Aniek
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posted
So it's not directly related, but I saw Michael J. Fox speak last night on stem cell research.
I just wanted to share how moving it was to hear him speak. He maintains his wonderful comic timing when he speaks. And he makes an incredible impact by not taking medication when he speaks. Of course, he's still incredibly handsome...as he was my first crush.
He was in almost constant movement while sitting and waiting to speak. An interesting thing is that when I would look at him, my myoclonus would kick in and I'd start jerking. The brain is an incredible and odd thing.
Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Well, actually it might be directly related.
He had Lyme, then told it was gone because of treatment, and was then diagnosed with Parkinson's. So, over the last couple of years there has been lots of speculation here that he really has chronic lyme instead and has been led down the old garden path, like so many others. If this is true and he had those brain surgeries in error, well that would be very bad indeed.
The really interesting thing is that some time ago, he was quoted as saying he felt better when he was drinking quinine water. So, if he also has undiagnosed babesia, and responds to quinine......
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Aniek
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Actually, he was diagnosed with Parkinson's before Lyme. It was in 1997 and 1998 that Fox was talking publicly about being bitten by a tick and having Lyme disease. At that point, he had already been diagnosed with Parkinson's but keeping it a secret.
It's interesting that he was publicly talking about Lyme while hiding the Parkinson's. I wonder if he did consider Lyme after the Parkinson's diagnosis but didn't respond to the little treatment he received.
That doesn't mean that he does or does not have Lyme. He could have had Parkinson's that was worsened by Lyme. It could have been Lyme all along, or it could be completely unrelated. But it sure does raise questions.
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It makes sense that he would talk about lyme because that is easy to diagnose and cure, right? But Parkinsons thought to be a more serious disease and career busting.
Of course, some cases of Parkinsons are actually misdiagnosed lyme.
Sure raises some questions.
But I don't think he is open to reconsidering his diagnosis. Too committed to his fundraising for Parkinsons and the researchers who are counting on him are not going to want any change. Plus, if those surgeries were done in error, that will not be anything the surgeons want known.
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Aniek
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He mentioned on Sunday that he was diagnosed with Parkinsons for 7 years before going public. So I did a little research this morning.
It seems like the Lyme publicity came out right before he announced Parkinsons. It also seems the Lyme may have been leaked out. So maybe that somehow lead to him publicly talking about Parkinson's.
You never know what Parksinon's research will discover. There is medical recognition of infections causing Parksinson's type disorders, as in the book and movie "Awakenings." Fox made it clear that his foundation funds all types of research, not just stem cell. Maybe they will discover infectious agents as the cause.
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posted
Interesting topic! Did you see the CBS movie this last Sunday night about Parkinson's and MJFox having comments at the end? Especially since he was told it would be 5-10 yrs. before they found a cure, and that time had already lapsed of 10-20 years.
Yes, he is very effective; saw him on Letterman or Jay Leno last week.
bettyg, Iowa
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MammaLyme
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He was bitten working on the set of Doc Holliday or whatever it was called. He also dismissed this. Get a date for this and that is the date he was bitten.
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Could this have been Doc Hollywood? Googled it and this movie was released in 1991. Don't know when it was shot....guessing maybe 1990.
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MammaLyme
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Yes, Lou. That was when he was bitten.
I saw an MS sign up at a craft fair during the summer. I said to the young woman, were you tested for Lyme Disease. She said yes and it was negative. I said these are not accuate tests. You no doubt still have lyme. MADE MY DAy.
posted
Ok, just to stir the pot even more - and coming from a "lyme-brain"....
I'm almost positive that I read somewhere that Michael J. Fox had been diagnosed with lyme disease several years BEFORE he was diagnosed with Parkinsons.
And that he wasn't treated terribly long for lyme(ie: the standard treatment)
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posted
he did..I read an article on M. J Fox years ago after the tick bite and lyme dx. He said in the article something like 'my health has gone down hill since I was bitten by that tick' boy wasn't that the truth!
-------------------- ~Things may happen in my life time to change who I am but I refuse to let them reduce me...~ Posts: 968 | From private | Registered: Jan 2005
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troutscout
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Pandemically misdiagnosed.
Trout
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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oxygenbabe
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One doc I know told me that a bunch of folks on that doc holliday shoot got sick and probably have lyme. it may be hearsay.
