What does the "Facts" say?

(The title of this post is not a typo. It's a variation on a current 'meme' that has taken up residence in  my grey matter after listening to too many YouTubes by Ylvis. If you haven't been exposed to the gone-viral vids by comedic Norwegian brothers, Ylvis, just Google "What does the fox say?"

Here's something that came across my e-desk this morning. It is an email posted to a LLMD Listserv I read. I asked for his permission to reprint it here.  If you have any interest in the controversy about Lyme disease prevalence, diagnosis, and treatment, and wonder why so many of us are left out in the cold fending for ourselves against what we believe is a pandemic that is being ignored, read on.

"First off, they said it was a new disease, which it wasn't. Then it was thought to be viral, but it isn't. Then it was only transmitted by the Ixodes dammini tick, which is no longer considered a valid tick species. Then it was thought that seronegativity didn't exist, which it does. Then they thought it was easily treated by short courses of antibiotics, which sometimes it isn't. If you look throughout the history of Lyme disease, almost every time a major dogmatic statement has been made about what we know about this disease, it was subsequently proven wrong or underwent major modifications."

         --Dr. Ed Masters

"The controversy in the Lyme disease research is a shameful affair and I say this because the whole thing is politically tainted. Money goes to the same people who have for the last 30 years produced the same thing—nothing."

          --Dr Willy Burgdorfer (Discoverer of Lyme disease, from Under Our Skin)p

"Obviously this NPR piece (the recent interview with Alan Steere) was orchestrated for an agenda, probably to oppose the pending legislative efforts.

It does give insight about the definition of Lyme disease he and his cohorts advocate, and points out three fatal flaws that are present in his opinion:

1. It is implied that anyone agreeing with the restrictive definition of Lyme disease is "mainstream medicine" and anyone having a broader definition is only from "advocacy groups."

2. There is excessive confidence placed in current testing: when the (two tiered) testing conflicts with the clinical presentation it cannot be Lyme.

3. Authority should be given to the opinion currently advocated by CDC and IDSA.

It is well documented in the peer reviewed literature recognition of a broader definition of Lyme disease is more valid and many mainstream physicians and scientists recognize these findings. Advocacy groups read the scientific literature and other sources of information and decide for themselves which position is more plausible. No immune based testing can ever be reliable when testing for a microbe that has immune evasive mechanisms and current testing, including his, demonstrates the two tiered testing is very poor.

The whole basis of science is to question every hypothesis and to never defer to any so called authority opinion from CDC, IDSA or anyone else. If we do defer to authority, who has more authority in this dispute—detached bureaucrats and bench scientists who don't have ongoing clinical responsibilities (who dominate CDC and IDSA opinion) or those who conduct clinically relevant research and the front line physicians who have the long-term responsibility to treat Lyme patients? Continuing the circular logic advocated by Dr Steere will keep us going in circles rather that progressing forward with a better understanding of Lyme disease."

              --Robert C Bransfield, MD, DLFAPA

If you like what you learn from my blog, please subscribe. I will not spam you. I'm only interested in helping others (and me) recover from Neuro Lyme disease. 

-Bob

Early Lyme disease with spirochetemia - diagnosed by DNA sequencing

Early Lyme disease with spirochetemia - diagnosed by DNA sequencing

Abstract

Background

A sensitive and analytically specific nucleic acid amplification test (NAAT) is valuable in confirming the diagnosis of early Lyme disease at the stage of spirochetemia.

Findings

Venous blood drawn from patients with clinical presentations of Lyme disease was tested for the standard 2-tier screen and Western Blot serology assay for Lyme disease, and also by a nested polymerase chain reaction (PCR) for B. burgdorferi sensu lato 16S ribosomal DNA. The PCR amplicon was sequenced for B. burgdorferi genomic DNA validation. A total of 130 patients visiting emergency room (ER) or Walk-in clinic (WALKIN), and 333 patients referred through the private physicians' offices were studied. While 5.4% of the ER/WALKIN patients showed DNA evidence of spirochetemia, none (0%) of the patients referred from private physicians' offices were DNA-positive. In contrast, while 8.4% of the patients referred from private physicians' offices were positive for the 2-tier Lyme serology assay, only 1.5% of the ER/WALKIN patients were positive for this antibody test. The 2-tier serology assay missed 85.7% of the cases of early Lyme disease with spirochetemia. The latter diagnosis was confirmed by DNA sequencing.

