Dekrator48
Frequent Contributor (5K+ posts)
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posted
I bet we are all thinking that he has lyme-induced MS!
I wouldn't doubt it.
Thanks.
-------------------- 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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lymeloco
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posted
No, he definately has MS. I'm just hoping that if Oprah can do a show on MS, then she'll also do one on lyme disease.
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glm1111
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posted
MS is often Lyme disease misdiagnosed. I believe he lives in Connecticut as well. I sent him a lot of info about Lyme disease about 7-8yrs ago through his TV station/program. MS is just a name, not the cause of the disease.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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'Kete-tracker
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posted
glm is right. Multiple sclerosis (sp?) is just a diagnosis for a disorder with no known root cause (yet). Chances are, there are many causes, 1 of which is Lyme infection.
I hope Lyme comes up during his interview & Oprah says, "well, as a matter of Fact..." Posts: 1233 | From Dover, NH | Registered: Sep 2008
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glm1111
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posted
I am watching it now and he is speaking to Dr. Oz who is giving an explanation of the pain in his nervous system. They don't speak of a cause because he says they don't know.
With all the info out there about the connection between MS and Lyme disease, I can't for the life of me figure out why such intelligent people can't see the forest through the trees.
I don't know about anyone else, but I find this maddening and frustrating. Montel could be a huge advocate for Lyme disease. Wondering what everyone else thinks about this?
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Dekrator48
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posted
I posted alot of info on the Oprah message board about Montel's appearance. It doesn't post right away since it has to be approved by the moderators.
If they actually post it, I'll copy it here.
He talked about the burning pain in his legs/feet, trigeminal neuralgia and depression.
I just wanted to reach inside the tv and scream LYME at him!
-------------------- 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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lymeloco
Unregistered
posted
I'm not sure I know what to think anymore. So does that mean we also have no myelin sheath on our nerves?
I thought they could tell with an emg if your nerves are misfiring. I passed that test some years back.
I do think that a lot of disease could possibly be linked to lyme disease but there's no proof yet, is there? If not, then we are only speculating.
He takes 27 pills a day, plus shots. Whoa, I'm beginning to think maybe the meds. are hurting more than helping.
Besides antibiotics killing the bacteria, what other medicinal purposes do the have?
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glm1111
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posted
Dekrator..
.When I sent the info to his show yrs ago, I followed up with a call and got to speak to one of the producers. She said he was open to all input.
I guess he nixed the idea of Lyme and probably went to Yale and the other big hospitals for a MISDIAGNOSIS. Looking forward to reading your post on Oprahs message board.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Well said Painted Turtle! While I definitely had late-stage Lyme 10+ years ago my symptoms now are a lot different which makes me wonder if it is really MS and not Lyme this time around? I'm sure there is a correlation but again, not all MS/Parkinsons/Lupus, etc is Lyme.
-------------------- Lisa D Posts: 103 | From MA | Registered: Jan 2009
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Dekrator48
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posted
I do agree that not all MS is caused by lyme.
It is my opinion, however, that illnesses like MS, lupus, Parkinson's etc are caused by an infection.
My LLMD agrees. He says that the body does not just start attacking itself for no reason....something starts a long cascade of problems, eventually leading to a deep hole.
Could be a virus, or a different bacterial illness, etc.
I do think though, that there are alot of people out there who have a Borrelia burgdorferi infection and don't know that it is responsible for their illness.
-------------------- 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
Well great.....I'd rather have Lyme than MS. So how does one know? I guess if abx clears the symptoms that's a good indicator. Mine cleared the first time but are somewhat back now....so is it a relapse or MS? Is TN specific only to MS?
Posts: 45 | From Crestview, Fl U.S | Registered: Feb 2004
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glm1111
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posted
I agree with Dekrator....Bacteria,spirochetes fungus, mold, viruses,parasites, worms etc are almost always found in many illnesses that are labeled syndromes.
I also agree that the body does not just begin attacking itself. It is also highly suspected now that depression, bi-polar, schizophrena etc have a pathogen as it's cause.
It just makes sense. I tested positive for TN on my emg by my neurologist. My mother was diagnosed with ALS and subsequently died from it.
I know now she had Lyme disease as she had almost ALL the symptoms. Given these labels allows many to fall through the cracks.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Abxnomore
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posted
There's a LLMD in CT who has done extensive research on the connection between Lyme and MS. There's also a DVD about it from The Lyme Symposium held at the University of New Haven in 2006.
If the spirochete is eating away at the myelin sheath and those white lesions are really the same as the ones lyme patients get
I would not be surprised at all if MS really is Lyme, mostly especially in younger people. How many of us have been told we have had MS because we had brain lesions only to find out we really has lyme?
I know two people who died, one from AlS and one from so called dementia and I am absolutely convinced knowing what I now know it was lyme that killed them. They both had the bulls eye rash, too.
