I've thought it over...here's what I think we should do.

This would answer the questions regarding "legit" vs "alternative".

I say we add another Discussion area called;

"Alternative Care"

This way when someone chimes in...we know it may be an "off-the-wall" unproven modality...and no one can complain.

If you are a registered user...or, a ghost on this message board...please; sign on now and add YOUR yes vote to my simple...yet well thought out solution.

And, I would also add that by replying to this message you are voting FOR this initiative.

In other words....no reply on your part means that you vote no.

A simple....GREAT!! or, Right ON!!! Is all I ask.

Your Always;
Middle Of the Road, I'll Listen to Both Sides...

Trout

------------------
Now is the time in your life to find the "tiger" within.
Let the claws be bared,
and Lyme BEWARE!!!
Iowa Lyme Disease Assoc. www.ildf.info

[This message has been edited by troutscout (edited 11 February 2004).]

[This message has been edited by troutscout (edited 11 February 2004).]
 

Gail
 

Also, as it is, I find it hard to track down some information that I know I've seen, but I get a million returns on when I do a search in Medical.

I've been hesitant about this because I've gotten so much good info about non-allopathic treatment from Medical and I don't want to see this info "quarantined".

But if there's a particularly important thread an "alert, see info in Alternative" can be posted to remind people to look there. And vice versa. And General seems to have become the "Alternatives" alternative posting place, anyway,.

And the names could be Medical-Pharmaceutical and Medical-Alternative (to avoid the "legitimate" issue)

[This message has been edited by minoucat (edited 12 February 2004).]
 

Chocolat
 

I'll sit back and inject a stupid joke now and then....
 

It might be beneficial for those seeking "modern" care to have a place to refer to and for those who are looking into "alternative" care to have a place for reference also.

frenchbraid

------------------
Stay positive. Smile. People care.
 

Or if someone was asking about sleep remedies - there is a lot of overlap here between conventional and alternative...many treatments and supplements that folks are using that used to be thought of as alternative are pretty mainstream these days.

Personally, there are already so many posts that I doubt I would be able to follow both forums as much as I'd like to...

in fact...I don't often check General - but followed your post from Medical here, Trout!

Not enough time in the day...

I missed the early discussion about this issue, so I don't know if I missed something, but thought I'd jump in!

Just my two cents...good to explore these ideas.
 

The reason would be things like heavy metal toxicity which I have, it not a conventinal treatment. My insurance compay won't pay for it or the canadian medical system. so chelation which is alternative is what I need and it would be nice to know if others have info etc.

Also environmental medicine which isn't mainstream and at times more in dept than medical.

I have seen more than a few people say they have metal toxicity, this is a real issue that needs to be addressed.

Also, lots of people incorporate natural treatment into treating lyme. Seem like everybody is taking some kind of herb as part of their battle with this. Lots of questions, and even Dr. B recommends it. New people would like to know, like who taking what and what works, which goes on in medical all the time.

Again, a great idea, I would really enjoy that, because it was my only avenue for health until I found an LLMD.

Lymiecanuck
 

quote:

---

Originally posted by charlie:
...OK but expect the biggest catfight yet over what is 'legit' or 'mainstream' or whatever vs what is 'alternative'.

---

------------------
oops!
Lymetutu

 

But!!!!!!!

It would be in "Alternative"....the Moderators...could 'move' the subject over.

Think about it....probably not as big a problem as you think.

The Medical Forum has become SO overwhelmed lately that I think a step like this IS needed irregardless...in the long-run what might happen is the people who consider themselves "alternative" would hang-out in their "click" on that Forum and the "Mainstreamers" would hang out in the Medical Forum.

Seems like a solution to me.

Trout

 

Yours Truly,

The Mind Reading,
Telekinetic,
Trout Dude
 

[This message has been edited by Mo (edited 11 February 2004).]
 

[This message has been edited by Mo (edited 11 February 2004).]
 

------------------

 

Many alternative treatments are quite legit and work well and many have had great sucess using them. I choose to go with a more mainstream approach becaue my HMO is willing to pay for it among other issues.

There are times when I have a particular question about some natural remedie or herb that comes up and it would be nice to have a more focused forum to have those questions answered instead of having them 1) get lost among the mass of other questions in medical 2) full of naysayers

If there is a good sound natural alternative for somone, like the lady who just posted about insominia she could easily be told to refer to "alternatives" or still given an alternative suggestion. Remember we are self goverened and this would only serve to help streamline things and remove some of the clutter.

Good thinking Troutscout

Sent
 

Like if I say- if you are having a really really bad day, stand on your head and sing

"hocus pocus help me focus".

It works!

Not alternative would be- if you are having a really really bad day, stop taking your medicine, run naked down the street, beat up your in laws and cover yourself in hot towels.

See?

Sure Medical and Alternative or Complementary are not fixed terms but nonetheless a space is needed. For some of us the medical paradigm doesn't work or we want to go down a different route.

The medical forum in any case is overloaded.

Wallace
 

Maybe we should call it "everything but abx" LOL!

Maybe I'm making things harder than they need to be, but I'm thrilled to death that my brain is working!!!!

cootiegirl
 

Let's make Trout our Emperor for a day and have him discuss this with the moderators to get their take.....

Whaddya think?
cootiegirl

[This message has been edited by cootiegirl (edited 12 February 2004).]
 

I worry that there will be lots who ignore this site and post on medical anyway, on threads that have already been started.

Sifting all this out would be a big job for the moderators, I think.

Ann - OH

Ann - OH
 

I should say, though, that one thing that's "clogging up" Medical is posts that just don't belong there, they aren't medical in nature.

I think that's at least in part because some people don't want to bother with reading General; or don't think their post will get read if it's in General because some folks don't go there. But my answer to that is, if it isn't Medical it belongs in General, whether ya like it that way or not. It's just an abuse of the system to declare that you don't have time/whatever to visit General, and then post non-Medical to Medical.

</rant>

What's Lou B have to say about this?

Dan
 

a toxicity problem in the body that slows or negates the effectiveness of an antibiotic? or

Should I go on Samento and stop my antibiotics? or

I stopped most of my antibiotics, except for doxy, but I keep my symptoms under control with ........ (a complementary th erapy)?

What do I do - my jaw and my teeth ache? Why?

Everything that, for instance, I have said on this board for a few years, would be put where?

I am afraid, healing of chronic Lyme and any chronic disease crosses over into many other therapies that are not necessarily mainstream to most people. The world is steadily learning about therapies that have been done in many parts of the world for many years and they are slowly being recognized as an adjunct to healing of chronic disease. Our body is not a box with separate compartments - most forms of treatment affect the total body.

Let's not create more specialties - mainstream medicine has enough specialties with one doctor never knowing what happens to the patient because he/she/it sees a doctor for this, a doctor for that ----

I do not think we can separate healing of Lyme into boxes. We all know it doesn't work. Every good doctor knows that by now.
Just take a look at Dr. B's website.

Take care.

P.S. I dislike the expression "alternative" to begin with. Nothing, not one single thing I did to get well would I consider an alternative. At least it was complementary; most I consider a primary treatment toward cure.

[This message has been edited by GiGi (edited 12 February 2004).]
 

Help trout Iam stuck on that fence you were on and as you said barbed wire

[This message has been edited by treepatrol (edited 12 February 2004).]
 

I think we need it all together.

My son and I are on intensive "mainstream therapy", but have gained invaluable help with alternative supports, not to mention my mile long favorites list where I save any alternative ideas that I may want to do later...

I think valuable help and info would be lost in the shuffle. By having to look into two separate forums.

We'll always have naysayers..but that doesn't change the fact that the key to recovery requires an individualized plan taking (often times) from both "sides"..I think the most effective recoveries meld the two..like..there shouldn't be "sides".

You can be the most granola type in the worls, and still sometimes require a mainstream therapy..and on the other hand, clinical therapies require alternative compliments and supports.

That's what a combined board on the enormity of these illnesses grts across, if you look at it with an open mind and a place to learn.

I think splitting it would also form cliques.

Besides..who would get GiGi? or Marnie? or Bob Tx?

Mo

[This message has been edited by Mo (edited 12 February 2004).]
 

Another forum? No. We would have the same problem. If someone does not agree, they will come on over and bash it.

If someone came on this board and bashed people on long term therapy, what would the reaction be? It is not "proven" that longterm abx therapy is effective, so would that person be considered a "troll"??? They would only be conveying what they have read in the respected journals AND what most MD's say...

I will go back to one word, Respect. If you have not tried it, please respect the other poster and don't bash it. Question it but don't be disrespectful about it.

After years of abx therapy and trying everything in the "Western World of Medicine", like many of us finding relief with alternative therapies, some of you bashers may end up trying "alternative therapies" too!

I used to be a huge skeptic and NEVER thought I would EVER go down this road...here I am!

I will say it again. It is all about RESPECT.

JJ
 

I think splitting it would also form cliques.

Besides..who would get GiGi? or Marnie? or Bob Tx?

Mo

I think the cliques are inevitable. Too bad

[This message has been edited by treepatrol (edited 12 February 2004).]
 

Nothing will stop people visiting or posting on both forums. Why is that a problem? It's just a question of giving people more space because there is more of us and there will be even more in the future.

Or do people imagine Lyme disease will decrease!!!

Healing thoughts,

Wallace
Healing thoughts
 

What would there be to learn?
We might as well stay at home and gaze into the mirror.

Sometimes, the most precious treasures are buried and hidden away
And not easily seen at the first glance.

We can all be a bit rough around the edges at times
It is only human nature.

But, our faults are also what make each of us
More endearing
More lovable
More personable.

Who can love a perfect person?

Please
Let us remember that each voice in this choir
Is unique
And each voice is valuable...

Melanie

Before my debilitating neurological illness, I was as granola as you can get. We're talkin' CRUNCHY!!

I handled almost all medical issues through herbs, acupuncture, and intense cleansing. For all my adult life..

I had wonderful results. Then Lyme hit. An acupuncturist, polarity espert, cranio-sacral Chinese herbologist..I think really one of the best in the counntry..whom I had worked with for years..looked me in the eye and said he thought I needed to go ahead with IV, and we could support therapy and detox as needed, more later...

My son and I both lost our minds to this disease..

And, if I was like that with myself, I was a thousand times more adement against toxic western meds for my kids.

I wouldn't even vaccinate them without finding a non-mercury sources.

Now I'm pumping myself and my son with long term IV meds and aggressive orals.

I really don't think we had a choice in our particular situation, but I still have enourmous respect and faith in the alternative.

I've been sort of forced to accept and learn that for some, it REQUIRES both. And..that many practitioners, both medical and alternative, don't "get" the concept yet. Or don't know how to meld the two..

I feel strongly that this forum has the wealth of info and potential to allow patients to study and utalize many therapies, and navigate recovery effectively.

An ND coupled with an LLMD would be the ideal..but not all of us can find that...

Mo
 

Dr. C supports what I have been doing with alternative medicine...where do I draw the line or make the division?

JJ
 

One about the abx treatment and other prescription drugs protocol.

And the other for the non-prescription, herbal, alternative protocols.

I just stopped my abx yesterday and would love to read about alternatives. But wading through the medical forum is a nightmare.

There is nothing wrong, IMO, with Eastern medicine, or alternative approaches beyond prescriptions.

I think we all need to be able to relay what we have learned/tried, in appropriate forums, and let the rest of us decide if it's for us or not.

We are all in charge of our recovery, whether mainstream or off the beaten path.

But I would honestly like to see two separate places for the two separate modalities.
 

Yes. A section on alternatives would be great!
 

So we need to be flexible if someone talks about heat therapy, in medical for example, that we don't jump down anyones throat. Or maybe heat therapy is medical? See what I mean.

Mel
 

-Some (most) people on LymeNet seem to have a hard time posting in any forum other than "Medical Questions"
-The ART/Rife/CS/vibrational assesment/Sylvia Browne/etc./etc. crowd are going to feel slighted; resulting in two infighting "camps" on LymeNet
-Only so much is known about Lyme, only so much is known about certain treatments. There are no clearcut lines regarding treatment.
-Mods on this board usually don't move threads to where they belong (side note: nor have they given us the "Success Stories" forum that we've asked for)
 

Again we are self-governing in this matter and no one will be "restricted" from posting something helpful from any fourum. But if I were to be seeking an alternative rather than an alleopathic means to treat a sx I would post in Alternative where people knowlageable in those areas would be more apt to find and answer my question knowing what kind of answer I am looking for. The reverse is true also.

This would not stop someone from answering a question about "why do I have digestive problems while on abx" in Medical with something like try acidolophis or yogurt even though these remidies might fall into the "alternative" heading for some.

Sent
 

Newbies need their basic questions answered, without all the confusion.

And yes, RESPECT would be the name of the game on ANY board!

------------------
oops!
Lymetutu

 

To help out the sheer number of posts in medical, why not have a section for abx and abx related medical questions and one for all others? This would allow the so called "alternatives" to stay with the "mainstream" medical, while narrowing down the subjects to be addressed. Of course, posters do need to remember R-E-S-P-E-C-T, as JJ pointed out
 

Kristyn
 

Lyme disease, as outlined by Dr. Burascano, Dr. Jones, Dr Stricker and the likes is a systemic disease that needs a systemic approach. This approach should include a holistic approach to treating.

Holistic approaches are considered "Alternative".

If we start to break things in half (alt treatment in one, medical in the other...etc), and try to dilineate treatments are we no better than the ducks out there? They all play an integral part in our healing.

There is no absolute with lyme. It is a huge picture, with many intricate parts.

I for one, prefer to not have to jump from post to post, in different sections. I dont have time to hit "all the sections" on a regular basis.

Cave, when I first saw this I thought it sounded like it would simplify things, but then I got thinking about how often people will not even go to the "support" tab. So often they will post EVERYTHING in the medical. So they are not using the categories as it is. By adding one, I think it will just complicate and allow more reason to crab at someone. (why did so and so post here, they should have posted there...)

If we are going to split things, I would vote for splitting it to "adult content" with a password, and then also have a kids group, so the youngsters on here can deal with their specific issues (loss of friends, loss of activity, school/free time manangement etc...).

But thats my opinion...

[This message has been edited by Lishs mom (edited 13 February 2004).]
 

