long rantings re: Alt. Therapy - non RLS - from Connie

[Guest guest]

<< Who says a smoking cigar being rubbed on

someone's body is a silly & stupid way to cure RLS? Probably someone who

has not lived with RLS>>

Sorry, Kim..........lol.......:-)......I'm afraid rubbing a cigar over my

body just isn't something I would want to pay money for to cure my rls.

In my humble opinion, you guys are grasping at straws......... and being

totally unreasonable.. And I'm not afraid to say it. You are absolutely and

totally too defensive of these treatments. did NOT say that Coco's

treatment was " stupid " ........but he did make a joke about it........it seems

you are ready to fight without even digesting what the other person said.

Are you absolutely positive that you have no doubts about this yourself?

Come on now, let's be honest here. How can you diagnose leaky gut syndrome

just by looking at someone?

Anyone who could sit there and not think that the cigar bit and leaky gut

was funny, is really........well, " different " in my opinion. It DID sound

like hocus pocus! Now.... hocus pocus works sometimes you know, and usually

it is our mind that is doing the curing when we go to people like this, and

not their treatments. I don't see any of you getting cured around here and

not coming back. Face it, Guys.......rls ebbs and flows......it comes and it

goes.........it gets worse, it gets better.....and we might have an answer

one week and the next one we don't. Whatever we do or take just doesn't

make a difference sometimes. It's the wierd treatments that get in the way

of true alternative therapies being investigated more. So much of our

improvement stands to chance....pure chance. Things go into remission or

else we get our own body chemicals going and cure ourselves. As I have

often said, what I believe in most is the power of the brain. I cannot tell

you how many times I did exactly this same thing in the last twenty years. I

have been from pillar to post, paying my way, taking everything that came

along and doing everything that came along. I also took my very favorite

aunt, who is crippled terribly with Rheumatoid Arthritis....tried everything

that was " promised " to cure. Her tears still haunt me. A few times I

thought I was cured in the beginning.......but then I found out differently.

I have developed a stronger " hide " now and I use a lot more of what I always

preach to you........good old common sense and logic. There are no free

lunches. I am not a novice here......I truly have tried many, many

alternative therapies and I have done extensive research on them. Anecdotal

evidence just does not cut it with me. I want a name and a publication, a

controlled study that proves what they're saying is true . After so many

years, why is that still such a problem? Why are these studies not done

properly and published? Why is traditional medicine held to one standard and

alternative to another? I hate to repeat myself all the time, but we are

only now beginning to get some reports of good work being done. This is what

is going to further the alternative therapy movement......not word of mouth.

is a scientific person and we have to accept that fact. He is of

tremendous value to this group and I thank God every day that his skin is

thick enough to withstand the criticism he receives here. Yes, he definitely

does start some fires......it's his nature, and it keeps us on our

toes.......but he is always ready to admit it if proved wrong. He does not

act like he is God. He passes his medical knowledge along to us just as he

sees it, and is willing to learn as well as teach, when there is something

valuable there to learn. When any of us is really down and out and so sick

we think we are going to die, he is one of the guys we are going to turn

to......if we have an sense.

He is the first to admit the side effects of traditional drugs......is no one

reading this but me? Have you not read of his experience with Klonopin? The

treatments and medications that he questions are those that most people would

question because they are simply " questionable " !!! The very best and main

thing we have to say about traditional medication is that it has been looked

at thoroughly and you are usually warned ahead of time about what side

effects you might encounter. You are warned about what other drugs you

should not take it with....you are told what to do if something happens. You

are not treating yourself out of a health food store. You are also sure of

what is in the bottle.........which you can never say about OTC supplements.

All of this crap about " natural and herbal " being so superior is just

that....... " crap " ...until it is proven beneficial and until the actual

product is regulated so that we can purchase with confidence.....and know

what our risks are ahead of time.

We all want the same thing here. and I both have taken and are

presently taking supplements. We would be Thrilled to Death if you found a

treatment that you could say actually cured your rls and you didn't have to

keep going back to this " doctor " constantly. Actually, if it actually cured

your rls, we would be willing to go back......gladly!

Most of the time, we go to these doctors and get these treatments and we are

so hyped up and hopeful about them that our minds fool us into believing that

they are helping. This is not a mean-spirited criticism here....I am not a

mean person. I surely hope that most of you know this by now. This is just

plain truth. After a while, our problems always seem to come back. If it

works good enough for you, whether it be traditional or alternative, then by

all means.....tell us about it and keep on doing it.......no matter what

ANYONE says. Have the courage of your convictions, People. You could not

ever say ANYTHING to me to deter me from doing something that gave me relief.

You could ridicule and laugh till the cows come home......it would not

bother me in the least.

