Topic: OLDIES-NEWBIES-ADMINS-WE ARE NOT DOCS AND MANY OF US ARE COGNITIVELY IMPAIRED
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
this board is starting to scare me. we talk about the docs "doing no harm". we need to think about what is happening here.
newbies come on scared-sick-exhausted-confused-possibly cognitively impaired and not knowing it and they see this info
i really think there needs to be a HUGE bright red notice explaining to newbies to be careful of the info here
yes-we all mean well-but there are so many variables in this disease none of us really know what is best for any given person
many of us are clear we are giving opinions and our own experiences and we are not docs
some of us are cognitively impaired AND DON'T KNOW IT YET
even the docs on here are careful of how they give info-and rightly so
IF THE GOOD LLMDS ARE STILL SAYING "WE DON'T KNOW" HOW CAN PEOPLE ON HERE SAY "THEY KNOW" such and such is right or will work
this can be a very dangerous place for newbies and i think the powers that be here should really get together and put some sort of warning or statement that is very obvious and clear that:
we don't know-and to be careful of info given as fact most of us are not docs many of us are cognitively impaired the importance of a good llmd the fact that there are docs who say they are llmd but aren't maybe a reference to ilads or something
MAYBE I'M OVER-REACTING TO THIS, BUT I THREW AWAY $10,000.00 MY FIRST YEAR AND GOT WORSE BY NOT GETTING TO A GOOD DOC RIGHT AWAY. I WOULD LIKE TO HELP OTHERS NOT DO THAT.
IT SEEMS LIKE A CRITICAL TIME NOW...MANY NEWBIES AND SEARCHES FOR DOCS...AND HERE COMES SPRING.....
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Hmmm....I guess I haven't run across the scary posts, or maybe I just screened them out without even consciously registering it....
I've found this board to be a wealth of information, and have never felt that there was anything "scary" posted anywhere -- everything I've seen has been adequately flagged with disclaimers and the like -- but I am glad you are on the watch for us all.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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quote:Originally posted by cave76: There's a proliferation of people here in the recent past who are posting The Truth with absolutely no disclaimers. And using rather harsh words to those whose who disagree.
[/QB]
I really object to the harshness! We can't go around spouting medically unproven stuff as though it's the only "cure."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
Cave -- no respectful disagreement necessary .. I didn't mean to indicate that scary postings don't exist... just that I hadn't experienced the board that way.
With the disclaimer that I AM NOT A DOCTOR:
Seems the main disagreement here is whether abx or herbals are the "best" treatment for Lyme....I have Buhner's book, and I must say that it is incredibly well researched, and the man knows his science... he is not just recommending herbs willy-nilly at all. He also states that the herbs can, and often should, be used along with abx.
The studies on the safety and efficacy of long-term abx, as we all know, are hugely contradictory. (This has a lot more to do with politics than it does with good science, IMO. A good read through the history of this disease points that out pretty clearly! Some of the very best studies never make it to press...)
At the end of the day, it is really a personal decision whether or not to treat with long-term abx. I've decided to do it, and to do herbals alongside the abx protocol. Why? Because I think, based on my reading, that this is the most likely route for me to get as well as I can.
Some of the alternative therapies truly do scare me... I remain unconvinced about silver, though I know some folks swear by it. You couldn't pay me to let someone put hydrogen peroxide in my veins, (but I am willing to add some to my bath water...)
Herbs can be just as dangerous as any other meds -- some are quite toxic -- so I think it is the responsibility of EACH of us to research anything and everything we decide to put in our bodies -- no matter who prescribes or recommends it.
That is just my 2 cents --- lord knows, I've been prescribed some useless and truly damaging treatments over the years by main-stream docs.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Thank you for posting this, kayak!
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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it's the "so called physicians" that should have disclaimers.
Posts: 33 | From Oregon | Registered: Sep 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by cave76: Trying a new protocol is definitely something we all do, all the time, each time we take a new combo of abx or trying herbs.
We need to know what's being done. We do NOT need to have it said to newbies that it's the ONLY way you're going to get better.
I agree cave76.
(I've been uncomfortable with that for a while and it has kept me from responding and/or posting when I thought I had something to offer.)
I'm neither an oldie or newbie, to this board, anyway... but perhaps that's irrelevant.
In life in general... I tune out when anyone tells me that they know the ONLY way to do ANYTHING! Odds are there's rarely, if ever, one way from point A to point B.
Whether it's treating disease or gluing together popsickle sticks.
