So my mother really wants to know why Lyme disease is so controversial. I'm trying to explain it to her but I honestly dont have all the answers
She just thinks its nuts that something so debilitating and serious can be so overlooked and undiagnosed by so many doctors.
so someone explain. from the beginning why lyme disease is so controversial.
thank you very much Posted by lymegal23 (Member # 28573) on :
I am going to have my mother actually read your responses so if you could give really insightful answers I'd appreciate it!
Posted by sixgoofykids (Member # 11141) on :
In short, the guidelines are flawed because the board that wrote them was biased because of their financial interests in Lyme Disease. All of them were making money on Lyme in one way or another. There was actually an anti-trust investigation done on them and they had to rewrite the guidelines.
In the end, they did not rewrite them and so far the CT attorney general has not followed through in enforcing that they do (he just ran for US Senate, I guess he was "busy").
Posted by lymegal23 (Member # 28573) on :
^ Aw thanks keebler
my mother is totally supportive of ILADS and shes mad at the CDCDand all the stupid doctors who follow their protocol. she thinks its DEAD WRONG. however she just doesnt understand how it all got that way.
Thank you I will be looking forward to your links
Posted by onbam (Member # 23758) on :
The Baker's Dozen & the Lunatic Fringe: Has Junk Science Shifted the Lyme Disease -
Posted by bigstan (Member # 11699) on :
One main reason why lyme is so controversial is because the doctors don't agree on how lyme should be treated. The mainstream doctors believe that lyme takes about one to two months to treat and if you still have symptoms of lyme, you don't actually have lyme anymore it must be some other disease or it is all in your head.
The select few doctors, normally LLMDs (Lyme Literate Medical Doctors), believes that it takes at least six months to treat lyme and if you still have symptoms then the lyme is being difficult to treat or a unknown coinfection is not being treated, or a hormone problem has not yet been taken care.
Another reason it is so controversial is the diagnosis part. Your average doctor believes that tests such as the ELISA is accurate enough to diagnose whether you have it or not.
If they do end up having you get the western blot test (the most accurate), they want five bands positive to diagnose lyme disease which I think is FDA approved.
LLMDs, for the most part, believe that lyme disease should be clinically diagnosed. They do use the western blot test and believe that it take about two bands to have lyme, but if you don't get two bands positive it doesn't mean you don't have lyme.
They do not believe in using tests like ELISA, because they are only about 25% accurate. For these two reasons, LLMDs are hard to find because they get bashed for they methods.
HERE IS A BETTER EXPLANATION:
LD is frequently misdiagnosed. Physicians frequently overlook cases of Lyme disease simply because they don't know the complex pathogenesis of the disease. They don't understand that Lyme disease causes well over 100 different symptoms; the common arthralgia (the medical term for joint pain) is a LD symptom that most physicians are familiar with; however, it is only one of many symptoms caused by Lyme disease.
The clinical presentation of Lyme disease can be very subtle and complex. Most doctors don't know that laboratory tests are often useless and misleading. Results are frequently negative or inconclusive in individuals with borreliosis.
The technology we have to deal with borrelia species is in need of significant improvement. The isolation and identification of borrelia is rarely successful; and no clinical laboratory test exists that can definitively diagnose Lyme disease.
This is why a diagnosis of Lyme disease is heavily based upon clinical information such as history, symptoms, and response to therapy. There is an art to medicine when dealing with Lyme disease. Lyme experienced physicians must use keen clinical skills and judgment when dealing with suspect Lyme disease patients.
They thoroughly evaluate the patient's history and symptoms when seeking a diagnosis and are able to recognize even the subtle symptoms of complex Lyme cases.
Most physicians don't recognize the symptoms of chronic Lyme disease and will rely solely on laboratory tests to confirm a diagnosis. Frequently these lab tests are negative and mislead the physician and patient to search for another cause.
Most MDs don't know that borrelia produce a large variety of toxic bacterial lipoproteins (BLPs) and they aren't familiar with the way these BLPs cause disease.
Lyme disease specialists must use very keen clinical judgment when diagnosing cases of Lyme disease. In defense of the ignorant physicians, much blame can rest on health officials and the medical establishments that are not giving clinicians the appropriate information they need to diagnosis these difficult cases of Lyme disease.
The criteria being used to report Lyme disease by physicians is often set by state health officials and is often based upon the rigid criteria established by the Center for Disease Control and Prevention (CDC).
This CDC criteria was established for an epidemiological survey, which was designed to study the distribution of Lyme disease. The two-step method of the CDC uses a screening immunoassay for all patients followed by a more sensitive and specific Western blot only if the screening test was positive.
