I am a Lyme sufferer who was active on Lymenet for about two
years: after that, my treatment was pretty successful (I am doing
homeopaathy) and I am
now in a PhD program at Rutgers in Information &
Communication. I am focusing primarily on libraries (I am a
researcher & librarian) but have a very strong secondary focus on
alternative health communities. I've written a couple of papers on
Lymenet and the critically important role patient-run online
communities play as opponents of, and alternatives to,
mainstream medicine. I am now beginning to work on a paper
for publication. I was hoping that you might be able to give me
some time: I know you that you are all working tirelessly to
understand the ways in which this complex of diseases damages
the body, and that you understand that we are all of us in a life-
or-death struggle, with alternative communities like Lymenet
one essential piece of the puzzle.
I have a bunch of questions I was hoping you would answer for
me, about the self-assumed role of 'greeter' or 'guide' that some
members of Lymenet (like you) take on, to address the concerns
of newcomers and give them a sense of some of the possibilities
available to them for alternative treatments. If you're willing, I
will send them to you: if you have additional questions, please
ask.
I posted this in activism as well
Thanks for your time - Pam Read [email protected] Posted by Keebler (Member # 12673) on :
- Pam,
Thanks for your work on this matter. Due to energy constraints I don't use my PM function here.
However, I sent you an email ("Keebler" is in the subject line so you can know it's safe to open).
I forgot to mention this in the email but, if you reply, please do not double space. It's very hard to read double spacing -- just as hard to read solid blocks of text.
Short paragraphs work best with a line of white space every 3-4 lines at the max. Otherwise, my eyes just can't read it without extreme pain and vertigo - and it takes a long time to sort it all out. -
Posted by Keebler (Member # 12673) on :
- You might also want to look at BettyG's stellar advocay efforts at MDJunction, the lyme section.
My eyes cannot bear to read that site for even a few seconds (it's so busy and distracting) but I know she works very hard to help others there.
- Not an exclusive or formal list. Just the top organizations that came to mind. Remember STATE and LOCAL lyme support groups, too. -
Posted by Lymetoo (Member # 743) on :
Moving to Activism .. again
Posted by Keebler (Member # 12673) on :
- Going back to your focus:
"critically important role patient-run online communities play as opponents of, and alternatives to, mainstream medicine." (end quote)
Please, do not make it sound like those supporting naturopathic medicine are "opponents of mainstream medicine" as that can be misinterpreted. It's just not that clear.
But, to advocate for lyme treatment, that automatically goes against mainstream medicine, as dictated by the IDSA.
To be very clear, even with naturopathic approaches, often lyme requires high doses of antibiotics for a long time. And naturopathic support - &/or a blending of allopathic and naturopathic - can be very helpful in such cases.
Too often, lyme becomes much worse because mainstream medicine fails to allow for proper Rx, long enough and at high enough doses.
My posts are never intended to OPPOSE mainstream medicine - as that definition can be elusive.
At least not about lyme treatment. I do embrace other ways to address sleep and some other symptoms that are not pharmacologic in nature. But where infection is concerned, we need the best we can find from all avenues.
My focus is to share information that generally has been neglected in mainstream medicine.
But, really, mainstream medicine totally dismisses the reality of lyme. There is terrible medical abuse in mainstream medicine toward those with lyme and the good doctors (both LLMD and LL NDs) who treat them.
Aside from that point, though, what is "mainstream"? Even "traditional" medicine really would go back, way back, in the best sense of the word to medicine from nature.
I might define "mainstream" as pharmacology based with basics on good basic self-care with maybe a multi-vitamin (from not always such good sources).
Still, my focus has never been to OPPOSE the "mainstream" but find what works best.
It's been to keep others safe from damages I've had from SOME of the "mainstream" approaches or "mainstream" neglect and sheer abuse for those with chronic infections and conditions.
If that "opposes" so be it but the intention is EDUCATION and ACCESS to a full world of medicine - from the lab to the plant kingdom - from last week & going back thousands of years.
As for "mainstream" medicine - there really is no such thing for anyone treating lyme if they really want to address it adequately.
"Mainstream" would be the IDSA approach and that is a disaster, a true, immoral disaster for most with lyme.