Ultimately, everyone needs to make their own decisions and find their own way.
(Excuse me if this post doesn't make the sense I was hoping it would, best I could do at the moment.)
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
cave-i got your pm-no need to change any thing-i just wanted to get a dialog going and alert the admins and that is happening
mini-i've been dealing with lyme for 40 yrs and been on here since 98 or so---i don't know how long you have been around, but things might not seem scarey if you have not seen what i have seen in the past. the more you know and go thru the scarier it gets. altho cave put it into better words
cave, lymetoo, trueblue---thanks for your support-i tried to say something i thought was important without getting myself kicked out of here
sometimes a little knowledge is dangerous...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
I love this board and it's collective wisdom.
and do benefit from the many days I have spent researching and listening to other's journeys. But thats just it. Each journey may take us down a different road to getting well.
And it also concerns me when someone gets on the soap box and preach to know the only way.
And I also benefit from hearing each person's personal journey. I don't feel quite alone anymore.
Lets keep sharing but stop preaching to the choir.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
Hi, I think there is some great info here. BUT, I agree, we all have diff. co-infections. Even though have found some very sharp people, think can be confusing for the new. When I was new to board having med. background working with patients for long time was not as scary. Yet, 1 Has to remember, NO 1 not even LLMDS, have the entire answers on chronic Lyme. All that we are given in way still guinea pigs of sort. There are probably more co-infections yet to be found, as has been noted.
Many of us from Parkinson`s,MS,FM/Cfids,ALS etc.
One main link we all start out with pretty much same symptoms. Then like the myco, probably root of tree branches off. To weak areas, areas they have found to hide & mutate. We have no idea how they are mutating to, we still do not know nor does anyone truly. Still much of guessing game from us to the Drs.
I have found much good info, some tad too obsessed thinking everything is linked to lyme.
Other with their own personal opinion as I have after 13 yrs. of research. I have won award for, plus been told closest to what has really happened. If someone is interested will give you my findings, from research,being guinea pig, working with the Lyme Guru, so to speak.
Weeding out the many things either,read,sent or research.
Unfortunately right now non lead to CURE...
Except maybe 1st mo. caught with doxy. Even that may be questionable, if is still hiding somewhere, can rear it ugly face at time major or stress,illness, that it can then work way back.
Anywho, think your post is right. Kerry
Posts: 746 | From Clearwater/fl/Pinellas | Registered: Jun 2003
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posted
Some people don't ever get the word. Their way or the highway. The alt med people seem to be the worst offenders. So far as I can tell, there is no sure cure for late stage disease, either conventional or alternative, so it behooves posters to be less dogmatic. What works for one person does not necessarily work for another. That is about the only hard and fast rule in this game.
Posts: 8430 | From Not available | Registered: Oct 2000
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
^up^
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
thankyou lou. well said.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
LPK
Clear, concise and righ on the nose. Thanks for taking the energy to post this.
I vote for this to be at the top or included in the newbie links.
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
kayak,
Thanks for posting this.
While I have found this board and the people here invaluable, I also have to admit that when I first started logging on, it was all pretty overwhelming.
I had been misdiagnosed for more than a decade and was very cognitively impaired. Everything overwhelmed me, and I was really no match for these complicated, multi-systemic diseases. But I also wanted desparately to heal.
Over the past nine months, I've been able to do a bit more research, but I still get overwhelmed and often confused by all the different treatment protocols and products.
So as others have just said more eloquently, I look forward to hearing about people's experiences as they deal with Lyme, but I haven't met anyone on this journey who has all "the answers" to what we each deal with every day.
In my first herx, I experienced full-body paralysis, that scared me witless. I was able to reach my LLMD from the ER, and after 4 or 5 hours, things improved.
When I saw my LLMD during my next appointment, I asked her about this. Her response was simple and, to me, profound: "There's a LOT about this disease that nobody knows."
I figure that's just the truth.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
thank you again.
andie-if i run into an llmd who tells me s/he can cure my lyme---i know it is a sure sign it is not a real llmd.
there are a lot of problems with the amount of information being overwhelming. now i can see without a doubt there are many "docs" calling themselves llmds out there to make bucks on a bunch of very vulnerable patients. so sad---and wrong. but i don't know what to do about it. i wonder if ilads would know a sensible thing to do about it.
i also noticed a bunch of "snake oil" type venders at a reason lyme conference that bothered me---this is really another post...i'll stop. but thatnks for the kind words. take care of yourselves all.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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