Topic: I sent an email to Michael J Fox's research staff re: Lyme and Parkinson's
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi,
I read that Michael J Fox had a tick bite in the past followed by a few weeks of antibiotics.
Within a few years he was having Parkinson's symptoms.
Here is the email I sent to him through his foundation:
Dear Michael J. Fox,
I am writing with very important medical information. I am a Registered Nurse and I have researched this information for a long time.
It has come to my attention that you had a tick bite in the past, followed by a few weeks of antibiotics.
There are many cases of people who were initially diagnosed with Parkinson's disease and later found that their symptoms were caused by Borrelia burgdorferi, the bacteria that causes Lyme disease.
I completely understand that your symptoms are EXACTLY that of Parkinson's, so you have no reason to doubt your diagnosis.
This is the very reason that most people never discover the CAUSE of their illness.
Something caused you to become very ill with a neurologic disease at a young age. It is likely that the cause is an infectious agent. It is extremely likely that the cause of your Parkinson's symptoms is the bacteria Borrelia burgdoferi.
It is important to note that ticks also spread other diseases such as bartonella, babesia, ehrlichia, anaplasma and others.
Borrelia burgdorferi is the most complex bacteria identified to date. It is a spirochete that can bore into every tissue and organ in the body.
The presentation of the illness depends on the path that the bacteria takes in the body, and also on other infections that the tick has transmitted. Many people do not even remember a tick bite or a rash.
Diagnoses that many people were given, and later found to have Lyme disease, are Parkinson's disease, MS, Fibromyalgia, Chronic Fatigue Syndrome, Rheumatoid Arthritis, Lupus, ADHD, Autism, psychiatric disorders and Alzheimer's disease.
The Borrelia bacteria causes symptoms that are indistinguishable from illnesses such as Parkinson's disease.
I highly recommend that you get a Western Blot IgG and IgM from Igenex lab in California. It is test #188 and #189. Their website is www.igenex.com.
It has been proven that a short course of antibiotics is ineffective in eradicating the Borrelia bacteria. Once the bacteria has spread it becomes chronic Lyme.
I had a fibromyalgia diagnosis for 21 years. Not a single physician was able to recognize that I really had a Borrelia infection. I had to do my own research. With the help of an Igenex western blot and research papers written by the best Lyme specialists, I discovered that I have Lyme disease. I am now receiving treatment from a Lyme Literate MD.
My hope is that my letter will not be discarded, and this information will reach you.
Please do not ignore it, even though you know your symptoms are that of Parkinson's.
It is the CAUSE of those symptoms that is important. When you know the cause, you can treat the problem effectively and have the hope of recovery. I really want you to have the hope of recovery.
Lyme must be treated by a Lyme Literate MD who follows the ILADS guidelines.
You may even say that Lyme has been ruled out as a cause of your illness. My research and experience show that 99% of physicians, do not know how to recognize, properly test for, diagnose or treat a Borrelia infection, and associated coinfections.
Most physicians order a lyme titer or screen. Research shows that this test is worthless and misses more than 85% of cases of Lyme. Western blots done at non-reference labs do not test for all bands and are inaccurate.
I am sending some links to credible sources of Lyme disease information:
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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bettyg
Unregistered
posted
dek, beautifully done thru the heart, and DON'T just ignore this, and i hope you receive this!!
well done my friend!! glad you identified yourself as a rn as well. kudos
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posted
He quit Spin City because of a Lyme diagnosis. He knows he had (has) it. He just thinks it is gone and Parkinson's is unrelated. I know lots of people have brought this to his attention, but he loves his doctors....difficult. That was nice of you to send that letter, though!
Posts: 35 | From Minneapolis, MN | Registered: Aug 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Thanks bettyg and Lyra!
All we can do is try, right?
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
I agree - this is beautifully written - comes across as most heartfelt and sincerely desiring the best for him.
He certainly has suffered greatly over the last number of years. I know he's banking on stem cell research but I pray your words move him to take further action for himself on the Lyme front.
Posts: 191 | From Ontario | Registered: Feb 2006
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Nice letter. I am so surprised someone in his financial and public status wouldn't even consider the Lyme possibility. It is not comprehendable how someone sick can't take blinders off people here try to help them. Denial? How can you not turn over every rock? I just don't know what to think. I'm always amazed so many ill people here have the energy to fight so hard for people that won't look themselves at all options.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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The harder you work the luckier you get! Posts: 965 | From Nebraska Cornhuskers fan in Massachusetts | Registered: Dec 2007
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Thanks brf, seekhelp and steelbone!
