posted
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?
Posts: 691 | From East coast, USA | Registered: Jun 2006
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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.....
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
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.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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"?
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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!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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.
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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?
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.
posted
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.
Posts: 691 | From East coast, USA | Registered: Jun 2006
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bettyg
Unregistered
posted
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.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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!
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.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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?
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:
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.
posted
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.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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.
Oh beautiful, for spacious skies, for amber waves of grain...
posted
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.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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?
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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.
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Bad idea. I probably will post less not more. I don't want to have to bookmark two boards.
Posts: 2276 | From united states | Registered: Jun 2004
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"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 ......
Posts: 845 | From Eastern USA | Registered: Jul 2006
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bettyg
Unregistered
posted
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.
IP: Logged |
posted
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 ]
Posts: 345 | From East Coast | Registered: Apr 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Sosub said.. (Say THAT three times fast...)
"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.
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.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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!
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.
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??
I am getting a complex! Posts: 345 | From East Coast | Registered: Apr 2008
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(Smiles right back at you.)
Posts: 345 | From East Coast | Registered: Apr 2008
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charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
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
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Sorry, I just need to complain here. I haven't been reading what everyone has been writing, but here is my complaint:
I am in the process of changing my drug protocol. I am really sick and stressed. My LLMD doesn't have very much experience with babesia duncani, but I don't have the luxury of switching LLMDs, so I NEED the advice/experiences of others on the Medical Forum.
I have been posting a lot of legitimate medicial questions, but when I get back on lymenet, my posts are already on the second page, with only a couple answers, if any.
I feel like the non-medical questions are causing my questions to get bumped to page 2 prematurely. It is really aggrevating.
I feel like it is hard for the people that would/should be answering my questions to find them in the slurry of updates and announcements and random tidbits that are in Medical.
I feel like I try to contribute a lot to this site by answering others' posts. I spend a lot of time PMing others that I feel could benefit from the experiences I have had. I try to reply to posts when I have info that could be valuable.
So, it's not like I just come on this site to "receive" and not "give." But lately I feel frustrated that my questions seem to be getting lost.
I am scared because I'm really sick and I feel like this site could be catering better to people like me that need serious medical advice from others that have been through it.
So, I think we should split the forums, or at the LEAST enforce more seriously when people post random things in Medical that don't apply.
Sorry to come across so harsh, but it seems like since I joined in June of this year, it is harder and harder to get my questions "noticed" and it is a big turn-off.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Two other "sections" that might be useful could be:
Laboratory testing questions
and
News posts
and
Personal Updates (people updating us on their progress/success)
I feel that these take up a lot of the room in "Medical" but honestly they aren't really medical questions per se.
It would be nice if there was a section just for people needing advice on conventional medicine, not a place where we dump anything remotely related to something "medical."
Posts: 4590 | From Midwest | Registered: Jun 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey sosub...
Yes, I know what you mean about reading posts when you are tired. Many nights I've admitted I turned into a pumpkin at midnight... and couldn't come up with a clear thought to save me.
I do hope you spend time after you've rested and re-read my words.
I also hope you view them not in the same light as your response indicated you'd seen them already.
Please, when you reread the posts.... do NOT make the words out to be personal or assume I am talking negative about you in any way. That is not what I was doing. I am sorry if you thought it might be.
As my momma always said... I don't have any tact. So please know that I am rather blunt sometimes... and folks could read into my words other meanings... but I don't normally respond with the intent to kill.
I don't have time to respond to all your comments right now.. but will hit a couple with short answers (EDIT- you KNEW that wasn't possible, as did I, when I wrote it- oops! HA!)... because I don't want you getting a complex as you said.
You questioned what I meant and you quoted me as saying... "is not intended to be part of the CDC grant programs"...??What.?..sorry, lost me there."
Simply put... and I often use examples in describing things... LymeNet is not and has never been a place for LLMD's to come for any OFFICIAL medical information.
You said... "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."
There IS incredible medical information on here, you are right. Thanks to many wonderful and dear volunteers over the years... all of us have learned so much. But again... it is NOT a site that we need to "fix up" to please the few LLMD's you mentioned.
There are MANY sites where they can go for information... and so can their patients if all they want are medical abstracts.
BettyG, Tree, LDA, ILADS, Lyme Memorial, BetterHealthGuy, LymeInfo, LymeBrary, Wild Condor and many others have sites with information folks can go to for facts for a particular situation.
You said.. "I was just trying to say that docs would like to recommend a SUPPORT site for their patients, but hesitate to recommend lymenet."
This site isn't for everyone. True. Just like the LymeChat isn't for everyone (for example). If you know a few LLMD's who want a support site for their patients and don't like this one.. they certainly have the resources, knowledge and dollars to create one.
If they are so narrow minded to not want any thing discussed here... other than what THEY think is proper... like the IDSA is bent on doing, which has killed and disabled people.... then shame on them.
You said... "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."
Again, I am NOT talking about YOU personally.. just the few LLMD's you said didn't approve of LymeNet because of the conversations we have here.
