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» LymeNet Flash » Questions and Discussion » Off Topic » Possible Additional Forum (Page 1)

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Author Topic: Possible Additional Forum
Jenifer
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***UPDATE***
Happy New Year!!

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.).

Polling will end 12/31/2008 at 11:59PM.

[ 01. January 2009, 07:24 PM: Message edited by: Jenifer ]

Poll Information
This poll contains 1 question(s). 149 user(s) have voted.

Vote Now     View Poll Results


--------------------
Jenifer Stolow
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Lymetoo
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surprised anyone found it back here. Could you post it in Medical too??

I vote for two forums.

--------------------
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Opinions, not medical advice!

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SoSublyme
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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.
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lymielauren28
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I think two forums is an excellent idea!

Lauren

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randibear
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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.

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Tincup
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Do I get one of those nifty stickers that says, "I VOTED"?

[Big Grin]

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JillF
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oh
i think it's a great idea

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AZURE WISH
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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.

Just my opinion. [group hug]

--------------------
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Barby
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I completely agree with Azure. There is so much going on here as it is.

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bettyg
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GOOD! this has been discussed and cussed for the last 4.5 years.


yes, i like the idea of separating traditional vs. ALL the altneratives...

glad a poll is underway! thanks jenifer! [Smile]

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Robin123
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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 ]

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Looking
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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.

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jmoosie
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I agree with Azure. One group is simpler to know where to post, where to look for, intermingled symtpoms and protocols.

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Lonestartick
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I vote for two forums.
[woohoo]
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)

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TX Lyme Mom
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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).

http://www.ilads.org/burrascano_0905.html

Eventually, everyone will get the hang of it, I'm quite sure. "Practice makes perfect," you know.

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bettyg
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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! [group hug] [kiss]

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bejoy
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Neither [Smile]

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!

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carly
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TX lyme mom said:

quote:

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.

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Blackstone
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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.

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robi
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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'

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Hoosiers51
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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.

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TX Lyme Mom
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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.

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nomoremuscles
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I think this is foolish.

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.

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Hoosiers51
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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.

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hiker53
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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. [bonk]

Hiker53

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Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

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Tincup
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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."

A fight HERE?

[lol]

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SoSublyme
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TX lyme Mom,

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 ]

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nomoremuscles
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SoSublyme said,


"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.

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bettyg
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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! [Wink]


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
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Would treatment that includes Artemisinin be "Conventional", "Alternative", or "Herbal"?

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luvs2ride
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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!

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When the Power of Love overcomes the Love of Power, there will be Peace.

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riverpatrol
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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.

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SoSublyme
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Hi luvs2ride,

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 [Roll Eyes] ) 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 ]

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nomoremuscles
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SoSublyme,

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.

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SoSublyme
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NoMoreMuscles,

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! [Wink]

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bejoy
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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

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Tincup
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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!

[Eek!]

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Wonko
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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.

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DebAz
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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.


D

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lymeHerx001
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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.

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bettyg
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tincup, [lol] [Big Grin] [lol] idsa...
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Blackstone
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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.

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SoSublyme
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Blackstone,

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! [Cool]

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charlie
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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

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treepatrol
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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.

Newbie Links

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tcw
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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. [Smile]

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luvdogs
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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.

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Tincup
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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.

[Big Grin]

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nomoremuscles
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Great post TC!

You summed up so eloquently exactly what I would have liked to say.

You make it clear that this is not really about "helping newbies" or sorting out "too many confusing choices", but rather about battling ideologies.

Who gets to decide what is alternative?

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SoSublyme
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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.

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Blackstone
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Tincup - I understand what you're saying. However, what you are speaking of seems to confuse protocol validity for treatment item validity.

Its true, nobody knows the best protocol that's a catch all for treating this disease complex. However, there is a marked difference between something like doxycycline and some sort of energy emission machine. We know for a fact that doxy works within certain parameters. Independent studies have verified that if bacteria rely on "X", doxy messes with expression of "X", thereby killing the bacteria. That is why it is a broad-spectrum antibiotic. The methodology of action of the drug itself is well known. It has been independently verified, standardized and so forth.

An IDSA person may say that doxy isn't needed for lyme, or that the dosages should be different, but they won't contest that the drug ITSELF is simply snake oil, or doesn't have the properties it is said to. Nobody would ever characterize doxycycline as an "alternative" therapy. There are off-label protocols certainly, but this doesn't make it "alternative medicine".

Compare this with rife, homeopathy, some sort of laser machines or whatnot. These therapies haven't been independently verified, and many objections arise from the fact that the treatment in and of itself isn't valid. For this section of alternative medicine, there is questionable or non-existent evidence that these treatments are able to do what they claim, or carry the properties they are supposed to.

