ILADS Guidelines Going Mainstream – now listed on National Guidelines Website
ILADS guidelines are finally going mainstream. They have now been listed on the National Guidelines website for doctors and healthcare providers around the country (USA, so far), meaning they are being recognized as trustworthy.
The following article from ILADS is very good news for all those with Lyme disease and their loved ones (and frustrated healthcare providers).
(Sept 21, 2015) — The Centers for Disease Control and Prevention (CDC) estimates that more than 300,000 new cases of Lyme disease occur annually in the US. ILADS guidelines, Evidence Assessments and Guideline Recommendations in Lyme disease: The Clinical Management of Known Tick Bites, Erythema Migrans Rashes and Persistent Disease” bring the latest scientific evidence to bear on the management of the illness. ILADS is proud to announce their guidelines are now available on the National Guidelines Clearinghouse (NGC) website. —– more —–
For Media Inquiries:
International Lyme and Associated Diseases Society (ILADS)
Barbara Buchman email@example.com
Biofilm in Lyme disease, first discovered by Dr. Alan B. MacDonald, has horrible implications for Lyme disease sufferers.
Dr. MacDonald, a hospital forensic pathologist, has studied Alzheimers and Dementia for most of his life. In his quest for answers, he decided to look for Lyme disease, specifically the bacterium, Borrelia burgdorferi, in the brains of patients who had died with Alzheimers.
Dr, MacDonald’s reasoning was that Borrelia is an organism that is very similar to Syphilis, which has long been known to cause dementia when left untreated. What he discovered shocked him. In seven out of ten separate brain samples from the Harvard Brain bank, he discovered both Borrelia spirochetes and cysts in high numbers. What REALLY caused the Dementia and eventual death of these patients?
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News, events & blogs brought to you from Lymedisease.org, who are dedicated to helping all of us who suffer with this debilitating disease and its co-infections. Please check them out and share their URL with friends around the world. The more we get the word out, the better chance everyone has of getting help and treatment.
Lyme community buys microscope for Dr. Eva Sapi’s research
“Real Housewife” tweets that she is back in the hospital
Much, much more. Please give your support and encouragement to LymeDisease.org. This organization is doing a tremendous amount for all of us, especially in bringing us up-to-date on all the news that effects us so much.
The Biology of Lyme Disease – a continuing saga of suffering, controversy and outright denial of facts…
by Dave Cottrell
The biology of Lyme disease continues to elicit controversy in the medical community, including denial of facts from those who are most able to help, and awful suffering from those who are sick, living with an un-diagnosed and therefore untreated disease.
As recently as two years ago, I was told by not one, but two infectious disease specialists that my disease was not Lyme disease, because I tested negative with the Elisa test, that the Elisa test was the gold standard for Lyme disease diagnosis, that you could get any positive test you wanted from an ACCREDITED US lab (referring to a Western Blot from Igenex in California), and that clinical trials have proved that antibiotic therapy is ineffective against chronic Lyme disease.
None of these things are true.
These doctors refused to consider the very number of my symptoms. That, alone, according to the Centre for Disease Control in my own jurisdiction, is enough for a positive diagnosis of Lyme disease. No other disease, except syphilis, which is very easy to test for, has such a high number of symptoms.
They could not or would not explain why my throat was sore for five years, and still had visible pustules.
They could not explain why I was getting sicker, and ignored that fact.
They could not explain why I continued to test positive for Bartonella, even after a short run of antibiotics, and when I tested negative for the third time for HIV, concluded that I had a natural genetic weakness in my immune system. That declaration was completely in opposition to the fact that at 47 years of age, having worked since 17 years of age, I had rarely missed a day of work, and often worked for years in a row, never missing a day of work, in a very physically and mentally demanding field.
They could not explain why my health improved while on antibiotics and declined when I went off antibiotics, claiming it was a placebo effect. (I am one of the few that cannot be hypnotized. I am NOT open to suggestion.)
