David Perlmutter's "Letter to Doctors and Patients"

A forum for the discussion of antibiotics as a potential therapy for MS

David Perlmutter's "Letter to Doctors and Patients"

Postby SarahLonglands » Tue Nov 23, 2004 6:53 am

From David Perlmutter's "letter for Doctors and Patients" from Nov. 2003, but still very relevant.



Multiple sclerosis (MS) is a fairly common and generally progressive disease of the central nervous system with a prevalence in the United States of approximately 350,000 cases annually. Although the onset of MS typically occurs between the ages of 10-59 years, onset as early as 2 years of age has been described. Annual expenditures for the treatment of this disease in the United States exceed $2.5 billion. While typically regarded as a cause of morbidity, more than 3,000 Americans die each year as a direct consequence of MS--a disease in which the cause has remained stubbornly elusive.

The historical attempts to identify the cause of Multiple sclerosis have been filled with bleak commentary. As Godfried Sonderdank, Court Physician of Schiedam, Holland, reported in the 14th century when describing a disease now thought to represent MS: "Believe me, there is no cure for this illness. It comes directly from God. Even Hippocrates and Gallenus would not be of any help here."

Over a century ago, the genesis of Multiple sclerosis was attributed to some form of infection. As the French physician Pierre Marie reported in his lectures of 1891:

"Before concluding this enumeration, a paragraph must be devoted to unnamed infections, so frequent, so little known, I might add so much disregarded. There are no special symptoms at the onset which indicate its existence; fever is known to have occurred, prolonged discomfort with or without gastrointestinal symptoms, occasionally jaundice or pulmonary trouble, nothing else being known about the disease. In such a case, gentlemen, you must not doubt that this is certainly a case of infection, but of a kind that it has not received any definite clinical name. As regards the patients in whom insular sclerosis (Multiple sclerosis) seems to occur from the influence of injury or physical cause, my conviction is that these cases are also due to infection, but that the infection has passed away completely unperceived, while some less important but more dramatic incident has alone attracted the attention of the patient or those who are with him."

By 1998, at least 16 infectious agents had been identified as possibly causing Multiple sclerosis. Under strict scientific scrutiny, none has been found to specifically induce the disease.

But recently, the most convincing data ever presented relating infection with a specific organism to Multiple sclerosis has been reported from the Department of Neurology and Pathology, Vanderbilt School of Medicine, Nashville, Tennessee. Dr. Subramaniam Sriram and co-workers, publishing their results in the July 1999 issue of Annals of Neurology, have demonstrated the presence of a specific type of bacteria in 100% of the 37 Multiple sclerosis patients they studied. As the authors reported, "The evidence of Chlamydia pneumoniae in both progressive MS and relapsing-remitting patients suggests that the infection of the central nervous system with Chlamydia pneumoniae occurs early and persists perhaps throughout the course of the disease and does not differentiate between different clinical subtypes of the disease." (7) This purported relationship between risk for Multiple sclerosis and infection with Chlamydia pneumoniae was recently substantiated in a study appearing in the March 2003 issue of Epidemiology. In this report, Harvard researcher Kassandra Munger found a 70% increased incidence of Multiple sclerosis in women seropositive for the presence of Chlamydia pneumoniae specific immunoglobulin G antibodies using microimmunofluorescence.

This organism, Chlamydia pneumoniae, is a fairly recent addition to the list of bacteria known to affect humans. It is now recognized as a cause of pneumonia, pharyngitis, bronchitis, and several chronic diseases. More importantly, Chlamydia pneumoniae has now been recognized as playing at least some causative role in reactive arthritis and coronary artery disease--medical conditions which, like MS, are characterized by ongoing inflammation.

The idea that Multiple sclerosis may be caused by some form of infectious agent is supported by several interesting observations. On the Faroe Islands prior to 1920, MS was essentially unknown. Subsequent to the invasion of British troops, the incidence of MS increased dramatically. (9) This would support the contention that MS, at least on the Faroe Islands, was caused by some infectious agent to which the native population had not been previously exposed.

In addition, the cerebrospinal fluid (CSF) in patients with documented Multiple sclerosis, is typically found to contain high amounts of specific proteins known to be elevated in other nervous system disorders in which infectious causes have been clearly identifie

If there is such a strong relationship between the presence of Chlamydia pneumoniae and Multiple sclerosis, how could its presence have been missed by researchers for so many years? The answer lies in the fact that the discovery of Chlamydia in the spinal fluid of MS patients required the development of a very sophisticated test to detect a unique protein found on the cell wall of the Chlamydia pneumoniae organism itself. Indeed, this is not the first example of a profound delay in the identification of an elusive bacterium as the cause of a specific illness. It has been only in the past few years that the bacteria Helicobactor pylori has been demonstrated to be the causative agent in most cases of gastric ulcers. Incredibly, Helicobactor pylori has been identified in the stomachs of humans since the early 1900's, but medical researchers couldn't bring themselves to admit the possibility that a disease like gastric ulcers could be caused by a simple bacterium.

Another observation supporting the relationship between Chlamydia pneumoniae and Multiple sclerosis is based on the discovery that two commonly used medications for Multiple sclerosis, interferon-beta and methotrexate, profoundly inhibit the growth of the Chlamydia bacterium. This is interesting and provocative information as we don't yet fully understand why these drugs are sometimes effective in MS treatment.

Over the past several years, the medical literature has published various articles describing specific viruses thought to be the causative agent for Multiple sclerosis, only to have these reports subsequently refuted. But this new research describing the possible relationship between Chlamydia pneumoniae and Multiple sclerosis is most compelling. And the good news is that unlike viruses, specific antimicrobial medicines are available to treat Chlamydia pneumoniae.

