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

wow - thanks for the post! Valuable information - what a tribulation!

paula

Gosh, I just feel so darn lucky!!! I get to be normal again. There are not many people who got so bad as I did who have been normal again for years.

I like your sig line, I do life one day at a time too, Paula. That helps with life itself.

I had tremor too, it was actually really embarassing for me to have the symptom set that I did because I am clean & sober and my progression inculding balance problems, slurring of my words, getting really slow and
tremor and sudden spastic falls- anyway, I found it embarassing in that I
was afraid people would think I had lost my sobriety. By then I was so weak
I did not go out much anyway, but I stopped wanting to go out when the slurring and tremor started- my hands would shake badly- because I became so self-conscious that people would think I was drinking.

Anyway, I am glad to be alive and be able to walk and oh, I had claw hand too- I often as a way to get grateful just open & close my hand and that simple act makes me happy because when I was sick I could not do anything
not even move my hand normally for 2 seconds!

So Lyme CAN present as Parkinsons but it is rare in my experience- the woman in Sacramento did get her life back though- like me she did longterm IV Rocephin- and she like me ALSO had Babesiosis.

Tremor is a common Lyme symptom and many Parkie symptoms are common lyme symptoms- there is crossover in symptoms-

In our local group we have never had a Parkie person in 8 years now- the closest would be me- but it has been known to happen- more commonly we've had over a dozen MSers, hordes of firbo & CFSers, 3 lupus people, 4 ALSers, 1 Alz, 1 RSD, 1 other kind of muscular dystrophy I always forget (dermomyocystis?) and a few people with movement disorders.

Take care all-
Best wishes,
Sarah

This is very interesting to me as my husband had a bullseye rash several years before his pd diagnosis. He was NOT treated properly for lyme. I don't dispute his pd diagnosis, but look to pd as a result of improperly treated lyme. He was never tested for any of the other infections, but a nephew was diagnosed with ehrlichia after it was feared he had leukemia as the symptoms are very similar. I don't know that what we have here is true lyme, but another form harder to detect through tests. My own form left me temporarily weak on one side, slurring words, and unable to think clearly. Nothing showed up on tests, but I had the tickbite and the rash and so was given proper treatment.

My advice is not to let anyone tell you that tick fever is not deadly serious whether lyme, stari, Rocky Mountain Spotted Fever, ehrlichosis, and dozens of others.

I know some roll their eyes at this theory of pd, but it just seems to me to be too much of a coincidence to be discounted.

Why don't you get your husband evaluated by a Lyme doctor? There is a Seeking Doctors section at lymenet.org which has referrals for ILADS doctors. Or if you tell me where you are I can find you one!!! Seriously. it would be no problem and could help!!!

I understand why they roll their eyes. We Lymies come around crowing,
"X can be Lyme, X can be Lyme!" The facts are what they are, it's all dcoumented, it's all true, Lyme can manifest as almost anything just like syphilis does- it just depends where the spirochetes go in your body and what coinfections you have. But no wonder people roll their eyes!!! if I didn't know the SCIENCE, I would too.

To be fair, we do, too!!! We roll our eyes at Lyme meetings going, "Those poor people diagnosed firbomyalgia!" "Those poor people diagnsoed with MS!' because as Lymies we know those things are often TBDs. And we get to get better while other people stay sick and just treat symptoms!! I feel blessed as can be.

We don't roll our eyes about Parkinsons! God only knows what causes most Parkinsons.

It can be Lyme but it is rare- but it can be- RATHER- it is NEVER Lyme ALONE, it can be a mixed infection of Lyme/Ehr/Babs/Bart in my experience- I can't believe I forgot him but I had completely forgotten Irving, an old group member when we first started our local group- he was very very very Parkie!!! he died- not of disease- of iatrogenic medicine from local hospital meds error- but he and I and that woman from Sac- none of us had LYME, we ALL had mixed infections including Ehr, Babs & Bart & Lyme-

I wonder about Parkies- I wonder! I have no idea what causes most Parkinsons.

MS is another story, we have had SO many MS people turn out to have Lyme-and so many Lymies develop MS- and it has been thoroughly documented time and again in the mainstream medical literature that there is no differential diagnosis between Lyme & MS except response to treatment- we've had multiple Lymies develop MS after Lyme diagnosis- and there are so many documented autopsies of Lyme/MS- I dont' wonder about MS. There is no Differential Diagnosis between Lyme & MS, most people don't realize that-!!

Parkies? Maybe there is some TBD undiscovered yet- or just a certain combo of strains of coinfections-

Or more likely as well some environmental or genetic thing that trips the same trigger that that certain combo of infections CAN-!!!

What most people don't realize is that Lyme treatment usually consists of treatment for MULTIPLE tick borne infections, and each disease combination of infections/diseases has their own presentation.

In the world of Lyme- this is what I have seen over the years as a support group leader for 8 years-

* Babs or Lyme secondary stages- FMS

* Lyme ALONE or Babs/Lyme tertiary stage- MS

* Lyme/HME Ehrlichiosis or Lyme/Cerebral Babs- Alzheimers

* Babesiosis ALONE- RA, JRA, lupus or CFS

* Cerebral Babesiosis- autism (Babs is a piroplasm like malaria
and like malaria it can invade the brain)

* Ehrlichiosis ALONE- leukemia mimic, CFS, IBS, TTP

* Lyme/Babs/ AND TBE Variant Virus, Powassan/DTV- ALS presentation

* Lyme/Babs/Ehr/Bart can present as Parkie

And I didn't EVEN bring up Bartonella except in the last one!