They could not explain why my cortisol levels were elevated. Cortisol is the “fight-or-flight” hormone that is produced at times of stress, either by the situation (fear, for example) or by other stressors on the body, such as alcohol (I do not drink) or illness.
They diagnosed me with CFS (Chronic Fatigue Syndrome), which in itself is a misnomer. (See my article on ME – Myalgic Encephalomyelitis ). In fact, one of the recommendations of the massive study done on ME is that the patient be tested for previous exposure to Borrelia! They simply do not understand the biology of Lyme disease. Their own Colleges have told them that it is simple to treat and has no long lasting effects.
They denied that any clinical study has been done that supports long term antibiotic therapy for chronic Lyme disease, and even cite a study done a few years ago that was DESIGNED TO FAIL, yet I have on my desk a copy of a study done at Columbia University and reported in final form on June 26, 2007, more than six years ago! (A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy, by B. A. Fallon, MD et al ).
This study concluded that “IV ceftriaxone therapy results in short-term cognitive improvement for patients with posttreatment Lyme encephalopathy, but relapse in cognition occures after the antibiotic is discontinued. Treatment strategies that result in sustained cognitive improvement are needed.” Neurology 2008;70:992-1003
To put this in its simplest terms, their study proved that patients who were proven to have had Lyme disease, who had already had the standard treatment, but who continued to exhibit the cognitive problems with Lyme disease (brain fog), improved with another short run of antibiotics, then relapsed again when the treatment was discontinued.
The bottom line is, every bit of real science that has been done related to Lyme disease for at least the last ten years shows that unless it is diagnosed and treated in the early, acute stages, Lyme disease is very hard to treat with the present available medical knowledge, and takes a long time to resolve, if it is ever resolved. It is not known at this point in time if it is possible to cure everyone who truly has chronic Lyme disease.
One man who has studied Lyme disease (burreliosis) extensively is Dr. Alan MacDonald. He is a pathologist and recognized expert in Lyme disease. He studied Alzheimer’s for many years, and is one of several top research doctors who have made a positive connection between Alzheimer’s and Lyme disease. For example, he successfully grew burrelia cultures from the tissue four out of four brains taken from patients who died of diagnosed Alzheimer’s.
Dr. MacDonald has very graciously produced a number of videos in which he describes in detail many of the problems with Lyme disease recognition, diagnosis, denial and treatment. I am including part one, here. These are very good videos. Dr. MacDonald has done a remarkable job of explaining everything in a clear, concise, and very understandable way.
Rashes in Lyme diagnosis – a “typical” bulls eye is not the only rash to look for
by Dave Cottrell
Rashes in Lyme diagnosis, we have long been told, are present most of the time, and are always the bulls eye rash. The evidence to the contrary has been steady and almost overwhelming, yet steadily and overwhelmingly ignored by the medical “powers that be,” the various Colleges of Physicians and Surgeons.
As one who was continually “missed” diagnosed – in other words, they could not figure out what was wrong with me – these new facts just coming out new from good medical research prove what many, if not most of us who have suffered so long have been saying: While the “bulls eye” rash is considered absolute proof positive that the patient has Lyme disease, it is not the only rash that Lyme disease may present.
Many of us have strange lesions, rashes, even keritosis and “psoriasis” that may show up anywhere on our bodies and may last indefinitely. It is already well known that European burrelia may produce skin conditions that look nothing like a bulls eye, yet this has been denied in North America, especially, for years.
Now the latest research proves that there are many different so-called atypical rashes associated with Lyme burrelia that may or may not present during an active infection.
Far from being a symptom that makes Lyme disease even more confusing for medical practitioners, this will make diagnosis simpler for those who educate themselves about the various symptoms of Lyme disease.
This latest research, reported today by the Lyme Disease Research Database, is another much needed weapon in the battle for proper diagnosis and treatment of Lyme disease.