(There is also the "middle ground", as I mention in my Category 2).

I think it is important for patients to know this, that these therapies in and of themselves have at least one more "unknown" variable.

We can talk about protocol all day long - that's just fine. I don't think boards should be divided by that, but rather by the treatments themselves. If you want to talk about the validity of a straight course of Mepron/Zith versus pulsing, that still belongs in Category 1 because Mepron and Azithromycin are items with known, valid methods of action. If you want to talk about different rife frequencies and schedules, you do that in the forum for Category 3- since rife itself falls into the "has not been proven, experimental" category.

Does that make sense? Or maybe I could explain things better?

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Meg
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You did a fine job Blackstone, I agree.

I'm putting up the link to the Success Story thread. As I read those successes, the commonality between 99.9% of them is aggressive antibiotic treatment.....

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=3;t=015820
Accessing Lou B's first post for links makes this a much longer thread.

--------------------
Success Stories---Treatment Guidelines

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kam
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Just wondering if someone would post on here how it is going after thay vote.

When I voted at the beginning the majority agreed with seperating medical.

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Tincup
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Hey Black,

Thanks for responding.

I understand your explanation... and would like to comment...

Grits and fried eels.

When getting an opinion on grits or fried eels.. or anything else...

We must first consider the source.

Some folks turn their noses up at grits, never giving them a chance. Some have eaten them as a staple for years.

(May I say... I know it is late, and truth is... this Santa is exhausted.. so I hope this is making some sort of sense. If not... let me know and I will try to clarify when the brain is more rested.)

Anyhow..

Example- Being brought up in a traditional medical world... I was told that no one should go to a chiropractor. I was told they would hurt you.. break your neck... cause you to have a stroke.. blah blah blah.

That was the "standard" and accepted as truth. Many still think this way.. but then again, many use chiropractic as their main source of health care.

But... for many years chiropractors were considered to be about the same as snake oil salesman. And even now they lack medical literature proving what they are doing works and how/why.

So... does chiropractic fall in the first group or the second or third? They take Medicare, insurances, are licensed, etc.

If you think yes they do.. is it because of your past experiences and knowledge on the topic.. or not?

If you don't think they belong there.. might someone whose father is a chiropractor think the same way you do?

I think having sections here that are attempting to sort out this stuff is going to be a HUGE problem for folks.

Where do we post what? I'm not into reading more rules and guidelines as to what can and can't go where. There are other boards that have moderators who act like they are on steroids and go ballastic when things aren't sorted into the proper categories.

Do we REALLY need to be so rigid? This isn't the NEJM or Webster's dictionary. It is a chat room.

Let's have some fun... flap our wings a little and fly. That seems MUCH better than being scolded.

It would be a shame if the post takes twice as long trying to figure out where it goes... than writing it.

Another example...

Let's assume for a moment that there is a young lady that has lived on a vegetarian diet all her life, used herbal remedies, lived green before "green" was cool, etc. Basically, her momma don't dance and her daddy don't rock and roll.

Perhaps she is a native American. (Also folks with certain religious beliefs might fit into this category too.)

To her the doxy is offensive to the body and dangerous... if proven to do X and X in studies, or not.

So is doxy considered the alternative and not the accepted practice in this case? From HER view point?

You and I might think that antibiotics are the way to go... but do we have the right to say anything chiropractic related should be sorted out as "experimental"?

```````````````````````````````````````````````

Ya know... I can't see your post as I type this.. or the other one I wanted to respond to... and I am fading faster than a bowl of ice cream in a sauna.... so I will return later to reread and make more of a mess of what I am trying to say. HA!

In the meantime.. Merry Christmas.

[Big Grin]

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Tincup
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Nomoremuscles..

I just reread your post real quick.

You said.. "Who gets to decide what is alternative?"

Well, dang it all. I wish I would have reread it and absorbed it all before I posted about eels, grits and chiropractors.

THAT is the point I am trying to make!

BINGO!!!

Thank you!!!

And I can't imagine what the moderators job will be like when the arguing begins as to what is alternative and what is not.

[Eek!]

[Big Grin]

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www.MarylandLyme.org
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Tincup
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Hey sosub..

You said... "Sorry, but I don't see anyone referring to newbies as "stupid"."

Some of the folks complaining that new patients will get all tangled up and not be able to figure out what is good for them or not (of course their thought is from that persons perspective only)... well...

They imply that new folks are stupid. I've even seen it written that new patients don't know enough to be able to make their own decisions after reading what is posted... etc...

And they insist (and even make it their main mission in life) ..

That new patients need to be warned by the Chicken Littles... aka self-proclaimed saviors for the Lyme world... that the sky is falling, the sky is falling if they don't drop to their knees to praise all antibiotic therapy protocols above anything else.

