posted
Lately I have been going to the neurology support forum on Medhelp.org and have noticed that many people post with mysterious symptoms that correspond with Lyme. I have been replying under the name "ihatepvc's" that it is possible that they could have Lyme Disease and should be tested. Another poster complained saying I "talk about Lyme Disease too much" and "blame everything on Lyme" saying these symptoms people complain about could be MS or ALS and I always suggest Lyme. I responded that Lyme is more common than the flu here in CT, much more common than ALS or MS and is a very real possibility. Next thing I knew I was banned permanently from the site and was given the same exact reason. I just can't believe that I was banned for suggesting Lyme Disease! I didn't use profanity, didn't hurt anyone, didn't mislead anyone... I just suggested getting tested! Why the hostility from the medical community?! One poster even called people like me who suggest others might have Lyme disease "Lyme Freaks".Could someone please explain this to me? I am dumbfounded. I would also really appreciate it if someone could post under "neourology support" and tell other posters why I was banned so that the same thing does not happen to them. Many people rely on this site for support and there are many with Lyme who post about it as much as I did. I would hate to see them kicked off as well. Thanks!
Posts: 144 | From Connecticut | Registered: Sep 2006
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posted
Join the crowd. This has happened on a number of other forums. Don't understand the hostility myself, so I can't explain it. Sounds to me like you were just being a good citizen.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
People get attached to their diagnoses. They have a large emotional investment in 'knowing' what is wrong with them.
What people don't always understand is that ALS, MS, and other neurological disorders are diagnoses based on symptoms, with no known cause.
Perhaps explaining that, yes, you do have ALS or MS or whatever, but it is possible that the Lyme pathogen has caused it might make people more receptive.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Remember, people go to ducks. Ducks tell them the person who told them they have Lyme is crazy. So patients often hear that there are these crazy people who think everybody has Lyme.
For your own well being, you may want to email the moderator back and say that you never told people they had Lyme, just that it was a possibility they should pursue. You may also want to ask if somebody who had ALS or MS would be kicked off if they asked people if they were tested for those disorders.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Amazingly stupid, huh!? The only board where I was taken seriously is at www.celiac.com .. Now about 5 people have gotten tested for Lyme and came back positive!!
Smart people!! And I'm so glad I could help out.
I'm sorry you've been banned. Give us the link, and we'll see what we can do.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
anyone on that forum possibly mis-diagnosed with als ought to look at the information contained at these links, in particular, the first link, below.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I just went to the site and reviewed your responses.
How DARE you do something that might HELP someone!
Not to feel bad for being tossed out on your ear. It has happened to me before too! And I was as sweet as pie.
It's the doctors who want to keep their cash cows "stupid" that is the problem.
And as we so often see with Lyme.. it's the patients who suffer.
I have signed up just to see how long it will take for me to get tossed out on my ear too.
It's a crying shame too! You are right. So many Lyme cases there.. it's unbelievable!
Maybe when I post the following quote.. I will get the boot too.. ya think?
"I would rather shoot myself in the foot than go to a neurologist for Lyme disease. I would rather shoot myself in both feet than go to an infectious disease doctor for Lyme!"
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Pauline, There were several people from LymeNet posting at MedHelp, alerting people that their symptoms may be due to Lyme.
I've been posting there for 16 months, and referring people with Lyme symptoms to LymeNet for more information.
There were several posters who have been hostile to anyone suggesting Lyme...at least one called me insane, and I know that I got several official complaints.
Several people defended me, and I'm grateful for that. But the moderator recently deleted ALL my posts on the Neurology forum, due to "the nature of my posts."
She also threatened to ban me, should I continue.
Lyme Disease infects the nerves. When the bacteria infect the nerves of the cranium, you get all kinds of neurological symptoms with the eyes, the ears, the organs of balance, headaches, pain, numbness, tingling, twitching.
People with these odd symptoms go to neurologists and get no good answers as the to cause of their problems. So they go on the internet, find a neurology forum, and post their symptoms, pleading for help.
It is painful for me when I recognize the pattern of Lyme symptoms and realize that I can't say anything, as that yoyo will complain again, and get me banned.
I probably won't be posting there much anymore.
Carol
p.s. Pauline, you did well posting as "ihatepvc's." People were actually paying attention to you, and you supplied good information.
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Tincup, We were posting at the same time, I see.
I think the only reason I was able to last as long as I did at Medhelp was because I tried to be respectful of the physicians there.
I often did not post a response until after the doctor on the forum did...they usually don't read the responses from the other patients, and one of the neurology doctors actually did know something about Lyme.
I think you'll be able to do a lot more good if you don't provoke them.
Best, Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
I have a suggestion. If you do go back on the forum, rather than suggest Lyme, I would suggest, brain infection instead. (or systemic infection in the case of other non-brain related sections of the web site).
There are a number of these that include babesia, bartonella, brucella, TB, Lyme, herpes, syphilis as well as a bunch of others. MANY ARE NOT EVEN CONSIDERED BY MOST NEUROLOGISTS/Dr's. I would further suggest that some of these can be aquired by insect bites and that to figure out the probability, one has to look at the risk fators (which again neurologists seldom do).