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Fox hunt: why do Michael J. Fox and three people who worked with him all have Parkinson's disease? Current Science, Sept 27, 2002 by Darren Sechrist
Michael J. Fox rose to fame in TV shows (Family Ties, Spin City) and movies (Back to the Future). But his first acting break was a little-known 1970s sitcom called Leo and Me, filmed in his hometown of Vancouver, B.C.
Leo and Me was a big step forward for Fox's career. Was it also a big step backward for his health? He and three other people who worked in the TV studio where Leo and Me was filmed have all developed Parkinson's disease, an incurable illness of the brain. Could their shared illness be a coincidence? Or did all four catch the disease from something in the studio?
WITH THE TWITCH OF A FINGER
Fox was diagnosed with Parkinson's in 1991 at age 30. His first symptom was a twitchy pinky that he thought might indicate a muscle or nerve problem. His wife also noticed that the left side of his body barely moved when he ran.
Tremors and stiffness of the limbs and trunk are two common symptoms of Parkinson's. The others are difficulty with balance and walking and bradykinesia of the limbs, or slowness of movement. Still, Fox didn't suspect that he might have the disease. Why would he? Just 5 percent to 10 percent of Parkinson's cases occur in people under age 40.
GOING PUBLIC
In 1998, when Fox could no longer hide his symptoms, he went public with his story. Soon after, he started the Michael J. Fox Foundation, which funds Parkinson's research.
That's where Fox's personal history comes into play. Normally, about 1 in 300 people get Parkinson's. But of the 125 people who worked in the TV studio where Leo and Me was filmed, four have since been diagnosed with the disease--10 times more than normal.
Why did so many people who worked in that studio come down with Parkinson's? Can people catch Parkinson's as they do a cold? Scientists aren't sure. They don't know what causes Parkinson's. They only have clues.
FINDING CLUES
One of those clues comes from genetic studies. Genes are tiny pieces of biological material that control the workings of human cells. They are passed down from parents to children and determine how we look and how our bodies function. Genetic diseases are caused by mutated genes--genes changed from their normal state--that are passed from parent to child.
In one study, scientists found high rates of Parkinson's in more than five generations of a single family. The researchers pinpointed two mutated genes that they believe caused the disease in the family. However, those mutations were too rare to be the cause of most other cases of Parkinson's, the researchers concluded.
Clusters are another clue. Clusters are cases where Parkinson's occurs among a group of unrelated people who spend a good deal of time together. Clusters suggest that Parkinson's might be caused by an environmental factor.
Parkinson's clusters have been found among people in certain occupations, such as loggers, who are in long-term, close contact with one another. Loggers sleep in close quarters in work camps.
One cluster was found in an office at the University of Pittsburgh. The number of people with Parkinson's in the office was 30 percent higher than normal.
AN INFECTIOUS AGENT
Some cluster cases suggest that Parkinson's might be an infectious disease, one caused by a virus or a bacterium. Health care personnel, who spend their working days with sick people, are more likely than others to get Parkinson's.
Other clusters suggest that Parkinson's might be the work of a toxin (poison). One study of Canadian farming communities showed that people who drank well water were more likely to get Parkinson's. The researchers concluded that the groundwater had been contaminated by pesticides (chemicals that kill insects) and herbicides (chemicals that kill weeds and other plants). Two researchers are now studying possible links between Parkinson's and the pesticide rotenone and the herbicide paraquat.
CLUSTER BUSTER
Donald Calne, a professor of medicine at the University of British Columbia, is treating two of the four people who worked in the Leo and Me studio and now have Parkinson's. He hopes to do a study of the Leo and Me cluster and already has one interesting lead. The TV studio is mostly underground and insulated to block out sound.
"The air circulation is very tight," Calne told The New York Times. "And so if there was anything in the environment, there may have been a bigger risk of that being recirculated to an extent that might amplify risk."
Learning more about the factors that cause Parkinson's might draw researchers closer to a cure. Certainly, Fox is optimistic. He believes there might be a cure by 2010.
"I mean, as sure as the sun is going to come up tomorrow it's going to happen," Fox told the Canadian Press last spring, "so our mission is just to make it happen as soon as possible."
Objectives
Michael J. Fox and three other people he worked with all have developed Parkinson's disease. Did the disease come from the same source or is their shared affliction a simple coincidence?
Critical Thinking
* What agent in the TV studio where Michael J. Fox worked might have affected him and the three other people who also have Parkinson's disease?