You said.. "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."
My thought is... I think they have bent over backward to provide us this site.. and have worked hard to keep it running for all of us. Bless their hearts.
I also think they .. like I and a number of others... might not have thought it all the way through.. especially when it comes to how to sort each topic and the work involved. They are so kind, my thought is they wanted to try to please everyone and made an offer in that light.
And at first I thought it might be an ok deal to sort things out too... but the more I thought about it.. the more trouble I see coming their way... and OUR way.
As many of the prior posts ask... where do we put arteminisin? Combining several antibiotics? Yeast treatments? Vitamin D therapy? Glutathione? Natural Progesterone? 9 months of IV Rocephin pulsed? Hyperbaric oxygen?
All of these have their place... and some are useful for some people.. and all are written up medically in some sort of way.. and are all used by one or more LLMD's to help Lyme patients.
So are they considered alternative, ILADS, traditional or borderline or what??? Having to straighten that out for a moderator is NOT going to be easy and will only provoke hard feelings and problems for the ones who won't agree.
Of course, my crystal ball might not be real clear... but this is what I predict.
You said... "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??"
Oh boy. Let me try again. NEVER have I tried to suggest YOU personally leave LymeNet. I am sorry if you are reading into what I said as meaning that. I have enjoyed your opinions and your posts, very much so.
If you reread the statements and quote the entire sections of what I've written above ... rather than just a few words here and there... and keep it all in context ... I think you will see I was just talking about the few LLMD's you said who don't like to send patients here.
Now, to be clear.. if you agree with those LLMD's and think that certain things should be censored from the board because YOU don't particularly like them or they don't.... then yes.... you might be happier elsewhere. I don't think censorship is going to be very popular here as a general rule.
BUT I am NOT asking or wishing you leave... not by any means.
If you can put up with the way things are.... or want to try...
You can do what all of us do... sob (scroll on by) the posts you don't want to read... or suck it up buttercup. We all have to do that when we see things we don't agree with 100 percent.
Same goes for me too. If I don't like what is being said here... I should consider finding somewhere that I'd be happier.
You said... "I am getting a complex!"
It does seem that you are taking things too personally. I am so very sorry about that.
Perhaps you could lighten up a bit... rest your mind and soul... and enjoy Lymenet for what it is.. and not what you want it to be or think it should be?
I think if you could, you would have more fun in a world where fun is sometimes hard to come by.
And PLEASE never ever assume my words are knocking you in some sort of round about way. If I want to knock you or anyone else in the head, trust me, I do it directly so there is no mistake about it.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Hoose...
It sounds like you've got your knickers in an uproar. Wrong side of the bed syndrome?
Sooooooooo... get out of that ditch you are in. That was plain old nasty young lady. You are hurting people's feelings talking like that.
BUT... I will suck it up because I aim to please anyhow... sooooooooo...
If you send me your address, I will mail you a brand new shiny baseball bat.
It might be easier to just beat the sick patients here who volunteer their time to help others.. who don't have to be here at all... and who have NO medical degrees...
Especially when they don't respond when you want to know something that your LLMD doesn't even know!!!
Ahhhhhhhhhhhh!!!!!!
OUCH on all of us Hoose!
I KNOW you must be in a bad mood because it isn't like you to slam our heads in the wall like that.
I am sorry you are feeling so badly and are so frustrated. I can relate.
You said.. "My LLMD doesn't have very much experience with babesia duncani, but I don't have the luxury of switching LLMDs, so I NEED the advice/experiences of others on the Medical Forum."
I'll tell you why I didn't respond to that post. Number one... I don't know the answer... and I am not sure anyone does. Number two... I am helping others with answers I do know in the hopes someone who may know will respond.
Number three... We all can't be everywhere to respond to everyone. Number four... rather than a handful of people with Lyme... we now have hundreds of thousands who need help.
Keep in mind this is the busiest time of year for Lyme.. always has been.
Number five- sometimes NO ONE knows the answers. That's just the way it is with Lyme, et al. This is a poker game. Sometimes we must do what we can to stay alive till answers are evident and forth coming.
You said... "I feel like it is hard for the people that ***would/should be answering my questions*** to find them in the slurry of updates and announcements and random tidbits that are in Medical."
First off.. NO ONE is obligated to answer ANY questions. Yours or anyone else's. Second... it is the holiday season. We are all lucky to have friends here who try.. and who are taking time from their families and obligations to even be here at all.
You said... "I am scared because I'm really sick and I feel like this site could be catering better to people like me that need serious medical advice from others that have been through it."
I hope you do know that this site is ALL volunteers. No schedules are set, no specific people are appointed to be here EVER and no compensation is given to anyone. No one caters to anyone here. ANY replies anyone has to their posts are only out of the goodness of the responder's heart.
JUST LIKE WHEN YOU REPLY with your kind and helpful answers.
You said... "Sorry to come across so harsh, but it seems like since I joined in June of this year, it is harder and harder to get my questions "noticed" and it is a big turn-off."
