Lyme and Tick-Borne Diseases Research Center

Here's a valuable resource: Columbia University's Lyme research center. Here you can read about ongoing and upcoming research into Lyme, new testing approaches, and much more. 

http://www.columbia-lyme.org/research/cr_research.html

Dr. Joe Jemsek Speaks Out: The Controversy of Lyme Disease and Modern Healthcare

Please take 10 minutes and watch this video. It could change the way you look at healthcare and is a shocking reality of the controversy over Lyme Disease and treatment.

(The video take a few moments to load.)

http://youtu.be/V-lHDA863TM

Thanks to lymeandback.blogspot.com for pointing to this video.

Parkinsons Disease Treatment Options

An excellent and rich page listing resources for those with Parkinson's. Books, diet, exercise, and more. I have just discovered it, after being approached by the site's author to be interviewed.

http://www.blog.parkinsonsrecovery.com/parkinsons-disease-treatment-options

Lyme and Alzheimer's conections

Some researchers have been wondering whether there might be a connection between Lyme Disease and Alzheimer's Disease. Here is a brief rundown on that research, with a few citations. This comment appeared on the CaliforniaLyme Yahoo group on Aug 10, 2012:

Several connections have been made between Lyme disease and Alzheimer's
disease (AD). Spirochetes have been found in brain tissue of those that
died of AD but not in controls that died of other causes (Miklossy, 1993).
Pieces of Borrelia DNA were found spliced into human DNA in another study
(MacDonald, 2006). Since it is DNA that forms protein strands, this foreign
DNA pieces that were spliced into the human DNA could very well cause the
formation of the tangled proteins that characterize AD. Miklossy (2011)
also found that about 90% of people with AD had spirochetal infections in
their brain. About 25% of these spirochetes were Borrelia, the others were
spirochetes common in dental infections. These are just a few of the
studies that have been done, linking infection of some sort, often
spirochetes, to AD. Other infections join in causing the damage, just like
in Lyme diseasel

MacDonald, (2006). Transfection "junk" DNA - a link to the pathogenesis of
Alzheimer's disease? Medical Hypothesis.
Miklossy, (1993). Alzheimer's disease - A spirochetosis? Neuroreport.
Miklossy, (2011). Alzheimer's disease - a neurospirochetosis. Analysis of
the evidence following Koch's and Hill's criteria. Journal of
Neuroinflammation.

Anne Mears, RN, MSN/IH

Proposed Lyme legislation ignored by IDSA

08/06/12 14:24

In July, a Congressional subcommittee met to discuss a Lyme disease bill that is championed by a number of politicians in the Northeast US. The bill urges congress to approve a national strategy and money for research into prevention, diagnosis, and treatment of Lyme disease. A federal strategy would heighten awareness in all public health agencies.

The hope is that when people are sick and infected with Lyme go to their local clinic, they may actually be able to receive medical help from doctors who understand the critical importance of early treatment. As it stands, clinics across the US are staffed by medical professionals who remain largely ignorant of it. Lyme misdiagnoses are rampant and dangerous.

The powerful doctor's group, the Infectious Diseases Society of America, was absent during the meeting and has remained silent about the bill. You may remember that in 2009 the IDSA opposed a similar bill, claiming that it lacked support from the scientific community...

Read the rest of the story on the Lyme Disease Research Database:
http://www.lyme-disease-research-database.com/lyme_disease_blog_files/IDSA-ignores-proposed-Lyme-legislation.html#unique-entry-id-295

Portrait of Bob and his meds

I was digging through my supplies the other day and realized that I wanted to visually document the preposterous amount of supplements, prescription drugs, Chinese medicine, homeopathics, needles, syringes, saline bags, and so on that I have in my Lyme-fighting arsenal. Even I was amazed (and depressed about) how many jars, bottles, vials, tubes, bags, and so forth I have purchased over the years, not to mention that my poor liver and kidneys and other body parts have had to assimilate, break down, and excrete these drugs. All this stuff has cost hundreds of dollars, if not thousands. 