When I think alternative, I think of rife, vibrations, etc. My original thought on separating out the two (traditional and alternative) was because as I referred new people here, well.... instead of repeating it, here's what i said in the original thread:
*****************************
This has been such an interesting thread. I can see both sides, if you want to divide it like that. Maybe there are more than two sides, since we have heard from those who believe in vibrational healing and the like, some who are believers in hormone therapy (if I have it correct), others who are skeptics and are curious, and some who just flat out believe the vibrational thing is a ripoff.
Where my interest mainly lies is that I use Lymenet to educate people. When I run into someone and the topic of my lyme disease (or theirs) comes up, I try to give them a very brief overview of what I've learned. I always refer them to lymenet and Dr. B's guidelines, and then to the bulletin boards for more insight. I'm sure everyone else here does the same thing.

I have a very hard time establishing the credibility with those I run into in that:
1. most general practitioners don't recognize lyme
2. most non-igenex and non-MDL testing is a crap shoot, at best,
3. That 2 weeks of abx therapy, even if you get that, is insufficient
4. That probably about half of us NEVER had a bulls eye rash,
5. etc., etc., etc. you get the picture.

So I refer them here to get the details. Especially Dr. B's guidelines.

I worry that if they come here, and the first thing they see under medical is a thread on "how I got cured from lyme disease", they may look at that and go no further, and just say, well, cindy is a whacko and so are all these people here.

Now wait, don't flame me yet!! If someone is new to lyme and is sick, afraid, broke, and has very little physical and mental resources, they may stop at just that first thread! Most of us who have been here a while will read almost everything, or realize that there are many alternative or non-abx modalities being looked into here. But I think sometimes these things could really scare away newbies.

I'm wondering if we should have a place that's labeled "alternative or complimentary" or whatever is agreeable to those who might like to post and read there. Maybe for things outside the scope of Dr. B's guidelines. I don't think it would hurt to have more headings. With so much being lumped under Medical, the threads realy fly by. I'd love to see one, too, labeled Nutirition and Diet Therapy. Anyway, just my thoughts.

Cindy

*************************************

[This message has been edited by cindy_leigh (edited 13 February 2004).]

[This message has been edited by cindy_leigh (edited 13 February 2004).]
 

When spring arrives, I'll bet that thing will slow down again to a dull roar once more.

Let's take a wait and see approach. I'd hate for us to make a too hasty decision and then regret later that we did something that wasn't a good idea or not really necessary.

There are definitely disadvantages to splitting it because I tend to think of it as "adjunctive" or "complementary" or "integrative" therapy, instead of using the term "alternative".

I believe that a blended approach to therapy is going to be the way out of this quagmire, so I prefer keeping the Medical Forum just the way it is. If there's a topic that bores me or that I don't have time for as a top priority, then I simply don't bother to click on it.

Just because I responded to this topic, please do NOT put my vote in the "yea" column. I say table it for the time being, but if push comes to shove, then please count my vote as a "nay" for the present moment.

If it ain't broke, don't fix it.

I don't know a single person that got well from this disease on what most call alternative treatment.

The few that have improved and gotten well as far as I can ascertain have employed everything that is available. Let them speak.

In my mind there is no sense in separating this. In fact, the longer Lyme is becoming more of a factor to many more people, the more we will find that all forms of treatment have to be applied if we want to get results.

You can start with lymph drainage and colon cleansers. Do you want to tell me that once the milk thistle doesn't work for someone
(which may be part of Dr. B's recommendation - I forgot), then we have to move to the Complementary section in order to suggest other remedies.

If someone has a teeth problem/ache/pain, you have to say, come on overhere and listen to me here, I may have a suggestion for you under Complementary.

I think we ought to leave it as is. It seems to be working fine. Since I have been posting on this board since 2000, I have seen the contributing population change at least 4 times. Every time I came back from a longer absence/vacation, I found an almost totally new list of names. Is the rest just lurking? Who is complaining?

If there is a lot of material to read; if the posts are not identified properly as being interesting to a particular person, scroll down and go to what catches your eye. What is the problem?

I am only here on this board because I promised myself when I would be well to help point out some of the missing links to this whole Lyme Disease treatment. If you can name me anyone who is back to normal that has not utilized any complementary treatments, then I would say yes, it makes sense to split it up.

For me the subject is ad acta. Hopefully you can make up your mind soon and get on with the real thing.

Take care.

I like the idea of using the "generally accepted practices" of most LLMD's as a marker for the two.

ps: I'm one person who got better without using alternative treatments, (althoug I did try Prolo-therapy once but it didn't work at all for me).
 

and WHY?!

I think we'd all loose in that situation.

We need as broad a scope as we can get.

And to remember we all have the same goal, all overcoming similar obstacles.. and can gain invaluable gifts from our different perspectives and therapies. Be inspired ro look at all approaches.

Know that we do not know..

Mo

[This message has been edited by Mo (edited 13 February 2004).]
 

The few that have improved and gotten well as far as I can ascertain have employed everything that is available."

Ok, here's a data point for you: I've gotten well without the 'complementary' side, as long as we agree that eating yogurt isn't alternative.

(yes, Gigi, I know you qualified the statement by saying you don't know of any - but now you do)

Not that I don't see the value in those things, I do. But they aren't universally necessary.

You see, everybody's case is different. So blanket statements like that are never really valid, any more than saying anyone can get well with only antibiotics.

Dan

[This message has been edited by danq (edited 14 February 2004).]
 

Dan
 

It would be so wonderful for all the world if everyone were that lucky to cure Lyme Disease with abx and yoghurt. Are you the exception? Just think, we wouldn't need this board, and I would have a lot more playtime!

In fact, that's what I will do right now, hoping that you guys can come up with the right decision that is for the benefit of those seeking help.

By the way, someone above asked what's ART. It stands for Autonomic Response Testing.
I just recently discovered a great explanation of it on www.nihadc.com/ART. Just go on that site and follow the instructions to get from a short explanation to the more extended explanation of a couple of pages. It is really a good run-down of this superb diagnostic and treatment tool that my doctor developed over many years. Have a look.

Take care.

I am LymeBrat's husband.

I occasionally come here looking for info about lyme disease as my wife and 2 children all have it.

I think dividing the medical forum into "Alternative and Mainstream" would be very beneficial for those of us who are either new to lyme disease or come here occasionally looking for help.

I know I get so overwhelmed when I am looking for information and there are posts about all these different alternative treatments, machines etc. It is very confusing.

My opinion.

Dave
 

quote:

---

Originally posted by lymebrat:
I think dividing the medical forum into "Alternative and Mainstream" would be very beneficial for those of us who are either new to lyme disease or come here occasionally looking for help.

I know I get so overwhelmed when I am looking for information and there are posts about all these different alternative treatments, machines etc. It is very confusing.

---

Dave,
I must admit that your comment is the most convincing of all in favor of Trout's Initiative.

I'd be willing to change my vote from Nay to Yea, if and only if, we can agree to allow occasional comments as responses to topics into either forum without getting our feathers too ruffled over it.

In other words, topic headings could be segregated into two separate forums, but there should be wide latitude allowed about being able to suggest something complementary as supportive therapy under the "mainly abx" forum, and vice versa.

By that I mean that mention of abx in our replies under various alternative topic headings, whenever appropriate -- such as not taking magnesium together with certain abx because it binds them and inhibits their absorption. See what I mean?

Afterall, if a topic is getting too much attention in the wrong forum so that it is distracting to the purpose of that forum, then the Moderators are free to move it where it belongs.

The important thing would be to be considerate and polite and tactful and so forth, and NOT get riled up if someone feels the need to respond to an idea in one forum with a suggestion that applies to the main topic being discussed, whether abx-related or whether mainly alternative.