````````````````````````````````````````````````

You said... "I just think it would be easier for someone new to lyme to have the information organized and not all lumped together."

Maybe we could have medical abstracts in one spot.. and the rest a free for all?

[lol]

Actually, maybe it is the name of the new categories that will make this plan less than desirable to many?

Also new folks can easily do a search to pull up whatever topic they would like.. and all the posts would be right there.

And we need to keep in mind...

When we consider the new folks.. we also need to consider the old ones who have been posting a LONG time and must stop to figure out where they should say what, etc.

It would be near impossible for many of us to only give partial "category correct" answers in specific sections as they are now labeled.

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You said... "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."

That is a kind and generous thought... but I think the ILADS docs have a lot better things to do than worry what is going on in a chat room.

And another point.. some LLMD's don't want their patients on here.. nor do they want their protocols discussed.

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You said... "I don't think we will be telling people what to do by attempting to make the forum easier to go through."

Actually we will be adding more rules to the mix. Rules that make no never mind when it comes down to the important things in life.

Merry Christmas.

[Big Grin]

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www.MarylandLyme.org
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randibear
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well for me -- what if i call say "cat's claw" alternative but someone else calls it homeopathic??

what do i call rife? medical or just hearsay...or alternative...

are drugs conventional or homeopathic?

do some people call herbs drugs or do you call them conventional?

i don't know -- it's all a matter of interpretation, and we all call things different names...

so for me, i love grits...but somebody else hates them...

i like having to one place and just look down and see what applies to me, if it doesn't i skip...

trying to sort back and forth and look for stuff is, quite frankly, beyond me...and then mentally trying to sort it out, is well, something else...

--------------------
do not look back when the only course is forward

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Blackstone
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Back again. Hope everyone had a nice holiday.

I don't have everyone's comments below, so I'm sorry if I miss something.

The first thing I want to address though is a point that Tincup brought up about preference and point of view. I understand that to some people certain therapies might be "normal", but we can't afford to subjectively define our categories. If a person was raised in an indigenous African tribe somewhere, they may find that a witch doctor shaking rattles and pouring animal blood might be their "normal" treatment, while an antimalarial drug is positively foreign! This doesn't change the fact that the Antimalarial drug has a proven effectiveness and track record, while the rattle-and-chicken-blood accompanied incantation does not.

We want our disease to be taken seriously, don't we? It is for this reason that we need to be as objective as possible in all facets of treatment to "prove" that we're going through logical, rational steps to a cure. This includes characterization of treatment methods (but for our cases, not protocols, to limit the variables and the number of boards we'll need!) as conventional, complimentary, and experimental.

I'm not doing this to be belligerent or anti-"alternative". In fact, I want to see more of the currently category 2 and 3 items make it into category 1 through intense testing! That's my goal here, to differentiate therapies into logical groupings so that patients absolutely realize the status of the treatment they're about to undertake. This means more clear experimentation and discussion that advances science, in time moving more valid therapies into category 1 and putting a stop to patients relying on the invalid ones that are currently touted as miracle cures - wasting time, money, and health in the process.

In summation: A person's experiences do not change the fact that a treatment is, what it is. We can't afford to let subjectivity give undue weight to certain treatments, and instead rely on objective factors.

Also, don't forget - if someone because of their personal experience posts say, something in Complimentary/Alternative that should be in Experimental, a moderator can always move the thread.

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bettyg
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i can't see the 2 moderators we have now doing all this EXTENSIVE stuff of determining which forum this and that goes. they don't have enough time to deal with present format of this board.


i see more lyme rage happening for not getting it in right forum despite several warnings, etc. [Frown]

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Tincup
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Good morning Black...

Hope your holiday is going well.

It is nice to be able to converse back and forth with you. And yes.. it is hard to post a reply when you can't see the other posts, so this time I copied and pasted.

I must have taken a smart pill this morning. But don't expect it to show through IN the post. HA!

[Big Grin]

After reading all of the well thought out posts... including yours.. I do believe you and I agree on this subject.

We both want .. well.. bottom line... a cure. And we want folks to have the best treatments available without interference from the IDSA.

And I do believe BettyG has hit on one of my points... as well as several others... stating it would be very difficult for moderators and especially all of us to be able to sort through what questions and then what treatment suggestions go where.

