Saturday 25 January 2014

LYME DISEASE - LAW, SCIENCE, SEX, NEWS, POLITICS, COLLABORATION

This post is a round up of several news items in no particular order:-

From ILADS Facebook page link 

CASE #09-CV-1039MCA GLIBOWSKI VS. U.S. OFFICE OF PERSONNEL MGMT. History was made, and has set a precedent, for all Lyme disease patients in a lawsuit, in which attorney, William L'Esperance, a longtime part of the Lyme Disease United Coalition, has won a case where the Office of Professional Management (OPM), on the side of the insurance company, has been overruled. The Lyme disease patient, in the lawsuit, submitted bills for hundreds of medical services, treatments, and tests. The court ruled that the Lyme disease patient wins the case without regard to the medical necessity of the patient; or whether the medical treatments or tests were medically necessary or experimental or investigative. The case is GLIBOWSKI VS. US OFFICE OF PERSONNEL MGMT., 09-CV-1039MCA (US DISTRICT COURT, DISTRICT OF NEW MEXICO). The case is sealed. However, attorney William L'Esperance has filed the case and outcome with the United States Federal Courts to set precedence to aid all Lyme disease patients in lawsuits against their insurance companies, and OPM, for not covering the ILADS guidelines or Dr. Burrascano's guidelines in treatment of Lyme disease. What does this mean to each of us? 1. The door has opened for Lyme-treating doctors to accept insurance -- once all is established in U.S. Federal Court. (I will keep you posted about the advance of this outcome.) 2. You may now sue your insurance company for past bills not covered or reimbursed by insurance. The OPM cannot hold you back -- in other words, the IDSA'S guidelines are no longer accepted. To contact our hero, attorney Bill L'Esperance, e-mail: walesperance@wwdb.org William L'Esperance, Counselor at Law P.O. Box 90668 Albuquerque, NM 87199 __________________________________________________________________________________________ William L'Esperance does not want to take on new clients. He is willing to be a resource for out-or-state attorneys handling similar cases.



Resurgence of Persisting Non-Cultivable Borrelia burgdorferi following Antibiotic Treatment in Mice Plosone link 

'The agent of Lyme borreliosis, Borrelia burgdorferi, evades host immunity and establishes persistent infections in its varied mammalian hosts. This persistent biology may pose challenges to effective antibiotic treatment.'
I posted an interesting presentation from Stephen Barthold previously here

Lyme Disease May Be Sexually Transmitted, Study Suggests
This study was an International collaboration link  

“Our findings will change the way Lyme disease is viewed by doctors and patients,” said Marianne Middelveen, lead author of the study presented in Carmel.

“It explains why the disease is more common than one would think if only ticks were involved in transmission.”
“The presence of the Lyme spirochete in genital secretions and identical strains in married couples strongly suggests that sexual transmission of the disease occurs,” said Dr. Mayne.

“We don’t yet understand why women with Lyme disease have consistently positive vaginal secretions, whilst semen samples are more variable.

Obviously there is more work to be done here.” Dr. Stricker pointed to the unknown risks of contracting Lyme disease raised by the study.

“There is always some risk of getting Lyme disease from a tickbite in the woods,” he said. “But there may be a bigger risk of getting Lyme disease in the bedroom.”

Interesting comments re above study from Dr MacDonald on Lymenet Europe forum link
'These observations re-open for disusssion and critique the "sexul transmsiison" burgdorferi borrelia pathways in the human host and presumably in mammalian hosts in general. These observations constitute yet another "biological amplification " pathway for borrelia transmission, independent of Tick Salivary vehicles or hypostomes in the human dermis. The linkage of lichen sclerosus to burgdorferi borrelia infections by Eisendle, and colleagues, established the cognitive framework for urine containing borrelia to possibly directly traverse female Vulvar skin to establish a chronic Borrelia dermatosis [Lichen Sclerosus}


Latest News - Lyme Disease Action  link 

The latest one
On December 16th LDA had a meeting at the Department of Health. The purpose was to use cases documented through LDA’s help desk to highlight to the Department the shortcomings in the current provision of care for Lyme disease patients Read more under News on LDA website link

News from Canada  link

3. Elizabeth May (Green): Bill to create a national Lyme disease strategy (C-442) The Green Party leader is asking for public health officials, researchers and patient advocates to come together and develop a national strategy for diagnosing and treating Lyme disease – a tick-borne disease that can be cured with antibiotics but which can cause severe damage to the heart and nervous system if not treated. “At least for those MPs representing regions of Southern Canada, we hear from constituents suffering from Lyme disease all too frequently,” May wrote on her website this fall. “Many are unaware that the tick bite could lead to permanent disability if not diagnosed correctly and treated promptly. We need to do more.”



There are so many tragic and sad stories that our Health Authorities are not aware of, this is just one of the many sufferers Elizabeth link 

Elizabeth put out a cry for help to source medication that was no longer available for her. Through an International collaboration on Facebook the Lyme community came up with several ways to source the needed medication and was able to pass that information on to one of Elizabeth's helpers.

Together science, patient support and advocacy is moving the agenda forward and making our Health Authorities around the World look at the evidence. The science will not always be denied and the patients will not all lie back when they find treatments that help them.

4 comments:

  1. i'd like to commend on the sexual transmission of this disease i think this was deliberately kept from public .I mean come on this is a very near "cousin"from syphilis. I always thought that it was std stuff and i am a laymen cause common sense dictates this and i bet you, that if you do not look at the seminal fluid of men but at the "pre-seminal fluid"you will also find the little buggers in there.This is for you thickheaded researchers out there because nature protects the hardware so consequently i assume that you will also not find the liittle buggers in female eggs.So go do your homework guys sorry we paid for your expensive education.

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    1. As with anything connected to Borreliosis if researchers don't look they won't find and when they look if they don't use the right techniques they won't find - not finding does not mean it isn't there.
      Our World Health Authorities need to use their brains and follow the science and allow it to emerge.

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  2. Hi Joanne - been a long time since I've commented here. Thanks for retweeting me on Twitter - appreciate it. Things have been really active for me there lately, and I've been less inclined to blog during the past year, but hope quality makes up for frequency.

    There are two papers I'm very interested in writing about - this one on sexual transmission, and Hodzic et al's paper on Borrelia resurgence in mice 12 months post-antibiotic treatment. Both of them lead to more questions and concerns.

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    1. Thanks Camp Other for commenting - I have not been so active on my blog these days as there is so much to share on Facebook and more to read than the few words allowed on Twitter.
      I will look forward to your analysis when you post about the two papers.
      I am busy reading Garth Nicolson's book about Mycoplasma - although fictional it does get into his research which is very interesting. Mycoplasma just one more question about the co infections of Lyme but at least treatment is similar to Lyme.

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