There is a GREAT article on the differing presentations of Bartonella strains- there are many human pathogenic strains and EACH presents in a different distinctive way- just among STRAINS of ONE TBD!!! So just think, you get all those diseases and all those strains...

There is a paradigm shift coming. This 15 year old Lymie I know, Victoria, who manifested as a seizure disorder (bad multiple seizures daily, horrible, poor kiddo) said to me, well, wrote to me, "It's not a question of if, but when." I do believe that. NO, not everything is Lyme or TBDs- but a lot of things can be.

Why? I know Lymies sound crazy. Because people think of it as rare.
The Russians did a study (before there was no USSR*)! and found 1 of 10 people in Russia had Lyme disease.

Here, in California, they did one blood survey of a California community and found that 23% were infected with a TBD. Yup, 23%!!!! And of that, 18% was Babesiosis. They were shocked, the CA Dept of Health, and they did TWO MORE blood surveys of two MORE California communities- and they foudn infection rates of 3.5% and 16%!!!!

Think about that before you immediately go, "Crazy Lymies!"

Babesiosis is a very, very common disease in California, if you extrapolate from that data, which you are supposed to- becasue they purposely chose those two latter serosurveys based on the factor of... TICKINESS- so that they COULD extrapolate from that data!!! the 3.5% was from an area they had designated NOT TICKY and the 16% from an area they designated VERY TICKY. yet the initial data that they accidentally picked up- not expecting such a high rate of Babs- was EVEN HIGHER! Soo.... we are talking unknown epidemics.

**************************
What makes me MAD is that for a whole year my regular doctors just let me get worse- adn would have diagnosed me with whatever neuro disease i fit best as we continued- they were just doing symptom treatment. I had one Rheumie who was aware of the double standard of care in Lyme and she actually told me, "Sarah I know you have Lyme but I can't help you." She has done the same thing since to other Lymies, even given them the name of the doctor in SF who treats Lyme. ANYWAY, I was doomed and then saved, the way I lived it, told there was NO treatment- and I was going through what I call my Ted K phase- I was anti-technology at the time (without the bombing)!!! We didn't have TELEVISION or the INTERNET!!! no kidding (no rocks, only tomatoes please*)! So I truly did NOT KNOW there were OTHER Lyme doctors who treated it!!! I was just getting worse & worse- and they LET ME!!!

Anyway, I feel very blessed to be alive and to be able to run and walk and talk. I was able to go back to work full time, as, drum roll, a loooow stress job as an inpatient drug & alcohol counselor with the criminally inclined severely mentally ill, a fun and low stress population*)! (joke*)! (they were fun actually, except the sociopaths they were not fun, pedophiles, etc, other than those they were good people mostly). And was able to remarry (got rid of husband who called me ugly because my eyelids got swollen from hypothyroid- thank god that went back to normal!) and have another baby and then have been home again ever since as a stay at home Mom & ardent (and annoying, I KNOW, some people find me VERY annoying) Lyme activist (and cat rescuer and pygmy goat advocate!).

A word about what I wrote above which wasn't meant to be offensive to anyone- regaridng the embarassment I mean of that symptom set. By that time I already had had incontinence and also it had affected my thyroid and I had massive facial swelling so I looked not like me, I looked like, as my husband at the time kindly informed me, a monster. So with THAT, funny enough, I was not embarassed, I was defiant, it was still ME darnit. but the symptoms evocative of drunkenness were a different matter- my sobriety is #1 in my life, to this day- but other things I was not ashamed of- that one might have supposed I would have been-

Anyway, ANYWAY, your husband- yes, that does sound VERY suspicious.
I would get him to a LLMD!! A real one. An ILADS one.

100% of the so-called Lyme experts that are IDSA affiliated are idiots re Lyme. The Attorney General of CT Richard Blumenthal is investigating the IDSA Lyme guidelines as medical FRAUD- which they are. If you look through the authors own work they contradcit themselves historically. A good book on the Lyme controversy is Bulls-Eye by Jonathan Edlow, MD, a Lyme MODERATE (they exist!) and another good historical one is The Widening Circle by Polly Murray one of the discoverers of the epidemic... the ILADS guidelines are the guidelines that save people.

I can't believe I forgot Irving!!! He was early on in our group who was very Parkie like me- his tremor never went away- he was a former land surveyor from New Jersey!!! His other symptoms got betetr, but his tremor stayed. He died from an accidnetal med overdose from a lcoal hospital, not Lyme tx related.

But He and I AND the woman from Sac all had mixed infections producing our Parkinsonian presentations- Irving had Lyme, both kinds of Ehrlichiosis (which can be seronegative even when acute & fatal), Babesiosis & bartonella, I had Lyme, HME Ehrlichiosis, Babesiosis & Bartonella, adn the woman in Sac was also being treated for all of the above except Bart- Sooo, I would get your husband tested for Babesiosis, Ehrlichiosis, Bartonella (which is cat scratch disease which they discovered 5 years ago is tick borne and widespread)-

ANyway, Take care all,
Best wishes,
Sarah