Camp Other wrote:Those few points:
1) I have no issue with someone pointing out that a doctor is practicing based on pseudoscience - especially as long as they provide scientific evidence that what they do is pseudoscience and how precisely it is pseudoscience.
Do you seriously
demand people to provide scientific evidence that, for example, salt & C
is based on pseudo-science? And against Klinghardt
(who has been a speaker at an ILADS conference
BTW) his anti-parasite CDs
? Or against all the questionable claims Burrascano was making at an "Integrative Approaches" conference
Just a few examples, of course I could go on and on and on.
No. Note the use of my word "especially" in the above sentence. It means I have a preference for someone providing evidence to back their claims.
Some of these treatments may be more obviously pseudoscientific than others, such as Klinghardt's nail polish idea.
But then there are other treatments which may be alternative which hold some validity which may help patients - either by providing comfort or by treating the problem directly.
Artemisinin is herbal and could help treat babesiosis as it treats malaria in parts of the world and antimalarials are typically used in clinical practice to treat babesiosis. Is this alternative medicine - or is it just medicine? That becomes part of the issue of making a claim to support a given treatment.
Camp Other wrote:2) I have no issue with someone pointing out that a doctor has done something harmful or engaged in unethical behavior and providing evidence that they have done something harmful or engaged in unethical behavior. I only warn any author of such discussions that they may wish to tread carefully about how they go about it because they can open themselves up to a charge of libel/defamation. Remember: An accusation is not the same thing as guilt.
Martian wrote:Yes, tread carefully is a good point. Note that the site owner may also potentially get into trouble...
Camp Other wrote:However, I've been here for a while and I'm already well acquainted with the issues you've brought up about pseudoscience and doctors who practice it - as have a number of active members who have been here a while.
It appears to me that you and a few others here don't realize the seriousness of the problems with so-called "llmds" and the ILADS. If I explain the problem with the label "llmd" you refute it.
Yes and no. It's really a mixed bag for me, honestly.
I think that some LLMDS (regardless of affiliation) are greedy and base their treatments on weaker claims than others, and by appearances do seem to take unfair advantage of patients. And some do not. Some are trying their best to help patients, don't want to take advantage of them, and only charge what's necessary in order to pay their bills and be able to live.
In case of the ILADS you don't want to judge the organisation as a whole, but people individually.
Again, yes and no. There are actions they've taken which I do not understand and do not support if they were an organizational decision.
For example, I don't like the fact that they have not produced new guidelines with more studies cited which support them. It's been years, and patients are still waiting when they said they would be presented at a conference... what, two years ago? Perhaps I'm wrong on the date, but that's a disappointment.
The same could be said, though, by me towards the IDSA. They are using guidelines published in 2006 which are almost an exact copy of those published in 2000, which were based on studies from the late 1980's and early 1990's in a number of cases. Even though an independent review panel made requests for changes in 2009 - changes which would help more people get diagnosed and treated earlier especially for coinfections - it's 2013 and these changes have not been updated. Doctors could have been applying these changes in clinical practice for the past 3 years instead of applying the old guidelines - if, in fact, they were even applying those and understood them.
So in this manner regarding guidelines, both organizations have been a disappointment.
I can also say that I am disappointed that ILADS have let untested alternative medicine creep into the guidelines they were using, and that would be true, too. That and heavy promotion of alternative medicine at their conferences, when there is so much research to be discussed and developed.
I do not understand why ILADS conferences do not present and discuss more of the research that is funded by organizations such as the LDA (US) and LRA since these are key support organizations for Lyme disease patients. Some of that research is directly applicable to the treatment of patients, including VGV-L.
I also wish that ILADS conducted more of its own research and applied for NIH grants. It would help in confirming some of their combination treatments for patients who are coinfected.
So it's not that I am not disappointed in some of what ILADS or LLMDs have done - I am. But look at it this way: If I already personally found that an LLMD confirmed what my family doctor should have confirmed and the LLMD treated me when the family doctor didn't, from my point of view that is a point in the LLMD's favor right there.
radicale has a valid point when he says that if doctors took care of infections early on, then patients would not turn to anyone else for treatment. In my situation, I set out to find a doctor who would treat Lyme disease that I already knew I had. That doctor happened to be labeled an LLMD. And my Lyme disease has been confirmed by other doctors outside of the LLMD, too.