LLMDs do not - cannot - practice mainstream medicine. It's impossible. And they are better to leave that fairly tale behind.
I think it's essential that every person with lyme and other tick-borne or other chronic stealth infections have both a LLMD and a LL ND.
They each have four years + of medical school. Although their education focus varies, they are best as a COMPLEMENT to each other, not as opposition.
Many LLMDs are learning more about naturopathic medicine and many LL NDs are learning more about synthetic pharmacology and how that might work (or not) along side of naturopathic pharmacology.
This is about good medicine - what works - from all corners of medicine and that include nature as well as the lab.
But one thing is very clear in my focus - anything that stresses any body organ or system is best avoided if there is a different way that works just as well without stress or damage -- or how to offer adequate support when a harsh approach is required.
Another focus: life-style. When "doing" naturopathic approaches, it's not just about taking this herb or that vitamin. It's a whole lifestyle and mindset for nourishing and nuturing with anything we do.
And that does not always mean being gung-ho and aggressive. Sometimes, especially with serious chronic stealth infections, it's not so much how to work harder but more wisely.
For example - as aerobic exercise can damage the heart for those dealing with infection -
- the kinds of exercises that seem to work best for those with chronic stealth infections are specific forms of Tai Chi, Qi Gong, Restorative Yoga or individualized Pilates or Feldenkrais movement therapy.
Not harder. Yet more specifically focused. Yet it does take concerted effort. No doubt about that.
One issue not addressed: availability and access to both holistic LLMDs and LL NDs. We are starving for access to these best kinds of doctors for us.
They are rare and since no insurance will cover treatment, patients are so often left to figure it out for themselves as best they can on a shoestring of a budget if there is even any thread of a shoestring left.
And that is what I try to help, as best I can by posting the best links to articles, books, etc.
It's all about education, access to information for the very best ways to improve health. -
[ 04-26-2013, 11:21 PM: Message edited by: Keebler ]
Posted by psr1 (Member # 22957) on :
Hi Keebler:
Thanks for the very detailed and on-point response, and for the
clarifications. I sent you an email as well. I would love for others to
weigh in on this: that you don't really see Lymenet as an alternative
so much as, maybe, a clearinghouse for all of the various
possibilities - with your experience with some of these things the purpose of your responses to newcomers?
Posted by Robin123 (Member # 9197) on :
Hi - thanks for being interested in how we handle discussion of options.
I guess it depends on what your definition of mainstream is. As Keebler noted above, the IDSA guidelines are used to deny us recognition and treatment. Is that the mainstream you're referring to, or are you referring to antibiotic use? If the latter, we are not opposed to antibiotics if they work.
As far as the rest of treatments go, I don't call them alternative - I call them complementary, as they can complement antibiotic use, or for many people who are unable to handle antibiotics, these other treatments ARE our treatments.
We try to give people as broad a picture as we can about what is working to treat Lyme and co's.
Posted by psr1 (Member # 22957) on :
By "mainstream" I mean what most people would expect to do and experience, when they are not feeling well and go to what we consider to be your typical GP - I know they are not all the same, with some much more Lyme aware than others, but what most people might think of as "typical". I know this is vague, but I am also interested in what people think of as typical or mainstream as well. Would it be fair to say that most people on Lymenet - or in particular the "greeters" - are not opposed to the use of antibiotics and think that one primary issue is that longterm/combination abx are not available enough through "mainstream" medicine?
Posted by Robin123 (Member # 9197) on :
In our situation, "mainstream" is flawed, and financially corrupt. People are making money off of this situation.
In answer to your question, none of it is being made available to patients, since the doctors and other medical professionals aren't recognizing Lyme and co-infections. And I would say that gp's also generally ignorant, and worse.
Part of the problem is that medical people aren't being educated about what's going on. So we need to tell them what's happening.
Yes, in general we are interested in complimentary medicine, and anything that works for someone! We're all different in what works for us, including within any treatment subset.
Btw, I wouldn't even use the term "greeters," since anyone here who is familiar with Lyme and co-infections can respond to newcomers and to questions. I would call people "respondents." Just my opinion.
psr, take a look in Activism for May Lyme Disease Awareness Month rallies in your area, and consider to going to one!