I believe what you'd like to see here is an excellent suggestion and would be highly advised for a doctor's board that is discussing tick borne disease treatments.

I do feel it is quite rigid and a highly advanced approach though for a patient's "chat room" that is frequented by mostly non-medical professionals from all walks of life who are trying to survive not only Lyme, et al... but survive period. And it is difficult to do that when there is a full-fledged war going on in the medical profession over "our" disease.

You, personally, could probably put the round peg in the round hole and have things in the right sections if you tried very hard and concentrated on each post. Possibly a few others here could do the same if they are as well-versed on the topic as you are.

But to be truthful... I (maybe others too?) barely have time and energy to do the research required to keep up on all the different things associated with TBD's...

Much less have the time or the "want to" to wrack my brain trying to figure out if taking L-Glutamine (for example) is written up in the literature as a treatment for anything specific, is fully documented and what group it would fall under.. even for off label use or whatever...

Even though many LLMD's prescribe it (OTC) and many patients benefit from its use... where does it go?

It doesn't "treat Lyme" but it does help with some of the symptoms. It is an amino acid used by the body.. put into concentrated form and sold as a supplement.

Here is the problem....

Let's say Sally-Sue asks about gut and bowel problems. We could suggest a colonoscopy if she posted her question in the first category......

But then do we refer Sally-Sue over to another section to tell her about the L-Glutamine.. or to suggest belladonna- (from the plant and then it is mixed with traditional prescription meds)..

Or to suggest she might benefit from hyperbaric because X number of people have had good results who also had the same problem?

So it is not the concept I have problems with.. it is the ability of many of us (who struggle to not pop themselves in the mouth when trying to drink from a cup somedays) to put the questions and answers in certain places only.

From the get-go.. some of our most wonderful LLMD's have had to travel FAR from the traditional box to help some folks.. many folks actually... and they have been doing it for years because the truth is... there ain't no cure that is a one-size fits all coming from the "traditional" line of thinking.

Had these early LLMD's stayed within the "traditional boundaries"...

1. Lyme would still be considered to be a "virus" and no treatment would be provided.

2. People would continue to be told that you are immune from getting Lyme again, once you've had it.

3. More of us would be told there is "no Lyme" in this or that location or state... ending up in a misdiagnosis.

4. Many folks would have eventually (maybe) been given 2 weeks of antibiotics and that is it.

You get the picture, I'm sure.

Back in a minute...

[Big Grin]

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Tincup
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And how "traditional" is traditional?

Which studies are good and which are bad? Who makes that determination? And do we all suddenly abide?

The ones "officially" in charge of our nightmare (IDSA) state the following- and note where THEY draw the line.

BTW- If anyone here is doing any of these meds or things they have listed that we CAN'T do... do WE all need to be focused in section 2 or 3??

If you think not... aren't WE then acting like the bosses of deciding who gets what (and where is OUR medical license).. like the IDSA buffalo heads haphazardly do now?

Poor moderators.. where do THEY draw the lines on this simple LymeNet chat board when we can't figure it all out?

[Eek!]

The IDSA states... and the "traditional" world listens...

"Therapeutic modalities not recommended.

Because of a lack of biologic plausibility, lack of efficacy, absence of supporting data, or the potential for harm to the patient,

the following are not recommended for treatment of patients with any manifestation of Lyme disease:

first-generation cephalosporins, fluoroquinolones, carbapenems, vancomycin,

metronidazole, tinidazole, amantadine, ketolides, isoniazid, trimethoprim-sulfamethoxazole, fluconazole, benzathine penicillin G,

combinations of antimicrobials, pulsed-dosing (i.e., dosing on some days but not others),

**** long-term antibiotic therapy****,

**** anti-Bartonella therapies*****,

hyperbaric oxygen, ozone, fever therapy,

intravenous immunoglobulin, cholestyramine, intravenous hydrogen peroxide,

****specific nutritional supplements****,

****and others ***** (see table 4) (E-III)."

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So by US adding what WE think to that picture and altering it to suit OUR likes and dislikes... who IS writing the rules? Are they medically sound? FDA approved? Insurance accepted?

And consider this...

There is a war going on all around us.

Do we need to create more stress and confusion for everyone?

If folks don't like the suggestions given.. or the opinions posted...

Just pass it on by and let those who may benefit be given the opportunity to decide for themselves.

Then everyone... dance.

[Big Grin]

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Meg
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I voted to separate the forums/part the sea/and let the little fishes swim where they may.

I'm a big supporter of LLMDs and the antibiotics they prescribe that have saved my life. But lately, this board has become difficult at best coming from this place.

