-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Thanks for posting this Mel. I found out about it on another site, where it was probably you who posted the info.
Putting it in Off Topic is the best way to insure that most members will never see it. I seldom go there, and I'm pretty sure that is the case for most others here.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
UP!
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Why are we having this same discussion and "voting" once again... to separate traditional and alternative posts (on the medical forum) to treat lyme disease?
"A closed mind is a good thing to lose."
If nonstop antibiotics/traditional medicine CURED lyme, destroyed all the various strains of Bb, lymenet would not exist.
I am not saying abx. don't help (they do!)even if you were diagnosed late, but what I am interested in is finding a
CURE - a safe and an affordable one for the masses infected. And "masses" are, and have been, infected.
And I am willing to open my mind to reading about and studying and evaluating treatments others would consider outside the "box".
Whatever works to destroy this pathogen completely without killing the patient and without draining the patient of all his/her limited savings...
That is what is important.
Whatever works...whatever is safe...whatever doesn't cost an arm and a leg (ideally a treatment covered by insurance).
Don't "divide" the lyme community.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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IKHDAD
Unregistered
posted
You CAN NOT seperate the things you are saying you want to.
IF you try you will see. It is impossible.
We all have multi dimensional treatments and most have mult dimentional minds that includes all and are open to all.
posted
My personal experience is that treatment is a mixed bag. If many of us are trying both abx and alternative treatments, how can we tell anyone which part of which is doing what for us?
Seems impossible to have a separate discussion, 'cause I don't think the discussion would make any sense. We don't know enough to be definitive about what is going on to even try to separate the impact of various treatments.
I think at this point, all we can do is read, discuss, try, report and see if we can start to make any sense out of what's happening; to see if we can discover any patterns in what people are reporting.
And always to say that this is one's personal experience, and not assume it's automatically going to work for the next person who tries it.
A huge issue in my thinking is people's ability to detox. If we can, we're going to have an easier time and maybe more successful outcome with experiments than those of us who don't detox well.
[ 19. December 2008, 01:07 AM: Message edited by: Robin123 ]
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
Yes, please split! To those folks worried that this would impact discussions in a negative fashion, I think just the opposite will happen.
Of course there will always be some overlap---it isn't possible to say these days what is definitely conventional treatment and what is alternative. Many of us use a mix of both. But certainly a separation of some kind could occur.
With the opportunity to choose which forum you are interested in at the time, those that wish to can avoid what they want to. People interested in both forums can visit both. I think there would be less nasty postings if the more controversial treatments were separated from the more conservative ones.
Also, people that usually read without posting may feel more comfortable posting if they viewed that forum to be "friendlier" to their way of looking at things.
All in all, I think it is a great idea and would make it easier for all of us to find information and certainly a lot easier for the newbie.
Posts: 345 | From East Coast | Registered: Apr 2008
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
my vote is to split it. It better seperates the information for people interested in either approach. The other option is to scroll through hundreds of sometimes irrelevant post topics trying to search things out. Even the search function gives many many useless hits when everyting is mixed together.
Posts: 1184 | From north america | Registered: Feb 2003
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
What's the point? Salt/C is alternative. Energy medicine is alternative. Acupuncture is alternative. Many have adamently slammed Salt/C, while they still believe in alternative medicine strongly based on their individual treatment plans. What's next: split the alternative into 12 sub-forums? Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
sorry gang, i'm outtie.
i have a hard enough time trying to sort out what is natural, alternative, suggestive, bad, good, etc.,
then i'd have to go to another board and "viola == not there", then back to another board.
at least with this one board, i simply scroll down until i find what i want.
my brain just isn't functioning good enough lately to figure out what ya'll are saying, so when i suggest "dumb it down", i really mean it.
so for me, another board means i'll just post less and less and less, then maybe just give up....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Personally I think this is beneficial, especially for new visitors. I can't imagine someone who was just diagnosed (or looking for the correct tests and protocol to see if they have lyme) should be exposed to threads that say "No antibiotics! They are toxic and hurt your system! Buy ArcaneFormula II and PulsaTronix Emitter NC-4 instead" right next to a basic primer on antibiotics that we (and ILADS) know are able to do damage to lyme. I hurts patients to see these as "equal", especially when they are new to being sick and understanding the benefits and risks of all treatment modalities.
In addition, it would help with debate. If you want to learn about X, then you go to that forum. If you don't feel it benefits you, then you stay off of it. It makes pertinent information of any sort easier to find.
Edit: See my post in the vote thread - I suggest a three way split instead of two.
1. Verified "Conventional" pharmaceutical therapies and diagnostics- This would detail anything you needed a prescription for, the use of antibiotics, antifungals, anti virals, pain medication and more. Most ILADS stuff would be in this category, diagnostics you could get from most labs, and more.
