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MS And Lyme
I was misdiagnosed with MS like so many lymies are. This article talks about MS being Lyme.
http://owndoc.com/lyme/multiple-sclerosis-is-lyme-disease-anatomy-of-a-cover-up/
http://owndoc.com/lyme/multiple-sclerosis-is-lyme-disease-anatomy-of-a-cover-up/
I have found that many of the assertions on the ALDF website are pure opinion, with no scientific basis whatsoever. I consider it a propaganda site, not an informational site.
One can hear the IDSA non-believers sputtering now: "But ... but ... but ... we've already discovered everything worth knowing about so-called 'Lyme' disease, so everyone else must be wrong!" Sigh.
Very interesting about the possible algae aspect.
Very interesting about the possible algae aspect.
"Although the few patients with such clinical problems were described in the 1980s, this appears to be an even rarer event today, since patients are usually diagnosed and treated for Lyme disease, well before there is significant involvement of the CNS."
... and where is the data proving that 'patients are usually diagnosed and treated for Lyme 'well before' there is 'significant involvement of the CNS'?
What balderdash.
... and where is the data proving that 'patients are usually diagnosed and treated for Lyme 'well before' there is 'significant involvement of the CNS'?
What balderdash.
Could you please post links to those articles? I'm interested in reading them. Thank you.
Just a few weeks ago there were articles on the web wherein someone had claimed their research indicated over 90% of neuromuscular disorders were caused by infection with an algae, one that isn't just aquatic, it can be found in soil too.
ALDF (one mouthpiece for the IDSA) has this posted on their site:
"Are the signs and symptoms of Lyme disease identical to those of multiple sclerosis (MS)?"
However, I can't find it on their (ALDF) site but I didn't look very long. Another forum printed it out and I'll just excerpt one paragraph.
excerpt:
"Rarely, and mostly in European patients, does Lyme disease cause inflammation in the central nervous system (CNS), i.e., the brain and/or spinal cord. Although the few patients with such clinical problems were described in the 1980s, this appears to be an even rarer event today, since patients are usually diagnosed and treated for Lyme disease, well before there is significant involvement of the CNS."
(Mojo, I believe you, but evidently the ALDF doesn't.)
"Are the signs and symptoms of Lyme disease identical to those of multiple sclerosis (MS)?"
However, I can't find it on their (ALDF) site but I didn't look very long. Another forum printed it out and I'll just excerpt one paragraph.
excerpt:
"Rarely, and mostly in European patients, does Lyme disease cause inflammation in the central nervous system (CNS), i.e., the brain and/or spinal cord. Although the few patients with such clinical problems were described in the 1980s, this appears to be an even rarer event today, since patients are usually diagnosed and treated for Lyme disease, well before there is significant involvement of the CNS."
(Mojo, I believe you, but evidently the ALDF doesn't.)
P.S. It is from the woman who runs OwnDoc that I learned about Lufeneron for yeast in the vet business. Amazing stuff!
If it's any encouragement, my original neuro, who I recently saw on a follow up, said that there's a great deal of research out there looking for the cause of MS. He has many MS patients and keeps up on the latest. He said there are many in the field who believe it has an infectious trigger and are trying to find it, so far without success. Others are looking for a genetic basis for the immune dysfunction.
Since Lyme patients whose illness mimics MS usually get worse on MS meds and better on anti-Lyme antibiotics, while many MS patients get better on the MS immunomodulators, I'm inclined to believe that Lyme is not the sole cause of MS.
That said, MS is highly variable. I wonder how many people with an MS diagnosis really don't have classic MS. Perhaps MS is a "family" of disorders. A friend's husband has Parkinson's, and his new doc said there was a study that autopsied the brains of a number of Parkinson's patients. Half of them did not have the expected signs of Parkinson's, meaning they had a different neurodegenerative disorder. Perhaps there is a "family" of Parkinson's-like disorders, too. (Although the leading culprit for Parkinson's right now is a group of pesticides/fungicides, suggesting its' trigger is a toxin.)
Even if an infectious trigger is discovered for MS, is still present in MS patients, and can be treated, correcting the immune dysfunction is a whole 'nuther mountain to climb.
If anyone has doubt about an infectious trigger for MS, read about the study of MS on the Faroe Islands after their WWII occupation by the British. The outbreaks of MS in these isolated islands, which had no prior history of MS in its residents, meets all criteria for an infectious cause.
Since Lyme patients whose illness mimics MS usually get worse on MS meds and better on anti-Lyme antibiotics, while many MS patients get better on the MS immunomodulators, I'm inclined to believe that Lyme is not the sole cause of MS.
