The results are in... 145 voters 46% (66 votes) for Yes! Split out "Medical". 53% (77 votes) for No, thanks. I like "Medical" the way it is now. 1% (2 votes) for another suggestion.
This poll was pretty close. I will talk with the other powers-that-be about the results and all the comments, to see where we should go from here.
Thanks for your input!! *************************************************
It has been suggested that LymeNet add an additional forum. Instead of having a forum for "Medical", it would be split out into 2 separate forums. One for "Conventional Treatments" (perscription medication, etc.), and one for "Alternative Treatments" (herbal products, Bionic 880, etc.).
posted
Yay! Thanks, Jenifer. I don't mean to offend anyone, but Lymenet is beginning to look like "The Salt C" board. I think it would really help newbies if they could see that there is a delineation between mainstream treatment and other treatments that are not backed up by scientific studies.
Posts: 345 | From East Coast | Registered: Apr 2008
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
I think two forums is an excellent idea!
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i don't know. i have a hard enough time just sorting through all the stuff in medical...
hmmm, don't care tho, whatever ya'll decide is fine.
but trying to figure out what some call "conventional" and some call "alternative" means i have to sort through two boards.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Do I get one of those nifty stickers that says, "I VOTED"?
JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
oh i think it's a great idea
Posts: 1485 | From USA | Registered: Apr 2004
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Having two forums seems like it will actually create more chaos...
especailly if all supplements are considerred "alternative" because the truth is that with most llmds some supplements are really conventional...
and a person may have to split up a question if it is about their treatment which constists of both abx(conventional) and conventionally used supplements ( so under these definitions alternative)...
Some people with lyme have enough problems trying to figure out what to post in general and what to post in medical....
and splitting up medical seems like it will create more chaos then it will resolve.
posted
I just voted against splitting Medical into two forums, and then saw that the current vote is 57/43 for the split. Leaving me scratching my head about what exactly is being voted upon.
Can someone explain what is supposed to be the distinction between the two categories? Are we saying one of them is antibiotics only, without supplements?
How many people here actually do antibiotics with no other supplementation? That, I think, would be rare.
Or is this first category to be antibiotics with accepted standard supplements? Even the accepted Burrascano guidelines recommends lots of supplements.
Then are we going to be able to agree on what is conventional vs unconventional supplementation? What if a supplement not so previously used becomes recognized as an effective supplement? Who's going to decide if it's conventional or alternative?
If the split is meds vs herbs, I think a lot of accepted meds have come from herbs.
What if a supplement mixes ingredients? How do we know what category to put our supplement into - ie, conventional vs unconventional, in terms of commonly recognized vs less recognized ingredients?
And for those of us who are mixing treatments, how do we really know what each is doing? What if they're potentiating each other? We only have one body, and that body might be responding to all of it.
I'm trying magnet machine treatment now. How do I know it's not making my conventional rx med more effective?
What the magnet machine does is raise the milliamp level of cells from a low level to more what it's supposed to be for a healthy body.
A normal cell has a milliamp membrane voltage of 70. Sick cells can drop as low as 15, as has been seen in cancer cells, for example. Electrical voltage allows transfer of all kinds of minerals and thus all kinds of cell reactions to occur. This is part of normal healthy cell activity, which gets disrupted in illness.
If the magnet machine is able to restore normal cellular health, then maybe it needs to be upgraded to being considered a conventional treatment.
What we consider conventional and unconventional may be just what we're used to considering as normal. And that definition changes relative to every culture, everywhere in the world. In Asia, it is normal to use acupuncture instead of anaesthesia in surgery.
My understanding of recovery is we're supposed to do three things: kill the pathogens, detox the body, and rebuild the body by replenishing everything we've lost due to being sick.
Doesn't doing all of that require more than just antibiotics?
If the argument here is between treatments followed by studies vs those without studies, I understand the problem is money. The drug companies will spend millions to find a drug they can sell, but nothing gets spent on natural things/treatments they can't make a profit off of.
Is that where this desire to split Medical is coming from? If so, unfortunately, I don't think we're going to get those answers very soon, for lack of people to invest in studying the profitless treatments.
Even the efficacy of various rx med protocols is still being ascertained, as we see from the current work Burrascano is doing via the registry to gather med data results from physicians.
