Tuesday, July 24, 2012

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:

Monday, July 23, 2012

U.S. House Lyme Hearing Great Success

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

July 22, 2012                                          
LDA Logo
Lyme Disease Association, Inc. 

In This Issue
Hearing Significance
Summary of Oral Testimonies
Congressional Attendees
Actions You Can Take


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.


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

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.

Sunday, July 22, 2012

Life Cycle of Babesia

Babesia are malaria-like parasites transmitted by blood feeding ticks. Infection with Babesia microti causes humans to become anemic, experience spiking fever and chills, and exhaustion. In some cases, the infection can be fatal. This 3 minute video demonstrates the life cycle of Babesia microti, starting in the blood of white-footed mice. Follow the parasite as it is ingested by deer ticks, and finally is transmitted to humans through tick saliva.


To learn more about tick bite prevention and to see more funky graphic movies about ticks, please visit www.TickEncounter.org

A founding member of IDSA says IDSA guidelines are wrong

Chronic Lyme Patients Get Political Victory: New Book by Top Infectious Disease Doctor Supports Long Term Antibiotic Treatment

"Chronic Lyme disease does exist," says Burton A. Waisbren Sr. MD, FACP, FIDSA, in his new book, "Treatment of Chronic Lyme Disease: Fifty-One Case Reports and Essays in Their Regard." The book, released in January, 2012, adds fuel to the already fiery debate over the existence of chronic Lyme disease.

Milwaukee, WI (PRWEB) February 24, 2012 -- Chronic Lyme disease has become one of the most hotly debated diseases in medical history.

Those who claim that the disease is fictitious have stood on the argument that the doctors who treat this condition are untrained in infectious disease and are unqualified to determine whether the syndrome is in fact a legitimate diagnosis.

Dr. Burton Waisbren's new book, "Treatment of Chronic Lyme Disease: Fifty-One Case Reports and Essays in Their Regard", has rendered such an argument invalid. Burton Waisbren, MD, FACP, FIDSA, has been practicing medicine for over 57 years. He is one of the Founding Members of the Infectious Diseases Society of America (IDSA) and has published research on Lyme disease in prestigious journals such as The Lancet. He is board-certified by the American Board of Internal Medicine and is a fellow of the American College of Physicians, as well as the Infectious Diseases Society of America. He is also a founding member of the American Burn Association and the Critical Care Society of America.

One thing is certain: Dr. Waisbren has the credentials to take an authoritative position on the chronic Lyme disease debate. And, like more and more experienced physicians, his position goes against the guidelines of the very organization of which he is a Founding Member: The Infectious Diseases Society of America (IDSA). Despite mounting scientific evidence, this organization continues to deny the reality of chronic Lyme disease. Sufferers of chronic Lyme disease are encouraged by Dr. Waisbren's position. "This doctor's credentials and experience are turning the tide in the chronic Lyme disease debate," says Bryan Rosner, a recovered Lyme patient and owner of BioMed Publishing Group (South Lake Tahoe, CA), the publishing company that markets Dr. Waisbren's new book.

Read full article:

Thriving Gut Bacteria Linked To Good Health

There's no magic elixir for healthy aging, but here's one more thing to add to the list: good gut health.
study published in the latest issue of Nature finds diet may be key to promoting diverse communities of beneficial bacteria in the guts of older people.
To evaluate this, researchers analyzed the microbiota, or gut bacteria, of 178 older folks, mostly in their 70s and 80s.
Some of the people were living in their own homes, and their diets were rich in fiber, fruits, vegetables, grains, poultry and fish.
Read or listen to the rest of the story:

Saturday, July 21, 2012

Recording of House Committee on Foreign Affairs Lyme hearing

If you missed this hearing on Capitol Hill last week, here's the link. It was very good, and productive, even though the IDSA and CDC failed to send anyone to the hearing. 

"Global changes in diagnosing and managing Lyme disease -- Closing knowledge gaps"

For some reason, they recorded about 20 minutes prior to the beginning of the hearing, so skip ahead about 20 or 25 minutes. Otherwise you'll just see a still photo of the US Capitol building and no sound, and you'll think the link was wrong. 

One Grain More - A song about food allergies

Now for something completely different...

Friday, July 20, 2012

Canadian radio show on Lyme

Why Canadians are going to the US for treatment.Wednesday July 18, 2012

Lyme Disease suffering and misdiagnosis

Chronic Lyme disease -- Why Canadians are going to the US for treatment. 

A bite from a tick opens the door to years of suffering for some Canadians. Open lines with Jim Wilson, president of the Canadian Lyme Disease Foundation, about the challenges of getting diagnosed and treated in Canada.

 (Runs 0:51:00 ) 
Another article on the same topic:
A number of articles on Lyme in Canada:

Sunday, July 15, 2012

CDC video about Lyme

Here's the party line about Lyme, and 'post Lyme syndrome', as theorized by Alan Steere, MD, who discovered Lyme in CT, many years ago. Note that although he acknowledges that there is controversy over persistence of symptoms in some patients after typical IDSA-approved treatment, he does not offer any of the supporting evidence for this persistence. E.g., there is no mention of the study of monkeys who still hosted spirochetes after treatment with a typical IDSA-approved course of antibiotics. 

At least the findings about the rise of Lyme infection IS acknowledged.

Please leave comments about this video so others may benefit from your knowledge. 

CDC video:  "Top 7 Notifiable Diseases United States, 2009".

at 9:33

A link to this video is on the CDC Lyme Disease web page.

Friday, July 13, 2012

Hypercoagulation: The CFS/FM Plot Thickens

Very interesting article on "sticky blood" and how it can contribute to Lyme disease. This is not exactly a new article (it's from 2001), but is still something that chronicly-ill Lyme and other immuno-compromised patients should know about.

This article was found on:

Melissa Kaplan's
Chronic Neuroimmune Diseases
Information on CFS, FM, MCS, Lyme Disease, Thyroid, and more...
Last updated February 27, 2012

The CFS/FM Plot Thickens
Melissa Kaplan, The Carousel Network News, 8(5), 2001
A simplified introduction into hypercoagulable state...

Research conducted by Dr. David Berg and others at Hemex Laboratories1 has found hypercoagulation to be a factor in many patients with chronic fatigue syndrome (CFS), fibromyalgia (FM), myofascial pain syndrome (MPS), and other disorders such as osteonecrosis (bone loss due to inadequate blood supply), and fetal loss.

Hypercoagulation (thickened blood) results from fibrin being deposited in small blood vessels. Fibrin is the body's natural bandaid: strands of fibrin form across a defect (wound, tear) in the walls of blood vessels, forming a mesh that holds platelets and blood cells. This beneficial clotting of cellular matter and fibrin strands plugs the leak, so to speak, holding things together until the body starts to repair itself.

Fibrin production is the last stage in a complex clotting process. The process itself starts off with the release of thrombin which in turn results in the production of soluble fibrin monomer (SFM), a sticky protein that increases blood viscosity. This leads to the deposit of fibrin on the endothelial cells that line the wall of the blood vessels. Under the normal conditions, it takes only a single burst of thrombin to generate a large amount of SFM which in turns produces sufficient amounts of fibrin to clot the defect. Testing of many patients diagnosed with CFS, FM, MPS shows that the thrombin-SFM-fibrin process is not working properly. Instead of a single burst of thrombin producing the amount of SFM needed, the thrombin keeps being produced at low levels. Instead of clots being formed, however, the result is that blood becomes increasingly thickened. The body's own ability to thin blood and break up clots is impaired because the fibrin smothering the endothelial cells prevents those cells from releasing heparans.

Read more: