posted
How did he turn out to be a big spokesman for Parkensons, when it seems that it started with Lyme.
On the cover of the National Examiner's (yes the tabloid) May 27, 1997 edition which is currently out, the "Bug Bite Threatens Michael J. Fox Career" banner is flying just above "Oprah's Battle With Baldness." Open to page 35.
Star refuses to take doctors advice to slow down... MICHAEL J. FOX CAREER THREATENED BY BIZARRE DISEASE.
His nightmare began with a bite from this little tick!
SPIN CITY star Michael J. Fox's health and career are being threatened by a potentially deadly disease, experts warn.
The gutsy actor recently admitted he's battling dangerous Lyme disease, which can lead to heart damage, meningitis, and arthritis -- and could be fatal if left untreated, doctors say.
But instead of slowing down and curtailing his extracirricular activities, Fox jumped right back into grueling 18 hour workdays on his hit ABC sitcom.
"People who suffer from Lyme disease, which is caused by a deer tick bite, should take it easy and give their bodies time to rest and recover," explains Dr. Heeten Desai, a Tucson Ariz. emergency room physician who specializes in toxicology.
"Lyme disease can be debilitating. You wouldn't want to overexert yourself. I'd recommend that someone suffering from this disease take it easy."
The 35 year old actor kept up his hectic daily grind, but he did postpone an appearance on David Letterman's Late Show. When he finally did appear on the CBS talkfest, he revealed to Letterman: "I got a dose of the Lyme. You feel like crap."
"l got bit by a tick," he confessed. "They're really tiny."
"Then what happens is you get this little red mark. You think it's a rash or you think it's some bad thing, but it's a tick bite."
"Then you are doomed because it's already too late."
Fox, who married to Tracy Pollan and has three kids, 7 year old Sam and 2 year old twins Aquinnah and Schuyler, was put on antibiotics for three weeks -- the standard treatment for Lyme disease -- but docs warn there could be lingering problems.
"Until patients have been medically cleared, they should be careful not to overexert themselves or overexercise."
Tom Skinner form the Centers For Disease control and Prevention in Atlanta, explains that Lyme disease effects each person differently.
"Some people experience brief bouts of what appears to be arthritis," he explains.
"As the disease progresses into later stages, it can lead to nervous system abnormalities, including numbness in different areas of the body, Bell's Palsy (facial paralysis) and in some cases, meningitis."
"In some instances, people can experience irregular heart rythyms, which could be fatal if not treated."
There were 10,000 cases of Lyme reported in the U.S. last year, mostly in the Northeastern and North Central regions.
The early symptoms include fatigue, chills and fever, headache, muscle and joint pain, swollen lymph nodes and a red skin rash, says Skinner.
"Some symptoms of Lyme disease may not appear until weeks, months or years after a tick bite," he adds.
"Some people can expect recurring bouts of the disease, especially if the treatment was unsuccessful, so Michael J. Fox is not out of the woods yet."
Fox, here with wife Tracy Pollan and son Sam, won't take it easy.
Fox admits to Letterman: "I got a dose of the lyme"
<>
Michael J. Fox makes headlines for LD
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
posted
"On the cover of the National Examiner's (yes the tabloid) May 27, 1997 edition which is currently out, the "Bug Bite Threatens Michael J. Fox Career" banner is flying just above "Oprah's Battle With Baldness." Open to page 35. "
That tells me all I need to know. Don't listen to tabloid garbage. Fox does have Parkinson's, which up to this point, can't be linked to Lyme. I know someone is going to now post some study[ies] that show[s] a causal link, but nothing substantial has ever been proved.
-------------------- Craig Posts: 207 | From Tallahassee, Florida | Registered: Nov 2007
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Aniek
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posted
I have heard conflcting information about Fox and Lyme.
I have heard that he was treated for Lyme while filming Doc Hollywood but he does not connect that to his Parkinsons.