I also thought it would be good for my doctors (and any doctors reading this) to get a sense of what a typical chronic-Lyme disease patient has to deal with over time. 

I decided to organize them outdoors, on top of my defunct hot tub. (A friend Photoshop'ed in the sky, replacing the dead plants and drab redwood wall). Looks kind of goofy, but I did the setup of all the bottles and whatnot there simply because there was good light for a photo, and I don't have another flat surface to put everything on.

It's a full-time job just remembering what to take, and when!

In the lower photo you can see the general layout. The glass vials in the middle are empty Ceftriaxone (AKA Rocephin, an antibiotic) IV bottles, along with tiny ones that were filled with glutathione and phosphatidyl choline, which I take IV to help the liver do its detox job better.  

Rx drugs are on the right, Chinese herbs are just behind the Rocephin bottles and in the little plastic (front, left). Homeopathics are in the dropper bottles behind the Chinese herbs. Just about everything else are supplements (aminos, vitamins, and various herbs, heavy-metal binders, etc). My IV pole with some Rocephin in the bag/line is standing next to me. 

On the back, right are glass vials of seawater from some supposedly-magical source off the coast of France. A homeopath/naturopath sold me those. It's called Quinton water. Supposedly good JuJu in that water, but I didn't notice anything. You have to break off the tip of a glass vial in order to get the Quinton water out. A tad scarey the first couple of times. I was afraid I'd cut myself, not to mention my fear of drinking little glass shards. In the back, middle, are heparin and saline flushes (pre-loaded single-use syringes). You go through a lot of those if you have a PICC or a Port. 

I had forgotten about some of these chapters of my treatment. I'd rather not remember, actually. There have been so many!

A bit more of a close-up to make things more visible.

Treating Lyme with heat

Fire, the Great Purifier
October 31, 2010
By ©Caroline Sojourner

Give me a chance to create a fever and I will cure any disease. Parmenides.

Heating the body by various means can bring major relief from the miseries of Lyme. A regular practice of some form of high-temperature therapy will help to keep down the symptoms of Lyme.

Low Body Temperature in Illness

People who are chronically or seriously ill usually have below-normal body temperature. The immune system in a colder body becomes less active. A proper temperature is necessary for herbs and supplements to be effective; it is necessary for the production of enzymes; and it is necessary for the formation of red blood cells....

The rest of the story...
http://totalhealing.info/livinghighwithlyme/http:/totalhealing.info/livinghighwithlyme/fire-the-great-purifier#.T1lnUGlapy4.facebook

Dr. Dave Martz, who overcame his own ALS death sentence

As Dave Martz lay dying, an idea serpentined around his mind and would not loosen its grip: Despite the absolute diagnosis and the insistence of the doctors, including a world expert, that he was dying of ALS, despite his own vow to face things head-on and reject the lure of denial, Martz couldn't shake the notion that possibly, just maybe, he actually had Lyme disease. (from "Cure Unknown: Inside the Lyme Epidemic," by Pamela Weintraub.)

Dr. David Martz is kind of a rock star in the Lyme world. You may have read about him in Pam Weintraub's Cure Unknown, and seen footage of him in the documentary Under Our Skin.

His story is riveting. After a lifetime of good health and a successful career as a physician practicing internal medicine-hematology-oncology for 30 years, in 2003, Martz suddenly started experiencing strange symptoms. First deep fatigue, then profound muscle aches and body-wide pain. Soon he was too weak to get out of bed. As his condition rapidly deteriorated, his physicians gave him a devastating diagnosis: ALS (aka Lou Gehrig's Disease). They said nothing could stem his physical decline and he would likely be dead within two years.

Read the rest of the story:

http://lymedisease.org/news/touchedbylyme/372.html

U.S. House Lyme Hearing Great Success

Here's a good summation of the House of Representatives Lyme disease hearing on July 17, 2012.

