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shawnsmith
Czech Republic
2048 Posts |
 Posted - 07/11/2015 : 01:22:32
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Fredericton Lyme disease support group wants better testing
http://www.cbc.ca/news/canada/new-brunswick/fredericton-lyme-disease-support-group-wants-better-testing-1.3147370
Excerpt:
Pitre says she received a diagnosis for Lyme disease from a lab in California. She says she experiences crippling joint pain, shakes and numbness, temporary paralysis in her face, slurred speech, and has difficulty communicating. She didn't seek diagnosis in the US until after multiple MRIs, CT scans and blood screenings in New Brunswick.
"They run all of these tests, they come up negative and say that's it, there's nothing wrong with you," said Pitre. |
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shawnsmith
Czech Republic
2048 Posts |
Posted - 07/11/2015 : 01:24:12
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| Lyme disease is real folks. Get tested as soon as possible if you have unexplained pain. |
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tennis tom
USA
4746 Posts |
Posted - 07/11/2015 : 11:39:57
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I would do a "SEARCH" using "TMS and lymes" before running to the ER, do some TMS reading up on it. Don't let it spoil your weekend, you can probably wait 'til Monday to get some lab tests done.
Lot's of docs, when they can't find an allpathic dx for chronic pain, hang things like "lymes", "cfs" and "fibro" on it. Although there may be some real lymes, it could also be TMS in disguise. Do your research and look at all the evidence before getting too wigged out. If you look at the histories of chronic fatigue and fibro, they are "new age" inventions. |
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andy64tms
USA
589 Posts |
Posted - 07/13/2015 : 10:42:43
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Thank you Shawn,
I have a friend that had Lyme disease, for three years doctors thought it was MS before a clinic in Switzerland finally diagnosed Lyme disease correctly. His immune system is considered erratic and he has to have Immunoglobulin IVs and other therapies for the antibody deficiencies that he now has. During his illness he went through most of the symptoms of Lyme including loss of memory.
In addition he lost his family, (his unloving wife left him with their daughter). He is financially ruined due to three years of medical treatments all over Europe to save his life. How different his life would have been with the correct diagnoses and a simple course of antibiotics.
Unfortunately Lyme disease diagnoses is sometimes based on physical symptoms, a rash or the tell tale red ring around the bite. My friend was one of those with no signs of a bite, his symptoms appeared from nowhere. For him it was a very real medical issue that nearly ruined his life.
In my book I consider tick, spider, snake bites and bee stings in the same category, not to be confused with TMS issues.
Andy
Past TMS Experience in 2000, with success.
Charlie Horse on neck for 20 years, is almost gone.
Books:
Healing Back Pain
Unlearn your Pain
The Great Pain Deception |
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filipe
Portugal
280 Posts |
Posted - 07/14/2015 : 05:24:03
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For me personaly, from what I read, and came to understand, lyme is TMS... Drs want to avoid the psychossomativ explanation for pain, at any cost. So they keep coming up, with new ideas. The result? You do all kind of exams, but you still got no answer... then, they tell you it might be genetic... so you are cursed, by your own genes... you feel guilty, and therefore more sick... I hate them for lying to us....
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Edited by - filipe on 07/14/2015 05:30:39 |
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marytabby
USA
545 Posts |
Posted - 07/19/2015 : 14:43:01
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| I think too many doctors jump on the lime disease label for so many fibromyalgia type cases. However the part about Andy's friend that concerned me is that someone would have memory loss. That, I don't THINK is TMS, unless it is a form of TMS that coincides with depression and anxiety so therefore mental illness type symptom imperative. |
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Scottydog
United Kingdom
330 Posts |
Posted - 08/25/2015 : 01:40:41
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| Hmmm, he was married to someone who has a pretty extreme selfish streak. A perfect cause for suppressed anger leading to TMS imo. |
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tennis tom
USA
4746 Posts |
Posted - 08/25/2015 : 09:04:26
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Shawn do you have Lymes, or are you just trolling? You can come up with articles that support all the dis-eases that have a TMS equivalent. Maybe you're forgetting, this is the TMS board. No one comes here first, this is their last stop from chronic pain after having been dx'ed with all the allopathic dx's that haven't helped them.
