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Jenna’s Lyme Blog

News and resources for neurological Lyme disease and co-infections.

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New Treatment for Lingering Neuropathic Pain

New Treatment for Lingering Neuropathic Pain

The intensely oppositional theories about Lyme disease and the proper treatment of Lyme disease is widely spread and frequently debated between Medical Societies, University Medical Centers,  medical practices, politicians and scientists around the world.  However, it is less often that these groups argue amongst themselves publicly.

Last week sent a wave of delight (for Lyme groups) and shock (from the conventional medical establishment) when the Association of American Physicians and Surgeons, Inc. spoke out against the IDSA Guidelines in a press release: http://www.aapsonline.org/testimony/lyme-disease-guidelines-comments.php.

I have just become aware of another schism that is occurring just miles from Columbia University’s Lyme and Tick Borne Disease Research Center, located in northern Manhattan NYC at Yale University’s Medical Center in New Haven, CT where the IDSA guidelines have held sway since their inception.  I had the privilege of seeing Dr. Amiram Katz,  assistant clinical professor of neurology at Yale, believes that denying the possibility of persistent infection is counterproductive and ultimately harmful.

“In the textbook of pathology, which every medical student reads, it is written that there is chronic Lyme.… We know from syphilis [a spirochetal infection similar to Lyme disease] that this type of bacteria, the spirochete, can be alive and persistent, though at times dormant,” he says. Katz asserts that refusing to accept the evidence for chronic infection is “an example of how people are going to an extreme and damaging both themselves and the patients.”

On May 2, 2009, Dr. Andrew Wilner reported online (complete story on the Doctor’s Guide Peer View) about a study conducted by Dr. Katz and presented in Seattle Washington at the American Academy of Neurology (AAN) 61st annual meeting.

Dr. Katz has been treating patients with persistent neurological symptoms with infusions of immunoglobulin (in appropriate medical cases) and finding remarkable success.

Dr. Wilner reported that all patients were treated with immunoglobulin for at least 6 months, and that after the treatment 100% of his patients showed improvement.

“The diagnosis of chronic Lyme disease is not widely accepted, yet these patients have symptoms and nerve biopsies that respond to IVIG treatment, legitimising their complaints,” concluded Dr. Katz.

I don’t know if I will be given this immunoglobulin treatment or not, but I am excited to be under the care of a logical thinking scientist and medical doctor who look at the evidence instead of listening to the predjudice of their colleagues “belief system.”

As more and more medical doctors push their way out of the box to help their desperate and suffering patients to find that longer courses of antibiotics acyually improves symptoms - the faster mainstream medicine will be forced to re-evaluate their position.  Of course we all hope that the re-writing of the IDSA guidelines will be influenced by doctors who are successfully treating Lyme disease and NOT theorotizing academicians  or doctors with no experience at all!

Additional hope comes from the political sector. Last Thursday afternoon (April 30, 2009), in Hartford, Connecticut, the House of Representatives unanimously voted, just as the Health Committee had, on a bill that takes what will hopefully be viewed as a nationally recognized stand in the heated debate over the existence of chronic Lyme disease.

“It comes down on the side of people who suffer from Lyme in this big debate,” Rep. William Tong, D-Stamford, a bill co-sponsor, said according to Greenwich Times following the vote. “It says the scientific community can have that debate but we’re not going to let anybody else go without treatment.”

Brian Lockhart, staff writer for Greenwich Times further wrote:

Although the state Department of Public Health does not expressly forbid long-term antibiotic treatment for Lyme, the national Infectious Diseases Society has dismissed chronic Lyme as a myth.

Those who believe in chronic Lyme argue this makes state physicians fearful of being reported to the health department if they choose to recognize and treat chronic Lyme.

“There is a ‘chill effect’” on doctors, Rep. Jason Bartlett, D-Bethel, said.

Rep. Kimberly Fawcett, D-Fairfield, who helped spearhead the bill, told her colleagues prior to Thursday’s vote:  “We recognize this controversy in diagnosing this disease. But let’s give our doctors the freedom and autonomy.”

Rep. Scribner, R-Brookfield, a member of the legislature’s Public Health Committee, agreed.

“We’ve witnessed many people who have suffered long term,” he said. “I strongly urge all the chamber to consider this measure which I think is a very responsible measure.” The Connecticut Medical Society supported the bill. The Society is not taking a stand on chronic Lyme disease but believes physicians should have the right to treat patients as they see fit.

The legislation would require a chronic Lyme diagnosis be made based on medical history and a physical. It only allows long-term antibiotics for chronic Lyme disease and the language does not preclude the state from investigating physicians for wrongly prescribing medicines.

Thankfully this bill appears to be on a fast track to become law in the very state where Dr. Katz is branching out into new medical territory with immunoglobulin infusions.  By taking the fear of litigation from the medical board away, pioneering medical doctors with intuitive genius (not only like Dr. Katz but the Lyme pediatrician Dr. Jones,  Psychiatrist Brian Fallon and Pathologist Dr. Alan B. MacDonald to name just a few) to continue their brave exploration into the frightening territory of chronic neurological Lyme disease.

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4 Responses to “New Treatment for Lingering Neuropathic Pain”

  1. 1
    EvanNo Gravatar (1 comments):

    I have found the LDRD (Lyme Disease Research Database) resource to be very helpful for my Girlfriend. It offers resources she does not find anywhere else and it focuses on getting healthy!

  2. 2
    Angeline @ change managementNo Gravatar (1 comments):

    That’s nice to hear that they have found out a treatment procedure for Lingering Neuropathic Pain. This is a good start. I wish this should be the best treatment and should be adapted in many other countries :) Angeline @ change management

  3. 3
    lynnNo Gravatar (1 comments):

    Oh I beg to differ on the Immunaglobin as I know many of Dr. Katz patients and for him to say 100% is ohhh soooo not sooo. Many are very sick from taking it and after, relapse, some worse then before starting it. He just doesn’t follow up, but I personally know them! How can they safekly say that somenes immunity is safe to run through anotherwhen we can’t find or kill this disease… Buyer Beware!!!

  4. 4
    Jenna SmithNo Gravatar (64 comments):

    Thank you for your comments, Lynn! I have been ambivalent about taking the IVIG, but as you must know - especially as a Lyme sufferer - the intense desire to find a cure for yourself, and doctors love to point to their success, and I am happy to try these different cures to pass along information.

    I would love to hear more from you about protocols that you can confidently recommend.Thank you so much for taking the time to share your knowledge.

    Blessings,

    Jenna

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