You've been educating yourself.... which is good. You are now to a point where we don't often HAVE the answers you may want. Please understand that.
Now go soak your head in a bucket of sudsy water and don't come back till you can be nice.
Or skip desert tonight.. your choice.
PS.. Hoose, you know I am trying to snap you out of this funk you are in. I will go reread your post and later today will try to find time to do some research. IF I can come up with something... I will gladly respond.
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Well, I got back online to apologize for my tone earlier. It was harsh, yes. So I apologize.
The kind people that get on here to help others don't deserve to be spoken to that way.
So I'm sorry, I truly am.
I do stand by my claim though that Medical is too scattered and disorganized. I think it would be easier for us to help each other if there were more organization.
I understand why some of my questions aren't getting answered, but I also think that a lot of the questions (not just mine) aren't getting seen by the right people.
I would probably answer more medical questions if I saw more of them. Who knows though.
But anyways, once again, I apologize for my tone....I am frustrated, and I shouldn't take it out on everyone. I just spent like an hour sobbing, talking to my mom. I think she is going to pay for me to see a new LLMD.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Tincup,
It's okay....I probably deserved it.
Anyways, I appreciate you responding to my post. You did enough just by what you already did, posting the links.
But don't feel the need to do any research on your own....I was moreso just hoping to catch the eye of anyone that knows anything (no matter how little) about whether doctors are using orals or IV for quinine and clindamycin.
I wouldn't want anyone to waste their day doing research on my behalf, but if there is anyone out there that happens to know something, that is moreso what I was searching for.
About two weeks ago, I posted a lot of questions about babesia and didn't get many answers. Maybe my questions were too difficult and I understand that. I am being...unreasonable about this, I know. I guess telling you guys how frustrated I am will maybe help people understand where I'm coming from. Just sort of a desperate place...
I am grateful for ANY answers I get....trust me, I am. I want to emphasize that. The people on this site have been nothing but accomatdating and helpful. So I am grateful.
I think I was just using this issue of whether we should have an additional forum or not to vent my frustration. It's really not anyone's fault, one way or the other. No matter what happens, I'm still grateful for Lymenet.
So thanks and Happy New Year to everyone.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Do you remember that kids, game, "Telephone", where one child passes a message to another and another until the final message is completely different? That's how I feel about my posts to you. I don't know where I am going wrong, but you are reading things into what I said that really aren't there.
So, at the risk of boring you to death, I will try one more time. When you said "If you agree with those LLMDs and think that certain things should be censored from this board because you don't particularly like them or they don't, then you might be happier elsewhere."
To clarify, I don't believe in censorship (except in dangerous or abusive situations) and I don't know any LLMDs that do. What I said was that it would be nice to have a "Conventional Treatment" section that supports treatments recommended by ILADs...it would show support for our docs.
I think you may have been confused when I responded to your statement that LLMDs aren't even aware of Lymenet. I was just saying that I think docs have heard of or checked out lymenet...I said that I had spoken to some and read posts here from other people who said their llmds thought there were some "far-out" treatments recommended here.
Nothing about censorship was ever mentioned. There ARE some far-out things recommended here. But, it's a free world (here on lymenet too) and people can post what they want. I try to be respectful of others and their opinions. But I hope I can state my opinion too, without being told that I "don't want things discussed here".
So, to further clarify, I will just repeat what I was trying to say, I guess unsuccessfully.
I would like to see the forum separated, mostly because I think it would be easier to read. (And easier for people to get replies.)
Tincup, you told me to "suck it up" and "lighten up" if I don't agree with something. I think that is exactly what I do already...I am really easy-going and tolerant of just about anybody and anything.
I just wanted to make sure I clarified the whole LLMD--censorship thing...absolutely never meant to have my statements interpreted that way.
I'm pretty sure my opinion doesn't matter anyway...I think the majority vote is looking like folks want the forum to stay the same. And that's the way it should be...majority rules!
Posts: 345 | From East Coast | Registered: Apr 2008
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I completely agree with you...I have also noticed that a lot of posts get missed because they move so fast to page 2.
I think separating the Medical forum would really help in that regard, but I think the vote is going the other way. (Sorry!)
Posts: 345 | From East Coast | Registered: Apr 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Thanks Jen and LymeNet for considering our needs and opinions.
Looks like the votes are done.
145 members voted.
46 percent (66) asked for the forums to be divided.
53 percent (77) asked that it be kept as it is now.
imo, medical forum here is it's own living and breathing organism, and always evolving - as are these emerging disease conditions and their treatments. having been here for so many years, it's interesting to see how some clinically minded members have become more "alternatively" minded, and vice verse.
plus - most folks with lyme tend to stick to one main hub.
i believe too much could be missed, and it would eventually change the quality of discussions and the "feeling" of the whole board.
m
ps: i do think that posting nothing to do with health issues on medical board needs to be enforced, and hoos --
i always found i ususally need to keep upping my posts with more info, questions, or just a bump to generate information i need.
sometimes members who would have information, particularly on something specific, are not on board daily, or a particular post on the thread spurs more info over time.
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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