Conclusion

Nested PCR followed by automated DNA sequencing is a valuable supplement to the standard 2-tier antibody assay in the diagnosis of early Lyme disease with spirochetemia. The best time to test for Lyme spirochetemia is when the patients living in the Lyme disease endemic areas develop unexplained symptoms or clinical manifestations that are consistent with Lyme disease early in the course of their illness.

Read the whole study:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2984391/

Plasma thermogram for Lyme

Here's an interesting announcement about a blood test that uses heating of the blood to reveal the existence of various diseases the patient might have. One of the diseases that a heat profile has been determined for is Lyme disease. Check out the article.

-Bob

http://uk.news.yahoo.com/blood-heat-test-39-may-reveal-cancer-39-220004005.html#s0qei9q

Alan MacDonald, MD writes to Katie Couric, after her Lyme show

Dear Katie,

Infections of the Borrelia complex are plural, chronic, and recalcitrant to short therapies in many patients. Lyme is an outmoded label for this plurality of public health issues and the word "Lyme" leads to oversimplification of regulatory thinking about pluralities of actual diseases in the human host.

These conceptual voids lead to under-diagnosis, under-treatment, and under-reporting of actual human disease cases. Morbidities from chronic borreliosis - complex diseases and mortalities are not properly diagnosed or recorded by the Centers for Disease Control.

Politicization of these medical entities has become codified and entrenched by
rules promulgated by the CDC and the Infectious Disease Society of America (IDSA). Proper diagnosis and proper treatment of borreliosis complex diseases must be individualize to manage each patient. Central Dogma was rethought and discarded in the early years of DNA science. The AIDS conundrum was only solved by rejection of the Central Dogma and the awakening to the idea that the AIDS virus and other Reverse Transcriptases produced disease by reversal of the Central Dogma of DNA. These were unimagined by the CDC.

Statisticians in Atlanta Georgia, and "rules" about Haitian diseases did not lead the way in the management of the worldwide AIDS crisis.

The exposee "And the Band Played On" lighted the way for a pathway to truth which had been steadfastly spurned by the CDC. Presently the CDC is spurning knowledge about the Borreliosis/Lyme epidemic. Doctors of philosophy prevail over doctors of medicine in the inner  workings of the Centers for Disease Control. Only doctors of medicine are obligated to solve individual patient health problems.

Let the doctors who actually take care of patients practice the healing art, without encumbrances by doctors of philosophy and statisticians.

Alan B. MacDonald, MD, FCAP October 9,2013

RESEARCHER BIO 
MD, American Board of Pathology Certified in both Anatomic Pathology and Clinical Pathology.
35 years of Hospital Diagnostic Pathology experience in all areas of Diagnostic Pathology
of Benign, Infection, and Malignant diseases of humans. 30 Years of experience with Borrelia Research, at the level of Bench research in a biosafety Level 2 Microbiology, and experience with Ultracentrifugation, Pulsed Tangential Alternating Field Electrophoresis, Electron Microscopy, In vivo borrelia primary Isolation, borrelia focused Autopsies on Fetal and Human patients, Primary Isolation of borrelia from Frozen Alzheimer Brains obtained from Dr. George Glenner's UCSD Brain Bank, Primary Isolation of borrelia from Autopsy Alzheimer's Disease brain in community hospital practice, PCR study of the Flagellin B ORF of Borrelia burgdorferi, DNA sequence analysis of PCR products for FLAGELLIN B  DNA from AD frozen tissues from tbe Harvard Mclean Hospital Brain Tissue resource Center, Development and validation of Borrelia-specific DNA probes for Flagellin B, and for the inner cell membrane of Borrelia burgdorferi species BB0060., confirmation that biofilms of Borrelia exist IN VITRO, and extension to IN VIVO Borrelia biofilms in human bacterial Endocarditis, various Cutaneous borrelioses, and Neuroborreliosis.