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July 22, 2012                                           Lyme Disease Association, Inc.  In This Issue Hearing Significance Summary of Oral Testimonies Congressional Attendees Actions You Can Take HEARING SIGNIFICANCE  The 2 hour July 17, 2012 hearing, Global Challenges in Diagnosing and Managing Lyme Disease - Closing Knowledge Gaps, was held on July 17, 2012 in Washington, DC. The significance of the hearing is that it is the first time Congress has looked at the global implications of Lyme disease and chronic Lyme disease, and focused on the science and putting patients first. Witnesses gave testimony about how policies and actions by government agencies such as CDC and NIH and of the Infectious Diseases Society of America (IDSA) have prevented research on chronic Lyme disease from moving forward and have hindered patient diagnosis and treatment. Solid science was presented for the record showing persistence in animal studies and cutting edge testing for Lyme was examined.    July 17, 2012 Office of Congressman Christopher Smith after the hearing Ray Stricker, MD, Vice President, International Lyme & Associated Diseases Society; Lorraine Johnson, JD, MBA, Chief Executive Officer, LymeDisease.org Jeannine Phillips, Moderator, LymeQuestNJ Congressman Christopher H. Smith (NJ-4) Africa, Global Health & Human Rights Subcommittee Patricia V. Smith (Pat),President, national non-profit Lyme Disease Association, Inc.(LDA) Tim Lynagh, Legislative Director for Christopher Smith Brief Summary of Oral Testimonies  Congressman Christopher Smith opened the hearing with a lengthy statement about the problems he has heard about from Lyme patients about the inability to be diagnosed and treated and the role of federal agencies and also of the Infectious Diseases Society (IDSA) in the controversy surrounding Lyme. He also mentioned that Lyme Disease Association President Pat Smith alerted him to the problem about 20 years ago and he went through the history of federal efforts he has mounted to obtain monies and research and an advisory committee, the latter effort he likened to his success in autism which he was able to have passed with much less difficulty that Lyme. He introduced: Stephen Barthold, PhD, Distinguished Professor, School of Veterinary Medicine, University of California, Davis who spoke about his long career in Lyme research, in particular, his animal studies. He spoke about the contentious nature of the Lyme field and the persistence of Borrelia burgderferi, the organism that causes Lyme. Raphael Stricker, M.D., Vice President, International Lyme and Associated Diseases Society (ILADS) who is a clinician with 2,000 Lyme patients from all over the world. He discussed the lack of knowledge of some doctors as an impediment to diagnosis and treatment and the need for national protection for Lyme treating physicians. Mark Eshoo, Ph.D., Director, New Technology Development, Abbott who spoke about studies in mice and survival of the spirochete and how existing tests are only antibody response tests and are not really sensitive so many cases are not diagnosed. He talked about his new research using cutting edge technology to directly detect the Lyme bacteria and strain variations as a possible solution to end this controversy. Patricia Smith, President, Lyme Disease Association, who testified about the problems of patients getting diagnosed and treated and treating physicians being allowed to practice clinical judgment in the treatment of Lyme patients. The problems relate to the two standards of care for Lyme (ILADS & IDSA). She explained how patients and advocates are being unfairly attacked in peer review by some of the same researchers whom the NIH funds and spoke about the broad brushed conclusions of the NIH treatment studies which have incorrectly concluded that no long term treatment helps any Lyme patients. A breakdown in the CDC Lyme surveillance system has led to inconsistent inaccurate counting of Lyme cases nationwide, and a "policy" of NO Lyme in the South and Midwest has contributed to little diagnosis and treatment in that region. She presented the problems of children with Lyme being unfairly characterized as faking illness despite studies showing IQ drop, and that some have committed suicide. Mothers have been charged with Munchausen's and had children removed from the home for getting them treated by licensed physicians. She noted the absence of key Lyme players CDC, NIH, IDSA who now remain part of the problem and need to be brought to the table. Evan White, who narrated his journey from preteen Lyme patient who got sicker from short-term treatment to one who through years of careful long-term treatment was able to become a lawyer, husband and father. At age 