posted
My mother was diagnosed with Parkinson's disease in 2009 after a couple of years of inconclusive symptoms. I asked her about her Lyme exposure and received the following timeline from her. I'm interested in everyone's comments/thoughts about whether the Parkinson's symptoms could really be related to the Lyme exposure:
"March 1999 to May 2000. Had a series of 3 shots of LYMERIX, to prevent Lyme Disease. At the time Dr. XXX said that the shots were 100% effective against asymptomatiic LD, but the length of protectection was unknown. Soon thereafter the vaccine was discredited (I don't know why) and its use discontinued.
Dec 2002. Back problems began. An MRI of the lumbar spine showed "marked narrowing of the foramen.
Feb 2003. Back pain syndrome included hip, thigh and buttock. Dr. XXX of XXX Spine Institute diagnosed herniated disk and administered one steroid injection, which was effective until my fall and spine fracture on April 31, 2009.
May 17, 2003. Went to ER at XXX for removal of tick's head. Treatment by Doxycycline followed by allergic reaction in eye area and hands. Since reaction was localized it was deemed a bite reaction.
Sept 2003. ??? a secondary reaction to poison ivy?
March-May 2004. Achiness, arthritis. Was tested for Lyme. Could have been bitten as long ago as 9/2003. Medicated again with Doxycycline, with bad reaction.
May-June 2005 Mystery syndrome of fatigue, nausea, weight loss and TREMOR in left arm (started suddenly with this illness).
Jan- June 2006. Doctors XXX and XXX (of XXX neurology department) both suspect PARKINSON'S but neither will commit.
Dec 2006. Dr. XXX (XXX's successor) says probably Parkinson's, but lacking most of the major symptoms, except tremor.
June 23, 2009. First appointment with XXX. Without hesitation, he diagnosed as: Parkinson's, tremor predominant. SYMPTOMATIC NEUROGENIC ORTHOSTATIC HYPERTENSION (NOH)"
Since 2009 my mother has fallen and broken her hip and had a long recovery, with increasing pain in her lower back which seems recently reduced with another cortisone shot. Her tremor remains predominantly unilateral. She has been taking Mirapex since perhaps 2006 and she feels it helps, although the tremor is still present. No L-Dopa challenge ever administered.
I welcome everyone's thoughts! Thanks in advance for reading.
Posts: 7 | From New York | Registered: Feb 2011
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
You may already know that Lymerix has been known to cause Lyme disease in those people that had the vaccine. That was one of the reasons it was discontinued contrary to what the FDA has you believe.
What are some important things I should know about Lymerix?
Although Lymerix is designed to prevent Lyme disease and the chronic arthritis that is associated with it, some people have contracted both diseases because of taking Lymerix. These cases have been reported to the FDA.
It sounds very much like the both you have Lyme disease. I would recommend finding a good LLMD (go to Seeking a Doctor forum) and getting tested through Igenex lab.
posted
I do not have Lyme, it is only my mom, and the symptoms described are hers. I am confused about how to find a dr. - I went to the forum and asked for a recommendation, but haven't heard anything (am looking for someone either in NYC or Kingston/Rhinebeck area). Is there some sort of database I can consult? Or can someone PM me with a rec?
Posts: 7 | From New York | Registered: Feb 2011
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
Oh, I misread the comment about "my fall"
"Feb 2003. Back pain syndrome included hip, thigh and buttock. Dr. XXX of XXX Spine Institute diagnosed herniated disk and administered one steroid injection, which was effective until my fall and spine fracture on April 31, 2009."
I see you were diarizing your mother's experience.
There are several on here from the NYC area, I am surprised you never got a response. Maybe try bumping up your inquiry..
posted
Thank you so much for your responses. I will bump up my post re: the doctor. This is all new and I am sort of afraid to even consider it might be Lyme rather than Parkinson's, although it does seem that there might be more treatment possibilities if it is Lyme.
Posts: 7 | From New York | Registered: Feb 2011
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I see that you added your inquiry onto someone elses thread.. I would suggest you post a separate inquiry for the location you are searching.
I think the treatment options would be much better for your mom, if she does have a lyme diagnosis.
posted
Thanks so much, I did start a separate thread. Does anyone think my mom's experience is unusual?
Posts: 7 | From New York | Registered: Feb 2011
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posted
Unusual in what way?? Sounds like she needs an LLMD ASAP!! Most mainstream doctors have NO CLUE about Lyme.
My father had Parkinson's and I am VERY SURE it was Lyme... or at least began with Lyme. He died before I found out I had Lyme and that several family members also were likely to have gotten it at the same time.
posted
THANK YOU!!!!!!!
Posts: 7 | From New York | Registered: Feb 2011
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
Your mom may have had an allergic reaction to the doxy, she should have been given a different antibiotic to see if it was an allergy. Steroids are heavily contraindicated with Lyme disease. They could actually worsen the situation.
More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
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