Have you looked at the Rahe-Holmes list for the sources of your TMS unconscious anger?
==================================================
TAKE THE HOLMES-RAHE STRESS TEST
http://en.wikipedia.org/wiki/Holmes_and_Rahe_stress_scale
Some of my favorite excerpts from _THE DIVIDED MIND_ :
http://www.tmshelp.com/forum/topic.asp?TOPIC_ID=2605
==================================================
"It is no measure of health to be well adjusted to a profoundly sick society." Jiddu Krishnamurti
"Pain is inevitable; suffering is optional." Author Unknown
“You can discover more about a person in an hour of play than in a year of conversation” – Plato
"Happy People Are Happy Putters." Frank Nobilo, Golf Analyst
"Be careful about reading health books. You may die of a misprint." Mark Twain and Balto
"The hot-dog is the noblest of dogs; it feeds the hand that bites it." Dr. Laurence Johnston Peter
"...the human emotional system was not designed to endure the mental rigors of a tennis match." Dr. Allen Fox
"Where ignorance is bliss, 'tis folly to be wise" - Thomas Gray
"All my friends in Los Angeles are the sensitive type. They all have like all the diseases like Chronic Fatigue, Epstien Barr, Fibromyalgia. Like all the diseases where the only symptoms seem to be you had a really crappy childhood and at the prospect of full time work ya feel kinda achy and tired."
Posted by Skizzik @ TMSHelp from comedian Maria Bamford
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"If it ends with "itis" or "algia" or "syndrome" and doctors can't figure out what causes it, then it might be TMS." Dave the Mod
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TMS PRACTITIONERS:
John Sarno, MD
400 E 34th St, New York, NY 10016
(212) 263-6035
Dr. Sarno is now retired, if you call this number you will be referred to his associate Dr. Rashbaum.
"...there are so many things little and big that are tms, I wouldn't have time to write about all of them": Told to icelikeaninja by Dr. Sarno
Here's the TMS practitioners list from the TMS Help Forum:
http://www.tmshelp.com/links.htm
Here's a list of TMS practitioners from the TMS Wiki:
http://tmswiki.org/ppd/Find_a_TMS_Doctor_or_Therapist
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balto
839 Posts |
Posted - 08/26/2015 : 21:04:43
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quote:
Originally posted by shawnsmith
Lyme disease is real folks. Get tested as soon as possible if you have unexplained pain.
Predator Doctors Take Advantage of Patients With ‘Chronic Lyme’ Scam
‘Chronic Lyme disease’ is a highly debated topic, one with no scientific support. But that doesn’t stop Lyme truthers and the docs who take advantage of them.
With the possible time-limited exceptions of occasional outbreaks of various infectious diseases, nothing inspires quite so much anxiety as Lyme disease.
Caused by the bacterium Borrelia burgdorferi, the illness is transmitted by the bite of an infected tick. Practicing as a pediatrician in a part of the country where the disease is endemic, I’ve treated a fair share of patients for it. Most have been straightforward cases where the child came in with the characteristic rash. A few have been more complicated and have presented in later stages, including arthritis and meningitis, which required more extensive testing and longer treatment. But in all cases, the appropriate course of antibiotics has been curative.
Yet there’s something about Lyme that makes some parents fear even the possibility of their child being infected, despite there being effective treatment regimens. I have faced demands that children be put on weeks of antibiotics (the treatment for more advanced stages of the disease) after merely being bitten by a tick, in the off chance that it was carrying the disease. The one time I acquiesced to being thusly mau-maued is one of a handful of clinical decisions that make me truly angry with myself in retrospect. The problem of antibiotic resistance is too serious to be doling them out without good reason, and I’m resolved not to do so again. In a similar vein, Lyme is brought up again and again when parents bring in their kids for any number of vague complaints, typically some combination of malaise or fatigue. In almost none of these circumstances does Lyme disease seem likely, but everyone wants testing done anyhow. The results are almost always negative, and when they are equivocal it rarely is an indication of actual illness.