So, folks, as you can see, I have lots of questions about the meaning of this thread. Thx for your efforts to answer them.
[ 19. December 2008, 02:22 AM: Message edited by: Robin123 ]
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
I wonder where you would post your protocol if it contains both medical & alternative components?
I'm not sure this will keep the peace as there may be controversy if some think you have posted in the wrong section.
Where would a discussion of probiotics go? Most doctors want you on them but they are not a prescription item. I can see there may be some confusion.
Posts: 590 | From Canada | Registered: Oct 2007
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posted
I vote for two forums. It would be great to have one for traditional Lyme therapies and another for complimentary alternative treatments. That would parallel the recent ILADS conference where they had separate sessions for traditional Lyme treatment as well as sessions for CAM (complimentary alternative medicine) therapies.
I feel it would be much less complicated and confusing for newly diagnosed patients if the two topics were separated. Even though people would have to visit two forums, it might enable new patients to obtain more answers for initial treatment because it would allow their topics to remain on the first page longer.
(edited for clarification)
Posts: 487 | From USA | Registered: Feb 2002
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
I voted for two separate forums because I still get a lot of phone calls from newly diagnosed Lymies (even though I haven't been active at LymeNet for a long time).
Whenever I try to explain to newbies about Lyme disease, I would like to be able to direct them to LymeNet -- but I can't do that anymore because LymeNet has become too confusing for them to sort out which treatments are conventional ILADS protocols that are offered by Lyme-"literate" docs (LLMDs) according to Dr. B's guidelines vs. what is being offered by non-ILADS, Lyme-"friendly" naturopathic type docs (LFNDs).
It's easy enough for us old-timers to sort it all out, but it's much too confusing and overwhelming for newbies who are just starting to explore Lyme treatment. For their sakes, please, please vote for two separate medical forums.
The Moderators have always been very gracious and polite about helping members to follow the board rules of decorum, so even if someone does post a topic in the wrong spot or if the topic starts to get "off topic," I'm confident that the Moderators will do a good job in helping to guide things back on track without causing too many hard feelings among members who might make a mistake and post something in the wrong forum.
Like LoneStarTick, I also attended the ILADS Conf. in San Francisco this last October. Even the ILADS docs held separate sessions for various topics, including CAM therapies. It shouldn't be too difficult to figure out which therapies fit under the old traditional protocol, as spelled out in-depth by Dr. B. (link below).
Eventually, everyone will get the hang of it, I'm quite sure. "Practice makes perfect," you know.
Posts: 4563 | From TX | Registered: Sep 2002
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bettyg
Unregistered
posted
lonestartick,
it's been MANY MOONS since i've seen you back on here posting; i've mised you and your wisdom who directed me here over 4.5 years ago! big thanks!
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Neither
I would also be in support of one forum for ILADS treatment, and one for other types of therapies. That forum would need to have the latest Dr. B. protocol link on the top.
I won't vote in favor of separating forums, because many questions don't relate to one or the other, for instance how to detox.
That's something we all need to know, regardless of medical approach. I think many alternative folks know lots about this, but might not visit the antibiotic forum to help out.
In addition, I would like to see us refer to ILADS doctors as ILADS MD's rather than LLMS's. Many are lyme literate, but we do need to differentiate between those who use the ILADS protocol and those who use IDSA protocols and/or mainly alternative treatments.
Conventional lyme treatment is IDSA, and I am not in support of a forum here for that treatment.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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It's easy enough for us old-timers to sort it all out, but it's much too confusing and overwhelming for newbies who are just starting to explore Lyme treatment. For their sakes, please, please vote for two separate medical forums.
quote:
This is all relatively new to me.
I do not retain new information as well as I used to.
It can be pretty overwhelming and confusing.
Carly.
Posts: 797 | From New York | Registered: Feb 2008
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posted
I've mentioned before that I think splitting the boards is a good thing.I think a three way split would be most beneficial.
1. Verified "Conventional" pharmaceutical therapies and diagnostics- This would detail anything you needed a prescription for, the use of antibiotics, antifungals, anti virals, pain medication and more. Most ILADS stuff would be in this category, diagnostics you could get from most labs, and more.
