Every so many months, new treatment alternatives come up. When I first came here it was the ICHT (the Italian heat seeking thing - I never get the letters in the right order). Then hyperbaric oxygen. Then it was rife and zappers. Then Samento. Now it's Benicar.

There should be debate and lively discussion on anything new that comes along, but for some reason when there are opposing opinions (as there should be in any debate)tempers flair around here and board members are attacked. Yes, we are all sick and we have rages, but sickness is NOT an excuse for bad manners. If you are feeling badly and you are more irritable on a given day - do us all a favor and stay away from the computer!!!

I really wish people would get their heads on correctly and discuss these treatments intelligently. Disagree, but do so with some basic manners. The computer brings with it a level of anonymity, so I get the feeling that people are less likely to censor/revise what they are about to say. Would you be this nasty to a person if they were face to face with you?

Chronic illness brings about a degree of desperation to find something, ANYTHING to get well. I think whatever someone chooses, that they do so fully informed. And whatever a person chooses should also be respected even if it is in sharp contrast to what you would do....

Questioning a protocol should not be the same as attacking. Some of these treatments seem a bit offbeat, but does that make them bad? I don't have the answer for that because I'm trying to sort out emotional tirades from factual information. It's tiring. We all only have so much productive energy to expend in a given day and I hate to waste mine wading through temper tantrums. As a result, I'm spending less and less time here.

I'm really getting tired of this, and it does little to provide helpful information to newbies. I have sent several people here for information about lyme disease and frankly I'm a bit embarrassed to have done so. It's going to scare them off.

For clarification...I am not directing this post at anyone in particular. I am observing an ongoing trend. We are ALL responsible for this board.

cootiegirl

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

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

LymeGirlInAz!

 

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Julie G.
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lymeinhell
 

Trout
 

Great post. This board should be about helping each other.

When i first starting posting here you answered some of my questions. Actually, you made me laugh a few times. I have not seen you around that often. But, im glad you popped up!

LymeGirlInAZ:

You can e-mail me anytime. I am very new to this and i dont know very much but i can be there for support. Lyme is very hard to deal with when you are starting out. I also agree with you that for new people its hard because you are scared and searching for answers. Also, its hard to know just what to post and where. Or, if people think your posts are stupid and thats why they may not be answered. I know not EVERY post can be answered, but i know, im very insecure.

Jordan

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If you have a question, it is NOT stupid! If somebody makes you feel that way, just ignore them. The only way you will learn is to study, and ask questions.

We're all volunteers here, so sometimes we can't keep up with the questions, or maybe nobody knows the answer. It is NOT because you shouldn't have asked.

Remember, too, that we're not doctors, and you will get all levels of advice here. Make sure you check things out with your doctors.

Sorry it's been a little edgy around here. Unfortunately, it seems to be human nature, but we try to do the best we can.

 

NEVER.....NEVER....HESITATE to ask a question.

Please.

Trout
 

I too apologize to the newbies. I haven't been on as much so I haven't been as welcoming as I should be. I was in your place just three years ago, and it was overwhelming and frightening. But many of the people that responded to this post, were the first to welcome and support me, so now I need to give back.

Desperation is what fuels many here. I'm not saying we are a pathetic bunch, because if it wasn't for desperation, many of us would have stopped seeking treatment and dropped in our tracks long ago. But desperation without some rational thought, can be problematic. For the most part, the members are very intelligent and savvy. But like Treepatrol said, I too get a little 'itchy' when alternative means are touted as 'fact'. That is dangerous,especially for the newbies.

So keep up the interesting discussion, without the hostility and we will be just fine around here. As a 'retired' college prof, I always told my students that there are no stupid questions - knowledge is power. It's the stupid person that doesn't ask.

Cave, I'm chuggin along. I've been on biaxin and tinidazole for about 4 months now and am seeing nice steady results. My energy level is improving and I've taken about 8 pounds off. I still have quite a few symptoms, but it's a hopeful place to be. As long as I continue to move ahead, I'm perfectly content to be the tortoise not the hare for as long as it takes LOL! Slow and steady wins the race!!!!One thing this darn disease has taught me is to be more patient - a very tough lesson!!!!!
cootiegirl
 

ALL OF IT-

Some-or all of the things mentioned above are possibly-PROBABLY-why some docs/ducks-and even legitimate you know who's have at times said the site is "dangerous".