13, he described himself as a "vegetable." He was deteriorated and transformed, weighing 60 pounds. He now described himself as fully recovered and a Lyme advocate. He noted that he testified before the 1993 Senate Hearing on Lyme disease. Ms. Stella Huyshe-Shires Chair Lyme Disease Action discussed the problem of Lyme in the UK and across Europe, indicating that the actual incidence is probably so much higher in the UK than reported due to so few physicians recognizing the disease. She said there is much polarization in Europe and everyone needs to stop beating the drum and move forward. She mentioned the influence of IDSA guidelines in Europe and how patients have difficulty getting diagnosed and treated there. During Q & A, many specific comments were elicited on issues such as biofilms, cell wall deficient forms, school issues, calling for more research, possible use of the new testing methods commercially, how can legislators ensure monies go to research and many other issues. Congressional Attendees Congressman Christopher Smith (NJ) and Congresswoman Bass (CA) and various Congressional Staff were in attendance for the Committee.   Both Congressman Frank Wolf (VA) and Congressman Chris Gibson (NY), who are not Committee members, attended and made statements about the amount of Lyme disease they see in their districts and Congressman Gibson mentioned Lyme being a constituent driven issue (he hosted a forum in NY where Pat Smith was a panel member). Congressman Gibson also asked questions to the panel. Both legislators thanked Congressman Smith for his leadership in the House on this issue. Congressman Smith acknowledged the role of Senator Blumenthal when he was CT Attorney General in investigating the IDSA and suppression of data, and his role as Senate Lyme bill (S-1381) sponsor. He discussed his own bill in the House (HR-2557).  It is not uncommon for only a few members to be present at the hearing. All members receive both written and oral testimonies. ACTIONS YOU CAN TAKE 1) Watch the hearing & read the written testimonies (click here). 2) At this time, the LDA suggests that you send a BRIEF only one page fax to the following US House Representatives thanking them for their role (listed after their name in parenthesis) in this hearing: Congressman Christopher H. Smith (NJ), (Subcommittee Chairman) 202 225 7768 (fax) Congresswoman Karen Bass (CA), (Subcommittee Member who attended) 202 225 2422 (fax) Congressman Frank Wolf (VA) (attendee) 202 225 0437 (fax) Congressman Chris Gibson (NY) (attendee) 202 225 1168 (fax) If any of these people are your US Representative, you can send an email through their email on their website. Those emails are usually limited to constituents. 3) Urge your 1 US House Representatives and your 2 US Senators to Co-Sponsor the Lyme bills today!  Click here for contact information and sample phone blurbs / letters. 4) Please forward this to others connected to Lyme and encourage them to sign up for the LDA newsletter by clicking on link below. The  LDA is an all-volunteer national nonprofit, 501 (c) (3), (has never had employees), dedicated to Lyme disease education, prevention, raising monies for research, and patient support. It has been accepted into the 2012 Combined Federal Campaign (CFC) which recognizes it as an approved charity for federal workplace giving. It is also a Guidestar.org exchange member, recognized for its transparency in operations. LDA is an Environmental Protection Agency PESP Partner and offers LymeAid 4 Kids program for children without insurance coverage. LDA-funded research has been acknowledged in 25 peer review journals to date, and LDA is presenting its 13th Lyme &Tick-Borne Diseases scientific conference jointly sponsored by Columbia University in Philadelphia in 2012. The faculty are comprised of national and international researchers in the field of tick-borne diseases and attendees can receive Continued Medical Education (CME) credits. LDA is associated with 45 Lyme organizations nationwide a loose network called LDAnet, with LDA as the umbrella organization. They are working together to make a difference for Lyme patients. In 2009, LDA developed an electronic billboard ad featured in Times Square, promoting the spread of chronic Lyme disease throughout the world. For information on Lyme disease  www.LymeDiseaseAssociation.org   PO Box 1438 Jackson, NJ 08527 888-366-6611   Click Here To Donate   Click here to Join Our Mailing List!

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Kaiser Permanente Lyme Disease Patient Information

Somehow I have missed, until now, a treasure-trove of Lyme information. This is especially relevant to Kaiser health care members, but there is a significant number of articles for all Lymies here.

 http://lyme.kaiserpapers.org/