I have also heard that he never had Lyme, but said he did in order to cover up the Parkinson's. I'm guessing this would be because he didn't realize Lyme could be chronic.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Here I am Craig, as predicted. Lyme is well-known by lyme docs to mimic Parkinsons, among many other diseases. Syphilis was once called the great imitator, and it was a spirochetal disease too. Now lyme pulls the same tricks. One doctor I know found that most of the people he treated with a Parkinsons diagnosis improved with lyme treatment. If you have this disease, it is a big deal that a treatment works.
Posts: 8430 | From Not available | Registered: Oct 2000
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My aunt was diagnosed with Parkinson's, but has Lyme symptoms and lives in an endemic area...
What doctor are you talking about?
she had numerous petscans that indicate Parkinsons. She does not have lesions and her Parkinsons is not severe. It is progressing. Could she have both diagnoses?
If anyone can shed light on this we'd appreciate it!
Gena
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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My aunt was diagnosed with Parkinson's, but has Lyme symptoms and lives in an endemic area...
What doctor are you talking about?
she had numerous petscans that indicate Parkinsons. She does not have lesions and her Parkinsons is not severe. It is progressing. Could she have both diagnoses?
If anyone can shed light on this we'd appreciate it!
Gena
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Interesting... I never knew he was bit by a tick.
UP UP UP
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Hubby spent the first two years being told -- your tremors are not caused by Parkinson's but we don't know what is wrong with you.
Hubby never had a rash or known tickbite, so we didn't know to look for Lyme and other tickborne infections initially. Hubby did eventually have a positive PCR for Lyme, plus positive bloodslides for Babesia and Bartonella.
Do a search here under Parkinson's -- there have been several discussions on this topic.
Gena -- Another illness that can mimic Parkinsons is mercury toxicity -- hubby had Parkinsonsian tremors from that prior to his tickborne illness. With chelation those tremors went away.
Both mercury and Lyme interfere with the neurotransmitter balance between acetylcholine and dopamine which is what causes the tremors.
IV glutathione is a promising treatment for Parkinsons. Also very high doses of CoQ10 have been proven to halt progression of the disease -- meds only treat symptoms but do not slow down underlying disease progression.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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kelmo
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Member # 8797
posted
Craig, here's another example. We have a woman in our support group who presented with Parkinsons. She discovered she was positive for Lyme and has been treating that.
She went from totally disabled to walking a mile every day in a year.
Is there a test for Parkinsons?
Also, several people working on the same movie that Michael J Fox worked on in CT came down with Parkinsons...how the heck?!
Posts: 2903 | From AZ | Registered: Feb 2006
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quote:Originally posted by daise: A tabloid is not to be taken seriously. However ... Michael was actually quoted. That's a bit of a difference.
He had a tick bite. He saw a rash. Now he has Parkinson's.
Any one of those reasons is good reason to get in front of an LLMD who is an ILADS doctor, for proper assessment.
daise
That's true. I'm pretty certain there were other magazines who interviewed him about it. I thought one of them was People magazine.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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ralph
Unregistered
posted
Good points, Lou. Syphillis was known as the great imitator. In my studies Lyme has been called the second great imitator. And since lyme seems to favor the heart, nervous system and joints, think of all the diagnoses that could actually be lyme. Many types of heart disease, rheumatoid arthritis and nervous system disorders like Parkinsons, MS, ALS and more.
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Health
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posted
Why doesnt someone from this board in his area contact Michael J. Fox and tell him about this site, and see if he tests positive
for lyme at IGENEX. Why not, it could be a good thing.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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sparkle7
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posted
I didn't read through all of this but why does this matter?
It's not really a "medical question" if a celebrity has Parkinson's or Lyme.
I'm sure he's getting the best care since he is a celebrity &/or probably has money & health insurance (not to diminish his suffering).
This doesn't help me any...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Health
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Member # 6034
posted
I think this is a good topic, because it is SO sad to see Michael J. Fox now because of his disease, and because he might just listen to the
Dr's that say he does NOT have lyme now because of the regular lyme tests done here that say negative, and yet he may be positive,
also, I had such a difficult time believing this disease and that I would need many years of antibiotics to get well, and here I am,
because I would not be writing this without treatment, of antibiotics,
I think it would be a good idea that someone email him this site, that is in his area, because I dont like to see someone suffer that does not have to,
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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posted
I do believe that many people have contacted Michael J. Fox re. the Lyme Parkinson's connection.
