If you or anyone you love is diagnosed with Parkinson's Disease, please, please, please - see a Lyme literate Md, have a blood test through IGENEX tick borne specialty lab only ( http://www.igenex.com ). Join a lyme disease forum for patient help with finding a Lyme literate Md and how to get tested.
There are many, many stories about patients misdiagnosed for years with Parkinson's only to find out they had Chronic Lyme Disease.
For more information see the links below and check back often as more will be added as they are discovered.
A message from another forum:
Did you know that Michael J. Fox was diagnosed with lyme disease three years before being diagnosed with Parkinson? Did you know that 4 workers on his movie set were also diagnosed with Parkinson? The movie set was in Conn. - lyme country. My brother in law was diagnosed 20 years ago with Parkinson, 10 years before that he was bitten by a tick while camping. He is starting his research on the correlation between the two! My husband was diagnosed with bipolar, dementia, degeneration of the brain, parkinson, etc. etc. Four months ago he was finally tested for lyme disease tests were positive including spect scan. He has been on antibotics for four months now and doing quite well. Each month he gets better and better. I had to fight tooth and nail for a Doctor to listen to me to no avail. Finally, I took him to see a Lyme Literate Doctor and the rest is history. Just wanted you to know and to take your conditions into your own hands, the Dr.s don't know everything. We are living proof of that.
http://www.truthaboutlymedisease.com/phpBB3/viewtopic.php?f=10&t=777
Yes this is so tragic and true, this is why we need more research. I tried several times to reach out to him on his web site but to no avail, you just can't get a hold of a celebrity and his organization would never stand for the idea that he is a Lyme Patient. (very sad)
ReplyDeleteIt is outrageous that organizations or specialists don't explore all of their options and quickly call it what is the most obvious to them staying in their niche or specialty, when reality that could all be symptoms of the underlying problem.
ReplyDeleteIt was so obvious to me this past week when I spoke to my endocrinologist about my treatment, (I have graves disease too, usually it is a hypo thyroid another symptom of the Lymes) and she thought I should be seeing traditional infectious disease doctors and tried to steer me away from the doctors I have. I said to her that everything I have read is that their rational way of treating a person is too short, she told me not to read anything about Lymes and said it was better for the body. – Yikes.
I also know that after 9 months of oral antibiotics and nothing changing they might think that there would be no hope for me. Fortunately the next day I saw my Lymes doctor and found out that finally after 12 months of oral antibiotics and 3 months of an IV pic-line there is finally an improvement, but still have always to go.
Long-term antibiotics are the only way to go. I also said to my endocrinologist that many doctors cannot read the test results and she said that was not true - but in fact I gave her my results in the beginning hoping to find someone that could read them and she couldn’t, she didn't even want to look at it.
My mother died from what they called Parkinson's at age 65. Now we know it was Lyme. She passed it to her children and I've passed it to my daughter. Three generations of Lyme in my family that started as supposedly Parkinson's!
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