Foundation in Canada dedicated to Lyme Research

G. Magnotta Foundation for Vector-Borne Diseases becomes official Canadian registered charity
VAUGHAN, ON, Jul 3, 2013, 2013 (Menafn - Canada NewsWire via COMTEX) --Foundation is partnering with Toronto's new Humber River Hospital to establish Canada's first facility dedicated to Lyme disease and other vector-borne illnesses.

Rossana Di Zio Magnotta, president and CEO of Magnotta Winery Corporation, announced today that the G. Magnotta Foundation for Vector-Borne Diseases has been granted charitable status by the Canadian government.

Funds raised by the new foundation will be focused on establishing Canada's first facility dedicated to research, testing and treatment of Lyme disease and other vector-borne illnesses.

In addition, Magnotta announced the foundation is partnering with Toronto's new Humber River Hospital to house the facility when the state-of-the-art, acute care hospital opens in Fall 2015 in North Toronto at Keele and 401.

"We are thrilled to be working with Humber River Hospital to bring our long overdue facility for vector-borne diseases to Canada," said Magnotta. "The new Humber River Hospital is leading the way as North America's first fully digital hospital with a new model for patient care as well as aggressive green initiatives. Now it's including a world-class facility for researching Lyme disease and other vector-borne illnesses that will lead to better diagnostics and treatment for Canadians here in our own country. Currently, Canadians have had to leave Canada to get the necessary help."
Vector-borne diseases are transmitted to humans through the bite of an infected vector such as a mosquito or tick. Lyme disease is a common vector-borne disease that's currently affecting Canadians and is expected to grow.

Magnotta pointed to a recent study by the Public Health Agency of Canada and published in the Journal of Applied Technology that indicated the speed of tick invasion in eastern Canada is predicted to increase from 18% in 2010 to over 80% by 2020. Magnotta said this will likely result in a substantial increase in Lyme disease among Canadians. The two major factors dramatically influencing this rate of speed are more migratory birds carrying ticks coming across Canadian borders and climate warming.

Read the rest of the story here:

http://www.menafn.com/c76ade3d-1800-442f-b9d8-1a48af838990/G-Magnotta-Foundation-for-VectorBorne-Diseases-becomes-official-Canadian-registered-charity?src=main

New Tick-Borne Illness May Be Misdiagnosed

Case reports look at 2 older patients with Borrelia miyamotoi infection

By Randy Dotinga
HealthDay Reporter

MONDAY, July 1 (HealthDay News) -- Physicians say a new kind of tick-borne infection that's similar to Lyme disease can mislead doctors into thinking it's a different condition.

Borrelia miyamotoi can cause flu-like symptoms that are similar to Lyme disease, researchers found.

"In the few case reports available for patients in the U.S., symptoms of B. miyamotoi infection have included fever, fatigue, body aches, joint pain and headache," said Dr. Bobbi Pritt, director of clinical parasitology at the Mayo Clinic in Rochester, Minn. Pritt was not involved in the research.

Researchers also think infection may cause dementia in the elderly, especially those who have conditions that weaken the immune system.

Lab tests also show low blood platelet counts and elevated liver enzymes, Pritt said...

Read the rest of the story:

http://health.usnews.com/health-news/news/articles/2013/07/01/new-tick-borne-illness-may-be-misdiagnosed

Lots of articles on Lyme research

Here's good reading for a week!

http://www.sciencedaily.com/search/?keyword=lyme

Type in any keyword for other research on illnesses.

Funds available to assist with lyme and co-infection testing

Just a reminder that Lyme-TAP has funds available to help out with the cost of testing for Lyme and co-infections for both adults and children.

They will cover up to 75% of allowable testing, either via reimbursement (you pay for the tests, then get money back), or via prepayment (they write a check payable to the lab that you're using). 

Read more at http://LymeTAP.com.

About the Advanced Labs Spirochete Culture test.