I have no doubt that there is a connection.
Many have been diagnosed as having Parkinsons', which is another "of unknown origin" disease, catch all - to later find out they have Lyme.
There really is no difference in the symptomatology between the two, when one considers late-stage neuro lyme.
And now he has had to have parts of his brain cut out.
It does not matter that he has the best docs available. Many of us have gone to "the best docs available" and they have all missed the boat.
Why would he be any different? The best docs available, if they are not Lyme literate, are of NO use to us!
This breaks my heart - not only for Michael, but for the many that have suffered and have been mistreated and misdiagnosed by the medical establishment.
This subject is certainly pertinent to Lymenet.
I am not saying that he does not have Parkinson's either - I am saying "what is that the root of the Parkinson's?" Similar to "what is at the root of "so many of these diseases of unknown origin?"
I am tired of the catch-all diagnoses with no explanation for the cause, and treatment that is not geared towards eradication of the initiating catalyst. Palliative treatment oftentimes (not always) proves to be worse in the long run and a waste of time.
Posts: 589 | From Rhode Island | Registered: Jun 2006
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LisaS
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quote:Originally posted by luvdogs: It does not matter that he has the best docs available. Many of us have gone to "the best docs available" and they have all missed the boat.
Why would he be any different? The best docs available, if they are not Lyme literate, are of NO use to us!
The availability of the "best" doctors is his entire problem. I'm sure he's been tested for Lyme many times and has been told that he doesn't have it.
They probably didn't even know how to read the test!
And yes, I'm pretty sure he's been contacted before. Remember, he is surrounded by people who intercept emails and phone calls, letters, etc.
He may have told his employees that he doesn't want to hear more about Lyme.....who knows???
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Many of you are saying exactly what I am purporting....That there is a distinction. I see so many saying that every disease and Lyme are one in the same, but if that were true, antibiotics would cure/improve them.
If a person who is diagnosed with Parkinsons improves on abx, I'd say that they were misdiagnosed to begin with. There is a reason why Parkinsons patients aren't prescribed abx, it's because they don't work to improve their condition.
Now could both diseases co-exist at the same time? Or could one facilitate the acquiring of the other? Perhaps. But there's a reason that Michael J. Fox with all of his money, hasn't done a therapy of abx, and I am willing to bet he's explored a whole lot of theories.
-------------------- Craig Posts: 207 | From Tallahassee, Florida | Registered: Nov 2007
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posted
I doubt that he has Craig. Not trying to be a devil's advocate or instigate here.
I only doubt it because, if he went to a regular doc aka duck, which is most likely, then they either:
1) would not try further abx treatment or
2) when he does the treatment and has a bad herx... deem the treatment a failure.
3) test him and get the negative results and declare it "not Lyme"..
Any number or combo of these possibilities are very likely. Do you see what I am trying to say?
His docs are going by the Merck Manual which is what they were taught in med school. No matter how great or smart or well-intentioned they are - they are just not educated properly because of wrong information.
Posts: 589 | From Rhode Island | Registered: Jun 2006
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quote:Originally posted by CraigC: If a person who is diagnosed with Parkinsons improves on abx, I'd say that they were misdiagnosed to begin with.
I agree. But what if the Parkinson's patient "tried" abx, and then herxed?
They would tell their duck, "It made me worse." The duck then says, "OK. Well, just stop the meds."
End of story.
If you COMPLETELY trust your duck, you're not going to question what just happened as being from anything other than a "reaction" to the meds.
But, Parkinson's patients go to neurologists. VERY few neuros know ANYTHING about lyme disease and it's doubtful they would even consider TRYING antibiotics!!
I agree, most neuros know nothing about Lyme. And I say if Michael tried the abx and herxed, he has Lyme and not Parkinsons. It is a tragedy, if he didn't get the proper treatment for his disease, but I maintain a misdiagnoses, if he tried and reacted to abx.
Another thing to consider too, is that many Lyme patients can present with neuro symptoms alone, and not the physical symptoms. Parkinsons by it's nature, always involves muscle rigidity, etc. As stated before, my opinion is that maybe sometimes patients who have Lyme can acquire other diseases, but that they are NOT one in the same.