This suggestion for two forums could be done on a trial basis. Then, if the idea doesn't work out well or causes too much arguing over minor breaches, then we could agree to let things go back to the way they are right now.

Ultimately, the Moderators should have the last say about what's do-able and what's in the best interest of everyone here at LymeNet.

If this idea makes too much work for them, trying to resolve too many trivial disputes over the appropriateness of what topic (or response) fits in what forum, then we won't have anyone willing to do the job of moderating, now will we?
 

I vote in favor of a split.

For those who say they are "too busy" to read more than one section consider the math :

Currently let's say there are 20 posts in medical...

IF they are split - say 12 medical and 8 alternative - that's still 20 posts total either way.

Plus, as I see it (IMHO) if you are "too busy" to click a few button to swith over, this would help you focus on the area that bests fits you!

Above all, I agree, r*e*s*p*e*c*t for all!!!!!!!

Lynn LM
 

I, too, use this site to refer people who want to learn about what my whole family is going through. I also BEG sick, skeptical people to consider lyme as their diagnosis and check lymenet out.

BUT, lately, I've stopped giving out the site address because of these few, but infamous, "controversial" threads and "debates". One person who I urged to read lymenet was apalled by the bad pregnancy thread 6 months ago. Today she is still not considering lyme.

Here is my opinion for a simple change:

I think we need to keep medical as it is, but instead, add a NEW MEMBER section. This section could be right up top above Medical and state, as its description under the heading, something like..."for FAQ about Lyme Disease and links for new members".

I think new lurkers or new members would be tempted to click on this first, and BAM!, lymenet could provide a whole world of information and links, sort of like a huge "Tincups Links for New Members" (plus all the ones that others have compiled) except that it would be permanent, always at the top under NEW MEMBERS.

One wouldn't be able to post in this section, just give out great information that new members want. It should also encourages newbies to browse the other forums, teach them how to search old posts, how to utilize the Seeking a Doctor forum, and invite them to introduce themselves and post whenever they want. This would resemble sort of a generic "welcome", similar to the ones that so many of you are good at writing. Maybe... also include a definition of terms we use, a description of all the different topics that we discuss (antibiotics, diagnosis, HBOT, metal toxicity, candida, you get the idea). Also the symptoms list, Dr. B.'s guidelines, etc...

This is suggested as a way of funneling the new lookers through a basic education, if you will, and then to, of course, encourage newbies to click on any of the other forums to introduce themselves, post questions, respond to a question...

I just remember when I first started lurking here and I clicked right on medical, and the headings were like Greek to me!(ie: HBOT threads, ART, drug names galore, etc) NOW of course I know exactly what to click on and what to SOB, but when I needed basic information quickly it took several days to weed through what was not important to me at the time. Tincup's links for new members is great, but if it's not up on the first two pages at all times, I imagine new members don't find it unless they actually make a post and someone replies. This way, newbie info. will always be there plain as day.

Also, there are so many new folks looking and posting, often posting similar first posts (ie: "does this sound like lyme?" "what does my test mean?", "help me!!!", and so on. It would be nice to have a permanent place, easy for newbies to see, that they can immediately go to first. I see so many of you lovingly "reinventing the wheel" for each new member and, though it's nice to make it personal for each new poster, this must take a lot of energy out of many of you, listing the same great links each time, explaining the same thing over and over, etc.

Maybe by the time they wade through all the fantastic information in a New Member section, the site will definately ooze credibility right from the get-go for them. I remember almost not giving this site a second look because the first whole page in medical I saw was gobity-gook to my lyme-ignorant, foggy brain. It was just coincidence, of course, (and my bad luck ) that the day I became a new member, most of the threads were about "alternative" treatments in which I just wasn't interested...

Well, I probably lost most of you with this long-winded idea. Trout, sorry, it's late; mine's not very well thought out, or in condensed form, but I believe it'll lighten the load of those who give so much time answering the call of the new members and increase credibility.

Consider it...

Leslie
 

I vote yes.
 

I would like to acknowledge your well thought out reply.
IMO...this is the most important need to be filled for LymeNet.

Many here do work countless hours on board and behind the scenes in order to help new members with questions, doc referrals, and to simply offer much needed support.

Yes, the same information is given time and again, and it does at times become overwhelming, especially when there are so many new members showing up all at once or when those that usually fill this welcoming need are ill themselves.

Busy Bees Behind the Scenes: http://flash.lymenet.org/ubb/Forum1/HTML/022697.html
My fear is that some new members may slip through the cracks despite our best efforts to reach them all...or as you and others have mentioned, they may not even post at all when faced with the confusion of too many subject headings that are not understood or too many posts that contain needless bickering.

I too remember very well my first time here, and the feeling of not even being sure of what questions to even ask. Fortunately, for me, I was welcomed with open arms right away. I have tried since then to remember to pass that feeling on to others that I encounter, and I know that many here maintain that same philosophy.

With this in mind, a new member page as an introduction only, would be of great value. I would still like to see everyone post in the same forums already so generously provided for us at this time...this is how we learn from one another...by immersion.

I just wanted you to know that whether we see any change or not from this discussion, it is nice that you have acknowledged the hard work and dedication of so many of our members here...and I also appreciate your concern for the welfare of the new members as well.

Thank you!

Melanie

 

Thus, I'm changing my vote once more. First, it was Nay, then a qualified "Yea-maybe", but now I'm back to the idea that a special section dedicated just to the special needs of New Members would be great.

That would probably make it unnecessary to separate the Medical Forum into two parts.

One other suggestion is that "repeat offenders" who continue to violate The Rules should be disqualified from the privilege of posting -- either temporarily, while they sit on the sidelines and reflect on their mistakes, or permanently.

It doesn't matter how much valuable information someone has to offer if the net effect of his/her presence on the board is detrimental to the spirit of comfort and support necessary for healing.

LymeNet needs to be preserved as a "Safe Sanctuary for Healing" and persons who can't seem to remember how to spell the little four letter word T-A-C-T need to be excluded from the discussions by the Moderators.

I haven't been following those threads, so I have no idea who these offenders are right now. All I know is that TroutScout was pretty upset by one of them, and if anyone offends my good buddy TroutScout, then I'm offended too.

I'm not talking about the person who flames someone in a brief moment of Lyme rage or fog and then who promptly apologizes and edits him/herself. I'm talking only about member(s) who do not learn from their mistakes and who do not apologize when they have hurt someone's feelings -- whether through an unintentional misunderstanding or whether through a thoughtless comment. They deserve a chance to apologize and/or to clarify their comments and should NOT be excluded for such mistakes.

If the repeat offenders who violate either the letter or the spirit of The Rules were to be excluded from participation indefinitely or permanently, then the job of the Moderators would be much easier, and the atmosphere at LymeNet would be more welcoming to lurkers and to newbies.

Again, let me state that I have no idea who these offending individuals are because I simply haven't been clicking on all of the topics, so I'm oblivious to what all the recent ruckus was about which got TroutScout so peeved.

Here's the link to TroutScout's topic about his hurt feelings, for the sake of anyone who's confused over what I'm talking about to here. His topic was about another topic which had disturbed him, but for the life of me, I never could figure out which topic it was. (I gave up trying to guess which one because it seemed to be a waste of valuable time.)

http://flash.lymenet.org/ubb/Forum3/HTML/009428.html

 

Medical-Conventional Forum....
Newbie: Hi I'm new and I'm having tons of problems with (fill in the blank). Anybody have any suggestions?
Member: Try "such and such". There are other things you can try too. Go to the Medical-Alternative Forum and look up "such and such".