There is a new test on the block for confirming active infection with borrelia. Until this test appeared, even the best testing (such as through Igenex) looked only for the antibodies that Lyme infection would trigger the immune system to generate. In a way, it's like looking for an echo of an infection, rather than for the invading critter itself. Furthermore, if your immune system is really not functioning correctly, it may not have the strength to mount an adequate defense, so antibodies may not be created, and an antibody test may have false negative results.

PCR (polymerase chain reaction) tests are more accurate, because they look for actual pieces of DNA of a pathogen such as borrelia. That's more like looking for a fingerprint at a crime scene. You know for certain someone has been there, and recently. See this Wiki aabout PCR for more detail:
http://en.wikipedia.org/wiki/Polymerase_chain_reaction

Before a PCR test, the patient will take a batch of antibiotics in hopes of killing some borrelia bacteria. This would, theoretically, result in breaking up the bacteria into bits and pieces. These remains will be excreted through various means (if the detox pathways are working well enough), such as through urine. The patient collects some urine and sends it to a lab for processing.

Getting a positive PCR result from the lab has been the gold standard for diagnosing Lyme. It proves that borrelia (Lyme) bacteria are present in the patient NOW, not an echo of a past infection. However, getting a positive PCR is difficult because borrelia spirochetes are crafty and can hide out in internal organs, cysts and biofilms where antibiotics can't reach.

This is where a new test, developed by Advanced Laboratory Services, comes in. It is a 'culture' test. This new test is a blood test that, theoretically, can find even more of a 'smoking gun' than the PCR does. Instead of finding bits and pieces of dead borrelia, it actually tries to grow borellia in a lab dish that is filled with a sample of your blood. Using various tests, such as looking at smears of the blood under a microscope, the lab can tell you if the blood sample actually has living, functioning borellia spirochetes in it.

The following is a description from Advanced Labs, explaining how to get the test.

-Bob

SPIROCHETE/BORRELIA TESTING: FREQUENTLY ASKED QUESTIONS:
How may I obtain a blood collection kit for the Spirochete/Borrelia test?
We will provide blood collection kits directly to physicians' offices. We ask that interested patients contact their doctors in order to obtain kits from Advanced Laboratory Services. There is no initial charge for the collection kits, and kits cannot be sent directly to patients.

What is the cost for the test, and how may I pay for it?

Advanced Laboratory Services charges $595 USD for the Basic Spirochete/Borrelia test - this is in addition to any collection and processing fees the practitioner may charge. The test is paid for by the patient (check or credit card), and may be reimbursed partly by some insurance carriers. The requisition form supplied in the blood collection kit includes all payment information.

Where is the test available?

Advanced Laboratory Services is pleased to announce that the Borrelia Blood Culture is now available for clinical use in 49 states.

Please Note:
It is NOT yet available in the state of New York- currently applications have been filed and are pending. Unfortunately, international samples (including Canada and Mexico) cannot yet be accepted. We hope to offer testing to Canadian patients in the near future, and will issue a press release as soon as this is available.

Why Do A Culture?

A culture is a direct test. It will tell you whether the infection is present, and is more accurate than a serology (ELISA and Western Blot), which is not a direct test and at best can only indicate prior exposure. For example, in diagnosing a urinary tract infection, do you test the blood for antibodies to E. coli, or do you culture the urine? The obvious answer also applies to diagnosing infection due to Borrelia burgdorferi (Bb). Cultures are more useful and give more information.

Who may order this test?

Based on the laws of Pennsylvania where we are located, it must be ordered by a medical practitioner defined by them as an MD, DO, CRNP, PA-C, and Certified Nurse Midwife. If you are an ND, and even if you may order tests in the state in which you practice, you still will need to have the test ordered by the type of practitioner on Pennsylvania's approved list. Note that it also cannot be ordered directly by the patient. The practitioner must request a blood drawing kit from Advanced Labs, and once the specimen is drawn, it must be received by us within 24 hours. Please refer to the collection guidelines, below.

What are the guidelines for blood collection to ensure the highest culture yield?