I'm not debating that his doctors might not recognize a herx, or might misdiagnose. In fact, that's exactly what I am saying. However, it appears that many want to call the two diseases the same thing.
I certainly am not minimizing the effects of Lyme and it's impact [who knows, I may indeed have it myself], but the problem I see is when many can draw a parallel between Lyme and everything wrong in today's world. I believe that there is much science cannot state as "fact", but when courses of treatment work for one disease and not others, I tend to draw a distinction. Sometimes I believe people can get so caught up in being sick, that they can find a similarity between what they have and every ailment known today.
-------------------- Craig Posts: 207 | From Tallahassee, Florida | Registered: Nov 2007
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lymie_in_md
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Member # 14197
Are Young Adults Regularly Misdiagnosed? Michael was a smart man in his 30's who was an actor with moderate success. He was, however, a little too impressed with Ivy. Meaning, anyone who worked as part of an "Ivy League" faculty was like a great heavenly Gnostic sage, offering the great pearls of truth. If he only knew the reality.
He was from New York and had enjoyed a wide range of vacations in the past, including hiking in the lovely New York mountains.
Lets look at the simple basic symptoms of Lyme disease.
Primary Symptoms That Are Reported to Diagnose Parkinson's Disease Slow intentional movement -- if you want to go to another room it is hard to initiate this action, and once you are moving it is hard to keep going and get to the kitchen. Tremors in almost any part of the body when you are resting. Rigid or Stiff muscles -- one of the reason's folks with Parkinson's have frozen expressions Poor balance -- my grandfather had Parkinson's from the influenza in the 1910's and this was a serious problem. He would finally get moving and he could not keep his balance and would fall. Eccentric walking -- features include a wide based gait, with poor arm movement and tiny steps. Other Parkinson's Signs The neurological dopamine damage in the brain can cause many other symptoms. Indeed, a very wide range. Here is just a sampling:
Psychosis and agitation Eating trouble -- since the muscles of eating are acting poorly, food can collect in the back of the throat. Swallowing is a very complex muscle and nerve action. Excess sweating and excess saliva. Trouble with urine and stool control Depression and hopelessness -- I recall my grandfather telling me over the space of fifteen minutes that he was not always this way. I was sad he said, this since I knew he was a vital and active lead RCA engineer in his time, and an avid dancer and golfer. Skin dryness and other skin trouble Eccentric handwriting including tremor signs at the point of initiation before the writing started and then very tiny letters. Low volume speech The Diagnostic Disaster The heart of the Parkinson's diagnosis is ruling out other neurological disorders, since these symptoms are found in many disorders. Most importantly, the symptoms above can occur in neurological Lyme.
As has been very well described, neuroLyme can present in a hundred ways and is called the "Great Imitator." Yet many Neurologists do not take this seriously and never consider Lyme in Seizures, ALS, Migraines, MS, Strokes or hundreds of other neurology or psychiatric diagnoses.
Since Lyme is the leading vector illness in the US, and lab tests are commonly utter junk (See 20 articles on this fact on my web site), it is easy to miss. Lyme with Parkinson's symptoms looks exactly like real Parkinson's. Exactly!
Parkinson's is progressive over years. But so is Lyme.
Parkinson's waxes and wanes, and so do the spirochetes of Lyme.
****
Michael had four labs look at his blood and urine, and in conclusion it was felt he might have Lyme. After eight weeks these tests were repeated and he was clearly positive -- perhaps because some Lyme was killed and pieces caused a large immune response and some parts were found in both the urine and the blood.
In six months he was the best he had been in four years, and was using a greatly reduced Parkinson's medication dose.
He had three SPECT Scans, which are nuclear exams of how the brain is eating.
The first SPECT Scan showed eight lobes with a patchy Lyme-like finding.
The second looked much worse. We suspect it was worse from the death of so many Lyme bugs and their release of toxins in their outer membrane increasing inflammation.
The third SPECT scan was markedly improved, but not yet normal.