Building off this setup, is another idea: You could mirror the original post over to the new forum (not move it, just start a new thread with the same header and a referrence to the original post/poster) and continue the dicsucssion there, leaving the orginal post in Medica-Conventional for others to respond to it with more conventional stuff.

Thoughts anyone?
 

Nice idea, but it won't work, I'm afraid.

There aren't enough Busy Bees around to try to respond to pleas for help as it is now. In other words, we have to balance the needs of the newbies with the limitations of the "oldies" (the Busy Bees, whatever we're called).

If we have to keep trying to follow similar threads posted in two separate places, not only will we lose all our Busy Bees who try to help out the newbies, but we'll end up working our Moderators to death, too.

[This message has been edited by TX Lyme Mom (edited 15 February 2004).]
 

quote:

---

Originally posted by GiGi:
It would be so wonderful for all the world if everyone were that lucky to cure Lyme Disease with abx and yoghurt. Are you the exception?

---

He's not an exception. Most people are able to overcome Lyme disease (early or late) without "alternative" therapies.

Syphilis - most cases successfully treated with high-dose, long-term abx combos
Leprosy - most cases successfully treated with high-dose, long-term abx combos
Lyme - most likely pretty much the same, though more difficult to treat due to doctors' ignorance

"Everyone" is not going to get better without adjunctive therapies, but most do. It usually takes a long time (1.5yrs+), and a very high dose of multiple antibiotics.

Please keep in mind that this board is not an accurate representation of the whole of Lyme cases. I personally know over 10 people at work that got Lyme (some early, some late stage) and completely recovered strictly on antibiotics alone.
 

As for thinking back to my "first time here"....I can't remember that far back!! heehehee....

------------------
oops!
Lymetutu

 

quote:

---

Originally posted by StrengthToStrength:

"Everyone" is not going to get better without adjunctive therapies, but most do. It usually takes a long time (1.5yrs+), and a very high dose of multiple antibiotics.

---

I DID 20 months of very high doses of multiple antibiotics, Iv Rocephin, Doxy, Biaxin, Clindamycin, Rifampin, Flagyl, etc.

I am now MUCH worse than I was two years ago when I started the abx.

I think that most of the folks posting about alternative treatments HAVE tried 1.5 years of high doses of abx and are now looking for something, anything to make them feel better...I know I am.

We still have "old-timers" here that post General stuff in Medical all the time. Prehaps we can gently tell them that this subject belongs in General or Off-topic as jokes should be, and then the new comers will see that and follow.

But, if the "old-timers" don't stop posting non-medical in Medical, then how can we expect new poster's to do it?

New poster's have tunnel vision and only will read what their brains will direct them to at the time. Example, the red print over in the Seeking a Doctor forum. If you read over those posts, a lot of poster's there for the first time obviously have not read the red print.

I, personally, think that if the ones who disagree with the so-called alternatives would just leave those posts alone or state their opinions and warnings and then let it go, then there wouldn't be any of these problems.

But, there seems to be a couple of self-elected "no-alternative" police on this site that will not just let it go. I say, if not for those folks, then there wouldn't have been a problem with this in the first place.

Remember all the flack the ICHT poster's got when they first posted about ICHT.

And, even more recently, the poster's who posted about Rife.

And...now those posts seem rather tame.

I believe that those of us looking for answers after trying the conventional route, should have just as much right to post in Medical as anyone.

Went to my LLMD last month and didn't get a prescription for anything. I am so much worse than when I saw him first over a year ago...he gave me a new diet, the one about the root vegetables...talk about alternative.

The two visits before were for Prolotherapy on what we know now to be a torn rotator cup. We even did the Prolotherapy before any x-rays were proformed to determine if it was something Prolotherapy would not cure.

But, hey, that was from a well respected LLMD, right, so I should just keep doing what he says to do and keep getting sicker, right?

I really was sick my last visit and deseparately needed help and I got a diet...oh, well. A lot of good this is going to do me, since I have been vomiting since November, no matter what I eat, from above ground or below...doesn' matter.

Please do not consider my responding to this post as a vote for splitting up Medical into two forums...I believe that will be the end of LymeNet as we have known it.
 

Very, very well stated, gals. I'm proud to know you both -- and TroutMeister, too, of course who started this wonderful topic for us.

It's always good now and then to take a look at how we are performing as a group so that we can do an even better job.

If there's to be a special Forum just for newbies, then maybe the Moderators might select a few of the very best "newbie-greeters" to help host it, just ot get it off the ground.

Later, it could simply be a stand-alone section, without the necessity for interaction, after all of the material had been condensed into a simple, pre-digested format.

In other words, maybe Lou B. could designate a few folks here to help organize it by giving them "wizard powers" or by designating them as "moderators" just for that one section, until it gets off the ground. This would spread the work load around enough, in order to insure that it was the best possible work-of-art-and-science-and-love that we are capable of making it into.

After that, it wouldn't need much tampering with, unless of course, new ideas needed to be incorporated into it as we learned about them.

I guess what I'm saying is that, if the computer controller has the ability to open this section up to only just a few designated individual who can post there as "guest contributors" (rather than as moderators, because I like that term better for this purpose), then it wouldn't get flooded with everyone else who wanted to try to post questions.

The designated committee could play around with the topics in "rough draft" format until it was ready to be displayed for public view.

Now, the big question is, is it possible for Lou B. to open up a special section like this, reserved just for his hand-selected committee to participate in, but blocking anyone else from posting there, during its development phase?

If so, then the task sounds like it might be a lot of fun to work on without being too daunting for anyone. If not, then it might be somewhat more difficult to organize it.

I nominate, but not in any special order: Melanie, TinCup, LymeToo as "greeters" or as "organizers" to get things rolling. I've probably left out several other good folks, but these are the first names which popped into my mind. More than a half dozen folks on the committee might get too complicated, though. So, no one should get hurt feelings over it, if his/her name isn't in the group, because I'm sure that they could still contribute anyway, by sending private e-mails to someone else who's on the committee, in order to interject an idea to be incorporated into the various topics.

OK, enough. This idea might not even be technically possible to organize it this way at all, so I'm getting ahead of myself already, by starting to try to nominate a steering committee for organizing this project.

In case anyone's forgotten, the project I have in mind is a Special Forum for Newbies, where no one posts but where newbies can visit when they first join to learn the answers to basic newbie-type questions, before starting to post too many redundant questions over and over and over in the Medical Forum.

Remember the topic between Free2Reckon and SkeezixDoc -- where everyone agreed to stay out of it (except for popping it back up to the top so it didn't get lost) by not posting their ideas, so that the two of them could have an uninterrupted conversation, while the rest of us "lurked" and "eaves-dropped" but without posting on it ourselves?

Well, maybe we could organize a few topics this way. Then the committee could be expanded into several sub-committees, so that there would be more in-put for various topic. Each separate topic would have no more than 2-3 committee members who did all the posting, until the "rough draft" format was ironed out to everyone's satisfaction.

Outsiders, who weren't on a particular sub-committee, would still be able to contributed idea, but not openly -- because that would interrupt the topic flow -- but privately, back-channel. Or maybe openly, if things didn't start to get out of hand.