There are so many shysters out there just waiting to reel you in, to sell you

a bill of goods. The almighty dollar always rules. And I am not trying to

state here that medical doctors do not do this also. All the barrels have

their bad apples. But some doctors are even abandoning their professions to

switch to alternative medicine because it is so much EASIER, and they are not

bound by the same precautions and restrictions. By the same token, there

are many out there who truly belive that what they are doing is going to help

you. They have had just enough luck to convince them to continue doing it.

It's up to you to determine the difference. Common sense and logic. Do

your research and be very careful about submitting to anything that could be

extremely dangerous......like chelation therapy, etc.

We are always going to find different reactions to every possible treatment

there is. Face it.......our minds have different capabilities. Those of us

who are more assertive and bold can usually " will " their bodies to respond

more easily. Not surprisingly, some who are extremely timid can also be

convinced of things that are not really happening. They can be led in any

direction easily. It's those of us in the middle that are usually doing the

questioning........that have to be shown the proof of the pudding. People

are different........it's a fact of life.

I think we should make an effort to be aware that there is a whole subgroup

of practitioners out there who are getting rich on our confusion. They work

in multi-level groups or have their own private practices where they do

" unusual " examinations and treatments, ( I'm sorry, but this is quite often

Chiropractic ) and they sell supplements out of their office, or else refer

you to a specific source for them. They usually all have the same jargon and

they quite often roam the internet looking for support groups to infiltrate.

They see the bickering and problems created by our lack of knowledge, and

they sometimes even have people join with them to praise their products or

treatments. How would we know whether someone was doing that or not? We

have no way. These people do not all come right out, as Dr. Meadows did, and

say that they have the answer to our problems if we would care to buy it from

them. They usually take the time to become one of the group, telling us of

their problems and establishing a positive identity within the

group.....possibly never actually making a bid to sell. But they will stir

interest, tell of miracles, communicate privately with all the names they

collect of those that seem vulnerable.......and often refer people to where

they might purchase the products that they are trying to sell. This is what

the QuackWatch site is for, and whether you want to laugh at the site, as

some have done, or learn something from it.....is your own personal decision.

I cannot see where it would hurt to search the site thoroughly and keep some

of their advice in mind as we look for our answers. They are not just

talking off the top of their heads. They have based much of their advice on

people who have admitted what they were doing and have been prosecuted.

People who have sat back and laughed at how easy it is to fool the public.

We are not proclaiming all Chiropractors or Acupuncturists as Quacks! They

can often do much to help many feel better.

No one in this group has ever told anyone that they were stupid to try

something new, or told them to not do something. If we voice cautionary

advice it is only because we feel there might be danger involved, or absolute

fraud. That also, is part of what " support " is.

We have become far too argumentative in regard to this subject, and it is

time that we stood back and looked at it more carefully, so that we are not

hurting the feelings of valued members of the group. I could not believe

that I, personally, found myself sitting here thinking that perhaps it was

time to get out of here because I did not need the sarcasm and disrespect

that I was receiving for the advice I was offering in the hope of helping. I

guess the lack of sleep, pain, anxiety and depression are taking their toll

on me also, and I am finding that I am not as strong as I used to be in every

possible way. I always take extra time to disagree in an acceptable way, and

I attempt not to hurt anyone's feelings in the process. I know that I owe an

apology for the tone of this letter.......and I offer it herewith........but

I am not going to change a word of it. This is the way I feel and I will not

lie to you. I hope that anyone who has a problem with this will contact me

personally, so that the whole group does not have to suffer for my actions.

I will happily take any criticism you have to offer if it is done in a

respectful way. As Jeanne has said, disagreement can be extremely

invigorating and a valuable learning tool. We know that we don't agree on

every subject, but we always listen to what the other has to say and we give

it serious thought.........and we have developed a mutual respect for each

other in the process.

I know I have used far too much of my own time and yours with this letter,

and I apologize also for that. I had a great night for once and got up

early, feeling pretty good. When I read my mail, some of the remarks just

set me off with frustration and sadness that we are continuing to behave in

this fashion. I will be very interested to know if anyone else is also

feeling the same way. Got to get some work done now.......

Connie, 63 ( and paying my dues ), MD

[Guest guest]

Connie, thank goodness some reason prevails!

I am reminded of a trip I made to Taiwan a number of years ago. One of my

favorite places was the public market (not a tourist trap). While strolling

through, I became curious about a large bear held in a cage behind one of the

many stalls.

As most of the Taiwanese spoke at least " pidgeon " English, I began to

question the stall owner (just as he began to bump a very large box of snakes

into a glass case!). Over and over he attempted to make me understand the

purpose of all his snakes, toads, bear, etc. And over and over I had to shake

my head, " I don't understand. "

Finally, it became clear: " Quack, Quack " No, he wasn't recommended Pekin

duck, he was proudly proclaiming his profession!

The moral: If it walks like a quack and quacks like a quack, there is a

pretty good chance it is a Quack!