Michael is planning on doing more work, and is pleased with his progress. He suspects he got Lyme while camping about eight years ago.
posted
Just found it strange, Bob! I'm not that nit-picky!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lymie_in_md
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posted
I get a little dyslexic in my comments and I find corrections helpful. Thankyou
I was amazed that a doctor would have specific comments, beyond our guessing as to what was happening with Michael. Especially the spect scans detailing the level of disease. I'm sure none of us can afford to have such intricate diagnostic testing for neurolyme. Also to find this article on the internet on what seems to be a credible site.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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1) If you follow the IDSA guidelines and get two weeks of abx-- (like I did 10 YEARS AGO) and did not get better- they need to find another Dx for you.
If not Lyme, then what.??
Parkinson's is a CLINICAL DX, and uses a trained physicians judgment, in addition to available tests and patient interviews.
2) It is well known and if you have read, listened or seen any presentions by Dr P, former President of ILADS. He has drawn many scientific fact based conclusions that show the striking similarities between presenting symptoms for MS, Parkinsons, and Lyme.
And that MS, & Parkinson's may be triggered by an unknown virus......SUCH AS LYME.
In addition many LLMD's have reevaluated, tested and treated MANY individuals who have been Dx with Parkinson's, & MS who ended up getting better after longer term treatment---- AND testing and DX for co-infections.
LAST it is too bad that we may have lost a good persons health (M. Fox) and spokesman to help others if his condition at least may have started with Lyme.
It is well know that he did have Lyme... then Parkinson's.
People who are Dx with Lyme-- & co-infections CAN BE HELPED with proper Dx and treatment, especially with some SIMPLE early ID & intervention by a qualified physician without bias.
Bottom Line; more people have and get Lyme in the US than MS and Parkinson's, but we have no where near the support, funding for research, public education, and general awareness.
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I think it is very possible that Parkinson;s, Lupus, MS, as well as fibromyalgia and chronic fatigue syndrome do not exist at all, and are really just manifestations of lyme disease. If they are treated with steroids, they probably just got worse.
None of these illnesses have definitive testing. None of them.
All of them could be viewed as exacerbations of Lyme Disease.
I know many LLMDs believe this to be the case, have researched it, and published on it.
Don't you think it is just a little too coincidental that it has recently been discovered that anitibiotics help MS???
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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Dr. Steven Phillips wrapped up our conference with a comprehensive and informative presentation concentrating on the connections between Lyme Disease and Multiple Sclerosis. He is the President of the International Lyme and associated Diseases Society (ILADS), www.ILADS.org and has been researching Lyme Disease for the past 15 years.
Dr. Phillips spoke of the cyst or L form of the Lyme spirochete and how the approved current testing does not look for these forms. The Lyme organism can change forms according to the condition of the body. The proteins on the spiral forms are very different from the proteins on the cyst form. He made some interesting points; he believes that most people with Lyme are asymptomatic and that Lyme can have a long latency period - neurologic symptoms can present themselves many years later after the initial infection or bite.
He went on to say that Multiple Sclerosis is a chronic central nervous system infection similar to Lyme. Every feature you see associated with M. S. can also be found in Lyme. Lyme testing is badly flawed, but even with these drawbacks, it has been found that M.S. patients are twice as likely to test positive for Lyme.
Phillips said that when the spiral form of Bb was injected into the spinal fluid, there was 100% conversion of Bb from the spiral form to the cystic or L form. The cyst forms of the Lyme germ are being found in the spinal fluid of M.S. patients. He then made the following crucial point: steroids are frequently used to treat M.S., but steroids can increase bacterial growth and make Lyme much worse. Lyme testing is very inaccurate, especially in those with a long-term chronic illness.
Dr. Phillips presented study after study which support the fact that chronic Lyme is not a "post Lyme" autoimmune condition but rather an ongoing chronic infection. He also showed us an extensive number of studies which link M.S to Lyme Disease, and explained that one of the clues that Lyme can be a chronic infection is the herxheimer reaction. A herxheimer reaction is a worsening of symptoms when initially being treated with antimicrobials. This indicates that the treatment is working, -that the medicines are hitting the target and creating a type of cleansing reaction.
