Kudos to Dr. Spector for speaking up on Lyme Disease/MSIDS. Even he was initially told he was just “stressed.” His initial test was not positive enough, a result most of us are all too familiar with. He retested multiple times and finally got his positive.
Dr. Spector’s advice to all of us: BE YOUR OWN ADVOCATE!! He also states we need more research and he’s working on it, and that he will never run in the woods again.
https://www.fox5ny.com/news/lyme-and-reason-fox-5-news-special-report
Nov. 18, 2016
Excellent 20 minute video on Lyme Disease. A bit frustrated with Dr. Fallon still propagating the “bullseye rash” myth. It was also stated that if “If Lyme Disease goes untreated for two weeks there can be serious side-effects.” Again, there is no science or magic about the length of two weeks.
WE NEED TO DISPEL LYME/MSIDS MYTHS! Hardly anyone I work with fits into the CDC’s box of symptomology. Seriously, this needs to stop or no one is ever going to get diagnosed properly.
The following is on Fallon’s own website: http://www.columbia-lyme.org/patients/ld_lyme_symptoms.html
“Sometimes, other rashes occur in other parts of the body far away from the initial tick bite. This is because the spirochete gets transmitted quite rapidly in the bloodstream after the initial tick bite. Whereever the blood goes, there too will the Borrelia spirochete travel. In about 18% of cases, the classic well known CDC clinical features of Lyme disease are not present. If not caught early, the infection may then spread to many other parts of the body. This can occur over a period of days, affecting the central nervous system (brain), the peripheral nervous system (nerves), the cardiovascular system (causing pericarditis and/or 2nd or 3rd degree heart block and possible death if not treated immediately), the liver (causing mild hepatitis), the eyes (causing conjunctivitis). and the muscles and joints (causing migrating swelling, tenderness, and/or pain).”
Patients may develop cognitive problems from Lyme disease either early or many months or years after the initial infection. Neuropsychiatric symptoms can emerge either early or late in the disseminated phase of infection.”
Also, please note that patients do not have to go through all phases of the disease. They can hop right to the late stage in a relatively short time frame. Some folks’ only symptoms are psychological.
http://www.uptodate.com/contents/nervous-system-lyme-disease“Just as in neurosyphilis, nervous system involvement begins during early disseminated Lyme disease, when spread of the spirochetes can result in meningeal seeding [3]. As in syphilis, untreated Borrelia infection probably subsides in some patients but becomes chronic in others.”
http://www.nytimes.com/1995/02/15/us/personal-health-when-lyme-invades-the-brain-and-spinal-system.html“Meanwhile, within weeks of entering the body, the spirochete, a bacterium that resembles the organism that causes syphilis, can invade the brain and spinal cord. At first, patients may develop meningitis, encephalitis or problems like pain or loss of sensation stemming from an attack on the nerves that emanate from the brain or spinal cord. But as with syphilis, months or years may pass before the late signs of a neurological infection appear.”
http://www.lymediseaseaction.org.uk/about-lyme/neurology-psychiatry/“The clinical features may vary according to genospecies: B. garinii tends to cause a classic picture of neuroborreliosis as described below whereas B. afzelii tends to cause skin lesions and less specific neurological symptoms which may be more difficult to diagnose.”
http://jemsekspecialty.com/erythema-migrans/ LLMD Dr. Jemsek has this to say about less than 50% remember a bullseye rash: “In fact, this percentage is clearly an overestimate, as a majority of patients do not recall a rash, certainly not a classic bull’s eye form with central clearing.”
He also states: “A little recognized fact about the EM rash is that it can recur, usually in the original site, with or without antibiotic therapy. We estimate that between 5-10% of patients demonstrate this phenomenon during their illness. Other patients remark that they have migratory rashes of moderate duration from time to time that remain unexplained. It is more common, in our experience, to observe the presence of recurrent EM after the onset of antimicrobial therapy. We note that some patients erupt with rash repeatedly while on antibiotic therapy, often in different areas. Eventually this dissipates as the patient improves on antibiotic therapy. Pressure points may play a role in the appearance of the rash, but gravitational influence does not appear to play a role in terms of the site of eruption, i.e. as one would see in a vasculitis-like presentation characteristic of most drug reactions. The first appearance of rash has been reported as late as 6 months into therapy (personal observation). This has led to obvious diagnostic challenges when one is on antibiotic therapy and has to consider a drug reaction. However, we have come to recognize that the LD rash on treatment presents as flat or occasionally raised coalescent islands of erythema, in contrast to the classic generalized morbilliform rash caused by a drug reaction. When confronted with this clinical picture, the Jemsek Specialty Clinic views this as a positive indication of therapeutic benefit, probably representing a dermal form of the “Herxheimer reaction”, and so we generally proceed cautiously on with antibiotic therapy, usually with eventual resolution of the rash.”
https://sites.google.com/site/drjoneskids/faq-answers LLMD Dr. Jones states the following when asked if a rash occurs at the site of the bite or elsewhere: “The ECM rash may appear at the site of the tick bite or elsewhere on the body. Not everyone will get a rash (approximately 50%) and some people will have multiple rashes. Less than 10% of children get a rash.”
http://www.ilads.org/lyme/about-lyme.php“Fewer than 50% of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15% in culture-proven infection with the Lyme spirochete. Fewer than 50% of patients with Lyme disease recall any rash. Although the erythema migrans (EM) or “bull’s-eye” rash is considered classic, it is not the most common dermatologic manifestation of early-localized Lyme infection. Atypical forms of this rash are seen far more commonly. It is important to know that the EM rash is pathognomonic of Lyme disease and requires no further verification prior to starting an appropriate course of antibiotic therapy.”