2. Verified "Complimentary" therapies - This would be herbal medicine, acupuncture, diet changes, detoxification, and pretty much anything else that while considered "alternative medicine" that still is bound in understood scientific methods and modalities.
3. Unverified "Experimental" and energy therapies - any sort of energy medicine that requires an alteration to proven laws of physics or is generally experimental should be posted here. This is the place for rife, biophoton, homeopathy, muscle testing and any other "lay on hands" techniques.
Posts: 691 | From East coast, USA | Registered: Jun 2006
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Great idea! However when one statrts to really think anout it, it seems too hard and confusing to do this. I mean Vitamin c is pretty mainstream ...........so if itis part of your protocol with ABX then it seems mainstream. But if you are on salt and c then it would be considered alternative.
Also, most folks are doing some of each .............
I say it is an "artificial split." Sounds good and we would all like this to be easier to think aout, however I think it would be detrimental to both types of treatments to say you can get better with only one or the other. Yes, there are some ( i don't know any) who get better with just abx but usually improvement comes from using many approaches that included allopathic and traditional.
i vote for no split.
Thanks for the chance to vote, robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Why not call the second section Supplements and Alternative Medicine.........so that it will encompass ANY supplements to our prescriptions, as well as alternative medicine.
Or you could call the second section Adjunctive Therapies ......that is less polarizing I feel.....it implies you can mix and match instead of picking one side or the other.
Posts: 4590 | From Midwest | Registered: Jun 2008
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
I forgot to include something semi-important which might help to clarify how things could be split up. I spoke very briefly with the President of ILADS at the conference in October. He indicated that they are going to need to write up their own recommended "standard of care" soon because of all the new alternative therapies which are being introduced at ILADS meetings.
If so, then our Moderators will eventually have some kind of guideline to follow in deciding how to split things up. My guess is that most of the therapies in Blackstone's Category #2 (above) will probably become accepted eventually by the ILADS leadership and therefore combined with Category #1.
Until that time though, I would be willing to trust the judgment of our Moderators to be discerning and as fair as possible, even if each of us might not always agree with each and every single decision the Moderators make regarding exactly which therapies fit into Category 1.
Any kind of split would be better than no split at all, IMO, so that newbies can get off to a good start without too much unnecessary confusion.
Posts: 4563 | From TX | Registered: Sep 2002
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What happens if a patient goes through years of one type of therapy (pick your poison: alt or ILADS) and fails, then switches to the other and succeeds -- where does s/he post about their success?
If, for example, the success came from massive abx after years of alt therapies, then posting on the "traditional" forum would preaching to the choir. And vice-versa.
Also, by keeping the groups together it keeps everyone honest. It's very important for people who may not believe or agree with your views to challenge them occasionally -- though, not in a nasty way -- so that you can see the thing from many angles. We need open minds. Not two mutual admiration societies. How good is it, for the group as a whole, to all see things the same way about a particular treatment. In my opinion, it was important in the bionic threads to have the doubters -- again, respectfully -- chime in with their ideas. And, in posts where LLMDs are nuking patient with a dozen or more meds and supps, it's important for the patients to see there are additional explanations for their decline, other than it always being a herx. Differing opinions are needed.
A split would be a mess.
Like many above have stated, where do you draw the distinction? What is traditional and what is alt? Detox comes in here quite handily. Many LLMDs use detox techniques, whereas others don't believe in them. So does the patient post part of their therapy in traditional, and the other detoxing part in alt; if so this would be even more misleading and confusing. What about patients using abx, herbs, rife, detox, etc., where do they post; who's to say what it is that's helping them, or if it's a bit of everything.
All this does, and again, in my opinion, is appease and keep quiet few people who are VERY vocal about what is the RIGHT way to treat Lyme and friends. (There is a place for them in Europe, from what I understand )
From my own personal experience, sick over 15 years, I would have benefited greatly by being exposed to the many ideas tossed about in this forum. It is a goldmine. But, back then, in my early and unenlightened days, I would have stayed to the traditional forum, and not have learned many things which may have helped; which may, in fact, have saved me from ending up in the giant hole where I reside today.
Also, what about coinfections? Maybe split them up too? A forum for Lyme, another for bart, babs, erl, anap, RMSF, mycoplasma -- wait there are so many kinds (a bunch of separate forums about mycoplasmas), EBV, HHV1, HHV2, etc.....