[ 03-17-2009, 10:11 PM: Message edited by: Abxnomore ]
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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-------------------- 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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lymeloco
Unregistered
posted
I thought they could tell if it's ms or lyme according to where the lesions are.
Do you really think that doctors don't know about lyme? I doubt it very much.
I think there's more to all of this than we know. Can't say for sure and maybe it's my paranoia but something is telling me cover-up!
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Abxnomore
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posted
I don't think that is so. Most doctors will assume lesions on the brain are indicative of MS and wont even consider lyme unless they are lyme literate.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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treepatrol
Honored Contributor (10K+ posts)
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posted
More and More & more & more & more things are Lyme OR tick or bug infections!!!
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
For those with Lyme and lesions on MRI, how long were you affected and what type of neuro symptoms did you exhibit?
I was diagnosed 10 + years ago with late-stage Lyme and had neuro symptoms that showed up on SPECT scan and in neuropsych testing but never had any lesions.
-------------------- Lisa D Posts: 103 | From MA | Registered: Jan 2009
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posted
Lymloco, I'm paranoid too, and I think the "powers that be" -read IDSA-know pretty darn well about the MS/Lyme link.
But I also agree with ABXnomore, at the individual doctor level there is just a lot of ignorance (and reliance on substandard testing) that promotes MS dx over neuroborreliosis.
And lets be clear---it is possible that NEUROborreliosis can present EXACTLY like MS in EVERY way----Lesions, CSF analysis, Symptoms, Relapsing and Remitting nature, long term outcome etc,etc,etc,.
Dekrator, Thanks for the PP, I saved that one!
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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sutherngrl
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posted
Okay, since IDSA was brought up here...... The IDSA doesn't seem to have anything to say about people with MS, FM, CFS, Parkinsons and ALS having long term, life long treatment. Why? Aren't all those medications just as bad and probably actually much worse than antibiotics? Montel had a handfull, over 20 pills that he took all at one time.
Only those of us who come forth and say we have LD are considered lunatics by the IDSA. Why? We have the same symptoms as those illnesses of unknown origin mentioned above, yet we are the only ones that get kicked to the curb by the IDSA. Why?
They aren't trying to take away any of those other treatments from people. Nor are they trying to take away treatment from people with hepatitis, TB, or HIV, all long term treatments.
It is obvious that something is wrong with this picture. It is obvious that they have something to hide that only concerns Lyme Disease. Is it just conflicts of interest, or is it way bigger than that?
I don't for one minute think they are worried about the long term outcome of us taking antibiotics long term. Science should be able to keep up with changing bacteria. That should be their challenge. But instead they are putting all their energy into convincing the world that LD is all in our heads.
Sorry, I am just so angry at the unfairness that is bestowed upon "us", the lymies.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Good point. I have often wondered how many on the IDSA panel have conflict of interest with the medications that are used for the illnesses you mention.
Do they have their hand in the $$ making cookie jar that produces the very expensive meds used to tx but not cure Alzheimers, MS, Fibro/CFS and all the others you mentioned.
My guess would be yes, but that is just a guess of course.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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sutherngrl
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posted
njlymemom, that is probably it. If their hands and money were in the antibiotics that we are taking, they would support Chronic Lyme Disease whole heartedly.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Dekrator48
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posted
The IDSA uses the excuse that long term antibiotic use could lead to antibiotic resistant infections like MRSA.
That chance should be a patient's choice however.
Only those who suffer this could know that the chance of recovery far outweighs the chance of developing MRSA.
-------------------- 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
my opinion on southern girl's statement about idsa ... ms, als, etc.
those illnesses are NOT included in INFECTIOUS DISEASES LIKE OUR KNOWN CHRONIC LYME DISEASE is along with west nile virus, etc.
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posted
I remember hearing somewhere that before MS was an "accepted" diagnosis that people with MS in the late 1800's, early 1900's were also shunned and ridiculed for their symptoms - a lot of the time they were accused of being "drunks' etc...
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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"The first patient Dr. Freud ever treated was his former Nanny, who had Multiple Sclerosis. *Creeping Paralysis* as it was called in those days, was considered a mental condition caused by *Female Hysteria*. As such, little or no extensive research was conducted into the mysteries of MS, until very recent times."
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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sutherngrl
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posted
Bettyg, well maybe those illness are not infectious in nature, at least to the IDSA.... not in my opinion;
but Hepatitis, TB and HIV are definitely infectious diseases. The IDSA doesn't freak out when it comes to treating those long term.
It's only LD they have a problem with.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Painted - it is interesting - history keeps repeating.
It is a shame, but it is also a way to see that Lyme will one day be accepted by all for the horrific complex illness it is - hopefully very very soon!
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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bettyg
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posted
southern, i totally agree with you!