2. Verified "Complimentary" therapies - This would be herbal medicine, acupuncture, diet changes, detoxification, and pretty much anything else that while considered "alternative medicine" that still is bound in understood scientific methods and modalities.
3. Unverified "Experimental" and energy therapies - any sort of energy medicine that requires an alteration to proven laws of physics or is generally experimental should be posted here. This is the place for rife, biophoton, homeopathy, muscle testing and any other "lay on hands" techniques.
Posts: 691 | From East coast, USA | Registered: Jun 2006
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
yeah, but where would it stop.
would we then need a "hearsay" and "gossip" section?
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
I like your idea too. I agree re: Newbies...they must be overwhelmed when checking out this forum for the first time.
Posts: 345 | From East Coast | Registered: Apr 2008
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What happens if a patient goes through years of one type of therapy (pick your poison: alt or ILADS) and fails, then switches to the other and succeeds -- where does s/he post about their success?
If, for example, the success came from massive abx after years of alt therapies, then posting on the "traditional" forum would preaching to the choir. And vice-versa.
Also, by keeping the groups together it keeps everyone honest. It's very important for people who may not believe or agree with your views to challenge them occasionally -- though, not in a nasty way -- so that you can see the thing from many angles. We need open minds. Not two mutual admiration societies. How good is it, for the group as a whole, to all see things the same way about a particular treatment. In my opinion, it was important in the bionic threads to have the doubters -- again, respectfully -- chime in with their ideas. And, in posts where LLMDs are nuking patient with a dozen or more meds and supps, it's important for the patients to see there are additional explanations for their decline, other than it always being a herx. Differing opinions are needed.
A split would be a mess.
Like many above have stated, where do you draw the distinction? What is traditional and what is alt? Detox comes in here quite handily. Many LLMDs use detox techniques, whereas others don't believe in them. So does the patient post part of their therapy in traditional, and the other detoxing part in alt; if so this would be even more misleading and confusing. What about patients using abx, herbs, rife, detox, etc., where do they post; who's to say what it is that's helping them, or if it's a bit of everything.
All this does, and again, in my opinion, is appease and keep quiet few people who are VERY vocal about what is the RIGHT way to treat Lyme and friends. (There is a place for them in Europe, from what I understand )
From my own personal experience, sick over 15 years, I would have benefited greatly by being exposed to the many ideas tossed about in this forum. It is a goldmine. But, back then, in my early and unenlightened days, I would have stayed to the traditional forum, and not have learned many things which may have helped; which may, in fact, have saved me from ending up in the giant hole where I reside today.
Also, what about coinfections? Maybe split them up too? A forum for Lyme, another for bart, babs, erl, anap, RMSF, mycoplasma -- wait there are so many kinds (a bunch of separate forums about mycoplasmas), EBV, HHV1, HHV2, etc.....
What we need is more and better communication of ideas and possible solutions, not less.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I think separating them is a good idea, because this forum moves so fast, that sometimes a legitimate topic gets breezed over and doesnt get enough responses from those who should be seeing it, and within 12 hours itll be on page 2, just due to sheer volume of questions in this Medical section.
I think people will click on both sections if the topics get divided.....I dont think that separating it will stop people from looking at everything. I click on General Support often to see if people have questions about mental health, or need support, etc.......so why wouldnt I go over to another section too.....it would make things easier.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Actually... the administration may not even read THIS post, so if you really want your opinion heard by them, I suggest you also post it on the other thread as well.
Posts: 7052 | From Colorado | Registered: Mar 2003
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I'm still laughing.
And with the snap of her fingers, she parted the sea.
posted
To NoMoreMuscles, (BTW that could be my name too! Will we ever get them back??)
I understand your concerns about separate forums becoming individual places where dissenting voices will not be heard. Unfortunately, I find that to be the situation already. Anytime I have voiced a concern (always respectfully) in a popular alternative thread or two it was treated as treason. I don't think true believers ever like being questioned.
I will still visit all forums and I believe that most inquisitive and open-minded people will also.
Posts: 345 | From East Coast | Registered: Apr 2008
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You are so right... most people will continue to click on both forums. I agree that separating the large volume of questions will lead to people receiving more answers just from the mere fact that their queries will stay on page 1 longer.
Posts: 345 | From East Coast | Registered: Apr 2008
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posted
but randi--remember there is no lyme in Texas, so why would someone from Texas even come to lymenet--just kidding of course.
My PCP tried to tell me there isn't much lyme in Illinois today. It was all I could do to remain polite and disagree nicely.
Hiker53
P.S. I voted for no split. I like to see it all on one page. I know that for newbies people are afraid they might not take antibiotics, but as a newbie I had been undiagnosed for too long and antibiotics has not helped me at all.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10169 | From Illinois | Registered: Aug 2004
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Only 107 votes so far.
Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
Maybe Christmas time isn't the best time to run a poll as many people travel and don't use lymenet.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10169 | From Illinois | Registered: Aug 2004
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
I agree Hiker, but the poll ends on the 31st, so I just want to make sure that everyone who may be interested in voting does so.
Posts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
^
Posts: 7052 | From Colorado | Registered: Mar 2003
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massman
Unregistered
posted
Meg people are seeking alt care because "traditional" care with antibiotics are not working with them.
We are all biochemically different so we may well need different treatments.
And there are some big dog alties, like Dr. Klinghardt, MD, who is getting some very good results with patients.
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charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
....actually what I'm after is to keep some alternatives which are purely intuitive from being presented alongside hard science, and given the same intellectual weight.
Dunno why I'm like that...it's just the way I feel about it....
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Oh Charlie,
You're so brilliant. Where is the frickin' hard science? I never see anybody posting anything new here.
Is anybody actually working on it in the "real" science world?
How about posting it. I honestly would like to read it.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
....Awwww luvs...it's just that amoxicillin and doxy and stuff kills spirochetes.
biotensors or screen door springs or whatever don't do anything except in the figment arena.
I was just wording it creatively and making an oxymoron out of it to boot...to add emphasis to the uncertanity of the whole business.
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Amazingly...the vote is exactly even.
Posts: 7052 | From Colorado | Registered: Mar 2003
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
late to the vote, i see.
are the votes being counted here in this thread?
if so- i vote for the split to be implemented ASAP..
dill
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
I still don't understand what the split would be. Antibiotics, and then everything else?
If that's the case, we will need to be reading both sections in order to understand how to get better, since abx by themselves are not enough, and can cause problems without supplement aids. Most people need to detox and fortify the body also.
The Burrascano guidelines, and everything else? If that's the case, everyone will have to be really clear on what the guidelines say.
I looked at them. As fine as they are, I see a lot of problems with trying to make such a split.
One example - clindamycin is the only abx I can take for Lyme, as I'm allergic to the rest. Clindamycin isn't even listed as an anti-Lyme abx in the Burrascano guidelines.
I'm just saying be careful when it comes to an acceptance of a great but still incomplete set of instructions for how to treat.
And then we would be held to just the list there? I think there is a lot of variance amongst Lyme-treating physicians as to treatment approaches. There is a lot of variance in how we all respond to supplemental aids. There is a lot of powerful responses to things we may not understand all that well, but they're working.
Example: the homeopathy remedy I tried, pulsatilla 12x, was fantastically powerful, but how to explain something diluted to the 12th power of ten? Just 'cause we don't understand something yet is not a reason to call it unscientific. We just may not understand the science yet.
And we may end up arguing about which section stuff belongs in.
In reality, it all mixes in the same one body. I don't think I could always tell what each separate approach is doing.
Comments welcome. I guess I'd like to hear especially from those who wish to split into two sections - please explain further. Thx.
Posts: 13171 | From San Francisco | Registered: May 2006
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Charlie,
You're such a politician. You just said a lot and actually said nothing.
Please post the new science at lymenet. I'll read it.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
This happened at Immunesupport and though I used to read it daily now I never go there. They didn't want lymies (CFSer's who discovered they had lyme) posting on the "CFS" board. Things started getting split into sub boards. Then they redesigned the site as well. I got sick of trying to navigate it.
If this board splits it means I have to check two boards. I now only have medical bookmarked. And what goes in medical--then we should have a "science" board for new studies.
It gets ridiculous and it won't stop bashers. What is the point? It might be a good incentive to stop reading here, too. Reading a board should be easy and familiar--scroll down through topics, pick what interests you and read. If it starts taking effort, forget it. Moreover everybody will have different ideas about what is mainstream and what is alternative.
I suppose I should go "vote".
Posts: 2276 | From united states | Registered: Jun 2004
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bettyg
Unregistered
posted
reminder, voting ends on dec. 31 !!
if we have 2 boards; i see headaches galore for moderators! endless fighting over what goes where.
at first, i voted for 2 boards, but after reading ALL the many points mentioned above, my vote is now STAY AS IS.
SCROLL ON BY things you are not interested in like i do now!
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bettyg
Unregistered
posted
we can vote ONCE ONLY! so think carefully; i changed my mind just above here but could not change my vote.
IP: Logged |
posted
Maybe some useful developments will come out of this discussion. I see that DebAZ has just started a website that will be helpful to both new and experienced Lyme patients.
One thing she is doing is building a link list for different kinds of treatments. No judgement, just here's where you can find info on ....
Again, I think an attempt to separate topics will be much too complicated here, and opinionated, and will be too divisive. Not good for our collective mental health to have to fight over where to post a discussion on treatments.
[ 29. December 2008, 04:01 AM: Message edited by: Robin123 ]
Posts: 13171 | From San Francisco | Registered: May 2006
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