What we need is more and better communication of ideas and possible solutions, not less.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
As far as I'm understanding this, it isn't another website or anything......just that Medical Questions will become two sections.
I don't really see how that is as tragic as we are making it out to be. It would still be on the same website......so people will hopefully click on all the sections. If they don't, the information was there available to them, so what more can you do?
Putting the info on two separate websites would make no sense, but if it's all part of lymenet.....that is fine to me.
I think it would be easy to go overboard. On Lymenet Europe they have a section for scientific abstracts, etc......that is too confusing for me, but two sections: I can handle that. I think it's safe to assume most people can.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I think it is easier to find informtion in medical and not have to look two places for information, so I would not like a split. Also, the alternative therapies are often combined with antibiotics, so where would you post those?
And who determines what is alternative and what is mainstream? I can just see someone posting what they do not consider to be alternative in the medical section and someone else thinks it belongs in the alternative section and a big fight ensues.
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10169 | From Illinois | Registered: Aug 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Quote- "I can just see someone posting what they do not consider to be alternative in the medical section and someone else thinks it belongs in the alternative section and a big fight ensues."
All of your points are excellent ones. It sounds like we may have some guidelines from ILADS to follow and in the mean time I also trust our moderators to sort things out as best they can. There will always be a little bit of an overlap.
Like you, TX Mom, I hesitate to recommend lymenet in its present state to newbies anymore. A separated forum would be an excellent reference for newbies...much easier to process.
[ 22. December 2008, 11:35 AM: Message edited by: SoSublyme ]
Posts: 345 | From East Coast | Registered: Apr 2008
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"Like you, TX Mom, I hesitate to recommend lymenet in its present state to newbies anymore. A separated forum would be an excellent reference for newbies...much easier to process."
If this is the case, then perhaps instead of splitting Medical, we could add a newbie forum that concentrates on ILADS basics.
That would be a compromise, and we could leave Medical alone.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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bettyg
Unregistered
posted
muscles,
we were told before there is NO more room to expand another forum.
only possibility was to use COMPUTER QUESTIONS OR OFF TOPIC be eliminated....
just more food for thought.
we were to get new software updated again since last year, and it's not happened yet; maybe that is WHY jenifer is asking ... there might be room to do this!
i also like the idea of BASICS for newbies; i've been here 4.5 years, and many of these posts of alternatives/etc. are SO TECHINICAL; i can't begin to follow many of them.
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
Would treatment that includes Artemisinin be "Conventional", "Alternative", or "Herbal"?
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Nope. Too impossible to separate.
What has healed me has been a little killing followed by a lot of detoxing and a foundation of nutritional medicine to build up my body.
Just killing put my lyme into autoimmune disease. If my original treatment had involved a lot of detox and diet change I do not believe I ever would have moved into the auto immune world of rheumatoid arthritis.
So, if a newbie comes here and reads only about abx, they could very well end up worse off than just lyme or they could still be sick 13 yrs later and still depending on abx like so many who only follow conventional treatment.
Bad idea!
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
I feel it's been a long time coming. I voted YES.
When I first got sick over a year and a half ago, I relied on the Medical forum to help answer some of my questions. Lately I rarely even come here because there doesn't seem to be as much helpful information. Probably partly because I am more lyme educated now, but it is still hard to find the pertinent treatment information. I usually have to dig pretty deep to find what I am looking for. No, I certainly wouldn't recommend the site to a newbie - it would only serve to confuse them further.
When considering this question myself, I've always thought that maybe a good way to split the forum is to have the 'conventional' treatment area be geared more toward the Burrascano Guidlines, or Burrascano-esque type treatment: treatment that most of the more famous LLMDs prescribe.
I can certainly empathize with both sides. I had the opportunity to follow the conventional type treatment from the beginning of my disease. No, I am not cured yet, but I have just now been able to start more aggressive treatment.
But I have had the opportunity to speak to people on the flip side, and their reasons for following the less traditional protocol are very logical for them. Yet, it is hard to sit and recommend advice to someone on alternative treatment simply because the the two types of treatments take such different paths.
