Lyme Disease Support Group
Lyme disease is the most common vector-borne disease in the Northern Hemisphere. It is now one of the fastest growing infectious diseases in the U.S. Lyme disease is caused by infection with the Borrelia burgdorferi bacteria, and is primarily transmitted to humans as well as dogs, horses and other domesticated animals by the bite of infected ticks.
Are the people in this support group for Lyme aware that one of the doctors-- Dr Sharon Orrange--- who writes a blog for Daily Strength (and can be found here at http://tinyurl.com/7jqqtu7) states, among other 'facts':
1. - Not restricted geographically and can occur in many places in the U.S.--False
2. - Usual doses and durations of antibiotics are insufficient and long-term treatment with multiple antibiotics is needed--False
3. - Patients with chronic Lyme usually have several other infections, such as from Bartonella, Babesia, Mycoplasma, Chlamydia, and Anaplasma--False
Then she goes on to bring up some history (which is true) but is only about some rogue doctors who were using protocols that are NOT what Lyme specialists use. Bismacaine and dinitrophenol!!!
She quotes from the IDSA playbook----"The Infectious Diseases Society of America (IDSA) guidelines recommend antibiotic treatment for Lyme disease for 1028 days and most skin lesions, arthritis and other symptoms resolve with antibiotic treatment- so it is rare to require additional therapy." and forgets to add that that ONLY works if treatment is started IMMEDIATELY (within a few days or weeks at the most).
I wonder how many of this readership got treatment right away?
Dr. Orrange concludes:
"It is important to stay on the side of credible evidence and high quality scientific studies."
Nice save, Dr. Orrange! It's also important to know your 'facts' . For instance, I wonder if she's aware just how wrong she is about this 'fact' she presents, below:
"The most common thing you see with Lyme disease is a skin lesion (erythema migrans) that occurs at the site of the tick bite."
Perhaps the members of this forum should shower her with facts----- not 'facts'.
1. - Not restricted geographically and can occur in many places in the U.S.--False
2. - Usual doses and durations of antibiotics are insufficient and long-term treatment with multiple antibiotics is needed--False
3. - Patients with chronic Lyme usually have several other infections, such as from Bartonella, Babesia, Mycoplasma, Chlamydia, and Anaplasma--False
Then she goes on to bring up some history (which is true) but is only about some rogue doctors who were using protocols that are NOT what Lyme specialists use. Bismacaine and dinitrophenol!!!
She quotes from the IDSA playbook----"The Infectious Diseases Society of America (IDSA) guidelines recommend antibiotic treatment for Lyme disease for 1028 days and most skin lesions, arthritis and other symptoms resolve with antibiotic treatment- so it is rare to require additional therapy." and forgets to add that that ONLY works if treatment is started IMMEDIATELY (within a few days or weeks at the most).
I wonder how many of this readership got treatment right away?
Dr. Orrange concludes:
"It is important to stay on the side of credible evidence and high quality scientific studies."
Nice save, Dr. Orrange! It's also important to know your 'facts' . For instance, I wonder if she's aware just how wrong she is about this 'fact' she presents, below:
"The most common thing you see with Lyme disease is a skin lesion (erythema migrans) that occurs at the site of the tick bite."
Perhaps the members of this forum should shower her with facts----- not 'facts'.
So I am not saying that she doesnt know and is not rude because I havent read or heard of her before but the facts above are true from all the research I have one over the years. I have been fighting this going on 10 years now.
Lyme is a difficult enough disease. It's hard to find a doctor (or family member or friend) who believes how sick some of us are, what labs tests are the most likely to give a true picture------ AND how the medical community denies us the treatments that may have a positive effect on our health.
We don't need more Dr. Orrange's out there. There are enough doctors who don't know enough about Lyme. It's pretty obvious that she gets paid by the article----- and the less time she has to spend researching that disease, the more her hourly rate increases. A quick glance at the CDC site is bad. The IDSA guidelines is even worse.
I also have to wonder ---if Dr. Orrange is so wrong about Lyme---- what about the other diseases she writes about so glibly? Does she do as little research on those diseases as she did on Lyme?
DS should re-think keeping Dr. Orrange on if DS wants to be known as a valid source of information.
http://www.dailystrength.org/health_blogs/dr-orrange/article/ginseng-improves-memory-in-young-adults
Here is the full journal article from which she extracted just a few items and from which she left out many others:
http://www.ncbi.nlm.nih.gov/pubmed/21154383
Some of the quotes from the pubmed article that raise a few warning signs:
"It is worth noting that these findings should be treated with a degree of caution."
"This work was supported by a grant from Naturex Inc."
[Naturex Inc. is the maker of Cereboost which is mentioned as the ginseng that was mentioned several times in the pubmed article. It's not often one sees such obvious marketing of a product on pubmed---- but it does happen.]
There may or may not be some benefit to American ginseng for cognition----- but it's very important that people who read anything about drugs or supplements be apprised of all the information.
A simple "Cereboost is manufactured by Naturex Inc. who paid for this research" would be sufficient.
Moving on and away from Dr. Orrange:
http://tinyurl.com/d56tllp
SAN DIEGOCardium Therapeutics (NYSE: CXM) will introduce Cerex, a plant-based dietary supplement for cognitive health, in the first quarter of 2011. Cerex will be part of the MedPodium lifestyle brand, and was developed to support cognitive functions including focus, memory and attention. The active ingredient in Cerex is CereBoost, a bio-available, powdered extract of American ginseng (Panax quinquefolius), standardized to 10 to 12 percent ginsenoside concentration, which was developed and clinically studied by Naturex.
Christopher J. Reinhard, Cardium's chairman and CEO, commented, "We plan to initially market Cerex to college students, working professionals and seniors who seek a safe and easy use dietary supplement intended to support cognitive function. In view of widespread press reports about the extensive off-label use of stimulant-based, addictive-prone ADD/ADHD drugs on college campuses throughout the United States, we believe that MedPodium's Cerex could offer a safe and natural alternative."
Knowing how college students might ignore the dosage recommended on an OTC supplement in order to cram for exams----- I'm not sure how safe it might be. If Cereboost isn't one of the companies being investigated the FDA, perhaps they'll be safe.
The AHP (American Herbal Pharmacopoeia) reports:
http://tinyurl.com/csjhywb
[...]contaminated American ginseng one of the most widely adulterated herbsavailable on the Western herb market.
"We have found leaf material marketed as root, exhausted marc being sold as crude root, and materials cut with 45-percent dicalcium phosphate,"
It's not rude if it's true. And your post describes what has happened to so many of us.
Lyme disease is a hard enough problem and good doctors are trying their best to find something that can help.
But having a doctor (!!!) spout that bunch of crap, for lack of another word, is adding insult to injury.
I'm glad you spoke up, Georgia, because if no one does, then innocent people will read what that 'doctor' said and believe it.
The saying among Lymies is---- 'you can't 'get it' until you get it' is true and it's too bad Dr. Orrange hasn't experienced it for herself (not that I'd wish this on anyone, even her). Her articles would change in a minute!