Because I answer posters in the Seeking Forum, I'm pretty upset by those seeking a Dr who are increasingly asking for alternative Drs as opposed to LLMDs for a first appointment, no, they demand them.

When and why did alternative thinking become more desirable than conventional?

Separating the forums would at least separate the clutter of the board for those newly infected/older infected and give some definition to the board.

I don't think for a minute that the moderators haven't thought through how to implement this, and I'm positive they would never ask for a vote unless they had.

The new forums could be predominantly antibiotic and predominantly alternative, not exclusively such, with some guidelines.

I'm sure you will be able to post on both sides of the forum, as long as respectful.

This is not a black hole we're falling into, it seems to be a win win for everyone and more peace and quiet for us all...moderators included.

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Success Stories---Treatment Guidelines

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Tincup
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Hey ho Meg...

You said.. "Because I answer posters in the Seeking Forum, I'm pretty upset by those seeking a Dr who are increasingly asking for alternative Drs as opposed to LLMDs for a first appointment, no some demand them. Alternative in my opinion should be a last resort, not first."

HIGHLIGHT the words... "in my opinion".

I'm not pa hicking on you... it's just that you said it last.. so I will comment... and I don't know how to say this nicer.. so I'll blurt it out ... asking for forgiveness in advance should I offend anyone.

First of all.. that statement could have come directly from the mouths of Bumsteere and his butt kissing gang.

Making someone go in one direction rather than another by denying them information or making them search harder for it.. or degrading it publicly .. or by burying it..

Or saying YOU think they must do it YOUR way even when they indicate they want to do something else...

Well, that isn't right.

It seems like patient's rights are being violated or at the least compromised... and...

This seems like a form of censorship or dictatorship to me.

We fight the IDSA every day to prevent this from happening and so we have a choice in our health care and can make our own decisions....

And then some folks want to make it their way or the highway?

Eh?

Again, I am not pa hicking on you.. just the idea of making the "other stuff" you may not like sit in the corner when it has the right to be there too (as much right as ILADS stuff does).. and patient's have the right to read ALL the information out there if they want.

[Big Grin]

Oh beautiful, for spacious skies, for amber waves of grain...

[Big Grin]

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www.MarylandLyme.org
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Meg
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You said:
Making someone go in one direction rather than another by denying them information or making them search harder for it.. or degrading it publicly .. or by burying it..


I do hope you're not accusing me of not helping those who are looking for alternative Drs??

That would be an untruthful and unfair statement, and I know you know how hard I work in that forum. I'm sure you wouldn't do that.

You say there are posters who are denied information, forced to go in one direction, censorship, dictatorship, etc, etc.

How does this manifest itself here? and how does this pertain to the forums splitting??
I don't see a correlation.

You talk about the "poor oppressed"....but the question begs, which group is truly oppressed on this board??

Depends which side you're on, Eh?

Even if we weren't dealing with differing views on how to treat this disease, it would be a good thing to lessen the clutter on the overworked Medical Forum.

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Success Stories---Treatment Guidelines

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Tincup
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Meg said..

You said: "I do hope you're not accusing me of not helping those who are looking for alternative Drs?? That would be an untruthful and unfair statement, and I know you know how hard I work in that forum. I'm sure you wouldn't do that."

You are right. I wouldn't do that.

And yes.. I know how hard you work. Unbelievable. Patients are very thankful.

The mistake was all mine. So sorry. I reread the post and my focus was on the IDSA actions but I certainly didn't bring that across properly, did I?

I was comparing what they do .. my words above... to the fact WE don't want to do the same. By not wanting folks to go to alternative doctors first (a personal opinion)... that is skirting on the same wrongs the IDSA does.

Hope that makes better sense?

I did say I wasn't picking on YOU... twice I think... it was the concept of what they do and what we can't do.

We can't take away the choice to decide what we want for health care options.

But I should have .. could have... explained it MUCH better.

My fault... sorry.

You said.. "You talk about the "poor oppressed"....but the question begs, which group is truly oppressed on this board??"

I can't see my post.. but did I say the words, "poor oppressed"? Or were you just using the quotes for words I didn't actually speak? And I am sorry I don't know the answer as to who or what is truly oppressed. You've lost me.

Since the rest of your post is assuming that I was speaking about something I wasn't making myself clear about... I won't respond.

Ok?

[Big Grin]

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Meg said...

"I do hope you're not accusing me of not helping those who are looking for alternative Drs?? That would be an untruthful and unfair statement, and I know you know how hard I work in that forum. I'm sure you wouldn't do that.

You say there are posters who are denied information, forced to go in one direction, censorship, dictatorship, etc, etc.