Undergirding all of this is fear of chronic Lyme disease, which the National Institute of Health describes as a condition often “used to describe illness in patients who have no evidence of a current or past infection with B. burgdorferi.” Though some patients experience lingering symptoms that can last weeks after proper treatment (also known as Post-treatment Lyme Disease Syndrome), attributing these complaints to chronic infection and prescribing multiple courses of antibiotics lacks a sound basis in science. As the CDC echoes, 10 to 20 percent of Lyme sufferers experience “fatigue, pain, or joint or muscle aches [after regular treatment]. Although often called ‘chronic Lyme disease,’ this condition is properly known as ‘Post-treatment Lyme Disease Syndrome’ (PTLDS).”
What is for certain is that Lyme disease activists are a passionate bunch. Some time ago, I wrote a blog post in which I had the temerity to question the validity of chronic Lyme diagnoses. For doing so, I was likened in comments to Josef Mengele, a comparison that warmed the cockles of my gay, half-Jewish heart. Earlier this week a group of activists planned a protest outside the headquarters of The New York Times, decrying what they believe to be a lack of media coverage about the illness. Unless I missed the article despite keeping my eyes peeled for it, this action failed to catch the Gray Lady’s attention.
Like all medical conspiracy theories, the notion that the Centers for Disease Control, the Infectious Diseases Society of America [IDSA] and other scientific bodies are colluding to cover up the existence of an insidious illness is a bafflement to me. In 2010, the IDSA held a special review panel to discuss the best way to treat lyme disease. Their report concluded the following:
“‘This was truly an extraordinary review process,” said Carol J. Baker, MD, who chaired the Review Panel and is a pediatric infectious diseases specialist at Baylor College of Medicine, Houston. “The final report includes more than 1000 citations, and after thoughtfully and carefully reviewing myriad materials, the panelists feel confident that advice to physicians treating Lyme disease should remain the same as set forth in the 2006 Lyme disease guidelines.”
The Review Panel concurred that all of the recommendations from the 2006 guidelines are medically and scientifically justified in light of the evidence and information provided, including the recommendations that are most contentious: that there is no convincing evidence for the existence of chronic Lyme infection; and that long-term antibiotic treatment of “chronic Lyme disease” is unproven and unwarranted. Inappropriate use of antibiotics (especially given intravenously) has been shown to lead to deadly blood infections, serious drug reactions and C. difficile diarrhea, as well as the creation of antibiotic-resistant bacteria or “superbugs.”
As noted in the Review Panel report, “in the case of Lyme disease, there has yet to be a single high quality clinical study that demonstrates comparable benefit to prolonging antibiotic therapy beyond one month.” The report also noted that “the inherent risks of long-term antibiotic therapy were not justified by clinical benefit.”
It’s hard to imagine infectious diseases specialists are somehow lining their pockets by denying the need to treat patients over and over. However, the story of how Lyme disease first came to be understood offers clues to why the controversy persists.
“It is a perfect story for hysteria and conspiracy if you look at the history,” Dr. Saul Hymes, director of the Pediatric Lyme and Tick-Borne Diseases Center at Stony Brook Children’s Hospital, told The Daily Beast. “The disease was first recognized as an unknown clinical syndrome that many in medicine initially poo-poo’d and didn’t think was a ‘real thing.’ Then when the medical establishment did recognize it, there was not a known cause nor a clear treatment. It took time to identify the bacteria, the proper treatment course, diagnosis, etc. Just like with the early HIV epidemic, all that time a vocal minority was feeling ignored or under-recognized, and they were scared.”
“The problem is,” Dr. Hymes continued, “we now know much more about the disease and how to diagnose and treat it, and the activists around it haven’t caught up with that.”
According to Dr. Paul G. Auwaerter, clinical director of the Division of Infectious Diseases and the Sherrilyn and Ken Fisher Professor of Medicine at Johns Hopkins University School of Medicine, proponents of the chronic Lyme disease diagnosis have created an appearance of ersatz legitimacy for themselves despite the evidence being thin.
“Those who advocate as physicians for chronic Lyme disease have established a reasonable but poorly evidence-based paper trail in journals to support their point of view, offer CME [Continuing Medical Education] programs, and host national meetings,” wrote Dr. Auwaerter on behalf of the IDSA. “This lends the veneer of credibility.”
