Irritated by conventional medicine's refusal to consider new treatments for Lyme

[tcmgpt13]

I am so sick of hearing that there is nothing available except prolonged antibiotic usage to "cure" Lyme disease. Have any of these doctors ever looked at the possibility that lyme and other chronic illnesses (cancer for one) may be controlled or cured with hyperbaric oxygen treatment? Or with ozone treatment? Other oxygen therapies? Oh, no, probably not, as that would mean less money for doctors I guess (more likely to have patients who never get well if just using antibiotics) and for drug companies. Might oxygen therapies help morgellons too? Would anyone even look at that? Oh, no, it is easier to use antibiotics then to think outside the box which seems to pass for Western medical care. No wonder Western medical care in the US is so expensive. To boot, now that antibiotics do not work as well as they once did due to their extensive overuse in every area imaginable, even to fattening cattle, well expensive antibiotics must be substituted. To the drug companies delight in pocketing yet more dollars. Pity the poor persons (like me) who are very allergic to antibiotics.

Do the majority of Western doctors ever consider that low body temperatures (below 98.2 during the day) might mean people are more suseptible to illnesses? That the body would have a hard time fighting off cancer cells if it is cold? That it is not normal to be somewhat too cold inside anymore than it is normal to run a low grade fever chronically? The chronic low grade fever is recognized as a symptom if it is only slightly high (99-99.2). Something to be treated. But the poor person who is somewhat too cold, well 98 or 97.8 is "normal," nothing indicating a disease state. Say what? If the body temperature goes up slightly and the person feels sick it is "disease" and is treated as such, but if it is chronically slightly low and the person feels terrible it is "normal," not a disease state. Huh?

The article here discusses lyme therapies, including antibiotics (but thankfully not limited to to that discussion), ending the discussion with how some alternative doctors make use of hyperbaric oxygen for lyme:

An Overview of Lyme Disease and Hyperbaric Oxygen Therapy

This next article discusses ozone therapy, and includes comments about lyme and some other chronic conditions:

Healing Chronic Illness at Home: Oxygen, Ozone, Sauna and Detoxification for Lyme Disease, Fibromyalgia, Chronic Fatigue Syndrome, and MCS

[ladycolorado]

yes i shall say tcmgpt13, this treatment option is superior to what i am getting. i can take the antibiotics, but it is tiring. the low body temp thing, yes this is me too. if look at the chronic lyme video in here i put up in this section for gumball, THIS shows how really sick we can be. i agree big pharma would love to have us even unable to self treat with anything so we would stay sick and have to run to the doctor and pay, pay, pay. (LC).

[ladycolorado]

Here is a link, TCM you might find interesting. I think this is why we have conventional medicine divided. Talks about the Lyme controversy while the sick sit on the sidelines and suffer: http://www.freewebs.com/teenswithlym...ontroversy.htm (LC)

[Kritters]

I SO share your irritation, TC!!!

Just today I was cussing them out big time (15 minutes ago, in fact) because my friend told me he was just watching the Discovery Channel and there was a girl on who had Lyme for 12 years and they never diagnosed it. She had all symptoms as we do and they found tons of parasites in her. She went through all the testing from inept doctors who couldn't find anything, took it upon herself to research and finally found a doctor who was able to help. I'm going to try to find out who that doctor is. It just boils my blood! All these people who are suffering and dying because of the ignorant medical/pharmaceutical industry refusing to get their heads out of their butts.

LC, one of the links you provided spoke of a rash that isn't necessarily bullseye, but a large one nonetheless. Well, that so reminded me of this HUGE rash I had last year on my left thigh that was actually a large purplish RASH I guess for lack of better description, and it was warm to the touch. I thought it was from keeping my laptop on my LAP and getting the constant heat. I did wonder why the right thigh didn't have one as well. In any case, they give the names of labs that do all the band testing and I'm going to contact them. Thanks for all your good information.

Kritts

[ladycolorado]

Does not have to be a bullseye rash to be Lyme mine wasn't. The borrelia was still in my blood . Many recall no tick bite, and many do not even have a rash. If look at the easy to read site today understand lots about Lyme diease and all the "myths" surrounding it. here is the link to read: http://www.freewebs.com/teenswithlym...nformation.htm . (LC).