Unfortunately, this approach was originally intended for surveillance of Lyme disease in potentially asymptomatic patients, not for diagnostic purposes in patients with symptoms that are potentially related to Lyme disease.
This criteria was not intended to be used as a standard for the clinical diagnosis of Lyme disease; the CDC has clearly stated this. Unfortunately, ignorant health officials and physicians continue to use these criteria for the clinical diagnosis of Lyme disease.
Posted by Keebler (Member # 12673) on :
- And, even aside from lyme we must take a look at how most doctors think of patients. It's not a pretty picture. Most want only one or two easy symptoms.
Even the doctor who proved that a bacteria causes ulcers was harassed horribly by other doctors for many years.
Doctors are not really trained to think outside of the box. That's a problem.
Insurance companies do not want to reimburse for time and effort for those doctors who do want to spend more time exploring and helping those with complicated cases.
Machines cost billions of dollars. That is where most of the medical money goes, not into the time spent using one's intellect to help patients.
Partly due to the "miracle drugs" and partly due to imaging tools where what's wrong can often be seen in black and white - or bright colors - it's the faulty thinking that we should be able to see from a fancy X-ray or a fancy lab test everything that is wrong.
Thinking that anything that is wrong has a clear and simple test, clear and quick photo record of sorts - and a miracle drug to cure it in a few day. If it does not fit, then the patient is to blame.
So, attitude and ego are huge players.
I also think that many doctors' brains have been damaged by their lack of sleep and high pressure during medical school, internships and residencies. Seriously. I think they get brain damage and only a few can heal from that to become good doctors who can take a step back and look at all the variables.
I don't think anyone has considered the damage that happens to many good souls while they go through medical training. The training is abusive to the body and to the brain. For some, they go on to become abusers - and there just may be a certain number of people who happen to become doctors who have an abusive temperament.
For some reason, and this is just my own perception after years of being tossed around in a state that will allow no doctor to openly treat chronic lyme, those vocal anti-lyme IDSA voices tend to have an abusive intent. They ignore all the solid research that ILADS has provided and they remain intent on dismissing very sick lyme patients. It's a unique and disturbing pattern of abuse.
It's their comfort zone to have the old stand by tools and when they don't work they are lost at sea. The field of medicine has become more stunted by its false sense of security on tests that simply can't match the "brilliant nature" of borrelia.
It can take years to learn about lyme and all that goes with it. And it's an emerging study. We are far from knowing all there is to know. And most doctors just cannot "go there" - most do not have the time or energy but, in my experience, it seems that most would rather blame the patient. It's their nature. It's what they are taught in medical school. -
[ 12-04-2010, 04:47 PM: Message edited by: Keebler ]
Posted by lymegal23 (Member # 28573) on :
I want to watch under our skin free online. the whole movie. where can i find that?
Posted by Keebler (Member # 12673) on :
- UOS is not available for free viewing on line due to copyright protection. Those who produced this excellent documentary went a couple of years with no pay and they had to cover all the bills for production and post production.
You may see if your local area support groups have a copy to loan. It is in the inter-library loan system for the whole U.S.
Some video outlets rent the DVD.
Next May, it will be shown on PBS and available through more outlets.
If you want to really trace back to how it started, start with Langhoff's work. -
Posted by sixgoofykids (Member # 11141) on :
Moving to general support
Posted by Shahbah (Member # 28735) on :
I think there another major reason for why it is so controversial: can you imagine if the whole world knew that MS, LUPUS, ALS could be treated and eventually cured with antibiotics?!!!! Do you think people who make billions from copaxone and other immune suppressant drugs would like it?!!! I don't think so... so the lobbies are working very hard on keeping lyme diagnosis under very strict control, there is just too much money involved... Just check the map of the regions in the world mostly affected by lyme and those affected with MS, and the others... it would almost be a carbone copy...
Posted by Lymetoo (Member # 743) on :
You may also want to purchase a copy of Polly Murray's Widening Circle.
Posted by Keebler (Member # 12673) on :
- Shahbah's post is so very true that it's chilling, indeed. -
Posted by Robin123 (Member # 9197) on :
I kinda agree with Shahbah too - all these medical entities get to make so much money off of all our various symptom presentations. And I'm not just talking doctors, but also physical therapy, chiropractic, body work, psychology, drugs, etc.
If it were known what we really have, we wouldn't go doctor/medical shopping and try everything under the sun and everyone wouldn't get paid.