Lyme has a stigma attached to it (thanks to some wacko patients) and it is best not to stress the issue and instead point out that there are a number of infectious diseases in the same catagory as Lyme and should be looked at.
Just my thoughts.
Posts: 1184 | From north america | Registered: Feb 2003
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posted
This topic is a very personal one for me. I am now banned from the very site where a nurse caught me with Lyme. Otherwise, I think I might never have been diagnosed and would have remained a medical mystery and died a medical mystery, as no doctor here was going to diagnose Lyme.
It was the dercums_disease yahoo site. People have multiple lumps and it is a mystery condition and does need to be solved. I was on there because I have one lipoma and wanted to be involved with an active discussion group.
When the nurse caught me and I tested positive, then there were two of us talking about Lyme there. We got banned. I still read the emails and I see posts sometimes that sound like Lyme.
I wasn't saying that the person had Lyme/co's. I wasn't saying they didn't have dercums. I was saying that the symptoms they were describing also sounded like Lyme, had they ever been bitten by a tick, and to consider bloodtests through Igenex.
I think this is a terrible thing for a site to do -- to ban members who raise the possibility of people having this plague. They might need to know. I certainly did!!! #*$%&^@$%^$*&#$%^*!!!(that's cap lock swearing!)
Posts: 13116 | From San Francisco | Registered: May 2006
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quote:rather than suggest Lyme, I would suggest, brain infection instead. (or systemic infection in the case of other non-brain related sections of the web site).[/QB]
Yes, I agree, must get smart "Lyme" has got a very bad name and the minute you use it, you get all kinds of bells ringing
quote:There are a number of these that include babesia, bartonella, brucella, TB, Lyme, herpes, syphilis as well as a bunch of others. MANY ARE NOT EVEN CONSIDERED BY MOST NEUROLOGISTS/Dr's.[/QB]
Absolutely! suggesting "some" infectious process is smarter and probably closer to reality than "just Lyme". The only problem is that most people/doctors want ONE bug to be identified and held responsible for their symptoms. The possible complexities please nobody!
quote:Lyme has a stigma attached to it (thanks to some wacko patients) [/QB]
I agree, some patients have damaged our collective image more than any hostile doctor could ever hope to do.
quote:Just my thoughts.[/QB]
Mine as well!
Nelly
Posts: 416 | From france | Registered: Oct 2001
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My mother comes storming into my house the other day and tells me that my whole family (not hubby), thinks that I am too attached to my lyme diagnosis (CDC pos test and all symptoms).
She said " I think you have MS and need to see a neuologist...I don't know why you have your head in the sand about this...if it was lyme, you would be better by now (one yr into treatment).
So there you have it, maybe I am attached to my diagnosis. I told my mother that unless a neurologist could give me a guarantee of 100% recovery from this devastating illness - I was staying the course.
-------------------- We are spiritual beings on a human journey...
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
I used to be met with similar responses on immunesupport.com when I first announced I had discovered I had Lyme and not Fibro and suggested others check it out also........some people were pretty hostile.
But, after much 'nagging'and rubbing off on others, several of those folks are now regular posters here on Lymenet.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Nelly,
For me, it is even to the point that I try to avoid the use of the word "Lyme", at least with some people. Instead I often refer to my unfortunate condition as a neuro borreolis infection.
This being said, the situation is changing... slowly, still many Dr's. even those that treat Lyme as a major part of their bussiness complain that there are many people that eventually come to see them that are convinved of having Lyme actually do not. And worse yet, they become abusive and even violent and threatening when they are told Lyme is not the problem by the LLMD.
What This disease needs is a new and improved name with a solid diagnosis criteria to be circulated to everyone (like the ILADS one). Unfortunately, This won't happen until the the ILADS - IDSA war is over.
HB,
I suppose ther are two questions that should be asked. The first is if the treatment for lyme has been working. If it has then I would think it should be a no brainer to anyone to understand that it IS lyme (or its freinds)as MS does not respond to antibiotics.
The seocnd question is that there is a possibility of having LYME + MS, but would a neurologits every entertain that idea, Likely not.
If you do have Lyme and you want to refer those that question it and its sometime need for long treatment, send them over to columbia lyme.. Dr. Fallons work. That site is pretty good at showing the full range of brain related things that can result from Lyme, both short and long term.
Don't forget, that your mother is liley trying to do what she feels is best but as is often the case, the efforts may be misguided for a lack of understanding and more importanly not having experienced it first hand.
Good Luck.
Posts: 1184 | From north america | Registered: Feb 2003
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posted
Everyone, thanks for all of your posts. I feel better knowing that I am not the only one, but sad to see that it was not just a single occurance. I see that Hikerunner was also kicked off and I feel sad and still confused at the hostility associated with Lyme. I just don't get it. My GP who is actually pretty Lyme literate and goes to all of the ILAD meetings says he sees so much of it in the summer here in CT, he feels like he should almost treat all of his patients with antibiotics in September as a precaution and yet, the people running this board and some of the posters don't want to hear anything about this very common infection. It is a complete mystery to me. A Lyme doctor told my friend he feels all doctors should be given an IQ test before they start practicing, some are so blockheaded when it comes to Lyme.