For further reading, go to http://www.lyme-disease-research-database.com/lyme_disease_blog_files/bulls-eye-not-the-only-skin-rash.html#unique-entry-id-313
Lyme Disease Co-infections – Best test for Lyme co-infections?
Lyme disease co-infections also need accurate tests, as they can help in the overall treatment protocol. The fact is, most people with Lyme disease DO have a number of co-infections. I also have Bartonella (persistent) and Babesiosis (also persistent). There are indicators of others, as well, but they are inconclusive.
Should Lyme patients be concerned about Bartonella? Commonly associated with Cat Scratch Disease (CSD), this bacteria is also commonly included in the toxic waste dumped into the human bloodstream via a tick or flea bite.
Best test for Lyme co-infections – courtesy of the Lyme Disease Research Database – If you have a diagnosis of Lyme disease, you should be aware that you may also be dealing with common co-infections such as Babesiosis, Ehrlichsiosis, or Bartonellosis. Get tested and treated for these additional inflictions, which can cause symptoms and impact the immune-system. What are some of the problems associated with co-infections? Well, it begins with not even knowing that you might have them. Not all diagnostics labs are created equal. We admire the work that is being done at IGeneX. Here are some of the reasons why. Same old Lyme-testing trouble…-continue-
Myalgic Encephalomyelitis is a mouthful for anyone, never mind those with the disease or perhaps one of its precursors, Lyme disease.
Like many who have discovered they have Lyme disease, I was diagnosed with Chronic Fatigue Syndrome (CFS) by an Infectious Disease specialist.
The specialist ignored a number of my symptoms and either would not or could not answer some of the questions I gave him in response to his diagnosis, like, “Why, if it was CFS, was I still getting sicker? Why did antibiotics (abx) bring a great improvement after one month, and why, after being on abx for six months, did I begin to get sick again within two months?”
His quick reply about abx was that it was a placebo effect; because my mind told me the abx would work, I felt better on them, and when I went off, my mind told me I was getting sick, again.
This reply was without knowing me, without knowing my nature, my natural skepticism about any kind of treatment, in fact, without doing any kind of proper assessment of what my experience with abx really was.
Bulls-eye rash is not the only Lyme rash – other skin rashes may also appear that look very different
The Bulls-eye rash is not the only rash that can appear in patients with Lyme disease. Long called the “typical” Lyme rash and WAY overstated as being “common” among those with the disease, it has now been recognized that there are other possible skin rashes that differ significantly from the bulls-eye rash and may resemble other skin conditions such as dermatitis, lupus and spider bites.
“Lyme disease is found in patients whose skin rashes do not look like the bull’s-eye, or so-called “typical” Lyme rash. Skin rashes related to Lyme disease may differ conspicuously from the bull’s-eye type. Lesions may resemble numerous other skin conditions, such as those associated with contact dermatitis, lupus, and spider bites.”
This is yet another example of what we all, as Lyme patients ourselves, have been fighting. How many have been given a five day prescription for antibiotics for a spider bite, “just in case it gets infected?”
How many of us have been told we have dermatitis, or as in my case, keritosis, even though this misdiagnosed rash is a common symptom of European burrelia?
Please read the article on the Lyme Research Database, share it, and ask your friends to share it again.
Finding an LLMD | Lyme-Aid.NET is an excellent resource for anyone struggling to get help. This blog owner has plenty of personal experience dealing with doctors who know nothing about Lyme disease, and has some very helpful insights and suggestions.
“I added this to my blog in an easier to read format http://littlebithaslyme.wordpress.com/. I’ve blogged about it before that’s why there is some more info right before the list but it was so buried I wanted to bring attention to it again especially with recent comments and feedback about it being helpful.
You can also find me on twitter under GarzaB2701. I tweet about Lyme sometimes but also life too because Lyme is not my whole life…just a part of it. It does not define me. You can find me on Facebook Brittany Lyme Aware which most of my stuff is about Lyme. If I can help you in some way please get ahold of me.”