How does this manifest itself here? and how does this pertain to the forums splitting??
I don't see a correlation.

You talk about the "poor oppressed"....but the question begs, which group is truly oppressed on this board??

Depends which side you're on, Eh?

Even if we weren't dealing with differing views on how to treat this disease, it would be a good thing to lessen the clutter on the overworked Medical Forum.

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www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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oxygenbabe
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Bad idea. I probably will post less not more. I don't want to have to bookmark two boards.
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nomoremuscles
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Meg said,

"I'm a big supporter of LLMDs and the antibiotics they prescribe that have saved my life. But lately, this board has become difficult at best coming from this place.

Because I answer posters in the Seeking Forum, I'm pretty upset by those seeking a Dr who are increasingly asking for alternative Drs as opposed to LLMDs for a first appointment, no, they demand them.

When and why did alternative thinking become more desirable than conventional?

Separating the forums would at least separate the clutter of the board for those newly infected/older infected and give some definition to the board."


I'm not sure I'm getting the line of reasoning here.

If what you say above is true -- and I have no reason to doubt it is -- then wouldn't splitting the boards make the problem worse?

It seems to me that if, as you say, new members are demanding alternative doctors, wouldn't these same new members go immediately to the newly formed "alt board" rather than the "traditional"? And if they do go to the new alt board, wouldn't they then miss all the great ILADS info (that we all agree) they should get?

How would that help?

With one forum alt-minded patients would see the ILADS info, the info that saved your life, whether they liked it or not. True, they could scroll by -- but all the wonderful success stories are right there for them stumble upon.

And one last thing, another poster (sorry, too tired to go back and see who it was -- no disrespect intended) suggested that most all the success stories were from heavy antibiotic protocols. That is probably true. But most all the failures were from those very same therapies, too. The fact is, those therapies are what most of us have relied upon -- some getting well, some improving, some getting a bit better, some getting worse, some relapsing ......

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bettyg
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i don't know if i can vote again or not, but will attempt to.

FYI, ONE VOTE ONLY; so think carefully before voting!


my 1st thoughts were SEPARATE boards, but after reading ALL comments; the moderators are going to be swamped and headaches galore of which posts go here and there; more lyme rage and i don't want MORE RAGE. i want NO RAGE here.


so my new vote is KEEP as is, and i will continue to SOB, SCROLL ON BY, those i have no interest in !! a win win situation. [Smile] [Big Grin]

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SoSublyme
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Lots of great ideas here and very interesting viewpoints.


Tincup,

In response to my concerns you said "ILADS docs have a lot better things to do than worry about what is going on in a chat room." Actually, the llmds that I have spoken with are very aware of lymenet, have checked it out and were put off with some of the more "far out" treatments they saw recommended here.


Also, since joining this forum, I have read several posts from people who have asked their docs to check out lymenet only to have the docs tell them they found a "bunch of crazy ideas" on here.


I'm sure you are concerned about the image of lyme patients and lyme activists in the medical community and the political arena. I think most people on this forum have experienced, at one time or another, negative responses from family, friends and certain doctors regarding their lyme diagnosis.


I believe lymenet is more than a "simple chat room" as you call it. How could it be when it offers opportunities for learning, support as well as activism?


I think we need to publicly support our llmds and show our gratitude for the risks they take for us every day. That is another important reason I believe the board should be split. Our doctors should know that we, their patients, believe that what they are doing should be the conventional treatment for lyme.


Yes, doctors do check out lymenet and so do people unfamiliar with lyme. I would like to see our llmds' conventional treatments in the first section of the medical forum. We need to make every effort to have the world take lyme more seriously, even if "just on a chat room".


Tincup, you said "some llmds don't want their patients on lymenet". On that matter you are correct...they don't want their patient exposed to what they consider to be "far out" or even dangerous treatments (I have heard this from several docs).


By separating out the forums, maybe more docs would feel comfortable with lymenet. I know doctors as well as patients that would like to recommend lymenet but are hesitant to do so in its current state.


As far as concerns about confusion about where to post, I really don't think it is a life and death situation. No one needs to be policing the forums for posts in the wrong place. For the most part, people will figure it out or come close enough.


If someone gets it totally wrong, so what? I'm not going to be telling them to move it. It's just not a big deal. Let's just try to get the MAJORITY of the posts separated into the forums where they would belong.


Or as "Just Julie" said on the thread in Medical, just post where you feel more comfortable if you are not sure. I really don't think anyone needs to get worked up by a post out of place.