Posts: 144 | From Connecticut | Registered: Sep 2006
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I just went over to medhelp and have to admit I'd never been there. My jaw had to drop with what so many are going through and yet when they get solid advice about lyme, it's deleted or belittled.
I was once one of those people BEGGING anyone for help and saw all the specialists and went through so much of what many in neurological categories or even the fibro category talk of.
I was unlucky in that I would go to the support groups of what I had been diagnosed with, ie fibro, migraines, possible M.S. or Lupus, etc, and I kept hitting dead ends.
It was my N.D. that suggested I get more extensive testing for Lyme through Igenex and my M.D. REFUSED to do it and also discontinued the entire family as a patient although I was the only one that was sick.
The N.D. ran the test himself, I tested positive and he referred me to an LLMD. But the fact is, is I went FIVE YEARS with the run around that is being discussed over there and I went no where.
I think that board is doing a major dis-service to totally tell people they don't have lyme without having them rule it out.
Why is it they can tell them to get a MRI for M.S. but NOT be told to get lab work at Igenex for Lyme.
It does appear that if we go in there, we have to not use the word "lyme" and focus on the co infections. I wish someone had been able to reach me in my five years of search to even consider Lyme.
I ruled it out after three negative Elisa tests, but if only I knew then what I know now and it's sad to see notes over there that could have been written by me and seeing they are being sidetracked over even getting tested. So sad!
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
Hikerunner, I'm sorry to see that you got kicked off as well because your posts were nothing but helpful and kind. I will get back on the site under another e-mail and will continue to post but in a more subtle way until I am kicked off again. Recently there was a post - I don't know if you saw it - of a mother posting about her child and whether four weeks of antibiotics were enough (what her doctor prescribed) for late Lyme Disease. How can people like us not respond?? I also urge everyone to post as well until Medhelp has to acknowledge that Lyme is a REAL possibility and concern. It is Medhelp.org under Neurology and Neurology support. I sent the moderator a scathing e-mail and if she responds I will post it.
Posts: 144 | From Connecticut | Registered: Sep 2006
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I could not reply to your message because your mailbox is full. I went to one of the same doctors and would like to discuss...
Posts: 144 | From Connecticut | Registered: Sep 2006
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posted
This is one of the sorriest acts of stupidity.... the banning of people who are helping others
Carol from pa responded to my cries for help on medhelp.org and now I have been officially diagnosed and am being treated by a real LLMD in B.C. Canada.
Thank you endlessly, Carol!! I often go back to medhelp.org and have been seeing the same stupidity you all have.
there is a certain level of violent denial about Lyme that I had no clue could ever exist about ANY disease. every doctor I've seen (and there have been MANY) has either rolled their eyes at my educated insistence of Lyme or admitted that they know nothing about it and don't WANT to know....can you believe that?!?!?!
One dr. actually told me that he didn't want to know about how to treat or diagnose Lyme.
you know why that is?
because he's a good doctor that actually cares about his patients from the Okanogen in B.C. and there are only 2 other real LLMD's doing anything here and they're both under violent attack by the B.C. medical board.
What dr wants to become a bullseye for the rest of them? My LLMD told me the other day that he might not be here in a year because they're trying to close him down. attacking his clerical record keeping because they can't find any viable reason to revoke his license..
We cannot just stop posting or treating or helping one another. There's only one humanity and it's all we have . too many people are suffering.
we'll keep changing emails if we have to to be able to put even one post on a forum to help ONE person get knowledgable help for this friggin bacteria..
-------------------- endless peace, Baladeva Posts: 16 | From Salmon Arm | Registered: Nov 2006
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posted
My wife's family in Wisconsin has the classic symptoms of lyme. But, when I suggest they get tested for lyme they tell me to shut up and call me me crazy.
conspirancy theory: Yes, I believe there is. But, not the way you may think.
There is a lot of money being made by selling people on the Low fat and low cholesterol theory..
It is all a pack of lies to make money selling cholesterol(statin) drugs (they will kill you) and the so called unstaturated fat cooking oils (transfat poison).
The low natural fats diet will damage your immune system and leave your body wide open for diseases. Notice that the super strep bug has just popped up in the last 10 years. This is the result of low fat diets damageing the immune system, not due to a "new" type of strep bug.
Of course the ducks go along as they are under control of the drug companies that make a lot of money from sick people. The unstaturated fat cooking oil makers make big money selling the poison that makes people sick.
It is a closed loop. You try to break that loop and you will get hammered... They know what they are doing...
It surprises me, about how vicious people become when trying to defend the low fat poisons...
I noticed that New York city is trying to ban transfat (veggie) cooking oils. Somebody is beginning to wake up... Interesting!!
When Dr. Atkins came up with his high natural fat diet and proved that it worked with an interesting side effect of better health and energy.
They came down on him like a ton of bricks. I still say his death was no accident...