Both Drs. Hymes and Auwaerter offer sympathetic opinions of patients who have been diagnosed with chronic Lyme, many of whom are genuinely suffering from some other malady falsely assigned that diagnosis, including rheumatologic, allergic, neurologic, or psychiatric illnesses. Taking these symptoms seriously and having an attentive approach to those who come in for concerns about Lyme may help uncover what’s actually wrong.
“I have a less charitable view of the so-called ‘Lyme literate medical physicians’ who diagnose patients with tick-borne illness and treat them long-term,” wrote Dr. Auwaerter. “These physicians are in private practices and often do not accept insurance and charge substantial sums for care and purchase of supplies from their offices.”
“I think a lot of the docs out there who claim to be ‘Lyme specialists’ unfortunately do not have the training or knowledge necessary to back up those claims,” said Dr. Hymes about these physicians. “Hanging out a shingle, taking a course run by a Lyme-related organization, and calling yourself a ‘Lyme-literate doctor’ right out of an internal medicine or pediatrics residency does not mean anything from a certification and quality standpoint, and certainly does not make someone a specialist.”
“Most concerning,” he went on, “is that some of these docs have had cases brought against them by medical boards because of their use of inappropriate therapies and methods, which have resulted in measurable harm to patients. I have personally cared for patients where a real diagnosis was missed because a ‘Lyme-literate doctor’ was so fixated on chronic Lyme they failed to diagnose lupus or another real, treatable inflammatory condition.”
Dr. Auwaerter offered a similar story of a patient whose parents had spent tens of thousands of dollars on supposed Lyme treatment, only to respond promptly when her anxiety disorder was properly diagnosed and managed. While he does credit thinly-qualified Lyme specialists for spending a lot of time with patients, which in and of itself may confer some benefit, that doesn’t change the poor outcomes that lengthy antibiotic or other unfounded remedies can cause.
For physicians who feel pressured to see more patients faster every day, it can be a challenge to attend as closely as we should to those whose complaints take more time to unravel. When we fail to do so, some will turn elsewhere both for the attention and the comfort of a definitive diagnosis. Perceptions that their concerns were not taken seriously can feed into the acrimony that defines the chronic Lyme debate as it currently stands.
Medicine isn’t perfect, as evidenced by the genuine missteps that characterized the early understanding of Lyme disease. Though newer tests can reliably rule it out, a quick, accurate test to differentiate old vs. new infections still isn’t available. Dr. Hymes cites this and other areas of research as a better use of the resources than ongoing protests, and laments the enmity that seems to exist on both sides. Having such resources at my own disposal would be an incredible boon, and would allow both for reassurance and for helping direct attention toward other causes for the complaints that bring patients to my office.
With the CDC reporting 300,000 cases of Lyme disease annually, it is important that providers in endemic areas know how to recognize and treat it in its various forms. But it remains a curable illness, and one that does not require course after course of antibiotics. Angry activists may disagree, but treating suffering patients with medications for a condition they don’t have does nothing to profit anybody but the ones who have built a career out of doing so.
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tennis tom
USA
4746 Posts |
Posted - 08/27/2015 : 09:13:25
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| Ya, SS, that's where I get my medical news--Network TV. Maybe the story was done by Brian Williams or Dan Rather. |
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andy64tms
USA
589 Posts |
Posted - 08/27/2015 : 18:07:09
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I like to keep my TMS very simple and agree Lyme is a real disease. It’s quite clear to me that if you have unexplained symptoms:
1. Get a blood test for Lyme
2. Get a course of antibiotics
3. Get better
4. Get back to more pressing TMS concerns
This comes under the heading “Rule out the physical” that Dr. Sarno suggested.
If my friend did not have TMS issues before he contracted Lyme disease – He sure has them now!
Hi Balto thanks for the post…
Andy
Past TMS Experience in 2000, with success.
Charlie Horse on neck for 20 years, is almost gone.
Books:
Healing Back Pain
Unlearn your Pain
The Great Pain Deception |
Edited by - andy64tms on 08/27/2015 18:13:50 |
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Lyme Disease