I appreciate when someone recommends to me this wonderful substance that helped them so much. But I've got so many things treatment-wise going on that I don't want to throw something else into the mix. I need to follow my doctors' protocols and see what happens with that before I throw my hands up and explore alternative therapies. If and when I get to that point, I would surely love to have ONE place that I can go to for that type of information.
Posts: 69 | From So Cal | Registered: Jun 2007
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With all due respect, why would you assume a newbie would only read about antibiotics? When I was just entering Lymeland I read everything I could get my hands on. (On those days when I could comprehend something ) I understand, though, that your statements are being made out of concern for others since traditional treatment alone did not work for you. (I'm sorry to hear about all that you went through.)
There is no reason why a newbie wouldn't click on different forums, just like they do now. The only difference is that the postings would make more sense to them, if they were not all clumped together.
Riverpatrol,
Completely agree! Well said.
[ 21. December 2008, 03:26 PM: Message edited by: SoSublyme ]
Posts: 345 | From East Coast | Registered: Apr 2008
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The reason newbies would read the traditional forum only, is the same reason I would have at the beginning. It's what we all know. What we're all taught. Go to the doctor, get a pill, get better. It takes a long time to see that this might not be the answer. And by then it may be too late.
When you are first sick, you have not yet lost hope in traditional medicine. From years of indoctrination, most patients truly believe -- at least I, and most of the chronic people I know, did -- that "now that I know what this is, all I need is some pills and I'll be all set."
It can take many years to get out of that mind set, for some it never happens. But it is very limiting, and, in my opinion, caused me to end up much worse off today.
True, there was not much alt info available when I first got sick, but had I been reading a board like this one I may have explored some other avenues.
Luvs,
I'm right there with you.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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I understand what you are saying and I am so sorry that traditional treatment did not work for you. I still think most newbies would at least read all the forums, then decide what sounds best to them.
I probably am biased in that I hope people would try traditional first, if they are able to tolerate it and have financial and physical access to it.
I guess I am lucky to have an llmd with a really open mind. I am doing lots of different things myself along with Dr. B's protocols. If I don't have success, at some point I will move on but I am still hopeful.
I hope you and I have our muscles back someday soon! Posts: 345 | From East Coast | Registered: Apr 2008
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
The more I read, the more I feel good about:
1) an ILADS section that includes seeking an ILADS doctor, and a link to the ILADS protocol, and
2) an experimental and alternative section that includes seeking an LL naturopth or energy medicine practitioner.
It's a tricky split because even ILADS itself is alternative and experimental, according to the IDSA.
Personally, I am an experimentor. I've used antibiotics, bee venom, home biophotonics with nosodes, and many other therapies with much success, and am proud to share.
I like to do my own thing. My sister does not. If someone in her family gets lyme, she will use an antibiotic protocol, and do exactly what the doctor orders, no more no less. Chances are that without lymenet as a resource, she would end up with an IDSA duck.
I would like my sister and others like her to have access to the ILADS information that contains a specific protocol and effective herbals and detox, rather than feeling like half the information here is pseudo-science, throwing it all out the window.
Then if she decides to cruise on over to alternative and experimental and learn something new, she can go play there when she feels like it.
The main thing for us as lymenet members is to keep equal respect for those people who are using an ILADS approach, those who are not using antibiotics at all, and those who are combining.
Many treatments that start out in alternative will eventually move over to ILADS territory, as ILADS continue to learn and revise.
I am a bit concerned that newbies would post questions about Salt C or other alternatives in the ILADS forum and get blasted for it.
If there is an expansion, we will have to be very careful about preserving respect and not turning it into an us and them (whichever forum you most identify with at the moment.)
We are all in this together! Grandchildren of ILADS followers will benefit from the experimenters of today, as more research separates the wheat from the chaff.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Yo ho ho...
The IDSA/Bumsteere gang called last night after they saw this post.
They said if we get two sections, they would also like to have a section labeled "IDSA Treatments".
I said we ALL know what they have to say....
1. Doxy for 2 weeks, but ONLY after you spend enough on their lab tests first. After all, they've gotta make a living.
2. If people say they are still sick after the doxy, rediagnose them as being crazy... give them anti-depressents and tell them to get more exercise so their empty pockets feel better.
Well, they said they know they are on shaky ground right now cause of that stupid science stuff and all that is proving them wrong... again... but...
