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Marle222

Lyme induced parkinsonism

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 I was diagnosed with Lyme disease five years ago. I received six weeks of amoxicillin. A Tremor in my left hand developed shortly thereafter. Initially diagnosed as ET and treated with primidone which only made it worse. One year ago diagnosed as PD. The doctor tried l-dopa then l-dopa Carbidopa and now mirapex. I am currently titrating up but no effect so far. I read an article by dr. Daniel Cameron about Lyme induced parkinsonism. Have you or anyone you know received this diagnosis? If so, how was it treated? Are you aware of it ever being reversed? Thank you in advance for your input.

Edited by Marle222
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I can't say that I have heard of "Lyme induced" parkinsonism, but my wife and I have discussed this issue several times (we are both R.N.'s - she is a Oncology Research Nurse). She started having problems several years ago with extreme fatigue and muscle aches and pains. The doctors pretty much dismissed it because the symptoms were not things that they could actually see. After a year of battling these symptoms, her hair began falling out and leaving noticeable bald spots. The doctors knew then that something was definitely wrong and started running every test that they could think of - until they got a positive back for Lyme disease. They confirmed it with a Western Blot test. The thing is, my wife is not an outdoorsy person. She has had no tick bites of which we are aware, and definitely no bullseye rash. And, according to the CDC, there is no Lyme disease in West Tennessee - despite the fact that numerous people are diagnosed with it in this area every year.

Anyway, she underwent 30 days of antibiotics which helped, but does not cure Chronic Lyme disease (long explanation as to why). She has gotten much better, but 3 years later she still has cycles of Lyme flare-ups which are getting less severe every time. But we still don't know how she got it to begin with. In her research, she found some doctors who stated that they believed most Parkinson's patients tested positive for Lyme. I have never had the test, but I did have a tick buried in my scalp for about a week when I was a kid. It left a wound that wouldn't heal very well until I had a run-in with a hedge trimmer a few weeks later and was put on antibiotics after surgery to repair my finger. SO, I can't help but wonder if I am a Lyme carrier and somehow gave it my wife. I also wonder if it is possible that undiagnosed Lyme disease led to my Parkinson's disease. I know that this would be dismissed as a conspiracy theory by the medical community, but I don't think that there has been any real research into it.

Kevin

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Kevin,

you have a big smart brain and also alot of time to ponder linkages and patterns. What you don't need is unnecessary guilt...which might be a byproduct of having PD and subconsciously worrying about future productivity. 

 you have no way of testing that hypothesis that you gave your wife Lyme disease - which naturally leads to the question of did you also give her PD?  Doesn't medical science requires hypotheses to be tested or discarded?

You're right, its an interesting conspiracy theory. 

Don't beat yourself up. That's what PD is for.

-S

 

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Super,

I'm not emotional about the subject. It is highly unlikely that I gave my wife Lyme disease (my ex-wife doesn't have it), but it is an interesting question if Lyme and PD are somehow related. The whole idea of "Chronic Lyme disease" is a hotly contested subject in the medical community right now, but my wife's case and many others like hers are helping to change opinions. As research continues, maybe some day a link will be found. Sometimes conspiracies turn out to be true.

Kevin

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I got Lyme Disease in 1989.  Lyme Disease didn't escape the Plum Island weapons lab until 1975, so it was relatively new in 1989 and certainly here in the Midwest.  To make a long story short, I wasn't diagnosed for a LONG time and developed Chronic Neuro Lyme disease.  It was NASTY and in many ways worse than PD.  My neuro thinks that it's very possible that my PD was caused by Lyme.  I didn't really start getting better until many years later when I discovered a MD/ND that specialized in Lyme Disease.  She finally got it under control and I seem to be in long term remission at this point.   Lyme disease is not a single infection.  Ticks carry MANY infections and you have to beat them all to get better.

There is a lot of discussion in Lyme Disease circles about Lyme being transmitted sexually. 

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Interesting stuff. 

This calls for better study to determine if sexual partners of Lyme disease patients have been infected, and also whether that infection then leads to a diagnosis of PD. 

 

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On 5/28/2018 at 4:40 PM, Marle222 said:

 I was diagnosed with Lyme disease five years ago. I received six weeks of amoxicillin. A Tremor in my left hand developed shortly thereafter. Initially diagnosed as ET and treated with primidone which only made it worse. One year ago diagnosed as PD. The doctor tried l-dopa then l-dopa Carbidopa and now mirapex. I am currently titrating up but no effect so far. I read an article by dr. Daniel Cameron about Lyme induced parkinsonism. Have you or anyone you know received this diagnosis? If so, how was it treated? Are you aware of it ever being reversed? Thank you in advance for your input.

I have an anecdotal story.  I take a variant of the b-3 vitamin (Nicotinamide Riboside , or NR).  It has GRAS status  (NIH) and a Letter of No Objection from the FDA, and can be purchased on-line in the US.  NR is the only B-3 that can enter the neuronal cells (unlike niacin and niacinamide).  NR is a precursor to NAD, a key coenzyme within the cells that is important regarding mitochondrial function.  

I occasionally tell people who I casually meet about NR, because of the benefits I have experienced, the reports from other people I know or whose comments I have read, and the mostly animal efficacy trials that I have read.  In the relevant instance I brought up NR to a woman from France who I met not eh Oregon coast.  She interrupted me and told em that she had been taking NR.  She said that she had Lyme disease induced neuropathy pain so bad in her legs that she had been unable to walk.  Her doctor in France had read about NR, and said that she had no remedy, but recommended giving NR a try because of its potential benefits regarding neurological situations.  She said that after taking 500 mg of NR per day for a few months that the pain had completely vanished, and that she continued taking it.

I personally take 1000 mg of NR per day, without any negative reaction.  For me it has ended the muscle stiffness that I sued to feel int he mornings or after sitting too long.  My triglycerides and Ac have also improved to normal levels.

There is a lot on-line about nicotinamide riboside.  As I understand, t here are currently 18 human efficacy trials registered with the federal government.  

 

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On 5/29/2018 at 8:55 PM, PatriotM said:

I got Lyme Disease in 1989.  Lyme Disease didn't escape the Plum Island weapons lab until 1975, so it was relatively new in 1989 and certainly here in the Midwest.  To make a long story short, I wasn't diagnosed for a LONG time and developed Chronic Neuro Lyme disease.  It was NASTY and in many ways worse than PD.  My neuro thinks that it's very possible that my PD was caused by Lyme.  I didn't really start getting better until many years later when I discovered a MD/ND that specialized in Lyme Disease.  She finally got it under control and I seem to be in long term remission at this point.   Lyme disease is not a single infection.  Ticks carry MANY infections and you have to beat them all to get better.

There is a lot of discussion in Lyme Disease circles about Lyme being transmitted sexually. 

I've enjoyed reading this whole thread of very intelligent and well-spoken Parkies.   I'm so sorry for what you each have been going through.  You have tough survivor skills and mentalities.  Really impressive. 

Patriot, would you be able to send me your MD/ND's name and contact information if you feel comfortable to?  I've gotten several recommendations for NDs here in Maryland through the years, but after reading about them each on line, I wouldn't feel comfortable to put myself under their care.  Maybe your ND could recommend someone to me that she is familiar with and feels confident about.  Thank you.

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Jeff,

Interesting information. Since I no longer work at the hospital, I don't have access to the research database. But my wife does, so I am going to have her check into this for me.

Thanks,

Kevin

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