Lyme, Aids, so called heart disease, Super strep, and mad cow/human (caused by industrial pollution) is all part of the man made diet of modern man...
Remember: All Plagues are preceded by famine. Now we have a man made famine and the Plagues are here...
Tj
Posts: 192 | From Phoenix, AZ | Registered: Apr 2005
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posted
I am not sure if everyone realizes it or not, but the docs who answer patient questions for the neurology forum at MedHelp.org are employees of the Cleveland Clinic. So unfortunately, they will not be very Lyme literate.
I used to post there sometimes, but just have not had time to even visit the site in probably over a year.
Everyone who posts on that forum or any other forum to educate others about Lyme and other tick-borne illnesses should give themselves a round of applause. You are providing a public service and although not everyone will share your views the more we talk about these illnesses the more they become real possibilities to sick people whether or not their ducks agree.
Keep up the good work.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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People get attached to their diagnoses. They have a large emotional investment in 'knowing' what is wrong with them.
I read this a few times...this is exactly why people don't want to explore other avenues when they are given a dignosis. This says it all!!
Posts: 263 | From Georgia | Registered: Feb 2006
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi All
I used to go to a candida site to help folks- I used to think I just had candida--
I think many of these folks had Lyme-- I made the segestion that they should look on LN for answers--
Many did and it helped them--
I want to go back to the site but it was bookmarked on my PC-- PC died-along with bookmark list--Ouch-
I have not been able to find it again-
I have never been thrown out of anything except the Cub Scouts --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
Let's not forget that people with other autoimmune illnesses face this kind of violent denial from friends, family- and even doctors.
A friend of mine, an RN, who has MS (turns up with lesions on an MRI, responds to steroids, has attacks brought on by heat, and can hardly walk)was recently visiting her neurologist when she had a flareup of her MS symptoms, and the neurologist asked her (remember she's a medical professional herself)
'do you think this might just be all in your head?'
At this point my friend had to restrain herself from hitting the doctor with the cane that she needs to walk.
I don't know where this attitude comes from, and I dont know how to make it stop, but it's doing incredibly evil things to patients whose illnesses don't have a straightforward 'cure'.
-------------------- Symptom Free!!! Thank you all!!!!
I was actually one of the few people that I ever saw the doctor say that my symptoms sound like Lyme disease and he would reccomend abx treatment.
Now I can't even find my post!!! They have taken it off!
If it wasnt for Medhelp and Lymenet I probably would not have been diagnosed and would still be acutely ill.
Now when someone posts with almost identical symptoms there is no mention of Lyme, except for a few people who understand it.
Can you re-enter under a new name?
Steve
Posts: 34 | From China | Registered: Aug 2006
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
I have never been to this site(med help) so I popped over for something to do on a lonely Christmas day.
On the arthritis board somebody posted they went camping and a couple weeks later came down with double vision, low headache, and it resolved after awhile,(they did extensive testing to no avail) and then it turned into a crunchy neck when turning.
NOW ,what does that sound like to you?? Then the orig. poster ask the doc if she needed to get a lyme test.
DOC replied "that would be a real 'unsual' presentation of lyme disease!!" blew that off and went on his merry duckie way suggesting this and that,,,which made little sense. LIKE follow up with your pcp.
Boy that site is indeed full of 'potential' lymies. I feel double sorry for them. Is there a way to private message or regular e-mail the posters over there 'without' going thru that site,,,in other words NOT posting the info,,,just giving it to the suffering person???
The arthritis board is FULL of them and NOBODY, cept one person, has said anything really constructive to them,,,you know they are getting the duck run around!! I left my private e-mail for a few so they 'could' contact me but dont know IF they get notices that somebody posted to their message OR they have to find them on their own.
I didnt let on of the lyme awareness they NEED for fear of getting branded a crazy. And get booted
What else can be done long term for these poor souls who are searching just like I was years ago??? Wish I could get the bells and whistles to ding in their head like mine did,,,just reading down a sx list.
I am NOT stupid enough to think 'everything' is lyme,,,but if the shoe fits and sxs really match,,,why not get a good Igenex test??? Of course knowing that it isnt 100% right either. Easier to rule in than positively rule OUT!!!
With ALL these people we need 10 times the numbers of LLMD's just to wade thru them!!!
I guess I am too used to my home base where we dont have it so MUCH,,,but obviuosly we HAVE it!!! It really is an epedemic back East and North isnt it?? I guess the south would be bad too.HOW many people really have this and just DONT know????
My Christmas wish is all things are figured out for the good of the masses of people and this gets wiped out by 'natural predators',,,fat chance tho,,,but I am hoping tho!!!cuz I remain--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
Went to the site and clicked on fibromyalgia under the post "In terrible pain but no answers - not sure can't take much more" and 2 posters replied. Both were on the MP and one mentioned inaccurate Lyme tests so it looks like some people are getting through for the time being..
Posts: 117 | From . | Registered: Oct 2006
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posted
I also typed lyme into the search engine and Hits 1-10 (out of about 1,901 total matching pages): came up although I haven't clicked on any of the posts to read them yet.
ihatepvcs it looks like your posts are still there. Is there a moderator on the forum you can contact to ask why in fact you got booted?