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lymeloco
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posted
If IDSA is aware of the ms/lyme link, I would HOPE someone with a CONSCIENCE would come forward.
I have noticed MANY clinics popping up at hospitals for ms and support for patients and their families.
There was a time when ms was not a children's disease and now it is.
Sometimes I think about going off all medication just to boycott big pharma. Then where would they be? Where would we be?
All the medication that Montel is on and he's still miserable after ten years. Does anyone ever wonder if it IS all the meds. they promote that make people sick?
Listen to the damn commercials! Side effects alone are enough to kill you.
I do believe that with so many of us that have lyme here and other countries, that our voices will be heard! You know why?
BECAUSE WE ARE NOT GOING TO STOP FIGHTING FOR THE TRUTH!!!
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lymeloco
Unregistered
posted
I need to vent again! If IDSA is trying to pass chronic LD for depression, then why wouldn't they say that about ms patient's?
My heart went out to Montel yesterday, but if that were any of us crying or talking about suicide, you can bet your sweet bottom they'd pass us off as crazy or depressed!
MS is a clinical disease and they don't know what causes it and yet, we know what causes lyme and what that bacteria can do to a person.
Maybe there should be a march in front of the White House.
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sutherngrl
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posted
Lymeloco, we don't even have to talk about suicide and cry to be labeled crazy. Most of us Lymnies are very mentally stable from what I can tell and that is why being labeled makes it even that much more ridiculous.
My heart went out to Montel too. My heart breaks for anyone dealing with chronic illness, including all of us.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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"Dr. P 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.
Dr P 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. Dr P called for a large-scale treatment of antibiotics in Multiple Sclerosis. "
-------------------- Lisa D Posts: 103 | From MA | Registered: Jan 2009
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posted
I really don't think he has Lyme. We can not blame everything on Lyme. Yes certain cases of MS are actually Lyme, but I think those are misdiagnosed cases and not *true* MS.
He didn't even go into that much depth and I haven't even heard of many of his symptoms. Especially the Diaphragm Spasms immediately brought on by heat.
Regardless of what is actually going on -- that episode was really inspiring to me. I look up to him a lot. Very eye opening.
posted
Frankly I have to say that I felt very uncomfortable with the presentation. I feel Montel was very much feeling victimized by the symptoms and I have to say that I have been there. Dr Oz said that people find a meaning with the disease, which I have to say that I agree and in my process was a turning point.
Hopefully Montel will get to this place. I had to stop it halfway through. It was too depressing. I don't need to feel victimized by illness, people, or life anymore. That is part of my larger Story.
Posts: 830 | From Colorado | Registered: Mar 2005
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Keebler
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posted
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Lisa / Capa -
thanks for that quote. Do you have a link to that? I find that if I present information to a doctor, the link to the original work is always very helpful.
Keebler
Honored Contributor (25K+ posts)
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posted
-
I'm with aliyalex in that I was very uncomfortable with the entire MS presentation, too - for many reasons that my poor hands or brain endurance just can't go into right now.
One thing about teh victimization point is that while Montel does work very hard at exercise, he does fight this and work to find meaning in life, and my heart does break for his pain . . .
However, he has chosen to accept the view of MS doctors only. I am perplexed at his not looking further and that, right there, makes him a victim of the very doctors who are to be his advisors. But Montel seems unaware of that.
I wonder if some of his meds are steroids. Steroids (other than being bad for those with infections) can make one an emotional yo-yo. I know, before I knew about lyme, I had been put on steroids. I was very teary.
Had this been a presentation of my former public speaking students, I would have only given this team a "C" for their research efforts. It was not balanced. But, to be fair, since Oprah came on saying she knew nothing about MS, this show was not meant to be about MS but just a talk with Montel, I guess.
It was inadequate, indeed. But, then, it was probably meant more as a feature into Montel's life and not a full documentary on Frontline or PBS.
====
lymeloco wrote: " . . .My heart went out to Montel yesterday, but if that were any of us crying or talking about suicide, you can bet your sweet bottom they'd pass us off as crazy or depressed! . . ."
Oh, yes. Still, I admire Montel for not hiding his feelings.
But, for Dr. Oz to say that if you are depressed after being with a person then that person is clinically depressed - well, that is so wrong - so incomplete.
Most people (Americans more than the general world population, I think) just can't handle illness. So, to be around someone like a lyme patient who is often very ill with little avenues for treatment, well - that would be depressing.
But, that would not mean they are depressed. It's sad situation that truly separates the men from the boys. It's time we grow up and accept that some stuff is very hard - but that it can be tackled.
I think Dr. Oz's comment struck a blow for anyone needing understanding and compassion for the challenges they face.
It seemed to give people license to walk away from anyone who is less than happy. If lyme disease (and other chronic stealth infections) could be dealt with in daylight, I know there would be much more happiness.
