie I would make sure they got tested for:

BABESIOSIS
HME EHRLICHIOSIS which can make Lyme more toxic & neuro
HGE Ehrlichiosis

and I would make sure they got a LYME DISEASE WESTERN BLOT WITH BANDS

CDC SURVEILLANCE= CDC positive or not

The average woman has 4 positive WB bands
The average man has 6

CDC Surveillance purposes is 5= so there is a gender bias.

CDC negative does not mean the test is negative- there are Lyme specific bands- like band 39 kda. If you have band 39 kilo dalton antigen there is only ONE way to get it- through the Lyme spirochete. it is species specific.

Anyway, I am always available to anyone with questions re Lyme-
Nope, not everything is Lyme, ESPECIALLY Parkinsons!
MS is another story- we have a local MD who rediagnoses all his MS patients Lyme!!! And they have all responded. Parkinsons is RARELY Lyme disease,
but it CAN be. For me it was Lyme/HME/Babs combo that produced those symptoms- and the varying coinfections matter- HME makes Lyme WAY more neuro if you have it too-
Best wishes,
Sarah