Based upon this research, it is not unreasonable for patients with Multiple sclerosis to consider an empiric treatment for Chlamydia pneumoniae. As this discovery is so new, no specific treatment protocols have as yet been created. And it will likely be several years until clinical trials have been designed, approved, funded, completed, and ultimately published, until we know for sure that MS patients should be treated. But in light of the present evidence, empirically treating MS patients for Chlamydia pneumoniae seems reasonable. Obviously this decision should be discussed with the treating physician. Antibiotics generally quite effective in treating Chlamydia pneumoniae infections include doxycycline and tetracycline. Doxycycline may be the more effective treatment since it is more able to penetrate the blood-brain barrier to enter the brain.

Sarah
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Postby Arron » Tue Nov 23, 2004 11:32 am

Thank you for posting this, Sarah. I'm sure this will help many in our community to have some very interesting discussions with their neurologists and doctors.
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Postby Daunted » Tue Nov 23, 2004 12:42 pm

This is a useful article.

And what this made me think of, is that the Munger study looked at CPN serology rather than CPN infection of the CSF...and if some but not all patients with CPN infections of the CNS were CPN+ on serology, that might explain the results of their study.

I guess a real thorough study (like they are supposedly doing, or staging, at Vanderbilt) would have to do LPs on everyone, not just take their blood.
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Postby SarahLonglands » Wed Nov 24, 2004 7:27 am

Just a quick reply here whilst digesting lunch: I forgot to say who David Perlmutter was yesterday!

Here is his Curriculum Vitae

Education
UNIV OF MIAMI SCH OF MED, MIAMI FL 33101, 1981

Post Doctoral Training
Univ Miami/Jackson Mem Mc, NEUROLOGICAL SURGERY
Univ Miami/Jackson Mem Mc, NEUROLOGY
Mt Sinai Med Center Of Fl, Inc, GENERAL SURGERY

And here is his address:

Perlmutter Health Center
Commons Medical Center
800 Goodlette Road North Suite 270
Naples, FL 34102

I will reply to the other postings over the weekend.

Sarah
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Postby SarahLonglands » Mon Nov 29, 2004 4:38 am

Daunted mentioned:
And what this made me think of, is that the Munger study looked at CPN serology rather than CPN infection of the CSF...and if some but not all patients with CPN infections of the CNS were CPn+ on serology, that might explain the results of their study.

I guess a real thorough study (like they are supposedly doing, or staging, at Vanderbilt) would have to do LPs on everyone, not just take their blood.


If you are C Pn positive with a lumbar puncture you will be with serology as well. This obviously does not apply in reverse. In the trials run at Vanderbilt you have to have a have a positive lumbar puncture to be included. This is asked for by the people funding the trial. Rather ironic, because detection of C Pn is so difficult to start with, whether with serology or lumbar puncture. Doubly ironic because my serology showed undiagnostic levels: if I hadn't been married to someone convinced I had an infection and who had the ability to treat me, I would still be unable to use my right hand and unable to walk unaided to the front gate.

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Postby MacKintosh » Mon Oct 03, 2005 8:26 pm

Sarah - Thank you for posting this. I am not only responding here to keep the thread active, but to remind everyone here that it's the 'little things' that count when you're pursuing unorthodox treatment.

In the past week, I have seen five doctors relative to my newly diagnosed MS. Each time, I have taken the time to print out the LETTER to DOCTORS post, David Wheldon's (11 page) protocol, with questions and answers included and one or two pertinent articles (depending on the nature of the doctor's specialty and their personality). I also write down the web addresses of the Vanderbilt work and the CPn Help.org site.

It has been so helpful to have these resources! Each doctor was more than receptive, although two made the 'you know, this is just anecdotal' comment. They all asked if they could keep the material to read later on and were pleased I'd gone to the trouble of making them their 'own' copies in advance.

Most importantly, what I might have mis-stated or omitted, was all there for them. It spoke for itself, and, miracle of miracles, it's opened some heretofore closed minds! I worked hard on my own behalf and it's paid off, but it was so much easier thanks to the availability resources like this one.
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Postby Loriyas » Tue Jul 31, 2007 5:35 pm

I realize how old this thread is, but I was going through old threads looking for information to become more educated on Cpn and abx and came across this. Dr. Perlmutter is the neurologist I saw last Wednesday and who rxd minocycline for me. I am glad to see he was cutting edge on this even a few years ago. That makes me think that he has had a lot of experience with this protocol. I will certainly ask him when I see him next month.

It's funny, because I remember someone on this board telling me I should go see him quite some time ago. He is in Naples, FL and I have lived here for 4 years. I didn't see him originally because I wanted to stay with the well-accepted route. I thought that was what I should do. But now I feel fortunate to have gone in to see him. Seems like it was meant to be!

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Postby MacKintosh » Tue Jul 31, 2007 5:44 pm

Karma, Lori. Good karma.
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
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Postby SarahLonglands » Wed Aug 01, 2007 12:35 am

Good morning Lori! If you use my email button and send me your email I have several papers which might interest you before you see Perlmutter again.

Just because a post is old doesn't mean it is out of date! :wink:

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby MacKintosh » Thu Oct 04, 2007 6:56 pm

Hah! I've been looking for this letter to pass it along to a friend. I find this to be really helpful, not only for presentation to a doctor, but also to help clarify some things in the PATIENT'S mind. :wink:
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
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