During the topic between Skeezix and Free2Reckon, everyone else enjoyed just being able to learn from the two of them by NOT interrupting their private discussion.

I'll bet this would work out fine for the purpose of this little "collective project", too -- if in the opening statement when each separate topic was announced, it was proposed that others not join into these Special Topic discussions.

The term "Special Project Topic" could even be inserted into each separate topic heading as a sign that this topic was supposed to be closed to non-participants.

PS -- I'm editing yet AGAIN:
Or maybe it wouldn't even be necessary to exclude anyone from the topic, but when the final format was agreed upon by the appointed topic committee, then the topic itself could be moved into another special forum for topics addressed to the usual questions asked by newbies, which would then be closed to comments posted by anyone.

[This message has been edited by TX Lyme Mom (edited 16 February 2004).]

PPS - and editing yet AGAIN:
Heck, why not let's just start a few new theads right here in the General Forum where we play around with various topics and sub-topics which are of general interest to newbies?

Then, when something good emerges that's close to final format, then we can ask the Moderators if they like it. If they do, then they can transfer the final draft, or edit the final work product first, and post it under a special section dedicated to newbies.

If we decided to do this, then let's agree to designate these topics with something in the subject heading, such as "Newbie Project", followed by the sub-topic heading, such as "how to do a search" or whatever the sub-topic is intended to be about.

Who wants to go first?

Actually, maybe the first topic needs to be a discussion of general organization, so that we have a rough idea of what sub-topics need to be included as part of this larger project.

OK, now who wants to start the ball rolling? Not I. I'm going ot be pre-occupied for the rest of this week and probably won't be posting much at all until at least this next weekend. TC's still out of town, I think. LymeToo has posted that she can't log on except for weekends now, due to changes in her personal life. And Melanie needs to rest and study.

So, who else wants to kick this project off?

Take your time and think it over. There's no rush.

[This message has been edited by TX Lyme Mom (edited 16 February 2004).]
 

StrengthtoStrength--I agree with you and I also somewhat disagree. I have known a good number of people who got over lyme easily. At the same time, I've begun to be suspicious of related problems that crop up later that people don't realize are related to lyme. It took me a long while to come around to this as I regarded it as paranoia on the part of lymies at first. But now I'm beginning to wonder. WHen I heard that Pauline Kael's only child had chronic lyme, and then I learned that Kael died of Parkinson's, I really had to wonder if it wasn't a late-stage response to lyme--. I have no idea, of course, I just now wonder about these things. Once you become aware of its range of symptoms, and potential latency, you can see a different picture emerge. Someone in basic good health with heart block or cardiac arrhythmnias, for instance, may not link it back to a case of "cured" lyme years earlier. I'm not saying this is common, but I do think it's more common than realized. I used to wonder, how could I walk in someone's garden in Connecticut for 15 minutes and get lyme so badly, and she and her hubby live there for 4 years and not get it? Then I realized they both had it and either didn't know or weren't admitting. He'd had knee surgery. SHe had migraines that paralyzed half her face pretty regularly, and occasional hip pain that put her in bed on percocet. She also had serious depression at times. There was no reason for these health problems. However they didn't have the other stuff, that I have, fibro and fatigue. I suspect she may have had it for years, and either not known, or had taken antibiotics for a few weeks and thought her problems were unrelated.

[This message has been edited by jen13 (edited 16 February 2004).]
 

I posed a simple "vote" and asked that there be NO further discussion.

Alot of things have been brought up however; even though the "Rules" of the thread said NO Discussion.

LOL...I Knew it would happen...haha. And, I am pleased.

The things that came up are all very valid points.

However, this proves my theory....the rules would be broken anyway. (AS they were here.)

Remember, all I asked for was that only those in support of the initiative post.

So....by posting here...you all voted yes!!!

I thank You For your yes votes...although many of you voted more than once.

Here's what I am driving at....we know the issues are broad....very complex indeed...and therein lies the problem; as a newbie I focus on what I can read easily and with facts I can focus on.

If we have another category added for "care"
it would only HELP me focus.

Call it what you want...the Newby Place or whatever.....but, we NEED to clean up Medical....and throw stuff back into General...I remind people when I can.

Medical is a broad term....however, it fit a specific need.

General is even nroader and can be used....for other things...like "complimentary"

as you can see...we ALREADY have a category just waiting for us to use it...its called "General".

Now....shame on all of you that did NOT respect the rules I posted for this stream....but, I always love a good debate.

Very Congenial and Self Contained...you all treated each other with dignity and knew that I wouldn't have it any other way on MY Subject.

And, The only one whom I shall slap on the wrist is, Lymie Tony Z; for saying I shouldn't pat myself on the back....since I hadn't "thought' This one out.

You my friend had NO idea who your were talking to.

Chow....and Good Work to ALL of You...what a GREAT bunch of People.

Trout Dude

------------------
Now is the time in your life to find the "tiger" within.
Let the claws be bared,
and Lyme BEWARE!!!
Iowa Lyme Disease Assoc.
www.ildf.info

 

I am not sure the General section is completely appropriate for these topics. General is also for support topics such as help with schools and family issues which don't relate to alternative therapy. Just my 2 cents.

My apologies for taking part in the hi-jaking of this thread...I know how aggravating that is!

But, I also know that you do enjoy hearing various perspectives as long as they are offered with dignity and forethought.

Still, that is no excuse...I suppose a new thread should have been started with the separate idea...

please forgive my mistake.

Love ya,
M
 

So, you were trying to "rig the election", huh, by fixing it so that there could be no dissenting votes?

You didn't really expect folks not to dissent, now did you?

Oh well, "All's well that ends well." It was a heck of a good topic and a lot of good ideas came out of it.

Thanks for initiating this topic, TroutScout. It was very timely.

PS -- I still vote Nay, and I'm NOT apologizing for "hijacking" Your topic this way and for posting my Nay vote here, either. I'm doing it, because I think it is in the best interests of the group as a whole to do so -- which is what I think you really wanted for us to do anyway.

PPS - I simply can't separate the adjunctive therapies in my mind from the mainstream abx therapies, so I'd never be able to respond to topics without getting into trouble with everyone in BOTH forums. I'd be the first one the Moderators had to kick out of the group because these two medical issues are simply not separate in my mind and never will be. They are totally integrated from my point of view.

That's why you and I will just have to agree to disagree on this issue, but with respect for one another's sincerity and dignity -- which is how ALL disagreements should be handled all the time.

Frankly, I don't bother to argue with anyone for whose opinion I have no respect, though, because it's a waste of our mutual time and energies. But I happen to like you, TS, a whole bunch -- enough to tell you when I don't see things your way and why I see them differently, my friend. Truce.

[This message has been edited by TX Lyme Mom (edited 16 February 2004).]
 

So now I think we should:
keep Medical integrated, but post a note in red at the top with a link to Dr. B's guidelines, for standard lyme tx, and add a disclaimer to start there looking for info.
 

I apologize for making it sound so complicated. I was "thinking out loud" so-to-speak, as I was composing those responses.

In the end, I came to the conclusion that it would be fairly easy to accomplish. I regret that my lengthy posts were so off-putting and regret even more that I'm not going to get a chance to "fix" it anytime soon.

Maybe you might like to read just the last part of the last message I wrote about this before making up your mind to reject the idea.