Sometimes a case of Lyme disease really just is... a case of Lyme disease. So treat it. Had my family doctor treated it early, I may have not seen an LLMD.
In a broader sense, one thing LLMDs do is believe their patients are sick when they say they are sick and do not tell them it is in their heads and psychological. (Well, with the exception of those who are also psychiatrists who look at any relationship between infection and psychological symptoms - another area of controversy.) This is invaluable for many patients - particularly if they've been shuttled from 10 min appt to 10 min appt under managed care/HMOs with different doctors who never truly investigate the cause for their symptoms and do more thorough workups and rule outs.
If one has a good LLMD, they WILL look at non-tickborne disease causes for your symptoms and not write off everything as Lyme. That's what a good doctor does in general, and that's what my LLMD did, too. I had an issue with my thyroid which my family doctor overlooked and my LLMD tested for it and I received treatment for it. My levels improved, and so did my energy. There are other things which my LLMD found and things which were ruled out that my family doctor did not think to check - to the degree I fired that family doctor and sought out a new one.
Maybe some of us are just unlucky or lucky when it comes to finding doctors, whether one calls them LLMDs or not. I can only tell you in general what my experience has been.
If I say the ILADS should hold themselves to high standards you ask me to define high standards. It looks like you are sticking your head in the sand for these issues.
No, I ask for a definition for high standards - or even adequate standards - because it is important to know on which basis you are making a judgment.
Do you hold ILADS doctors or LLMDs in general to higher standards than you do other doctors? I think it's important to know, and know what they are and why.
See, I can accept adequate care from some doctors (podiatrists) but want excellent care from others (oncologists) if I need that kind of care. My benchmark is not the same for everyone, but obviously I don't want abysmal or suboptimal care from anyone.
The reality is that in the past 10 years Lymeland has gone in a downwards spiral and for a large part that is to blame for the ILADS (note the conferences getting more dubious each year) and so-called "llmds" on the one hand, and Lyme activists/patients on the other hand, who support or stay silent to the dubious practises, therefore enabling them. Nothing will get better as long as this all gets in the way, no matter how much you discuss "the science".
As I've said before on this forum, I am disappointed with both ILADS and IDSA. In some cases for the same reasons (such as lack of new guidelines as mentioned above) and in some cases for different reasons (LLMD has at least tried to help me and find reasonably safe ways to help w infection and comfort - IDSA has no suggestions for someone in my situation so far).
Neither of them have lived up to my expectations 100%, but the biggest loser here for me has been the American medical system overall, from a number of family doctors through to ERs and what I see is the blatant greed running rampant in hospitals and clinics nationwide about which David Brill has written.
This aside, the only way I think things are going to change in Lymeland is to start from scratch and have someone else not involved with the Lyme disease controversy to step in and examine the issues anew. We need new eyeballs on the issue, with researchers and doctors who are neither attached to ILADS nor directly attached to the IDSA - new people who are compassionate and want to do well by patients and have no ideological or financial stake in the controversy.
Those of us who are patients with persisting symptoms who either cannot or do not want to take more antibiotics may want to try some new treatment or enroll in a study for one, and this new group could be the ticket to breaking ground in Lyme disease research.
In the meantime, what do you suggest, Martian? Specific reforms from within ILADS, until this new group is made a reality? Do you think all LLMDs are engaging in dubious practices - or just that the ILADS conferences promote them?
Perhaps up for further discussion is this: How much do you think these practices are ones which are encouraged by patients and alternative medicine groups like FAIM? Or that it is simply a growing trend in medicine as a whole to integrate alternative medicine into ANY doctor's practice, LLMD or not? The folks over at the science-based medicine site would probably agree with me that it's a growing trend as a whole to integrate alternative medicine into any doctor's practice and they don't like it.
And how about specific reforms in the IDSA, too? Are they not shortchanging patients and ignoring the issues patients with persisting symptoms have?