Support-caring-encouragement and for medical concerns---FACTS-SHARING-less sensationalism.

Thanks for this long overdue telling it as it is--or should be.

Bravo to whomever started it-brain can't remember. But I have FAITH that one day it will be as sharp as ever-and thats the kind of feed back and hope I look for here.

Choc.

 

After the last "debate" over the vibration thing, I decided to stay clear of this latest "debate".

I did as a fellow poster suggested..

SOB scrolled on by..

I sure hope some day in the near future we can discuss this type of topic in a reasonable and calm manner. Both the pros and the cons.

Wishing everyone wellness!
~LymeBrat
 

Very well put. For now, I've stopped wading through it because I simply haven't got the energy to read and retain it all as well as sort out the useful info from the personal opinions and arguments.

Dontlikeliver
 

Hope this helps.
Glad you said it.

 

I'm still a newbie here but I am not new to the medical community. Before LD, I was a Legal Advocate for the disabled, a case manager, worker in several psych hospitals and an HIV/AIDS prevention instructor.

I have appreciated the majority of responses I have gotten from the posts I have put here, I have also felt the tension when reading about topics and have sensed the moral police regarding certain subjects.

We are all struggling and should be supporting one and other without judgment as you have said so well.

Amanda
 

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

I would like to make one suggestion....if you feel the need to take someone on....please do so in a private e-mail.

I feel that much of what went on in those posts should have been done privately because quite frankly it didn't help anyone.

Marie

 

I have no problem with adults RESPECTFULLY diagreeing.

Most of us are confused enough with all that is thrown at us, I have put myself in enough test studies, from doc to doc.,changing ins. atleast 4 times. Find myself getting angry about the lack of concern about helping me get better. I am more CORN_FUSED than ever.

After working at pain clinic & with Bowen & the stories I have listened to just would be crying all the time.

If hoping on 1 leg across a suppossed healing waterfall someone might have said worked then go for it, as stated.

Just do not let your anger run over. We should never be arguring amongst ourselves.

Have we not have EnougH of that from work,to fam.,to suppossed friends, ducks, med field.

All of that is exhausting enough as ill as some of us are. We have to pick & choose what we feel we want to take chance on or that in our gut may help oneself.

Thanks Cootiegirl. Listen up others if we do not stick together we are going to lose the battle on our OWN battlefield....
 

I had one thing I really wanted to add. I am a newbie here and have posted a few times. I too get hesitant to post sometimes.

Not too long ago someone posted asking if the board was getting too crowded and telling the newbies to please read all past posts before asking questions which have been discussed in previous posts.

Let me just say that being new to all this is intimidating enough. I have spent hours and hours reading previous posts here. But as you all know, there is a very limited amount that you can retain, as well as the limited amount of energy you have available at any given time.

Sometimes in your desperation to find an answer, you just want to talk to someone (particularly if you are having a really bad day). And sometimes you have neither the energy or the ability to search through hundreds and hundreds of posts to find the answer you are looking for.

So I, too, have felt somewhat intimidated about posting a question here knowing it has probably been discussed before.

I am sure that it is frustrating for some of the "oldtimers" who have been here a long time to see questions asked over and over again that have been previously discussed.

But please remember, these people (like me) are often very scared, very upset, feeling awful and not thinking very clearly. They are overwhelmed with trying to understand all the issues involved, trying to figure out what to do, how to proceed, etc. They are just trying to reach out for help and comfort.

I would also like to take this opportunity to thank all the people who have answered my posts and who have emailed me privately. Everyone has been so helpful, it touches my heart.

I hate to see people being ugly or nasty to each other. Aren't we all just trying to find a way to heal and get our life back?

CAT
 

We need to discuss all kinds of treatments here - the tried and true and the new and sometimes unusual. No one gets well from this disease in the same way. We all need to make informed decisions and not let emotions get in the way. And that's a hard balance when many have been sick for so long. We want wellness and we want it NOW!!! Right? I always say that if sheep pee were a proven treatment and I would be lyme free, well then pour me up a tall one, over ice with a paper unbrella!!! LOL

cootiegirl