Posts: 117 | From . | Registered: Oct 2006
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Don, It is against the rules there to post your email addy. The moderator will likely remove your post.
They also don't want you to post links...but if you post the url to a site, it does not turn into a link, so I was doing that.
Don, it would be all right to post your personal experiences, such as "I had arthritis in my knees and my hands. Later on I found out it was actually due to Lyme Disease."
If I thought the person would benefit, I would suggest that they could post a query on the Medical discussion forum at LymeNet.org, listing their symptoms and previous test results.
If anyone plans to post there, please do read the rules.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
This has been a very informative thread. I had no idea there was so much open hostility out there on some of these websites when it comes to suggesting the possibility of Lyme.
It's apalling to think these websites are using censorship to prevent any "free thinking" on the part of the readers. That's very, very spooky.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Well, I went to MedHelp and regsitered, and made a few posts.
The way the forums are set up is a little confusing, so I'm not sure I can find my way back to where I posted!
Anyway, we will see what happens....
As others have pointed out, there sure are a lot of potential Lymies over at that website....
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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posted
Please read this. It applies to everything we are fighting for here, too. It just goes to show how badly the FDA, CDC, NIH & IDSA all try to suppress the truth. It happens on many fronts. Perhaps this will give us a bit of insight into the whys of it all. We are not alone. Congressman Ron Paul is questioning it, too.
Free Speech and Dietary Supplements
by Ron Paul
Before the US House of Representatives, November 10, 2005
Mr. Speaker, I rise to introduce the Health Freedom Protection Act. This bill restores the First Amendment rights of consumers to receive truthful information regarding the benefits of foods and dietary supplements by codifying the First Amendment standards used by federal courts to strike down the Food and Drug Administration (FDA) efforts to censor truthful health claims. The Health Freedom Protection Act also stops the Federal Trade Commissions (FTC) from censoring truthful health care claims.
The American people have made it clear they do not want the federal government to interfere with their access to dietary supplements, yet the FDA and the FTC continue to engage in heavy-handed attempts to restrict such access. The FDA continues to frustrate consumers' efforts to learn how they can improve their health even after Congress, responding to a record number of constituents' comments, passed the Dietary Supplement and Health and Education Act of 1994 (DSHEA). FDA bureaucrats are so determined to frustrate consumer access to truthful information that they are even evading their duty to comply with four federal court decisions vindicating consumers' First Amendment rights to discover the health benefits of foods and dietary supplements.
FDA bureaucrats have even refused to abide by the DSHEA section allowing the public to have access to scientific articles and publications regarding the role of nutrients in protecting against diseases by claiming that every article concerning this topic is evidence of intent to sell a drug.
Because of the FDA's censorship of truthful health claims, millions of Americans may suffer with diseases and other health care problems they may have avoided by using dietary supplements. For example, the FDA prohibited consumers from learning how folic acid reduces the risk of neural tube defects for four years after the Centers for Disease Control and Prevention recommended every woman of childbearing age take folic acid supplements to reduce neural tube defects. This FDA action contributed to an estimated 10,000 cases of preventable neural tube defects!
The FDA also continues to prohibit consumers from learning about the scientific evidence that glucosamine and chondroitin sulfate are effective in the treatment of osteoarthritis; that omega-3 fatty acids may reduce the risk of sudden death heart attack; and that calcium may reduce the risk of bone fractures.
The Health Freedom Protection Act will force the FDA to at last comply with the commands of Congress, the First Amendment, and the American people by codifying the First Amendment standards adopted by the federal courts. Specifically, the Health Freedom Protection Act stops the FDA from censoring truthful claims about the curative, mitigative, or preventative effects of dietary supplements, and adopts the federal court's suggested use of disclaimers as an alternative to censorship. The Health Freedom Protection Act also stops the FDA from prohibiting the distribution of scientific articles and publications regarding the role of nutrients in protecting against disease.
This legislation also addresses the FTC's violations of the First Amendment. Under traditional First Amendment jurisprudence, the federal government bears the burden of proving an advertising statement false before censoring that statement. However, the FTC has reversed the standard in the case of dietary supplements by requiring supplement manufactures to satisfy an unobtainable standard of proof that their statement is true. The FTC's standards are blocking innovation in the marketplace.
The Health Freedom Protection Act requires the government to bear the burden of proving that speech could be censored. This is how it should be in a free, dynamic society. The bill also requires that the FTC warn parties that their advertising is false and give them a chance to correct their mistakes.
Mr. Speaker, if we are serious about putting people in charge of their health care, then shouldn't we stop federal bureaucrats from preventing Americans from learning about simple ways to improve their health? I therefore call on my colleagues to stand up for good health care and the First Amendment by cosponsoring the Health Freedom Protection Act.
I wondered where all your posts went, I seen them on there. I am awaiting an appt at a LLMD.
I recently seen a new neuro, and she sent me for a bunch of bloodwork, and if this comes back normal, she wants me to get a LP done.