If LymeNet gives them a section of their own... they will make a weekly donation to the alligator pit. And it will be one of their own.
And yup.. just as you all suspected.
One of them slipped and told me that IDSA eat their young too!
posted
I voted in favor of splitting. I'm new, just saw an LLMD late Nov.
I think "TX Lyme Mom" made excellent points above. I almost left shortly after I got here, because it is very confusing and difficult for a new person.
Perhaps in time I will become more skilled at taking away what I want and letting the rest be.
I am grateful for this site, and hope I don't sound too picky. There may be too much info here for me sometimes, but that's better than the lack of info elsewhere.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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DebAz
Unregistered
posted
I think that it would be impossible to do a split as your talking about.
I am not sure what the goal is. I have read in some answers that there is a concern for newbies and in some it sounds like you just do not like the wide mix of items on the forum.
I sense that some want to rate what should be allowed on the forum and what should not be allowed. Who can really judge what therapies should be allowed or not?
I also sense that some feel that there is a line to be draw only based on their opinion and not on much else and that line for most does not exist.
But in my opinion it should all open for discussion.
As a newbie myself. i was not a newbie in being sick and in finding treatment for my immune system or in co infections but I was new in Lyme. And I found the newbie sections on the top of the Medical forum to be very helpful to read first and you did a great job in putting those items up there to read through as a first line of education.
Maybe continue that or make more Newbie threads on the top that are a bit more organized and in a certain order so that they feel grounded and feel as if the basic education of the disease is available to them.
Besides that, dividing the forum on medical care is not going to help or change any of the issues that i see as the core problem
That is about being open minded or being accepting of things that are not what they might agree with.
Near all people are doing a combination of things and there are plenty of posts about one antibiotic treatment or another.
Besides abx near all other things.. doctor ordered or not are supplements .. and then as well the list is huge as to herbs and then other treatments by natueropaths or homeopaths diet and mental and emotional health and well then there are so many things people use to guide their treatments from muscle testing to prayer. Then there are so many co conditions as well as mixed therapies. It goes on and on and on.
There is no line to draw I see..
Its impossible for all diseases... And the doctors are now coming to that point to.. Which is a great thing. OUr bodeis and health are a whole body treatment.
As a newbie.. it was not the information that was hard to get because of the mix of items.. but it was the confiicts within threads that made me have to sort through and sift through that was a turn off and made it hard to get information..
Its the manner of which some opinios become conflict that is the problem here and not the issues.
Dividing lines will not solve that problem..
Newbies and all of use are looking for support and help and a helping hand. They and us want to be listened to and want to as well get information as easily and directly and quickly as possible
Posting in more simple and clear ways with reference materials and personal experiences does give that. There is a lot of that and then there is a lot of junk inbetween.
it is of my opinion that it is the people making it complicated. Not the set up.
Lymenet has done a great job in providing the space well.
I hope that people can and will agree to work side by side in a more healthy and open manner.
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
I think its a great idea, but antibiotics in and of themselves are unconventional treatment for lyme. And my Herx that I got from the Biaxin and the way my LLMD had me puch through was most unconventional. I still have the lingering effects.
So I would have to say NO.
Even though the medical board gets flooded and messed up with blogs and people who are sad, its still a great refuge for us to offfer support which could raise their neurotransmitters or perhaps offer some drugs that they could get from their doctor. In either case it would still be medical appropriate.
Posts: 2905 | From New England | Registered: Sep 2004
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posted
Lets think of it this way... please see above for the three way split I refer to.
Think about the difference in variables between the sections.
1. "Verified, Pharmaceutical" - We know for a fact that these compounds have been proven time and time again to have an effect. Ie. 500mg of doxycycline is standardized. The compound has been synthesized to become uniform - across the board, the potency is going to be the same for a given dosage. The compound in question is well known in its effects and limitations - for instance, doxycycline is known to be bactericidal by inhibiting certain functions. We also know that it is not useful against viruses. We know that diflucan and vfend go through a specific chemical process in order to inhibit fungal overgrowth.
Items in this category are KNOWN to work in and of themselves. Now, I'm not saying that we still don't know ideal dosages for lyme and other confections, or even have a catch-all suggestion for which antibiotics to use, but it is one less variable then the following.