Thankfully, Dr. Phillips knows the importance of words, and dispels the major myths. Thank you Dr. Phillips and thanks for reading my rant. This is too important not to comment on.
“LYME AND REASON: THE CAUSE AND CONSEQUENCE OF LYME DISEASE” presents an in-depth look at the cause and effect of Lyme disease, including the controversy over testing, the issues of misdiagnosis, and the personal struggles of medical professionals and patients contending with this life-changing illness.
Fox 5 News special report
https://www.fox5ny.com/news/lyme-and-reason-2-0-the-voices-of-change News Video Here (Approx. 21 Min)
Nov. 21, 2016
A follow-up to the groundbreaking “Lyme and Reason: The Cause and Consequence of Lyme Disease,” this follow-up — called “The Voices of Change” — focuses on the use of social media as a tool to inform and open the door to change on the Lyme disease front, and how patients, advocates, physicians and others are moving the conversation forward. Host Teresa Priolo sat down with TV personality and Lyme disease patient and advocate Yolanda Hadid about her ongoing battle with Lyme.
Please share this – particularly to children with Lyme/MSIDS and their parents. There is hope! This dear young lady managed to fight this horrific disease(s) and not only graduate from high school, but graduated with a 4.0 GPA. Then, true to form, she educates people and thanks everyone who played a part in her journey.
Please remind children with Lyme/MSIDS that while they have to slow down when they are having bad days, they will be able to speed up later. It’s hard to be patient, but if there’s one thing I’ve HAD to learn with MSIDS, it’s patience!
Cyrex invites you to participate in a free screening of an important new documentary called What’s With Wheat? that focuses on how the hybridization, chemical fertilization, preparation and overconsumption of modern wheat strains have negatively impacted health around the globe.
This compelling documentary will explore how wheat became so intertwined with the rise of modern civilization, how traditional culture preparation of the grain mediated some of the adverse effects on the human body, and a range of experts including Dr. David Permutter, Dr. Leo Galland, Dr. Terry Wahls and Dr. Natasha Campbell-McBride will discuss the chemical incompatibility with our biology of today’s wheat varieties.
The free screening of What’s With Wheat? is available globally June 24-30. To register for the event, please click on the link: http://go.cyrexlabs.com/e/24642/2016-06-22/bm9mtn/1044174029
MIT evolutionary biologist Kevin Esvelt wants to let thousands of genetically engineered white-footed mice loose on Nantucket Island in hopes of breaking the cycle of Lyme (borrelia) infection.
Esvelt explains:
“[The GE technique involves] taking immune cells from an exposed mouse that has protective antibodies and moving the genes encoding those antibodies into the second mouse.
“If we insert the antibody-encoding genes into the genomes of mouse reproductive cells, they will pass immunity on to their offspring. Our plan is to vaccinate many mice against Lyme or tick saliva, identify the most protective antibodies, then encode them all into the reproductive cells of other mice. In this way, we can take the total immune capacity of many different vaccinated mice and give it all to future mouse generations.”
Esvelt explains exactly how this is done:
“We will insert several copies of each protective antibody at neutral sites in the mouse genome using CRISPR, a genome editing tool that lets us precisely edit just about any DNA sequence in any organism. The resulting mice will be engineered to be immune (to either Lyme or tick bites or both), but will be 100 percent mouse with respect to their DNA. Any of their offspring that inherits a copy will be similarly protected, so adding multiple copies means that each mouse counts for several when it comes to protecting future generations.”
The project would take tens or hundreds of thousands of GE mice to be released over a period of years in a small area. The only way it would work in large areas is if they used foreign non-mouse DNA.
Anyone feel like they are in a bad Syfy flick yet? And I have a feeling that “foreign non-mouse DNA” sounds much nicer than it is.
Even the European union has ruled that CRISPR plants are GMO’s and should be regulated as strictly: https://www.technologyreview.com/the-download/611716/in-blow-to-new-tech-europe-court-decides-crispr-plants-are-gmos/
“It means for all the new inventions … you would need to go through the lengthy approval process of the European Union,” Kai Purnhagen, an expert at Wageningen University in the Netherlands, told Nature.
Questioning the practice, University of British Columbia infectious disease expert Jan Hajek, states:
“I wonder how much the scientific interest of the researcher to be innovative and advance our knowledge and ability to manipulate mouse genetics on both an individual and population level is driving this research and how much is the desire to reduce the impact of Lyme disease. It is an important question to ask — especially if public funds and hundreds of thousands of mice are to be used.I am not against bioengineering. I acknowledge the value of innovation and advancing basic science knowledge. However, I also recognize that both Lyme disease and animal welfare are pressing and important concerns.”
Hajek doesn’t support the project at this point and states:
“We have ways to tackle Lyme disease we are not using. We make excuses for needing more animal experimentation and research for the sake of human health — when we do not even use the means already available to us.”
Hajek says distributing vaccine-laden bait to mice has already been shown to reduce the rates of B. burgdorferi infection in ticks.
Why do I get the distinct feeling that what is driving all of this is money with enormous projects involving tons of manufacturing, animals, insects, https://madisonarealymesupportgroup.com/2015/12/28/frankinbugs/, vaccines, https://madisonarealymesupportgroup.com/2016/03/08/fixation-on-zikapolio/ and patents?
I guess going through hell on steroids for over ten years and coughing up about $150K for MSIDS treatment (multi systemic infectious disease syndrome or Lyme with friends), for my husband and I has turned me into a skeptic.
I continue to be baffled by the lack of research on things that will help patients today such as better testing and diagnostics, better treatments, insurance coverage, and practical help on deterring ticks from our yards and bodies.
Madison Area Lyme Support Group 