* Cancer is a disease that has many causes. In what way might Parkinson's disease be like cancer?
National Science Education Standards
* Structure and function in living systems: organs, disease
posted
This IS interesting. Thanks for posting. If Doc Hollywood was filmed in 1990 and he first noticed "Parkinson's" symptoms in 1991, the timing is right for lyme, seems to me. Poor guy.
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posted
This is just my opinion, but I think true Parkinson's is probably caused by toxins such as pesticides as mentioned in the article -- something actually destroys the dopamine producing cells in the brain. The current work being done with glutathione supports this theory.
But I do believe that a Parkinson's "look alike" illness can be caused by Lyme disease and other tick-borne illnesses -- especially babesia. My husband is a case in point.
Also a 2nd 'look alike" illness is related to mercury and other heavy metal toxicity. Again my husband is a case in point.
In all cases there is an imbalance in acetylcholine and dopamine.
True Parkinson's patients have too much acetylcholine because of the low levels of dopamine.
Lyme and tick-borne illness patients have too little acetylcholine (the bugs rob this from the body) and this presents with the same symptoms. Dopamine levels may be normal.
Mercury patients probably have normal amounts of both acetylcholine and dopamine, but the acetylcholine receptor sites are being blocked by the metals.
I believe too much or too little acetylcholine presents with very similar symptoms in the same way that too much or too little B6 can cause nerve pain and numbness and tingling.
This is just my opinion and should not be taken as medical advice.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Very interesting Bea. Does that mean acetylcholine levels can be accurately measured? And if it does, then could people with parkinson's diagnosis figure out whether it was actually lyme by measuring acetylcholine? That sounds too easy. If it could be done, then why hasn't it been done? Or am I missing something here?
Where did you get your info on the high and low levels and those diseases?
Very intrigued by this.
Posts: 8430 | From Not available | Registered: Oct 2000
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Dopamine can be measured much easier than acetylcholine. But even then what is generally measured are the metabolites (breakdown) or the amino acids used to produce dopamine -- indirect measures.
There are some very specialized and expensive imaging studies that can measure dopamine and I believe acetylcholine also. Mostly just used for research currently.
My info is from converations with several doctors and several different books. I am in the process of organizing my notes from various sources and hope to make this info available in a few weeks.
It is well known that Parkinson's is treated with anticholinergic drugs (drugs that block the action of acetylcholine) in the early stages. These drugs include Benadryl and Artane. In later stages l-dopa is added to increase dopamine and try to get the 2 chemicals more in balance.
Acetylcholine is the gas and dopamine is the brakes as far as muscle movement is concerned.
You could try researching brain speed. Dr Eric Braverman (not one of my favorite people -- Steve and I had a major personality conflict with him) has written a book called "The Edge Effect" which explains one concept.
Specialized EEG's -- Dr Braverman calls his a BEAM test or other doctors use a QEEG (quantitative EEG)-- measure the different neurotransmitters based on the brainwaves.
On another note,according to Dr Patricia Kane supplementation with Phosphatidylcholine increases the number of receptor sites in the brain for dopamine and other neurotransmitters. I have seen the diagram she showed us in several books, but can't remember which ones right off.
On a personal note, the 1st objective test Steve had that there was a physical cause for his symptoms (Parkinsonian tremors) was a QEEG -- it showed that the left and right hemisperes of his brain were not communicating correctly.
For a while he did cross-crawl exercises which physical therapists use for stroke patients. This would stop his tremors while he was doing the exercises, but they came right back when he stopped exercising. At that time we did not have a diagnosis other than anxiety/depression. This was indirect evidence that dopamine was available but not being used correctly by the body.
The test also showed problems with brain wave speed. This was later confirmed by the BEAM test. According to the BEAM test Steve has something like 54% of normal dopamine and I think it was 70% of acetylcholine -- adjusted for his age.
Parkinson's patients do not become symptomatic until 80% or more of the dopamine producing cells in the brain have been destroyed.
Numerous amino acid tests almost always show low levels of tyrosine and phenylalanine -- dopamine precursors. Steve has taken supplements which do help, but his ongoing G.I. issues limit the amount of supplements he can take.
Shots of NADH were also helpful initially, but then became ineffective. This is used in dopamine production and is also available as an oral (very expensive) supplement.
The thing that has been most helpful to Steve from a neurotransmitter perspective is to increase serotonin. This is a calming neurotransmitter and it helps balance out the other 2. Helpful for moods and sleep and decreased tremors as well.