Patients should be antibiotic-free for at least 4 weeks prior to collection.
Have symptoms and/or signs of active disease at the time of blood draw
Patient samples MUST be drawn and shipped Monday - Thursday. Do NOT send any samples on Friday or Saturday as the lab is not open on weekends!

Blood must reach the lab within 24 hours of being drawn!!! Be sure to send the specimen out the same day it is collected, and use the FedEx overnight mailers we provide in the kits.

It is suggested that the blood draw be scheduled for the afternoons if possible because that is when spirochetemia is more likely. However, be sure that FedEx will do an afternoon pickup for you.

Does the laboratory participate in clinical research?

It is the position of the lab that our function is to provide these incredibly useful tests, and to refine them continually over time. We are aware that the availability of this testing method opens up new avenues of clinical research that may help answer the many remaining questions that clinicians and patients face every day. If a well designed and powered study were to be set up, then the lab would be most cooperative in assisting as it is able.

Have a question? Let us know.
http://www.advanced-lab.com/
http://www.advanced-lab.com/faq.php

NY Newspaper and Videos about Lyme controversy

I picked this up off of the California Lyme listserv today. Apparently, a reporter for a newspaper in Poughkeepsie, NY (a major endemic Lyme area) has been working on a series of articles about the Lyme controversy. The whole panoply of issues around Lyme is being examined, e.g. underreporting, problems with patient care, co-infections (babesia and the national blood supply), and so on. The reporter's name is Mary Beth Pfeiffer.  The newspaper is the Poughkeepsie Journal. Also, look out for part two of our special report on Lyme disease will continue in Sunday's Journal. (Sunday Aug 19, 2012)

-Bob

SPECIAL REPORT: 

In 2010, 94% of Lyme disease cases were reported from 12 states: New York being one of them with nearly 2,385 diagnosed cases. The Journal conducted an in-depth analysis of treatment options, # of cases and severity of Chronic Lyme disease in our region. Look up Friday's Journal to see what we found out about cases in the Mid-Hudson Valley – in particular Dutchess, Ulster, Columbia and Greene counties. You might be surprised. http://pojonews.co/R4Sccz
Have you ever been diagnosed with Lyme disease? If so, how long did it take before you felt better? What treatment(s) was/were used? Let us know about your case.

ABOUT THE SERIES

With this article, the Poughkeepsie Journal begins an intensive look at Lyme disease and its repercussions in the Hudson Valley, a region with the nation’s highest rates. 

The author interviews Pat Smith, Drs. Fallon, Horowitz, Liegner, Pam Weintraub, Congressman Gibson, Assemblyman Miller and many others including Drs. Baker and Wormser.

1. Video Interview of chronic Lyme patients
http://www.poughkeepsiejournal.com/videonetwork/1791355261001?odyssey=mod|tvideo2|article
2. Exposé about the seriousness and underreporting in NYS as started in
CT and spread to WI - Where next?
http://www.poughkeepsiejournal.com/article/20120817/NEWS01/308170039?source=nletter-top5
3. About the seriousness of Babesia
http://www.poughkeepsiejournal.com/article/20120817/NEWS01/308170049/New-tick-borne-threat-emerges?odyssey=mod|mostview4. SAVE THE DATE - THURSDAY Aug 23, 2012 - ONLINE CHAT with reporter 7 PM 
http://www.poughkeepsiejournal.com/facebook

Get online to tell her your story: what is going on in the south, CT, CA,
the IDSA.

HOW YOU CAN HELP

There are only a few comments, and hardly any tweets or FB entries, as of this posting. Let's encourage this courageous reporter. 

Letters to the Editor should be addressed to letters@poughkeepsiejournal.com 
Letters to the author should go to: mbpfeiff@poughkee.gannett.com
Facebook page: http://www.facebook.com/pages/Poughkeepsie-Journal/68903794473

New Lyme test available in Europe

Borrelia spirochetes

11/17/12 10:54 Filed in: Lyme Disease Tests

A new test that detects the Borrelia infection is now available in Europe. I hope to find out whether this novel test will become available in the US anytime soon.SpiroFind was developed in Mellrichstadt, Germany by the European subsidiary of BoulderDiagnostics, a privately owned company in Colorado that focuses on diagnosing diseases that are not reliably diagnosed.