Plus whole organizations would have to face up to what the problem might really be, and that could put them out of business. Think about it.
Posted by BHealthyNow (Member # 22537) on :
I really recommend reading CURE UNKNOWN by Weintraub and getting your hands on Under our Skin. I had my family watch, and that really made a huge difference in their understanding.
Posted by Paul Mall (Member # 27581) on :
Shabah is exactly right.
there is more money to be made treating the diseases that have no cure.
all this is explained in detail in under the eightball which is available on DVD now
I was just thinking about a person I saw speak in Sacramento, CA awhile back.
She said that long term abx helped her to get her health back and that if she were to get lyme today she most likely would still be sick due to all the controversary surrounding it.
I know this doesn't answer the question and not able to read what others wrote.
Posted by Keebler (Member # 12673) on :
- Direct link to the site for Under the Eightball: ---------------------
3:00 trailer, links to learn more -
Posted by Fuel1212 (Member # 29312) on :
It is controversial because of 2 things:
1 Insurance companies know this is a lifetime illness for the most part. Who would want to financially support these individuals?
2. If the truth were known, we would find out that this was a man made disease (Plum Island) If the word got out the law suits and revolutions would begin. Most people probably have never even heard of Plum Island have you?
Just my 2cents
Posted by emla999/Lyme (Member # 12606) on :
Personally, I don't believe that money is the sole reason as to why chronic Lyme Disease is so controversial. I believe that in part, the controversy has to do with ideology.
Ideology can cause a person to support some data over other data even if the data that they support is incorrect. And a person's ideology can result in facts being ignored.
For example, if your entire life's work has been devoted to fibromyalgia or chronic fatigue syndrome being a "psychosomatic syndrome" then you are probably not going to like reading data that claims that fibromyalgia and chronic fatigue syndrome are actually caused by a chronic infection or a toxin because that data doesn't fit with your ideology.
And if your entire life's work has been devoted to "bad" genetics being the sole cause of MS or Autism then you are probably not going to like reading data that claims that MS or Autism can be caused by a chronic infection or a toxin because that data doesn't fit with your ideology.
But I also agree with Shahbah's statement.
There is probably much more money to be made by treating the symptoms of Fibromyalgia, Chronic Fatigue Syndrome, heart disease, arthritis, ALS, MS, Alzheimer's, Lupus and etc. than there is in curing the CAUSE of those health conditions.
And I would willing to bet that undiagnosed chronic infections, pathogens, parasites and toxins play a big role in the development of those ailments.
Posted by migs (Member # 16496) on :
More simple to grasp are the factors of ego and pride.
Most (but not all) Infectious Disease doctors follow what they are told by the IDSA, either by trust or the fact that they could lose their livelihood. The group of docs who manage the Lyme file at the IDSA are a small group of people who are not Infectious Disease doctors and some not even medical doctors at all. What they do have is clout and all the contacts that come with the old school and the fact that nobody will ever remove them from their post.
Now the IDSA has stated publicly many times on record that they know about Lyme Disease and these doctors on ground level are wrong and the patients are wrong as well. As doctors spoke against them and patients spoke publicly against them and they read so many articles over the years of how they are incompetent and even criminal, they dug their heels in even further. Hate as well as ego fuels the disagreement for the most part.
Read the science published by the IDSA on Lyme Disease and it has less science than my biology reports in grade 11. They cite themselves as sources and re-release the same generalized information over and over and over. On the other hand, all the current science out of Europe or in the States is completely and purposely ignored.
This will not change anytime soon. Don't expect the IDSA to publicly state "Sorry everyone. We dropped the ball on this one but understand that our reputations and egos were greatly damaged and we got a little bit snakey for a few years. Those with family members who have committed suicide or died from heart arrythmias are free to contact our legal team online. Thank you and good luck."
All of these LLMDs and LLNDs selling snake oil in the form of expensive supplements, detoxification agents and biofilm busters don't help either. They really offend the good doctors in the medical community and give ammunition to the argument that Lyme is overhyped. Some LLMDs prey on our desperation and smear the LLMDs that are noble professionals who are extremely brave and risk their careers to fight for their patients.
Posted by deerose (Member # 27484) on :
A complex and diverse mix of ego, pride, power, ignorance, intimidation, bias,and greed in human nature and systems trumping facts, truth and compassion.
We can know that with our heads but can be hard to really really accept that level of involved and broadscale evil, like it is for lymegals mother.
It dawns suddenly or slowly but there it is.
It is not about logic and truth ma'am. It is about distortions in human nature. Individual and corporate.
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