I'll try hard not to do this kind of writing again too often in the future, but knowing myself, I can't make any absolute promises not to do so, because sometimes that's just how my mind works when I'm trying to develope new ideas. Therefore, this time I'll just have to ask for your indulgence for rambling as much as I did.
 

I like what this thread developed into.

Trout
 

quote:

---

Originally posted by charlie:
I have inside info that TXLM writes press releases for Alan Greenspan.....

---

Charlie,
And when my daughter saw that remark, she told me to watch out for YOU because now she thinks you're another troll. (I tried to set her straight on that, though, although I'm not sure she believes me.)

Actually I'm a bit jealous of those of you who can think and type long convoluted posts at the same time and I have trouble chewing gum while I walk..

Guess I shouldn't always try to be funny but it's just part of my nature...
 

Trout

lol
 

quote:

---

Originally posted by charlie:
[BGuess I shouldn't always try to be funny but it's just part of my nature...[/B]

---

Keep it up, Charlie my boy.

Your posts are always so succinct. I look forward to your unique, keen wit. It helps us keep perspective.

BTW, if I had to type with two fingers, the hunt-and-peck way (like you), then I wouldn't be so verbose either. I admire your succinct style and wish I could immulate it sometimes.

Have we heard anything from the Moderators? What do they think about an alternative forum??

I still say yea!
~Brat
 

quote:

---

Originally posted by troutscout:

as you can see...we ALREADY have a category just waiting for us to use it...its called "General".

---

Trout--

I am so confused. Are you now voting "No" on your proposition?

If so, according to your thread rules, should you have said so or just not said anything?

------------------
Tabby

[This message has been edited by tabbytamer (edited 18 February 2004).]
 

Let me clarify...I vote a resounding YES.

Sorry....I guess I got caught up in the moment...ya know, Lyme Brain and All.

DUuuuuuuuuuuuuuuuhhhhHHHHHUHU! lol

I think Medical Needs a filter or a break and this would 'add' that filter.....although there is a gray area...I believe it would help.

Trout

I guess in teh end if it doesn't fly...we can revert things over to General...although I kinda think that would counter-productive.

[This message has been edited by troutscout (edited 18 February 2004).]
 

But the New Member database, could then serve to soften new member's arrival, make more welcome, and make navigating medical a little easier for new folks.

I still don't like the idea of separating. I think the old and new should mix, as we all learn from one another, are more likely to answer new posts in Medical, and I know I learn for myself from replying to posts.

I dove right onto Medical just the way it is, and, yes, the lingo was unrecognizable and some wacko posts were about, but I got just one or two of those great welcome posts from I think Beverly and Lymetoo, and I started doing my homework..

I think if people want to be here, they'll stay..but a section to provide the info that so many of our sweetest welcomers post on new member's threads repeatedly would be a win, win, win situation..

We could put lots of diversified info up there.

And it would not be a section that needs extra moderation, (I'd be concerned about the trolls who prey on new folks, as well..remember NYCTickhead or whatever..)

and it wouldn't split the group, but could be very helpful and also free up some space in Medical.

Mo

Trout
 

but, perhaps before we invest too much more time into this...

someone (HINT HINT) should notify Lou B. and ask if it is even feasible to add ANY new information on this site...be it a new member thing, an alternative thing...or...anything.

M
 

On the other hand, if we make it difficult for him, then he's not going to be the least bit enthusiastic.

Apologies for my rather rambling posts (on pg. 4) while I was thinking this out and talking myself into it, but now I see it as a fairly simple plan to execute.

First, we would simply start a couple of topics right here in the General Forum -- since not so many of the "debate clubbers" would be likely to mess it up.

Make it democratic so that everyone had a say in contributing ideas to each separate topic.

Then, when a particular topic was close to being ready, in semi-final form, that would be the time to notify Lou B. to take a look at it and see if it met with his approval.

After enough topics were organized and ready, then he could transfer them all to that section (maybe editing out extraneous stuff) and then announce that the Special Forum for Newbies was now officially open.

Lou B. shouldn't have to do any work at all if one or two different individuals volunteered to serve on the editing committee for each separate topic in order to put the finishing touches on each section before calling it to Lou B's attention.

The very first thing to do, of course, would be to decide which main topics needed to be included, as separate headings. You know, things like:
why it's important to be tested by a reliable lab;
why it's important to find a Lyme-friendly LLMD, preferable one who is a member of ILADS;
"LymeSpeak" terms and abbreviations for newbies;
how to do a search of old topics here at LymeNet -- also on PubMed, maybe;
Etc., etc. -- Just think about some of the links that Melanie and LymeToo and TinCup have collected on their lists.

I don't think this task would be too overwhelming or daunting at all if we simply organize it into smaller sections, perhaps with a committee of no more than 1-3 individuals to be responsible for editing the material in any particular topic section.

How could Lou B. nix something as simple (for him) as that, if it helped LymeNet to serve the needs of both Newbies and of Lurkers more easily?

Now, instead of a "poll" about yea or nay, how about a "betting" pool where we cast our bets as to whether Lou B. will go along with this idea if we present it to him in semi-finished form -- or at least in semi-finished "rough draft" format. I can't see how he's nix something like this if we present it to him so that his job is relatively easy.

PS -- I don't think we want to bother him with this until we've worked out the details a little more first. No doubt that either he or one of the other Moderators is watching quietly in the background to see how this topic progresses anyhow.

My guess is that if he is strongly opposed to the idea, then he'll send a signal so that we don't waste too much of our valuable time doing the preliminary organizational work on it. However, I think it's premature to ask him to approve or disapprove it until we get it more nearly ready for him to view it first.

PPS - We've gotta' wait until TC gets back home before we start working on this plan. TC has a way of phrasing things and a special knack for knowing just how to make ideas clear to newbies, so let's wait until she gets back from her holiday before we get too far along with the pre-organizational phase of this idea -- like what separate topic sections are needed and so forth. The rest will be easy after we get past that hurdle.

[This message has been edited by TX Lyme Mom (edited 19 February 2004).]
 

While I agree with everything you just wrote...I also think it would be a waste of time to put so much energy into something that MAY not be able to happen.

I think Lou B. needs to at least give the 'go ahead and let's see how it looks first'...before this much effort is undertaken.

Yes, Moonbeam needs to be involved...also, it think it wise to let ANYONE who wants to contribute get involved...we ALL have important contributions. By limiting ourselves from the beginning...we are limiting the posibilities.

Problem is...we may NEVER get Moonbeam out of Costa now that she is there !!!
 

I've thought it over...here's what I think we should do.

This would answer the questions regarding "legit" vs "alternative".

I say we add another Discussion area called;

"Alternative Care"

This way when someone chimes in...we know it may be an "off-the-wall" unproven modality...and no one can complain.

======
I vote NO.
You can't cut a neat line between "alternative" and mainstream therapies. Where would you post Dr. Burrascano's treatment recommendations, for example? He makes use of both.

Also, who can say, what is "proven" and what is "unproven" in Lyme medicine, when we are having to deal with so much corruption from the CDC, the NIH , Eucalb in Europe etc.. According to the corrupt study by Klempner, long-term antibiotics is "unproven".