I don't think that its wrong at all what you gals have been suggesting at Med-Help.
It has helped me alot. As I feel that I may have Lyme. My MRIs have been normal, but my symptoms are getting worse.
All you are trying to do is help people that are in need. And I guaranteed that IF I do turn out and have Lyme, I will post it on the Neurology, and Arthritis boards there immediately.
I will also mention all of your names, and tell everyone there that you were all banned for trying to help people because you recognized their symptoms, and tried helping.
I don't care if I get banned or not, after all, I won't need to go there anymore, right?
I hope you all had a Merry Christmas!!!!
Posts: 21 | From Pittsburgh, PA. | Registered: Mar 2006
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi ALL
All this talk about Banning folks from sites brings up subject We ALL need to know about--
Big Bussiness is Trying to Split the internet up into Sections--
High Speed and Low Speed ---
There reasioning for doing this sounds logical at First Glance--
But if you Look alittle deeper into the details - things that can happen are Clear-
Lets say Bob is a Large Lending company- Bob has money invested in all kinds of bussiness--exp. Insurance -Medical- Manufacturing -Information-ect-
All Kinds of things---
Bobs Friend -Dave ownes a Internet Provider- (example -Time Warner- ATT - others) --
Now Larry enters the story-- Larry dose not Know Bob or Dave --
Larry is a Customer of Both- Bob and Daves companies tho --
Larry buys his Medical Insurance from a company that Bob has Money in-
Larry gets his Internet hook up from Dave --
All seemes to be going Good So Far --
Now I am going to add a Twist to the story--
Larry - Gets Bit by a #$%* Tick and gets Lyme and a couple of co Infections--Ouch
After a month or so Larry is feeling sick- --He cant figure out what is wrong--
Larrys Doctors - -Say they Have No Idea whats wrong with Larry but for him to come back for a visit in 2 months --
A friend of Larrys tells him that his illness sounds like Lyme Desease-
Larry goes home and Looks on the internet to see if he can figure out what is wrong with him --
He Googles Lyme and finds Some sites-- The Lyme sites ALL say Perty Much the-- Same Thing--
3 weeks of ABX and you will be Fine-- Larry also lives in Texas so he Really dose not need to worry- No Lyme in Texas-
Well - Larry Really cant find Any Other info on the net about Lyme -- He even Looked back 10 pages on a Google search --read everything--
After spending 30 hours reading sites- All the sites said the same thing--
Larry figures he has read ALL the Good info that the net has to offer --
On Larrys search of the internet he did Not Ever See -(Find)--Lymenet.org
Larry has No Idea Lymenet exisits --
What Larry did not know-- is that his Search was Doomed to Failure before he even started it---
This is Why-- A few months before Larry got sick the Lymenet site was put on the LOW SPEED internet connection --by Dave --
A High Speed connection for LN cost to Much- More than LN can Afford --
Dave can set the Price to what ever he Likes because he has Total control of Pricing --$$$$$
Being on the Low Speed internet connection LN takes- Forever- to load up a page and the site crashes Alot-Hassel ect-
The Reason Larry did not Find LN is because BOBs (Medical insurance co.) asked his friend Dave the Internet Provider-
To turn down the speed on LN site $$$ and make there connection Glitchie --
You See Bobs Insurance company has been getting Alot of his Insurance Customers(Larry) saying They Think they Might have Lyme--
This Lyme Thing is Costing Bobs Co. Alot of MONEY--$$$$
So Bob wants to Stop people from figuring out they have Lyme -
Lyme $$$ No Such Thing $$$
That is ALL Bob Company wants to hear- and thats ALL Bob wants You to Hear -$$$$
November of last year (2005) Congress passed a Secret LATE Night Bill(2am) that will Break Up the Internet into 2 speeds(tears)--
The Break Up of the net was- Well on its Way- Until the Public found out what was going on-
A Tempary Hold was Ordered by a Judge- because of Public Outcry --
The Secret Bill is Still Law at the Moment-- Just waiting on a the OK of the Court-Ouch-
So at the Moment LN is Just One Click away- but for how long?
EVERYONE has the same Access to the net Now- Big Companies to You and Me- Same Playing Feild --
But if BoB and Dave have There Way -- Larry is Screwedd --
BoB and Dave are Now putting out Tons of Misleading Comericals ect--
Trying to confuse the Public--YOU --
You Want- NET NEUTRALITY ---
Dont be mislead by the Commericals--
Bill Moyers on PBS TV has a 2 Hour program on Net Neutrality --(Very good)
I was Lucky enough to have seen it on PBS-- or I would not have a Clue about the subject- Like Most people--
Bill Moyers is a Awsome Man-- Very Honest-Has your Best intrest at heart- (He Lives in Austin also)
Bob and Dave want to Keep You Clueless-- Dont Let Them--
I know this post was alittle off topic- and was Real Long-- (Took me 3 hours to type)--Ouch--
But I feel it is Important that You know what is going on--
There is information on the subject on line -Mis information too-
Net Neutrality is what You Want---Jay--
Ps --Bob- Dave and Larry are Fictional People at the moment- Lets keep it that way --
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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I am so glad you posted this!!!! I knew about it but not the secret session in congress.
