Every so often, Lyme Disease presents into various forums where I have been a member (perhaps even, here, before I "arrived"...and if so, please bear with me on this). I wonder...have any of you ever had a dx. of Lyme Disease in your "history"? I ask this because Doreen DID have a dx. of LD approximately 11 years ago, discovered quite unexpectedly during a routine physical where the Lyme factor was present in her blood work. Subsequently, she saw a rheumatologist who ordered two specific/specialized/sophisticated tests for LD both of which proved positive for Lyme. This was curious in that, to our knowledge, Doreen had never actually been bitten by a tick, i.e., there had not been the obvious/typical bite attributable to a tick. At this time, she was given the prescribed antibiotic (Doxycycline)...BUT, this was long "after the fact"...certainly not the immediate procedure that is so necessary after one has been bitten by a tick. From the very beginning of Doreen's PD dx, I have questioned the "coincidence" of her having had the Lyme factor present in her system. Although there was no physical evidence of a tick bite, still, THREE separate tests...including the most up-to-date test for Lyme revealed that somewhere along the way, she had been in contact with a tick and had contracted Lyme...certainly cause for me to have questioned the PD dx which had been based on her having been given Sinemet and having had a positive response, i.e., her tremor was eliminated...but I wonder...is it possible that she responded to the Sinemet simply because she was "neurologically" afflicted/infected, but not necessarily was it PD. Was it LD or PD? Doreen's only symptom at the time of dx with PD was a slight right-hand tremor which has progressed very, very slowly to her left hand. I should add that her handwriting was micrographic, but her handwriting had ALWAYS been very, very small throughout the 30+ years that I had known her...letters always very small and tightly squeezed together so that it seems that the micrographia may NOT necessarily have been related to the PD...but, of course, a neurologist would, necessarily, factor this into his dx so that the handwriting was also confirmation of the PD dx. In the past, I have read about misdiagnosis of PD so that this constantly preys on my mind, and I find myself asking the question: "Does Doreen really have PD or is her tremor simply an outcome of the "neurological" Lyme Disease? Or, is this "wishful thinking" on my part? Thankfully...to this day...9 years + since the PD dx, Doreen's only "real" symptom is the tremor in both hands...still more prominent in the right hand as it was initially. All other "symptoms" have been the result of her taking PD medications that have caused the unwanted adverse side effects related to these "meds". I suppose all this is irrelevant EXCEPT that it has occurred to me that she is taking PD "meds" which MAY not be necessary for her to take, especially in that she has had some very severe adverse reactions to these "meds". I've made my thoughts known to both neurologists Doreen has seen and they seem not to give much credence to what I've had to say about all this, but I know that they can and do make mistakes...and from what I've been able to determine, they really have very little knowledge of Lyme Disease. All this having been said and as I sit here typing this to all of you, I have to question my own thoughts...and I am inclined to think that "wishful thinking"could be at the bottom of my inquiry. I wonder what you think. I would appreciate any input that any of you may choose to give me.

As always, thank you for all that you have done for me as Doreen's carepartner.

Therese

Hi Therese,
Without wanting to most of us within this group have become very knowledgeable about P.D.
In fact I'd say more knowledgeable than the average Dr because we live with it always and it isn't about to go away.
If we try and ignore it or think we don't have it somehow the P.D. comes back to bite us on the bum!
I don't know much about L.D. so won't try and answer those queries but does Doreen seem better after a dose of Sinemet?
Does her handwriting improve? Cogwheel rigidity lessen? Finger taps speed up?
These are the sorts of things which when the Sinemet kicks in during the early days of a fairly definite diagnosis of P.D. will tend to improve quite dramatically.
Hope this helps.
Lee

the tremor - is not the all together end all sign of PD,
fletcher keyser ring in the eyes if found is called Wilson's disease, and it is fatal -but can be cured by detoxification if found is almost always cureable -
-the mad hatter illness - because they formed hats over mercury forms caused a tremor and insanity, dentist have a high rate of suicide caused by amalgam fillings
as for Hitler, idiots said he had PD -but Hitler died of Neuro-syphilis...
yes -too many what ifs - lyme disease is an alltogether possibility...
because who cares if the diagnosis is wrong - because just maybe it is -and it can be cured... I knew of a woman who was misdiagnosed, and she never had PD... she had been on PD meds for years -she had a cherimalformation in her brain -I even knew her brilliant neurosurgeon -because he is my friend...