Phillips strongly suggested that Bb may be one of the causes of M.S. He stressed that persistent infection can occur despite long-term antibiotics. He also mentioned that brain and cervical cord lesions are found in both Lyme and M.S. Phillips called for a large-scale treatment of antibiotics in Multiple Sclerosis.
This conference was not concerned exclusively with the Lyme bacteria but was revealing to us that Borrelia burgdorferi, along with many other co-infections may be at the root of many of our autoimmune diseases.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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posted
Addition of antibiotics to MS therapy could slow down progression of the disease Medical Research News Published: Tuesday, 11-Dec-2007
Researchers from Louisiana State University in the U.S. are suggesting that the addition of antibiotics to standard drug therapy for multiple sclerosis, may slow down the progress of the disease.
The researchers believe the antibiotic possibly hinders the action of an enzyme that destroys certain cells in the nervous system.
Multiple sclerosis (MS) is a chronic, inflammatory, demyelinating disease that affects the central nervous system.
It usually occurs in young adults and is more common in women than men and affects 2.5 million people worldwide.
MS usually affects genetically susceptible individuals but it's trigger remains unclear.
The inflammation affects parts of the brain causing a degeneration of brain tissue and in the most common type, relapsing-remitting MS, patients experience attacks of symptoms such as muscle weakness and spasms followed by periods of symptom-free remission.
Many patients with relapsing-remitting MS are often prescribed the medication interferon which boosts the immune system and fights viruses, but some still experience relapses and may continue to develop new areas of damaged brain tissue (lesions) which are visible on magnetic resonance imaging (MRI).
Dr. Alireza Minagar and colleagues conducted a small trial involving 15 patients with an average age of 44.5 years with relapsing-remitting MS who had been taking interferon for at least six months and were experiencing symptoms and developing new brain lesions.
The researchers suspect these unpredictable attacks may be triggered by an inappropriate response to viral or bacterial infections, with symptoms appearing and disappearing in a random manner.
For a four month period the patients were given a 100mg a day of doxycycline, a member of the tetracycline family of antibiotics, to take in addition to their regular dose of interferon.
The patients underwent monthly neurological examinations, MRI's to detect brain lesions and blood tests to monitor their safety.
At the end of this period brain scans revealed that brain tissue damage was reduced by at least 25% in nine of the patients and there were also signs that disability levels had improved.
While the antibiotics are not expensive and are easily available, which would make them an attractive treatment for MS if they were shown to be beneficial, some critics say the study was small, and no comparison was made with patients who did not take doxycycline.
The research will appear in the February 2008 print issue of Archives of Neurology, one of the JAMA/Archives journals.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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daise
Unregistered
posted
Craig C,
Concerning MS, fibro, chronic fatigue, alzheimers, ALS, lupus, parkinson's and so forth, the bottom line for the patient is not a hypothetical argument.
The bottom line for the patient is to be properly assessed.
Almost no neurologist in the country will consider chronic Lyme disease.
The bottom line for a very ill human being is not which way to go on a theoretical point, but rather, to check-out ALL possible diagnoses. [Edited from "ALL avenues.]
Problem: Getting proper Lyme assessment isn't on the radar of the overwhelming majority of people.
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
My opinion is that a significant percentage of Parkinson's may be related to Lyme - either as a trigger or contributor. Some of the doctors that I have worked with suggest it could be over 50%. I have also personally known one person that was dx'd with severe Parkinson's and was wheelchair-bound and later treated for Lyme and recovered to the point of no longer being in a wheelchair.
I think we have to keep in mind that just because something has not been proven does not mean it is not a real possibility.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
I don't think I ever suggested that very ill people shouldn't explore all avenues. However, I have a problem with people who quote study after study, that use words such as "possibly", "may", and "could", to validate their points. One of the studies even stated that the population studied was very small, and that no comparison was done with a group who didn't take abx. How can anything definitively be stated, if you don't look at the whole picture?
I've never claimed that I have the answers. In fact, I know I don't. However, I do have common sense. And that common sense tells me that as patients, we don't need to ridicule regular doctors about not "thinking outside the box", if we're going to tie everything to Lyme disease.