[carla]

I agree with you too Tcm.It's all about lining their pockets .
This link is about a famous rugby star from the UK who died at the weekend but look at what his wife believes caused the illness that killed him.
Carla XXX
http://www.timesonline.co.uk/tol/spo...cle2903763.ece

[Bad_Boy]

Hi, TCM

Hope you don't mind my two cents (and since the current exchange rate now .60-someting Can vs. $1 US, those two cents are probably quite worthless ).

In addition to profit, maybe many MD's are also motivated by the path of least resistance (in other words, they don't keep up with literature or communicate with scientists conducting groundbreaking research).

Thought this quote may be appropriate here:

“I have been trying to point out that in our lives chance may have an astonishing influence and, if I may offer advice to the young laboratory worker, it would be this - never to neglect an extraordinary appearance or happening.”

Alexander Fleming

[Kritters]

Yeah, BB.....ya THINK? why is it we so know the deal and they are so going to be red faced.

So here's what I'm thinking. Lyme disease is a catch all answer to everything the med guys can't figure out.

But we will so rule and make them wish they put more time into actually trying to understand what makes people sick.

love ya,
Kritts

[ladycolorado]

Sometimes Lyme disease makes me think of Polio in the way it can delilitate maim and destroy. Thanks Carla for sharing this. Something I never have told anybody in here: My grandfather was a pharamacist, I never knew him with legs he was wheelchair bound. He died when I was 12 back in 1980. In his younger years He had His own pharmacy called Kilfoyl Drug in Santa Cruz, California. Years before I was born, he stubbed his toe on a box and it turned to gangreen. One toe, with his diabetes spread somehow to BOTH legs, they were removed up to mid-thigh. Before that, he ran in races and was very athletic. He even made the local newspaper for saving a man from drowning in the Pacific Ocean. In World War II, he was too old to be drafted, but was an air raid warden and would walk the streets shouting "Lights out!" as a signal to draw shut black curtains to make buildings less of a target in the event they were bed. He also because so many were fighting would travel to the other pharmacies to fill prescriptions, all the way up to San Francisco. Santa Cruz was once a mecca for old film stars to have a place to go on retreat, and Alfred Hitchcock was a regular patron Of Kilfoyl Drug, My mother as a child used to get annoyed as Hitchcock would pat her on the head in greeting. He may have bee in a wheelchair but was 6 ft tall to me. He was so funny, he used to always complain his foot was itching and poor man had no feet. He would tell us fun but scary stories of the one eyed red eyed wolf hiding under the bed. ( we LOVED spooky stories). He regularily had me sneak him an oatmeal cookie like I was in on a big conspiracy. (this was okay as he was a borderline diabetic). Sadly, even though he lived until eighty I watched the strokes take away more and more of his vitality from him. He was denied total disability after one bad stroke robbed him of using his right side blinded as well in that eye. No legs, he was denied total disability because he had vision in one eye and could use one arm. Good old government for you. Yeah he had one of those old push wheelchairs, try rolling that with one arm with a loss of depth perception. Truly with attacks of muscles failing before the antibiotics, and some falls I have had, was afraid I would share his fate before the antibiotics. With all the years my grandmother cared for him, died with 76 cents in her pocket the cost of all the doctors and medicine taking what little money she had on Social Security, then her own poor health. Thank god my mom cared for her, but Alzheimer's is rough and all the strokes she had made her a different person. "Nana" was not Nana anymore. Makes me sick how neglect can kill this athlete and nobody cares. How many have to have lives ruined, deaths occur (even in children) for pete's sake before SOMETHING is done? How many more to suffer with Lyme and the even harder to grasp Morgellons Disease? (LC)

[hilly]

We're certainly up against it... this is just appalling.. Milly ;<(

'Lyme Disease is hard to catch and easy to cure' !!! who's fooling who ?



The American Academy of Neurology Lyme Guidelines: Through the Looking Glass.