I wish every person who is ill could understand that it doesn't matter what you call an illness, it only matters what caused it.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
You're good with words Dekrator48. I've written to him too. Some months ago. The more letters the better.
Posts: 275 | From Home | Registered: May 2007
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Very nice letter Dekrator! I have never wavered in my opinion of the old phrase "knowledge is power".
You did another good thing. I remember that you recently sent an e-mail to Jill from Real Housewives of NY.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Thanks peter j and Leelee!
That's all we can do.....keep trying!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Can you send the same letter to my RN sister and brother-n-law?
He was diagnosed with Post Traumatic Parkinson's disease at age 29.
(I've never heard of that diagnosis in the 18+ years of neurogenic disorders.)
An avid deer hunter, with numerous tick attachments in the past.
Was seen by the "premier" movement disorder doc in Houston,
Only to be told to "stop faking his illness".
The doc went on to say that whatever he had it was not Parkinson's.
Yet he perservered due to the tremors, memory, speech issues, balance issues, etc.
Finally found a neurologist to diagnose him.
When I was diagnosed I remember thinking that his speech pattern
Prior to his diagnosis was so similar to mine.
Research, research and more prompted me to call my sister.
Her response?
"Oh he's been tested for that and it was negative".
Same sister who still today says "Lymes".
It boggles the mind to think that a diagnosis of Parkinson's
Is preferable than one of Lyme disease.
I am standing in your corner cheering.
I keep trying, although I think as you are a RN,
(I am a Speech Path) that maybe....just maybe
She would pay more attention to the information you give her.
Great letter!
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Geneal,
What a heartbreaking situation for your sister and brother-in-law.
So many people don't realize the "reality" of Lyme. Some think it just happens to "the other guy".
Wishing your family all the best,
Leelee
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Geneal, I sent you a pm.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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bettyg
Unregistered
posted
dek,
i want to make sure you have the DIRECT link of dr. b's 08 lyme guidelines; were not available earlier so scott forsgren made it available on his site.
Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @
posted
I nominate Dekrator48 as the official letter writer for Lymenet.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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TadichGrill
Unregistered
posted
M.J. Fox was recently on Dave Letterman saying how when he went to Bhutan and was in a higher altitude he felt more normal then usual and had more energy and was able to go hiking.
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Thanks bettyg!
I recently noticed the direct link on the ILADS site, so I have been using that one since then...which I prefer.
Gee, thanks, Peggy....I think! My mother used to tell me that I should write chidren's books for some reason...instead I became a nurse.
TadichFrill...that's interesting!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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bettyg
Unregistered
posted
i totally agree with peggy; our official, tactful letterwriter who writes from the heart and you feel her compassion as you read each word! 4 stars definitely.
i saw MJFOX where he discussed this also; quite interesting.
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posted
Wonderful! Do you have the links to send letters. I want to write to him about the baseball player on under our skin and encourage him to see the movie as well.
-------------------- If you keep doing nothing...nothing changes!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
MJ has a new book out as well:
Always Looking Up: The Adventures of an Incurable Optimist (Hardcover)
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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Just Julie
Frequent Contributor (1K+ posts)
Member # 1119
posted
I just watched "Rescue Me' from last night. MJ Fox was on it, and it was hard to watch him, knowing what I know about him, his life, and his present condition.
Anyone think to email Denis Leary? He seems like he's a gun-ho type of guy, maybe he has ways to MJ Fox?
It's so sad . . . someone who seems to be in a position of power, such as MJ Fox, yet passing this on by--- I think it's his docs who probably are keeping him from pursuing this possibility. They won't let their poster boy go. Sorry to sound cynical, but there you go.
-------------------- Julie Posts: 1027 | From Northern CA | Registered: May 2001
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posted
This guy has had a pretty good life. A good career, a nice family, and plenty of money. There are so many Lymies who have not had any of these advantages, people who have had their lives ripped from them, people too poor to afford treatments for themselves or their children, people who have nothing, or who've had what little they have had taken away. People who've lost their homes, their savings, their families, people who have ended up killing themselves. I am not getting why so much energy is being spent worrying if this one person could be helped, when many of us here are much worse off -- surely he's not the Lymie most needing of help.
Why is this?
Is it because he is a movie star?
I'm not trying to be difficult here. I really don't get this at all. I would trade lives with this guy in a second at this point. Give me a few years with a pile of money and some palliative meds and I would be just fine. It would sure beat this.
posted
Better loving my pups than a balding Lymie like you Posts: 588 | From Rhode Island | Registered: Jun 2006
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I think the advantage of reaching out to MJ Fox is not only helping another person, but his fame would make him an outstanding spokesperson for all of us who often seem to have no voice.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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