I also think many people have no clue about this. I forget how I found out about, but it shocked me. I tell others about it, but most do not know or think it cannot happen.
How about if you post this again in it's own thread so others will read it, too.
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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posted
I signed up again under a different e-mail address and name and got kicked off again. Didn't even mention Lyme but my other e-mail address has my last name in it too. Hilarious.
Posts: 144 | From Connecticut | Registered: Sep 2006
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
I'm posting once or twice a day there - usually in one of the Nurology forums or the Arthritis forum.
I've mentioned coming over to LymeNet for info, the fact that the CDC, NIH and IDSA only have part of the Lyme story right, and the fact that Lyme and auto-immune disorders often go together.
I'm sure it's just a matter of time before I get the boot.
Tabers makes a good point. Those who posted at MedHelp and found out they had Lyme should go back there and post their stories. See what happens.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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posted
Truthfinder - I am surprised, it's almost as if they have a new moderator. It was always so nice because you never felt like anyone was monitering your postings. I just wish someone who did not care about posting on the site would get on there and let everyone know that several of us have been banned and that they should be careful about discussing Lyme if they really need the support from that site. That site has gotten me through some tough times with heart issues and I am grateful for it. If I need to in the future, I will get back on but right now I am really turned off by their ignorance and meddling. The moderator obviously lives in an area where Lyme is almost non-existent and is one of those people who if they don't see it - it doesn't exist. Good luck and hopefully they won't get you too.
Posts: 144 | From Connecticut | Registered: Sep 2006
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posted
I originally went to medhelp neurology forum several years ago and the doctor said he doubts it was Lyme. He said maybe it is a connective tissue disease. Two people responded and told me what I described sounded exactly like their story. They told me about Lyme.net and to get to a LLMD. So I have a place in my heart for Medhelp.
Posts: 649 | From United States | Registered: Dec 2003
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Tabers, I saw that post yesterday that you are talking about in the open Neurology Forum - where someone was warning people not to post about Lyme Disease or they would get kicked off.
The topic had been deleted when I checked this morning.
Pauline, it does make you wonder what changed over there, doesn't it? I think you deserve some explanation from those people.
I went ahead and posted yesterday about the upcoming TV program about the MS and Lyme connection on the "open" Neurology Forum. So, the word "Lyme" is right there in the title of the topic. I sort of expected it to be deleted, too, but so far it is still there.
We shall see.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
It's so terrible that this is happening.
Posts: 6638 | From Michigan | Registered: Jun 2001
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Yes, since this thread was started, I have been over there a couple of times and feel so saddened. You can tell there are deleted notes when someone is talking to someone that isn't listed in the reply.
I have seriously felt the urge to go out there complaining of all my symptoms that I had for my five years before being diagnosed, but write it as if I don't have a clue what is wrong with me.
Then perhaps after everyone misdiagnoses me along with all the other specialists I saw, I can then say I FINALLY got my diagnosis and start talking co infections.
Would they delete me for stating my diagnosis that perhaps others would relate to with all my symptoms? After all, I wouldn't say what I had.
Since I haven't posted over there before, they won't have any reason to boot my email address and I can spill all the "classic symptoms" that perhaps others will see.
So those of you that post over there, which topic would be most beneficial for me to post my illness asking what the heck is wrong with me?
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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I think if you just post on the Neurology Support board and name your symptoms - even questioning if you have Lyme is okay. It's when those of us who are all too familiar SUGGEST that others might have it, or suggest they get tested that the moderator has a problem with. I did send an e-mail but the person who replied said they "didn't know what I was talking about". Maybe they think we are acting as doctors when we suggest a diagnosis? How else do we "support" people though? Just say "good luck"? I saw the posting too warning people not to post. That didn't last long. I can just imagine this moderator is from Florida, knows nothing of Lyme and is sick and tired of reading posts about some vague, mysterious illness she has knows nothing about. It's just plain ignorance. They don't WANT to know. It doesn't apply to their lives.
Posts: 144 | From Connecticut | Registered: Sep 2006
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posted
Wow, more power to those who have tried to inform and help others on that sight.....I find it incredibly difficult to use.
I did notice that our old friend Lost City Agent has found a home there...still trying to "help", I mean CONFUSE others and being
Looks like he posts as JCmcc. I wonder if he has created any other "characters" whose make believe questions he can answer? too strange!
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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posted
Soujourner - Really? I always enjoyed reading JCmcc's posts. I thought they were very informative and good hearted. Did he used to post on LymeNet?
Posts: 144 | From Connecticut | Registered: Sep 2006
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Hey, Sojourner -
How did you figure out that JCmcc is the same person as Lost City Agent?
I never did understand why he got kicked off here. I never saw a post from him that was nasty or anything. Does anybody know that story?
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Cathy, that might be a very intresting experiment....
As you may have noted, there are 2 lists of forums. The first list is where a duck will answer you within 10 days or so. The second list has "open" forums where just regular people post.