This is such a great opportunity to use this forum to thank our llmds for all they do and to take a positive step to bring about the acceptance of chronic lyme patients as a real problem (and not the bunch of crazies that Steere, et. al would like the world to believe).


edited to add spacing

[ 30. December 2008, 12:55 PM: Message edited by: SoSublyme ]

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Tincup
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Sosub said.. (Say THAT three times fast...) [lol]

"Tincup, In response to my concerns you said "ILADS docs have a lot better things to do than worry about what is going on in a chat room." Actually, the llmds that I have spoken with are very aware of lymenet, have checked it out and were put off with some of the more "far out" treatments they saw recommended here."

I can understand someone might say that.. but the LLMD's I've sent here and shared posts with over the years know that this is not where they should be getting their hard and fast medical information from. They know they have thousands of other sources from which to do that.

However...

If you'd care to share the names of all the LLMD's you've spoken to with me who are "put off" by our chat room discussions, I'd be happy to contact them and explain to them this is a chat room and this is were we come to share, let off steam and help each other.

It is not intended to be a product of the CDC grant programs... nor an official source of information for doctors to abide by.

It is a chat room. Lou and his family provide this forum for us all.. the Lyme patients.. and lovingly have done so for years.

I know Lou is certainly smart enough and generous enough.. and if he wanted a doctors chat room or a place for doctors to come for scientific information... he could have set something like that up.

But in my mind, LymeNet is for ordinary everyday patients chatting with other patients. When I come here I am not expected to wear my Sunday best and be a representative of the community.

We are not suppose to be examined as if we were in a sterile fish bowl... with critics pointing fingers at every move we make. If they are doing this... like some of the IDiots do... they need to get a life.

You said.. "Also, since joining this forum, I have read several posts from people who have asked their docs to check out lymenet only to have the docs tell them they found a "bunch of crazy ideas" on here."

Right!

There are crazy ideas on here. I've had a number of them myself... and questioned a number of them too. And that is ok.

This isn't the place to be if all you are looking for a bunch of gussied up facts and medical resources. There really are many other places to get that kind of information.

You said.. "I'm sure you are concerned about the image of lyme patients and lyme activists in the medical community and the political arena."

When I am in those arenas (political, medical) I try to conduct myself appropriately. It doesn't always work, mind you, but I do try.

When I am here.. which has been a second home for thousands of us over the years... I LIKE the free exchange of ideas and feeling comfortable about talking openly.

So attempting to make LymeNet something it is not, just to try to please a few unknown and obviously misinformed LLMD's that don't like some of the ideas here.. won't work.

Heaven knows I've tried to make it work... and so have others.. but we can't seem to get rid of the CRAZY people here.

[lol]

Sooooo...

Anyone not wanting to do what the Romans do when in Rome... might just want to find somewhere else to play.

You said... "I believe lymenet is more than a "simple chat room" as you call it. How could it be when it offers opportunities for learning, support as well as activism?"

You are right. LymeNet is SO much more than a simple chat room. It saves lives. It comforts those who are ill. It brings hope to those who had none...

And sometimes it comes up with solutions and ground breaking ideas that help others.

But it is NOT a place for LLMD's or anyone else to come to just for medical information.

We are NOT even qualified to dispense medical advise. Period.

You said .. "I think we need to publicly support our llmds and show our gratitude for the risks they take for us every day."

Absolutely!

And I would bet the ranch that I am as much or more supportive of our LLMD's than just about anyone has ever been, or will ever be. I feel I have shown them gratitude over the years, many times over, but of course, never enough or as much as I'd like to.

However... .

I do not believe that THEY have a burning desire for us to spilt our Lymenet boards up in an effort to promote one treatment over another... or to hide or diminish ideas they personally aren't 100 percent in line with at any given moment.

Heck, all good LLMD's also cross the line "medical line". They couldn't possibly shake too hard a finger at us. BUT... that is what they do and without doing that.. they would just be ducks too.

So the question is.... Where do each one of them draw their own line? And should WE be expected to walk THEIR line in OUR chat room?

We'd never be able to please them all if we tried... and members at Lymenet shouldn't be made to try.

LymeNet is here to provide for free and open discussion... not for bored LLMD's to gather medically sound information.

You said.. "That is another important reason I believe the board should be split. Our doctors should know that we, their patients, believe that what they are doing should be the conventional treatment for lyme."

For about $2.99 we can buy them a nice thank you card and be done with it.

We really don't need to rearrange our family chat room to prove anything to them.

Excuse me for a moment... please.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Tincup
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Otay...

I KNEW you'd be glad to see me back again! HO HO HO!

You said... "Tincup, you said "some llmds don't want their patients on lymenet". On that matter you are correct...they don't want their patient exposed to what they consider to be "far out" or even dangerous treatments (I have heard this from several docs).