For instance, every adverse reaction we experience, isn't necessarily a herxheimer reaction, yet many on here don't want to consider a patient's possible adverse reaction to meds as the cause. In addition, I keep reading posts from new individuals with symptoms, who want to know if the symptoms are Lyme. Almost without fail, many on here respond that it "definitely sounds like Lyme to them". It might be something as simple as a migraine headache, yet it is always tied to Lyme by many.
I just think if we're going to expect more out of "ducks", then we as patients could sometimes use a dose of objectivity ourselves. I guess when people are really sick, it's natural to lose that objectivity. It is quite possible to scare ourselves to the point of not "attempting" to live a normal life, but I for one hope never to do that.
Finally, I hope that this post doesn't get interpreted to mean I'm not sensitive to illness, since that couldn't be further from the truth. I myself, am going through unexplained symptoms, which are neuro-related. However, if I didn't explore EVERY option [not just Lyme], I might miss what is truly at the root of my problem.
-------------------- Craig Posts: 207 | From Tallahassee, Florida | Registered: Nov 2007
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quote:"It might be something as simple as a migraine headache, yet it is always tied to Lyme by many."
But Craig, don't you understand that Lyme causes migraines in a large percentage of Lyme patients? Why wouldn't it be attributed to Lyme?
It almost doesn't even matter if Lyme is in question here - I think we are also looking at a broad spectrum of other bacterial and sometimes viral infections here. There's mycoplasma, strep, etc etc in addition to Lyme.
It is the whole complex that is most likely causing these illness, oftentimes with lyme and the triggering factor.
The point is that the docs are missing the boat over and over again. They are still treating the "autoimmune diseases" with immunosuppressants etc, when the root cause is seeming to be a bacterial infection of some sort - be it Lyme or not!
The problem is that their treatment is oftentimes making the patient worse after a brief period of feeling better.
By suppressing the immune system these bugs get stronger - whatever they may be!!! Lyme spirochete or not!
Sure there is a place for immunosuppression in these infections - but one had better be darned sure that it is absolutely necessary - i.e. to save the person's life.
Posts: 589 | From Rhode Island | Registered: Jun 2006
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posted
Why would anyone want to let go of the cash cow that is Michael J. Foxx? Think about that and then think of the duck docs. Why would they want to be involved with or help "fund" our "losing" cause?
Posts: 422 | From Luck home | Registered: Sep 2005
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posted
Sure, Lyme does have multiple symptoms. But from what I've witnessed, a person can come on this site and just claim to be suffering from a migraine headache alone, and it's a certainty that many will claim it's Lyme disease.
Again, I am a firm believer that it exists, and that doctors miss the diagnoses all of the time; however, it's not being healthy or objective, to assume everyone who presents with a symptom, has Lyme disease.
I certainly agree with the folks on here, who want to exhaust all possibilities. I am in that boat as well. It's those that use studies with no definitive conclusion, as well as those from the "Lyme only" school that concern me.
-------------------- Craig Posts: 207 | From Tallahassee, Florida | Registered: Nov 2007
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posted
I do understand what you are saying Craig. Honestly.
However, I have seen too many people with seemingly only "one" symptom, who, upon further investigation, have a mutitude of Lyme symptoms that they didn't pay much mind to.
People take it for granted that they get "disoriented" or "have dizzy spells", or have "bad joints" and won't mention to the casual onlooker or even to a doctor for that matter.
This is where the "only migraines" example comes into play.
I know so many migraine patients who have the multitudes of low-grade Lyme symptoms that fall under the radar.
Why wait until Lyme is killing them to seek diagnosis or treatment? As it is, the migraines are already greatly impacting their lives.
But I do know what you are saying and I think it is something that we all struggle with - when to say something to somebody - to those we love or otherwise...
When is it right to suspect Lyme and point out the possiblity and recommend that they seek a specialist?
That is the big question here I think.
That being said, however, Michael J, Fox, in my opinion, should definitely seek out a specialist. Posts: 589 | From Rhode Island | Registered: Jun 2006
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daise
Unregistered
posted
Hi Craig C,
There was a time when most doctors didn't know about chronic Lyme disease.