I know Montel just wanted to share with the world that a person can fight. And he is a model of that in many ways. I just hope he looks around to causes. And that information is unlikely to come from the MS experts.
quote:Originally posted by Abxnomore: Most doctors will assume lesions on the brain are indicative of MS and wont even consider lyme unless they are lyme literate. [/QB]
agree
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
Although the promotion for the show focused on Montel's battle with MS, I think the overall show was more about the process of learning to live with something like a heavy diagnosis, whether it be MS, HIV, or cancer. At the end, Montel presented himself less a victim.
But come on, anyone who has trigeminal neuralgia and constant dialy pain knows, it's HARD and there really is the transcending decision to actually stay on the planet even though you can't imagine living every day with this pain.
I thought it was good to bring this awareness so others who are earlier on in the process (not fully in acceptance, understanding or wanting to live with it) can identify. I think it was a very important show.
The other thing is, how does anyone know what Montel has sought out? Maybe he went the Lyme route and it didn't pan out or help? Maybe he did consider it? Maybe he's consulted lots of different doctors and the MS really is his problem. It's actually possible.
I don't think anyone who has lyme, who is not cured by long term antibiotics, really has the legitimacy to implore people to take long term antibiotics for a cure.
I'm not pointing at anyone specifically, but just saying.
The whole crying with steroid thing though, is a good point. It is entirely possible Montel has not sought out all the possible avenues.
thanks for that quote. Do you have a link to that? I find that if I present information to a doctor, the link to the original work is always very helpful.
posted
I felt terrible for Montel and thought his whole point of going on the show was to help people cope with illness by NOT being a victim - I actually found him very inspiring, regardless of his diagnosis
I am confused by the judgement of his treatment choices - since when is 100% of MS cases Lyme? I used to work extensively with adult MS patients in a nursing home as a Speech Language Pathologist before I got sick and while there are many similarities between Lyme and MS, there are also differences.
I just find it very disturbing when people judge my treatment choices so I am very hesitent to judge others - I think Montel is doing the best to his ability.
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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Keebler
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posted
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painted turtle,
Good points in that we don't know what he sought out in his dx process.
I guess, I was expecting them to at least share the research that many MS patients have been found to have chronic infections such as lyme and have been helped by certain abx or other methods of addressing the infections.
True point - long term abx don't work for all lyme patients but they have worked for many.
I've never been on them myself for more than for 2 months so never had the chance to find out - or had major reactions and could not continue. With no LLMD in my state, no one with MS will ever have the chance to explore the possibility that lyme may be a cause, though, unless they leave the state.
Still, if at least identified, even if long-term abx might not work for someone, there are other ways to address infections. I just wish that they had mentioned the importance of ruling out infections. Dr. Oz did list to rule out other dx but with lyme being so hard to identify I think it would have been best to have mentioned that.
I can see that, in a short span of time, not everything could be said and any program will just be one contribution to the overall dialogue.
posted
I experienced crying and inappropriate laughter but was on antibiotics. It eventually stopped.
If I remember correctly didn't IDSA also say that long term antibiotics are just a placebo effect? How do they know this? What scientific proof do they have?
How does one distinguish the fact that Montel is on 27 different medicines, not counting his injections but those aren't considered a placebo effect?
He still is miserable taking all those meds., so how can one say they're helping? I'm a bit confused on this one.
Yes, your right painted turtle, it was a show about living and dealing with illness, or how one copes after finding out they have a disease.
I also admire him for not hiding his feelings. I'm sure they go through the same thing we do when nobody understands what your going through because...YOU LOOK GOOD!!!!!!!!!
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posted
I definitely believe that many cases of MS are Lyme Disease.
I was given a possible MS DX by a neuro and it did not sit right with me. I also was dx with Fibro/ CFS.
As soon as I told the neuro. that my Lyme test came back positive the neurologist dropped me like a hot potato. Point being that many Neorologists will not even consider Lyme at all end of story and if you test positive many will not see or treat you any more.
I also know two woman within the span of one year of each other were diagnosed with MS. Now, these two woman are best friends and travel, hike, and have camped together for years. They both live in a Lyme endemic area of upstate NY and I find it very peculiar that they both have MS.
All the symptoms they have could also be Lyme. They have never been tested for Lyme. Their nerologists don't believe in Lyme.
Point being that many ppl are more fimiliar with MS and pursue that first and then get locked into a MS DX because their doctors either don't want to deal with Lyme or do not believe Chronic Lyme exists.
They still have not proved what causes Lyme and until they do every MS patient should be iformed about the possibility of Lyme.
Another thing to consider is that MS tends to be more prevalent in Lyme endemic areas. WHY???
Of course I am not suggesting that all MS is Lyme. None of us have that proof, but it is highly suggestive that Lyme may be the culprit.
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
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