I must put this in writing even though I am very tired...
I have seen miracles they told my big sister she had cancer, metastaic -cancer third stage even -the doctor had the ballsz to tell my sister, unless she took the freakin chemotherapy -she would only live perhaps 2 years tops...
that is total BS - because she did not take the freakin chemo and the oncologist who said that to her, just dismissed her as a patient because they had to do two bloods tests and 2 CT's and they found absolutely no trace of cancer in her body, we -my family was praying for a miracle and she received it, although we did the alternative medicine with only the study of -myself,
my sister who had cancer -she is also a P.hD her husband and my sister who is an alternative medicine therapist in France...
you should never take a death sentence from an idiot person with a phd on his tag -they can not tell you -of what
you may die with -unless you allow them to kill your hope...
sooooo
never give up -never let them count you out!
my entire life I have seen miracles - my mother and both of her parents died
with cancer...cancer is only deadly because the freakng pharmma wants
to you to take their poison - and pay for it and then die...
doctors should not peddle chemo for the pharmaceutical companies!
sincerely,

My husband also had a diagnosis, not as the result of a blood test, but from the typical bullseye rash. He, however, was told "don't worry about lyme, people overact" and was not offered antibiotics until much later. Now, PD, and I agree, as he has a good response to parkinson's meds. I often wonder about the initial infection as the cause, though.

I later also had the rash, but was given antibiotics very quickly. I still initially had some neuological symptoms that went slowly away. We do live in an area where tick bites are very common. We have had one neighbor die from ALS, several diagnosed with MS. several with neuropathy, several with arthritis. Brother-in-law is still struggling with problems related to his diagnosis. Probably back to blood barrier, or some such. Husband still does some better when given strong antibiotics, though it is not permanent.

I say all this, not arguing about the PD diagnosis, but as a theory as to "why."

MJF had lyme disease but was treated and cured of it. trfan, is your husband still considered to have lyme disease? Yours and therese's are good questions for the lyme disease forum if you want to visit there. From what you said, it sounds like your husband was never actually cured of lyme? Did waiting before being treated for it, make it uncurable, or maybe it would be more accurate to say make it not possible to reverse some of the effects?

paula

I have never found a doctor who would do more than pretend to listen to my ideas on the subject. One doctor even said he hated to deal with patients who had internet access. Ticks are vectors for so many viruses (sp) and bacteria. It is just my guess. I know that I, personally, am bothered by terrible fatigue from time to time. Chronic, or irrepairable damage--I waffle between the two. And then, there is the possibility of piggy-back through the blood brain barrier.

By-the-way, he was diagnosed in 2001 after several years of problems. The lyme or tick fever rash was several years before that.

Just a couple of possibilities-
1) A pathogen called Nocardia has been shown to cause parkinsonism.
2) You may have heard of the German researcher Braak's work demonstrating that [I]something[I] enters the nerve fibers in the nose and stomach and then leaves a trail of Lewy bodies like bread crumbs as it marches into the brain en route to the substantia nigra. One other thing that follows a similar pattern is the polio virus.

all...Lee, Tena Louise, trfan, Paula, reverett...for your responses to my thread about Lyme Disease vs. PD. It seems, trfan, that you still question as I do...and your experience with doctors listening but really not hearing what we have to say about all this...they so readily dismiss any thought of any connection between LD and PD...and I still maintain that doctors do not have indisbutable knowledge, especially related to LD. I am still not convinced about Doreen's dx in that one neurologist (an MDS and very prominently known in the field) had such difficulty concluding that Doreen had PD. It was not until she had completed a 2-hour thorough examination that she finally made the PD dx...AND, just recently...her present neurologist...after having examined Doreen stated: "If I didn't know that you had PD, I wouldn't know it." Of course, that was a wonderful thing to hear because he noted no progression...and still only the tremor in both hands...BUT, that just seemed to give me more cause/pause to think about the possibility that, in reality, Doreen just might not have PD...yes...she has a tremor...but could not that be as a result of having a neurological impairment due to something other than PD, e.g., Lime Disease? The Lyme Disease dx and the PD dx still seem so coincidental to me given what I have cited in this entire thread. I really don't believe that I am in denial about the PD dx simply because I'd "rather" she didn't have it...but I certainly feel that I do have reason to question it.

Again...my thanks to all who took the time and made the effort to respond to me...appreciate it so much.

Therese

I understand completely. I don't think anyone here just wants a "diagnosis"--we want the correct diagnosis with proper treatment.