2. "Verified, Alternative/Complimentary" - Things like herbal medicine, diet changes (if warranted), acupuncture and more. The methodology is sound and studied, however there are enough gaps of certain varieties that make it a complimentary practice until more study has been done. For instance, herbal potency. Garlic that you purchase at CVS is leaps and bounds different from that you can buy from Zhang's. There may also be gaps in creating a standard of care, so to speak. For instance, there is evidence to show that certain mushrooms increase NK cell activity. However, there is very little hard data on how much is enough for said desired effect. However, we do know that say...taking St. John's Wort is going to act as a SSRI on your system. We can take a look at many of these treatments and see limited evidence of effectiveness, and an understandable model of action
This category provides promising complementary therapies that may not have all the data in yet, but there is significant evidence to suggest the methodology is sound. In addition, many of these therapies can greatly assist with recovery when combined with more conventional treatments, but there is limited evidence and/or proven effectiveness that they should be relied on INSTEAD of other conventional therapies.
3. "Unverified, Experimental and Energy" - this is the big one. These therapies have a methodology that is unproven. Energy medicine for instance, generally requires assumptions that cannot be verified by external sources. For instance, one of the key critiques of homeopathy is that all the remedies appear to just be water. Independent studies have not verified the "energy" of "vibrations" within. Nobody has been able to measure what makes it medicine. There have also been conflicting reports about its effectiveness. Assuming it does work, we have little understanding of the limitations of the therapy as well. All most all energy medicine requires an assumption (usually based in particle or quantum physics) that holds true on the macro level, as well as the micro one. "Energy" based diagnostics also have questionable methodology, especially when they require a certain practitioner sensitivity. There is also often the requirement that the patient be "in the right frame of mind" of "believe" for the treatment to work, which is a vast difference from other sorts of medicine - Doxycycline doesn't "care" if you believe in it or not, and grapefruit seed extract is still going to affect your cytochrome p-450 pathway regardless if you happen to feeling positive or negative that day.
Other experimental treatments, like Nano-Silver (which I personally take), and MMS are potentially dangerous substances. There are great theories that they work, but as of yet no proof. ie. We know for a fact that nanosilver applied topically to a wound is a potent antibiotic. However, there is no comprehensive evidence to show that oral silver sprays can combat pathogens throughout the body. As such, these treatments MUST be listed as experimental and understood as such.
In summation, the three aren't equal and shouldn't be shown that way. Category 1 treatments there are simply less unknown variables then category two or three. Patients should be informed of this fact, and I think it does a service to the board to stop presenting all three categories as equal. This is not to say that success cannot be had with all three, but whenever a patient is about to make a choice about their care, they need to understand when a particular treatment has limited data or questionable methodology.
Posts: 691 | From East coast, USA | Registered: Jun 2006
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I hope there is room to split Medical in three sections because your post outlined the reasons so well.
What a great improvement it would be to this site for newbies and oldies alike. (And middle-of-the-roadies). Thanks! Posts: 345 | From East Coast | Registered: Apr 2008
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charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
I'm pretty much with Blackstone... but the 'belief-based' therapies ought to be off in a different sub forum.
I can entertain the idea of Buhner as a protocol or even salt and C or MMS as experiments but waving magic wands at groceries is something we purely logical, unemotional thinkers can't quite reconcile.
sub forums would be a good idea if possible on this platform...
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Split it into Medical normal medical and BioMedicalalt/experimental/literature
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
quote: I've mentioned before that I think splitting the boards is a good thing.I think a three way split would be most beneficial.
@Blackstone - I just wanted to say that I think that your posts regarding the potential split show a great deal of thought went into the reasoning behind the categories.
Sorry to respond to a poll with a question, but what is the significant driver(s) behind the request for a forum split? Opinions on the reasoning for the proposed split seem to vary - there seems to be concern about accessibility for new users, concern about implicitly equal support by board members for various protocols, etc. I personally like to know what problem I am fixing when I make a change - but that is really personal bias.
Two concerns that I would have over the split:
If the reason for the split is new member friendliness, I am not convinced having to figure out where to post a specific question will help them feel at home any quicker. It may do just the opposite - delay a post by a new member because they fear it would attract negative attention by being posted in the "wrong" category. As much as I liked Blackstones category definitions, the more specific the definitions become, the higher the hurdle for entry is for users with less background.
