...I wanted to point out that mailing lists and in-person support groups tend to have less of this element and some lists and groups have an almost reflexive response to tell those selling supplements and odd treatments to kindly dump their spiel or leave the forum ....
No. As a support group leader for a decade, I found that purveyors of questionable stuff were quite aggressive to get involved in the group to rope in the desperate. This became worse later on when people started realizing that major bucks could be harvested from Lyme patients. I'm not talking about simple massage or supplements in general either. These people came there to MARKET their strange wares or have patients do it, cheer it on. And I personally was solicited to help get patients for a number of dubious practices. I got sick of what was developing and left.
I think it depends on which groups you are involved with and which mailing lists you are on. Certainly some groups DO have aggressive marketers showing up shilling their wares or patients try to do so on their behalf. Understand too that my sample size is limited in terms of any in-person support groups which I have attended (which I haven't in a long time now, primarily because I think I've learned as much as I can from them and think more research is key - otherwise we will continue to be stuck in the same place).
Mailing lists can vary highly, and if you are on, say, certain mailing lists which are about chronic illness in general or immune disorders and Lyme disease patients are a subset of the patients there, it seems like those lists are more willing to vet people and warn people if they try to promote a product that has no evidence to support it (especially if it's a hard sell) compared to some of the Lyme disease support lists which are chronic Lyme disease patients only.
I think chronic Lyme disease mailing lists tend to accept more alternative unproven treatments because that IS all there is and it fills a void because other than antibiotics (and antimalarials for Babesia) there is no other recommended treatment.
It's an act of desperation to try alternative treatments. I sympathize with anyone in that position, having been desperate myself. At the same time, some alternative treatments aren't worth the effort of trying and are a waste of money if not likely to make you sicker or worse.
I think that if other safe and effective treatments were to be studied and supported, more patients would be willing to try them instead of the unproven treatments. This is one reason why I think a study on the use of low dose naltrexone for chronic Lyme disease patients should be conducted - the drug itself has a good track record of little risk of side effects, and at the dosage naltrexone has been given to fibromyalgia patients at Stanford, the risk would be even lower. Naltrexone has been around for ages. But no one has done this study for chronic Lyme patients yet - quite possibly because there isn't money in it; there's no new patent involved.
One of my frustrations regarding ILADS is that they could probably conduct a low dose naltrexone study in conjunction with a university right now
, but it hasn't happened... and yet quite a number of chronic Lyme disease patients have been prescribed it off-label and have reported improvement while taking it.
Sounds great - but let's try it with patients who are also not on a ton of supplements, herbs, and pain meds (you can't even try it while on opiate pain meds and have to completely get them out of your system first anyway) to remove confounding variables.
As for people being 'well-informed' and making smart choices, here is a prime example of a well-educated person--a doctor--doing a scam treatment and what happened to him: http://www.lymeneteurope.org/forum/view ... 1284#p8841
...People can't make decisions based on what someone considers the best for them. Did the doctor
who died actually see all sides to this picture when he made a decision, or was he actively recruited on the internet because the controversies were made difficult to find?...
Yes, LymeLand is well tilled, tended and harvested.
Someone like Bachnysky is a serious problem. He killed people. He was negligent. He was irresponsible with people's lives.
ICHT is a dangerous treatment, and I could see how dangerous it was as soon as I read about it and knew what it was. No one should be doing it. Far as I know, no one is offering it any more and if that is correct, it should stay that way.
I put someone like Bachnysky in a class all of his own of someone using an alternative treatment because it is so dangerous, because he killed people, and because he is a criminal who scammed a lot of people.
I can't say the same thing about every doctor who suggests and/or uses alternative medicine to their patients. There are levels and degrees of things being problematic and risky; I don't think taking artemisinin or a few Chinese herbs now and then or getting acupuncture or massage is anywhere near as problematic as the fraud and harm Bachnysky caused.
About the worst most people can say of most TCM practitioners and massage therapists is it didn't do anything for them. Some would argue patients experienced a placebo effect, some would argue some TCM/acupuncture works on a narrow set of conditions, and some think the evidence is thus far inconclusive but it will eventually be clearer if it works and when. (I've seen the "What's the Harm" website for TCM and acupuncture, and while they are not risk free (is anything?) the risks are relatively small. We might as well not get in the car today because our odds of being in a serious accident are higher.)
Camp Other wrote:...I am aware that LN-USA readers (at least some of them) probably view LNE's forum as being one which censors alternative treatment discussion but does not censor anything negative about doctors ...
Where's the censorship here? This place is tough for the craptitioners because they get called on the carpet. One can't sell his bunk easily here although people do try from time to time.
Homo homini lupus
I didn't say there IS censorship here - reread what I said above. I said it's more like a majority of members here find the claims of those pushing alternative treatments to be dubious.
And Homo homini lupus
? That is true, man does prey on man. But man also is sacred to man, and one hopes that those who are skilled and caring doctors and healers of all kinds will be there to help patients. Homo sacra res homini
I could see that skill and caring was evident in the many doctors, surgeons, and nurses who helped those wounded from the Boston Marathon bombing.