The SpiroFind test detects Borreliosis through each stage, from early to late or chronic manifestation. It works by measuring the immune response to the Borrelia bacteria. Europeans may now contact the clinical laboratory, which is accepting blood samples for testing.

The effectiveness of the SpiroFind test was confirmed in a clinical study at the Radboud University Nijmegen Medical Centre in the Netherlands. Conclusions of the study have been submitted for peer-reviewed publication and presentation at a conference in Berlin, Germany in April 2013.DNA Test in US Available
Another new Lyme disease test, which tests DNA, became available in the US in 2010. I talked to Dr. Sin Hang Lee about this test, which is available in Milford, Connecticut. Patients and physicians interested in information on this DNA test may call George Poole, manager of Milford Medical Laboratory, at 203-876-4496.

New diagnostic tools give us hope for earlier and more effective treatment. 

The web site for 

http://boulderdiagnostics.com/wp/our-spirofind-lyme-disease-diagnostic-test-is-now-available-in-europe/

This article posted with permission form Lyme Disease Research Database at:

http://www.lyme-disease-research-database.com/lyme_disease_blog.html

Everything You Always Wanted to Know About the CD-57 Test But Were too Sick to Ask

by Ginger Savely, RN, FNP-C

From coast to coast, frustrations abound among patients and clinicians regarding the diagnosis of chronic Lyme disease. Misinformed health care providers in Texas and surrounding states consider the infection rare and non-endemic.

They are inclined to rule out Lyme disease based on the negative result of a laboratory test that, unbeknownst to them, is highly insensitive. In the absence of a reliable laboratory test or adequate experience in the recognition of the varied and complex presentations of the illness, most clinicians are ill-equipped to diagnose chronic Lyme disease. Many patients suffer needlessly for years, hopelessly lost in the maze of the health care system, looking for answers and enduring the skepticism of practitioners inexperienced with the disease’s signs and symptoms.

What is needed is a better Lyme test or some other objective measure to persuade the practitioner to consider the diagnosis of chronic Lyme disease.

Enter the CD57 test! You may have heard the term “CD57” tossed around on chat groups, or your Lyme-literate health care provider may have even explained the test to you in one of your moments of brain-fogged stupor. What is this number that sounds more like a type of Heinz ketchup than a lab test, and what in the world does it have to do with Lyme disease?

Let’s start by going back to basic high school biology. You may remember that white blood cells (a.k.a. leukocytes) are the components of blood that help the body fight infections and other diseases. White blood cells can be categorized as either granulocytes or mononuclear leukocytes. Mononuclear leukocytes are further sub-grouped into monocytes and lymphocytes.

Lymphocytes, found in the blood, tissues and lymphoid organs, attack antigens (foreign proteins) in different ways. The main lymphocyte sub-types are B-cells, T-cells and natural killer (NK) cells. B-cells make antibodies that are stimulated by infection or vaccination. T-cells and NK cells, on the other hand, are the cellular aggressors in the immune system and are our main focus in the discussion that follows...

Read the rest of the story...
http://www.publichealthalert.org/Articles/gingersavely/everything%20you%20always%20wanted.html

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.

U.S. House Lyme Hearing Great Success

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

Having trouble viewing this email? Click here

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!

Forward email

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/

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:
http://www.canlyme.com/Waisbren_Burton_Treatment_Chronic_Lyme.html

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".

http://www.youtube.com/watch?v=k7L61d--GmI&feature=channel_video_title
at 9:33

A link to this video is on the CDC Lyme Disease web page.
http://www.cdc.gov/lyme/

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

Hypercoagulation
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:
http://www.anapsid.org/cnd/diffdx/hypercoagulation.html

Lyme Disease Cited in Connection to Woman's Erratic Behavior

Here's an article about Lyme possibly being capable of causing psychiatric conditions.

http://abcnews.go.com/Health/lyme-disease-cited-connection-womans-erratic-behavior-waldorf/t/story?id=13564951