The current backend server for the site seems to limit searches on keywords to one forum at a time, which means repeated searches for the same keyword over multiple forums. I am not a big fan of UBB, but then again I certainly have no complaints about the cost. Posts: 263 | From Capital Region, NY, USA | Registered: Jun 2008
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posted
I think splitting the boards is a bad idea.
People will not have access to possibly lifesaving knowledge if this is done. Many Lymies are too tired or too sick to be trotting around through the different forums and will overlook it the alternative or vice versa.
Bad Idea.
Posts: 589 | From Rhode Island | Registered: Jun 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey...
A few thoughts. This may sound like I am being argumentative.. but I'm not.. just throwing out there what some might have concerns or confusion about.
We need to ask ourselves.. who's the boss?
Who has the right to toss out any protocol or state that one is better or safer than another at this point?
Who can say one protocol works... REALLY works.. and another one doesn't?
And where do we REALLY draw the lines between sections.. and whose lines are they?
1. The example of Doxy. Using Blackstone's example...
There are many ways to look at doxy.
Example-
IDSA has literature out stating the doxy is simply a placebo... or it is used ONLY to reduce inflammation and after X number of weeks there is no "curing" affect that we are getting from it.
We can't prove differently. No studies backing us up.
If we listen to the IDSA.. and they ARE the experts (puke puke)... then Doxy would go into a category of experimental protocols.
Who are we to make the determination of what is ok or not... safe or not...... when our literature base is the same as everyone else... and no one has those answers.
Are we just saying, wishing, hoping for better results by using doxy like we do... or by using it differently than accepted protocols state?
Are we allowing ourselves the luxury of saying doxy IS the right way and everything else is not? Look at the doxy failures we have out there.
The IDSA also claims a bunch of other antibiotics shouldn't be used because they don't work.
Soooooooooooo.. are all or even ANY antibiotics really mainstream for Lyme? Should they really be in this first category as it is being described?
Looks like WE are the ones claiming Doxy does this and that.. and it is not mainstream making the claims.
And bottom line... do we REALLY know if anything works?
```````````````````````````````````````````````` 2. IDSA claims IV antibiotic use is not needed in most situations.
So again, we are NOT able to say it is tried and true according to mainstream. WE are the alternatives here, pushing our theories with no solid back up... even when using antibiotics.
And if you think about it... we have NO proof that extended IV's will cure Lyme.
Claiming IV antibiotics will cure us or do us better is the same as claiming clicking our heels together 3 times and singing Yankee Doodle will cure us.
But IV's are MUCH more dangerous... and ... the IDSA states IV's are dangerous.
They certainly can be... and have been.
Are IV antibiotics (risk of septic shock for example) more dangerous than Salt and Vitamin C? Or taking high doses of Vitamin D and becoming toxic? Or having a severe allergic reaction? Are they safer than hyperbaric treatments?
So now you have different treatments... none of which are accepted by mainstream... none that have been proven to work... and all which can be dangerous.
Note- NONE of our antibiotics have been approved by anyone, including the manufactures, to be used for more than a couple of weeks. No studies have been done on the safety of using biaxin, for example, for more than a minimum amount of time. And no studies have been done showing biaxin does anything at all for Lyme. Same as taking cat's claw.
Sooooo.. the new members that show up.. that too many folks think are totally stupid, can't decipher things for themselves... and need protection from the evil doers pushing unconventional treatments...
Are we really telling the truth.. and/or... protecting any of them by saying antibiotics are THE way to go.. the accepted and more safe way to go? Are we providing them safe ways to treat that actually work??
No.
Sooooooooo.. EVERYTHING we do is alternative. NOTHING is proven to work or be safe.
posted
Sorry, but I don't see anyone referring to newbies as "stupid". I just think it would be easier for someone new to lyme to have the information organized and not all lumped together. That's all. Personally, I was really overwhelmed when I was first diagnosed.
I think our ILADS docs would like to see that their basic protocols are at least considered by this forum to be "conventional" lyme treatment.
Many docs use alternative treatment as well. I don't think we will be telling people what to do by attempting to make the forum easier to go through.
Posts: 345 | From East Coast | Registered: Apr 2008
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