But in my opinion increasing serotonin will only work if resveratrol (Japanese knotweed source) is used to block the alternate pathway which casuses serotonin to be converted to quinolinic acid in the presence of infection.
Quinolinic acid is a potent neurotoxin and has been found to be elevated in Lyme patients. This is expalined in detail in the "Healing Lyme" book.
Long before we knew about this supplement Steve had a test which showed increased levels of a serotonin metabolite (don't remember exactly which one) and increased levels of quinolinic acid in either a blood or urine test -- it would be safe to assume it would also be elevated in the spinal fluid as well I think.
At the time of these tests a doctor had Steve experimenting with 5HTP -- he was taking one 50mg capsule every hour or two around the clock. This would stop his tremors for a while but then they came right back and he would take another 5HTP. We only did this for a week or two as it seemed counterproductive at the time.
I think the reason the phosphatidylcholine has helped Steve so much is because of the increase in receptor sites as explained by Dr Kane.Indirect evidence that the IV phosphatidylcholine did actually go to his brain is that recent MRI's no longer mention brain atrophy (mild brain shrinkage).
Based on Steve's test results from the BEAM it would appear that he doesn't need more acetylcholine. Years of experimenting with anticholinergics did very little to improve his tremors from Lyme disease.
Hopefully what I have written makes some sense to someone besides me!!! It seems like a big maze at times, but pieces of the puzzle are starting to fit together as far as Steve is concerned.
Steve's Parkinsonian tremors were somewhat atypical and did not exactly fit the definition for Parkinson's. Don't know if others with Lyme and Parkinson's diagnosis have this same finding.
Examples of things that confused his doctors. Tremors worst in left arm and right leg -- should have been worst on one side of body only. Steve shook in his sleep -- Parkinson's patients do not. Tremor was too fast -- alternative diagnosis is anxiety. Steve had both a resting tremor and an intention tremor-- Parkinson's is a resting tremor only.
Hope that helps Lou.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Lou see PMID 10743618 for Babesia and PMID 14766917 for Lyme. There are several other Pub Med articles regarding choline, acetylcholine or phosphatidylcholine.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Whew!!! I am impressed with the depth of your knowledge.
Biochemistry is not my forte, and despite trying to get a handle on molecular biology, think it is all a bit much for my lyme brain. Read a book recently on the evolution of the genome, so maybe I could understand some of the published papers better, especially those dealing with molecular aspects of lyme. Fascinating stuff, and I have a slightly better grasp of the point of these articles now, but don't ask me to explain!
Will look up the articles you mentioned on pubmed. Thanks.
Editing this post because I scanned Fox's 2002 autobiography. Nearly fell off my chair when I read about his frequent visits to his in-laws place on MARTHA'S VINEYARD (lyme central). So, if he didn't get lyme in FL, CT, then he could have gotten it on the island. It is interesting to know that another film crew got lyme in FL, but it was hushed up, and state officials refused to do any sort of investigation. Tourism is big business in that state, and no one is going to jeopardize it. This is just like hundreds of years ago when businessmen leaned on officials to deny presence of plague in a city, for fear of losing sales.
I could not find any mention of lyme in this book. Did I overlook it, or was it just considered so insignificant that he didn't even think to include it?
Also, it is easy to see why he accepted the Parkinson's diagnosis. Was overwhelmed by big name neurologists, etc. And the symptoms, although suspiciously early, did seem to match PD. However, as we know, lyme is the great imitator.
The bottom line is that it is still unclear to me what he has. But I don't think there is going to be any second guessing of the diagnosis, except by us. And even if it turned out to be tickborne diseases, after all this time, surgeries, and PD meds, could it be reversed anyway?
[ 04. November 2005, 10:33 AM: Message edited by: lou ]
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posted
So im bringing this thread back from the dead just because it blows my mind that michael j fox had lyme before he was diagnosed with PD. What the hell? Why can't a clear line be drawn from his lyme disease and where hes at now? When is the bubble going to burst? Could you imagine if SOMEHOW he figured out it is lyme, how big of advocate he could be for the the disease? Pretty unlikely at this point but when is some research going to be done? I guess our only hope is under our skin, we need more awareness...ALOT more
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lpkayak
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posted
there is a recent study showing a relationship between lyme and parkinsons i think...maybe bring it to his attention?
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