What we need is for people to post the sources of their information when they report that a particular remedy is helpful or harmful. And above all we need to know whether those sources of information have a financial or other conflict of interest in what they are reporting.
Lisa

------------------
!!**!!**
 

i haven't read all the responses, so apologies if i'm reapeating others' words here... but... felt i needed to be honest, and say i think it's a really bad idea.

i'll admit, it has appeal...cause it'd allow folks not to have to wade through as many posts... but i think that's an essentially superficial differnce, and that it will hav enegative effects (especially for newbies who need to learn about the things they don't know about already)...

i truly think that most folks who get better do so by integrating a wide variety of approaches... and artifically separating so called alternative and traditional approaches would only widen the gap that we already have.

folks who think they're only interested in abx will not be exposed to all the interesting other things they might try with or instead or after abx, and folks doing the purely "alt" approach will not see things which might be useful to them.

it will mean that those of us interested in ALL approaches will have to scan both in order to keep abreast. and i think it will widen a gap which i and many others are continually trying to bridge in our treatments, knowledge, etc.

not to mention that there are a bunch of examples already of things which will be impossible to assign to one category over the other... and so i predict lots and lots of double posts on both, actually creating more clog, and less cross talk.

ok... that's my two cents.

all best
flossie
 

Then we can focus on helping the ones with questions about initial treatment options.

------------------
oops!
Lymetutu

 

You'll are THE best.

Trout

PS...every side of this discussion has VERY valid points....of which, I agree with just about all of them.
 

Troutscout, I can tell by your posts that you are doing better. I don't post much, but read a lot, and am glad to see so much improvement.

Tom
 

[This message has been edited by livinlyme (edited 27 February 2004).]
 

I think it's a good idea. If you, or a loved get's sick with Lyme it can be very overwhelming.

It can be very overwhelming for newbies just at Lymenet alone.

If you go the see a Dr. and are given ABX, you can read 50,000 posts on ABX in Medical.

After you've "been there, done that", you can look in Alternative.
 

But...I thought you were a little out of hand and I got 'pissy'... :rollseyes:

So....are thinking what I brought up a LONG time ago was a wise idea?

I revisited this thought the other day...in my mind..it would have kept the flames a little lower recently...well, that and good decorum...and, less devious work from some others.

Trout

Thanks for 'topping' this.
 

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Do unto others as you would have them do unto you.

[This message has been edited by treepatrol (edited 14 May 2004).]
 

Trout

Are saying that WE agree on something...hey...sorry about the dried up creek remark...but, you need to apologize to Scott. (IMO)
 

I'm not quite understanding the relation to what happened over Benicar..to my mind it seems the problem is in the HANDLING of a subject and the treatment of eachother..

(Whereas the discussion of ideas and theories, of our immune function in relation to Bb, of the possibitities in treating that, in any way if at all..is of great value and should be included in our medical discussions..)

Everything went awry because of bad behavior, not because the subjects or ideas didn't belong here.

I hope we can scroll back, and take a look at our immunology in relation to out illness, and share ideas as to how to investigate that..

To me, that's a relevant, potentially productive question...in relation to LD.

However, cure all, take it or leave it, no questions asked, do or die ideas, personal attacks, IMO, are non-productive and detrimental to the group.

Taking sides was what was what was totally non-productive, and got us into trouble in the first place.

Why propose doing that to solve a "problem" that wouldn't exist had ideas been discussed freely with respect, caution and interest?

Mo

[This message has been edited by Mo (edited 14 May 2004).]
 

That is what happend...people...JRW became obsessed....haven't any of you seen that yet?

Are you So bling as to see the forest thru the trees?

Kent
 

JRW is as sweet as the day is long..and he's also sick, just like the rest of us, and deserves the right to be who he is.

From what I could see, he was waving a caution flag, which is to be respected in it's own right..especially after the whole ICHT thing..maybe he was overly passionate and non-objective about the caution..I don't know..maybe not..

maybe some of the others were overly passionate and non-objective reguarding the many questions asked..I saw that going on, too.

Can't comment on 24's posting of a private communication..that's none of my business, and we only saw one bit of the whole exchange.. that's like having blinders on..and then making judgements.

Either way, his intentions were genuine. Reactions to caution and questions were also really out-of-line, IMO..and in no way do I see the whole fiasco as his fault. No way..
allot of legitimate questions were not met with an air of understanding response..not sure why..

Free brought great info here..but was also quite aggressive and avoided allot of questions. I'm not questioning his character or info AT ALL, maybe he's just focused on one thing and has no time for questions..just that I can see where some may be wary of his mannor...that's all..whether there is reason to or not.

Take a look back at all the exchange..it's pretty clear when you look at it all objectively (except, Free deleted his posts)

Scott's leaving the group wasn't the doing of JR, it was his own decision...and I think everyone, including he, played a part in the inability to discuss the issue here.

But..things happen for a reason..maybe discussion can continue on Lymenet in regaurd to very specific points and our illness and the theories.

Mo

Gentlemen, what good could possibly come of this talk?
 

I have to wonder why it would not be a better use of someone's time to work on figuring out this illness, rather than calling all over the country, checking up on people's identities and credentials, at such an early stage of a discussion?

Believe what you will, but this does not feel like a safe place at all for a free exchange of new ideas.

I hope you find your way by following JR's way. I sincerely doubt it, but whatever it takes to get well is my motto, and if that works for you, then great.

penny
 

Only commented on what was going on here on the board.

Penny, you were very kind in addressing questions when you could, that is much appreciated.

Kudos for opening a discussion group, it's obviously needed.

I do regret, though, the underestimation of Lymenetters as a whole to be able to discuss and question these ideas, and the removal of valuable information from the site as a result..the free discussion was blocked at MANY avenues..making it difficult for many to understand.

I have faith in this group as well, though..and I believe we can do a fine job of looking at all of this.

I hope some will consider continuing discussion here as well.

Mo

I don't think Trout's idea of having an "alternative" forum was looked into enough. From what I saw over 50% of the posters here were in favor of some type of break up in Medical.

I no longer post here as frequently as I use to, due to the BS that went on in the "Vibration" thread awhile back and this latest thread.

It's a shame, as I can learn alot here, and I also feel I have alot to offer others here as well. At least I try to help.

But it is becoming a battle ground lately, and I just don't have the energy to wade through all the BS to get to the good info.

I've also noticed that many posters are posting less or have stopped posting all together...It's a shame when our posters start leaving as they no longer feel comfortable on this board

~LymeBrat

That's what I've always seen as the great strenghth here..what gives us all as a group a real fighting chance.

A united front is essential in doing that, and many members feel Medical is the frontline..where we need all the ammunition we can get our hands on.

A united front!..we'll loose without it.

For the most part, we have that, and I treasure it. I have and continue to utalize a plethora of information from medical, both in real time and on the search engine for me and my kids, both abx and alternative.

new folks especially need access to all information in one place..we all help eachother SOOO much.

It seems the detriment to this has come from poor treatment of eachother sometimes when opinions differ, not because information is not catagorized.

I for one, still feel strongly that subsetting of medical info weakens the frontline.

Mo

The most important thing on this board is the support we receive from each other. Knowing that we are not alone in this fight strengthens us all. It's encouraging to hear the stories of others, and be able to share our thoughts to others that somewhat understand what we are going through.

Most of us on here aren't in the medical industry, yet spend long hours writting our friends from Lymenet about things that we believe might help. At no point are we to confuse advice with medical expertise.

I vote to do anything that will bring us back together. I'm too tired to write down options right now. All I know is we should spend more time helping each other rather than bashing each other.

Trout - thanks for coming up with a possible solution! Hope it works.....

I truly do care about you guys and wish only the best for Lymenet and its users.