In my opinion... saying that to me would go over like a lead ballon. Telling someone (or as you explained not wanting someone "exposed" to reading material)... who is looking to help themselves in the middle of a freaking Lyme war that we are all stuck in..

And trying to censor what they are reading, that MIGHT help them because NO ONE has all the answers...

Well, it SUCKS!

Being against someone wanting to read something is censorship .. and unless it is a child and we are talking porn or something similar....

That dog don't hunt.

That is the same in my eyes as telling someone to just stay stupid.

You said.. "By separating out the forums, maybe more docs would feel comfortable with lymenet. I know doctors as well as patients that would like to recommend lymenet but are hesitant to do so in its current state."

It's current state? That is the way it always is here. Some days worse than others... some days much better.. but it also depends on whose eyes and brains are forming the opinions.

And we know there are many more sites doctors.. if they are wanting their patients to know something they can't tell them.. can send the patients to.

You said... "No one needs to be policing the forums for posts in the wrong place. For the most part, people will figure it out or come close enough."

Actually.. there are people out there who complain.. some who aren't even members.. and they bother the moderators and others when posts are posted under the wrong heading. They have nothing better to do. I've seen, as have many others, fights break out or harsh words spoken over posts being in the wrong section.

You said.. "If someone gets it totally wrong, so what? I'm not going to be telling them to move it."

That's right. It will not be a pain to you or the other members.. but to the moderators. And they WILL get complaints from the whining babies.

You said... "This is such a great opportunity to use this forum to thank our llmds for all they do and to take a positive step to bring about the acceptance of chronic lyme patients as a real problem (and not the bunch of crazies that Steere, et. al would like the world to believe).

If that were the goal of Lyme Net.. that would be a fine idea. But I don't come here to thank the LLMD's.

I come here to be NUTS!

[Big Grin]

I do appreciate your opinions.. very much so. It is just that we don't see eye to eye on this one topic. Hope you understand.

--------------------
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www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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SoSublyme
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Tincup,

First of all, I think I should stop reading and/or posting after 1:00 AM because I can't understand half of what either you or I have said.


You said lymenet "is not intended to be part of the CDC grant programs"...??What.?..sorry, lost me there.


You stated that "this isn't the place for you if you are looking for gussied up facts and medical resources."


Well, I don't really want my facts "gussied" but I do hope to get medical information from this site. I've read incredibly informative posts from people that have really helped me.


You said "this isn't the place for LLMDs or anyone else to get medical information. Well, I too hope doctors are not coming here to get medical information....we are all in trouble if that is true! (I think you misunderstood me). But patients should safely be able to get info here.


I was just trying to say that docs would like to recommend a SUPPORT site for their patients, but hesitate to recommend lymenet.


I don't want to quote back to you all the other things on your post that confused me, but a couple of statements that were really unclear to me were something like "LLMDs have a burning desire to split our lyme boards" to promote some agenda and they want us to "Walk their Line"?? (Sorry, I am totally lost again...did you think I was saying something like that??? Then, no, no no, not me.)


And then you said something about "being against someone trying to read something" and censorship. I am guessing you mean me? Again, I am not sure where that is coming from.


I think a lot of our disagreement here is that we just don't understand each other. At least, I am not understanding alot of what you are saying and I think my post must not have been written very clearly. Maybe I write more clearly during daylight hours.


So, I'll try again, but just the basics:


I do not want to censor anyone. I would like to keep all content and have all kinds of discussions.


I would, however, like the discussions to be split into at least conventional/nonconventional.


I would like conventional to be on the first forum. (Yes, so new visitors would see that first.) That would have been a great help to me in the beginning.


As you said, I am not a complainer and I like to live and let live. No one wants to see the moderators burdened more, but they would not have put out this poll if they thought it was too much.


Tincup, you said about me..."I appreciate your opinions...very much so. You also said that I "may not belong here" and that I "might want to find somewhere else to play". This is at least the second or third time that you have suggested that I leave lymenet. So, which is it?? [dizzy]


I am getting a complex! [Frown]

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GraceT
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I would like to Vote, but am now Dizzy after reading these Pros & Cons - - I've swayed both for and against split of Medical Forum.

So . . . with the Search Tool option - I vote FOR a split. I tend to use it more often this month.

One Yes vote for the Split - Smiles, Grace

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SoSublyme
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Grace,

I wish my entry was as short and sweet as yours!

(Smiles right back at you.)

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charlie
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Remember for your votes to count you have to go to the first post on this thread and click the vote button....

Charlie

Posts: 2804 | From Texas | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
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