Raphael B. Stricker, M.D.*
Lorraine Johnson, J.D., M.B.A.*
*International Lyme and Associated Diseases Society
P.O. Box 341461, Bethesda, MD 20827-1461. www.ILADS.org

"It would be so nice if something made sense for a change."
-Alice, from Alice in Wonderland

Physicians who are caught up in the controversy over Lyme disease often feel like Alice in her famous adventure. The everyday reality of treating patients suffering from chronic Lyme disease differs markedly from the limited vista in the recently adopted guidelines of the American Academy of Neurology (AAN)1. The AAN guidelines mirror the guidelines of the Infectious Diseases Society of America (IDSA) published in November 20062. This is not surprising given that the AAN and IDSA guidelines committees featured overlapping panel members, including the chairs of both committees, thereby assuring that the form and substance of the two guidelines would be "like-minded." Both guidelines advance the view that Lyme disease is "hard to catch and easy to cure," and they clash with the more pragmatic evidence-based guidelines of the International Lyme and Associated Diseases Society (ILADS)3.

A major problem with both the AAN and IDSA guidelines is that they place severe restrictions on patient management by the treating physician. In fact, the IDSA guidelines are so restrictive in their approach to Lyme disease that the Connecticut Attorney General has launched a landmark investigation into the guidelines process to see whether restraint of trade laws were violated by the IDSA committee that formulated the guidelines4. In response to this challenge, three IDSA panel members (including the committee chair) helped craft the AAN mirror guidelines, and this work was presented to the medical community as an "independent corroboration" of the beleaguered IDSA formulation. The AAN guidelines were then endorsed by IDSA, presumably with the expectation that most physicians would not notice the interlocking panels or recognize repackaged guidelines.

Like the IDSA guidelines committee, the AAN panel members cite what they consider the "highest level of evidence" in characterizing chronic Lyme disease as a "post-infectious" syndrome and recommending only palliative care. For eradication of neuroborreliosis, the most serious form of the illness, the guidelines recommend a mere two weeks of antibiotic treatment. These statements are put forth despite numerous animal and human studies gleaned from more than 19,000 peer-reviewed publications showing persistent infection with the invasive and elusive Lyme spirochete, Borrelia burgdorferi, following standard short-course antibiotic therapy5-8. The guidelines ignore high-level evidence that neurologic Lyme disease is often not eradicated by such therapy, and they dismiss more recent high-level evidence that prolonged antibiotic treatment is effective in patients with chronic Lyme disease9-16. Furthermore, the "highest level of evidence" challenging long-term antibiotic therapy has itself been challenged recently due to the limited patient population that was examined and the poor generalizability of the studies that provided the evidence14-15. The application of internally valid high-quality trial results to inappropriate patient populations has recently been recognized as a major problem in guideline development17-18.

Responsible medical societies have an obligation to acknowledge the scientific uncertainty and lack of consensus that pervade the diagnosis and treatment of medical conditions such as tick-borne diseases5-7. Treatment options exist for Lyme disease, and according to medical ethics these options must be disclosed to patients under the doctrine of patient autonomy9. Medical society guidelines must adhere to rules of fairness and accuracy19. In the vortex of controversy surrounding Lyme disease, it is both unfair and inaccurate to present only half the evidence in a society's guidelines without acknowledging that there are currently two standards of care that have evolved in the diagnosis and treatment of tick-borne diseases9. For example, the American Academy of Pediatrics guidelines on developing guidelines state: "When the evidence is of low quality and the benefit-harm equilibrium is balanced, guideline developers generally should not constrain the clinician's discretion by making a recommendation but instead should designate acceptable alternatives as options." 20 Responsible guidelines advanced in the face of controversy and scientific uncertainty should allow for physician flexibility and discretion17-20.


The IDSA/AAN guidelines recall a similar problem in the late 1980s, when a small but influential group of scientists tried to convince the world that the complex illness known as AIDS was not caused by persistent infection with the formidable AIDS virus. In response, the medical community and the pharmaceutical industry rebuffed the "AIDS denialists" with an avalanche of data that confirmed the virulence of the virus. Now, two decades later, a small but influential group of "Lyme denialists" cling to the view that the complex illness known as chronic Lyme disease is not caused by persistent infection with the formidable Lyme spirochete, despite growing evidence that it is5-8. Lyme denialism limits medical treatment options for patients and suppresses critical research questions. When science is uncertain and evidence is equivocal, patients should be given a treatment choice, not denied care. Does this make sense? Go ask Alice

.Raphael B. Stricker, M.D.
450 Sutter Street, Suite 1504

San Francisco, CA 94108
Phone: (415) 399-1035
Fax: (415) 399-1057
E-mail: rstricker@usmamed.com