That said, MS is highly variable. I wonder how many people with an MS diagnosis really don't have classic MS. Perhaps MS is a "family" of disorders. A friend's husband has Parkinson's, and his new doc said there was a study that autopsied the brains of a number of Parkinson's patients. Half of them did not have the expected signs of Parkinson's, meaning they had a different neurodegenerative disorder. Perhaps there is a "family" of Parkinson's-like disorders, too. (Although the leading culprit for Parkinson's right now is a group of pesticides/fungicides, suggesting its' trigger is a toxin.)
Even if an infectious trigger is discovered for MS, is still present in MS patients, and can be treated, correcting the immune dysfunction is a whole 'nuther mountain to climb.
If anyone has doubt about an infectious trigger for MS, read about the study of MS on the Faroe Islands after their WWII occupation by the British. The outbreaks of MS in these isolated islands, which had no prior history of MS in its residents, meets all criteria for an infectious cause.
I just spent a half hour reading many of the posts on that site, and it is quite interesting. Anyone doubting the possibility of Lyme would do well to read some of the patient comments there to get an idea of the approach 'mainstream' medicine takes toward Lyme.
Granted, each patient comment is one data point and not a conclusive answer, but a whole lot of data points do make one want to think more seriously about the possibility of Lyme.
Anyone who reads the linked article and is concerned about their own symptoms should imo find a Lyme specialist for a consultation, because the nonbeliever docs just don't have a clue.
I went through 20 highly trained and experienced MDs trying to find out the cause of my illness, and it was the 20th doc who, in desperation, tested me for Lyme. The test was positive, but the MD told me I 'could not possibly have Lyme'. I knew from a friend's experience, however, that the standard tests are not terribly accurate when one has been infected as long as I had been (a year or more), but getting a positive test caused me to find a Lyme specialist who diagnosed me with Lyme and babesiosis and treated me with appropriate antibiotics for something just over a year. I am now well and have been for several years.
So-called 'mainstream' MDs will scoff at the likelihood of Lyme, saying it is rare, but that is so wrong. If you know you are ill and your docs are out of ideas, find a Lyme specialist for a work up. The worst you will find out is that you do not have Lyme.
To find a Lyme specialist, you can go to the ILADS [dot] org website and ask for a referral to an ILADS member near you. There is no test to be an ILADS member, as far as I know, because it is just a voluntary group for MDs who understand how serious Lyme is and are interested in finding out more about it themselves.
Some of the ILADS member docs are not, from what I read of patients posting here and elsewhere, totally up to speed, so if something doesn't seem right, get copies of all your test results and go to another ILADS-member doc. (ALWAYS get copies of ALL test results and keep your own set of them at home. Things have a funny way of disappearing in doc's offices, and something that looks negative to one doc could mean something entirely different to another doc.)
We're at the cutting edge of medicine, friends -- someday the chaos will be over and we won't need to go to a website to find out how to find a doc who understands Lyme and its related infections. But for now, we have to keep up the effort.
Thanks again, mojo.
Granted, each patient comment is one data point and not a conclusive answer, but a whole lot of data points do make one want to think more seriously about the possibility of Lyme.
Anyone who reads the linked article and is concerned about their own symptoms should imo find a Lyme specialist for a consultation, because the nonbeliever docs just don't have a clue.
I went through 20 highly trained and experienced MDs trying to find out the cause of my illness, and it was the 20th doc who, in desperation, tested me for Lyme. The test was positive, but the MD told me I 'could not possibly have Lyme'. I knew from a friend's experience, however, that the standard tests are not terribly accurate when one has been infected as long as I had been (a year or more), but getting a positive test caused me to find a Lyme specialist who diagnosed me with Lyme and babesiosis and treated me with appropriate antibiotics for something just over a year. I am now well and have been for several years.
So-called 'mainstream' MDs will scoff at the likelihood of Lyme, saying it is rare, but that is so wrong. If you know you are ill and your docs are out of ideas, find a Lyme specialist for a work up. The worst you will find out is that you do not have Lyme.
To find a Lyme specialist, you can go to the ILADS [dot] org website and ask for a referral to an ILADS member near you. There is no test to be an ILADS member, as far as I know, because it is just a voluntary group for MDs who understand how serious Lyme is and are interested in finding out more about it themselves.
Some of the ILADS member docs are not, from what I read of patients posting here and elsewhere, totally up to speed, so if something doesn't seem right, get copies of all your test results and go to another ILADS-member doc. (ALWAYS get copies of ALL test results and keep your own set of them at home. Things have a funny way of disappearing in doc's offices, and something that looks negative to one doc could mean something entirely different to another doc.)
We're at the cutting edge of medicine, friends -- someday the chaos will be over and we won't need to go to a website to find out how to find a doc who understands Lyme and its related infections. But for now, we have to keep up the effort.
Thanks again, mojo.
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