That can not be said, anymore. The overwhelming majority DO know about chronic Lyme disease, coast-to-coast. They are buzzing with it, behind the scenes. And still, they deny us.
They want us to take an antidepressant to cure physical signs of arthritis, muscle pain that can bring crippling walk, physical signs that are neuro, etc.
In other words, they want us to believe that it's All in our heads. That we are making-up our signs and symptoms.
After he talked by phone with an LLMD a few times, and I'd had a positive CD57 count, my PCP (Primary Care Physician) concluded that my real problem was that I was in menopause!
I'd finished with menopause almost a year and a half before! Blame it on menopause?
I stood up and I walked out, dragging along my right side, and feeling the pain of chronic Lyme disease (I'd had Bell's palsy with arthritis and brain lesions on two MRI's.)
Or they conclude that all we need is the right painkiller and we'll be cured.
In my opinion, that is murder or attempted murder. And they do this to children.
I don't care if they have a medical degree: A duck is a duck. Quack!
I can prove my point.
After I fired my PCP, I got an appointment with a new one. I was her first appointment, as she'd just moved to town. I got in front of her and told her that I have chronic Lyme. I'd been diagnosed. She hated hearing that.
I tried to educate her, with ILADS material.
A doctor who works in administration with the insurance company, made my new PCP promise that she would administer my Lyme antibiotic treatment, as recommended by my out of town LLMD, for at least a period of one year.
She ordered home health care for 6 months for IV Rocephen and later she ordered LA Bicillin shots, administered by her nurse.
Several months later, she reniged on that promise: she cut off my antibiotics, suddenly. I still had signs and symptoms galore. I'd shown her my daily diary.
I did nothing to offend her nor to make her hostile towards me.
She went hostile, also, when I mentioned coinfections.
My nurse case manager (she's with my insurance company) and I called every PCP and internist in the insurance provider book (for an insurance company, they have a lot of providers.)
Some doctors, I saw in person, to plead my case.
All were told that I have chronic Lyme disease, and that that was NOW handled exclusively by my Lyme-literate doctor. But that his office was not located in town.
They were all told that I needed a local PCP to handle my basic and preventive care (pap smears, hypothyroidism, PCOS, etc.)
EVERY PCP AND INTERNIST TURNED ME DOWN (or turned my nurse case manager down, calling on my behalf.)
Chronic Lyme patients do not deserve basic and preventive medical care? That is evil.
Here is a case where the insurance company was willing, but the PCP's and internists were NOT.
Please understand that I live in a southern desert city.
Yes, the overwhelming majority of doctors know about chronic Lyme disease.
It's profits over patients.
It's America turned upside down.
I found a new PCP in the next years provider book, who works part-time. He is my new, wonderful PCP.
I also found a gastroenterologist who didn't twitch when I said I have chronic Lyme. In fact, she wanted to know how I was doing on heavy antibiotics.
She checked me out thorougly with a colonoscopy and endoscopy, searching for infections possibly from the long-term antibiotics.[Edited to include the last 6 words.]
She was delighted when she reported none. (And also, no cancer!) She's terrific.
I also found a very thorough eye doctor with a bit of experience with Lyme and he never twitched, either.
I consider all 3 of them to be exceptional. My LLMD is a hero doctor.
posted
Folks, again I never said that Lyme doesn't exist. And sure, a migraine "could" be one symptom of Lyme disease. But let's not go overboard, and pronounce everyone with a migraine headache, sick with Lyme disease. Do you not see what I'm saying?
I can be objective, while still admitting that doctor's do miss diagnoses, Lyme does exist, and that doctors view profits over their patients. However, the last part can be said for most doctors, including the ones seen for Lyme disease. The few LLMDs offices I've dealt with since searching for a good one, were prime examples of that. Their office managers/staff spent more time telling me how insurance wouldn't cover their "pricy" costs, and that they'd want cash or check from me. I realize that they have to tell people that, but when they spend more time elaborating on that, than they do asking me what's wrong with me, it sends up a red flag.
-------------------- Craig Posts: 207 | From Tallahassee, Florida | Registered: Nov 2007
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