It is odd that there is no open Arthritis forum.
Also, if you post a new topic, you will be given a list of what category to put your topic in. They list Lyme, even though there is no forum for it. (?)
Like Sojourner said, the way the website is set up is difficult to navigate.
Let us know if you post a topic there.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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I would agree that most people should look into the variable causes, but, I highly doubt Lyme disease for you. There are many people who blame LD for everything w/o clinical proof. Many of these people believe in conspiracies via govt, et seq. There is an entire mess with it. Due to locale and your symptoms I would not worry too much about LD. Also, many of these people, and I do not imply this about anyone here, claim to have LD without any serologic proof. Be wary of this and stay with your attending neurologist.
Good Luck! JCmcc.
Here's another where he explains his clinical system using pathology/pathogenesis. This was the clincher because he also talked about this on lymenet.
Sorry for the confusion and I am guessing that your constant use of the term "lyme freak" is directed toward my prior remarks somwhere around C4 or so. I referred to me, not to you. First of all some on here posting are medical students, psych students, et al who want to learn from a patients perspective. In the least keep in mind that e-mails, IMS, postings are hard to measure. My story with Lyme disease has led me into my profession and I am a LD/MS patient. I secured my own diagnosis by designing a clinical system using pathology/pathogenesis to diagnose myself-doing this not even knowing what Lyme disease was. I saw the MRI report which incidentally happened in CT, though I am from WA, and it said, possible Lyme or MS, etc. Naturally anything but MS sounded good to me. I looked into Lyme and the providential story follows. Neurologists wouldn't have it, YALE upheld my self dx. Therefore, I know all about Lyme and am dedicated to it. What I am not dedicated to is believing that everyone on the medhelp neurology section suffers with Lyme disease, that it is a conspiracy theory, etc. There are popular Lyme sites that I feel are harmful. Nothing personal, and, there is a fine line on this website between good suggestions and diagnosing others (not that you have). The MDs spectators, med students, et al., come here and do not and cannot diagnose because these patients have not been examined by them. I caution this practice for anyone.
Regards, JCmcc.
Oh yeh, it's definitely him.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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posted
Pauline, He made up fictitous people to have conversations with on the forum.
I feel sorry for him, but he also makes me mad because this lyme disease stuff is high stakes business, and we don't need a strango messing around with us.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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As a patient with a MS diagnosis (since 1990), but thankfully now under the care of Dr. P in CT I post on www.msrefugees.proboards82.com and would welcome ANYONE to join in...
there are MSers over there that also suffer from Fibro, Lupus type symtoms, Brain Fog, low body temps, etc. all the usual suspects!
After a bit of resistance from some bloggers the Administrator set up an entire section called "OTHERS" ABX and is very open to all information that is out there...
You'll find bloggers from the Cpnhelp site posting regarding their overwhelming success with antibiotics treating Chlamydia Pneumonia.
I seem to be kind of alone and could use anyone's company trying to get the difficult word out regarding borrelia. The resistance is also felt on msrefugees, but I do get people asking questions.
Please don't be shy if you're not a MSer...I personally believe that if the dots were connected it's all one big BAD bunch of buggers..of course I included all the co-infections
As for you Pauline, thanks for trying to help, and letting us know how resistant mainstream thinking really is..
Happy healthy New Year, tori
Posts: 158 | From PA | Registered: Oct 2006
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posted
Tory -- I read emails from a group, [email protected]. It's a very interesting discussion about the efficacy of the naltrexone medication. (www.ldninfo.com). Folks here are trying it for lots of symptoms, including alleviation of MS. Many people here also know or believe they have Lyme. You might find some supportive people here to go join you in discussion on the site you mentioned.
Posts: 13116 | From San Francisco | Registered: May 2006
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Those of you who think LostCityAgent is the one responsible for getting people banned from MedHelp are WAY off the mark.
He was banned himself, several months ago, after suggesting Lyme to several patients. Plus, several people thought he was "acting" like a doctor. Well, he is very intelligent and highly educated.
There are at least two people there, one of whom is Vega, who complain bitterly about anyone who repeatedly suggests Lyme, saying things like, "You think everything is Lyme."
I was the brunt of several of the complaints, as I posted to patients on the Neurology forum who had neurological symptoms that were consistent with Lyme.
Well, DUH.
Where else are those patients going to post their symptoms when the doctors don't know what's wrong with them....the mental health forums?
Oh, that's right, many mental health symptoms are caused by Lyme.
The anxiety level of some of the people who think they may have ALS or MS is extreme. And when they post about panic attacks, anxiety, depression, and insomnia, that only reinforces a possible Lyme diagnosis.
Some people post to the anxious ones that they should believe their docs that everything is okay, but the anxious ones just keep posting their problems and looking for answers.
Heh, like some of the people here at LymeNet.
Be careful, and use your head. Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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I was nearly banned from immunesupport for trying to direct others to lyme resources -- I became so frustrated that I stopped posting there.
Actually, if not for immunesupport, I probably STILL wouldn't have a diagnosis ... I was posting on the fibro boards there, and a few people suggested lyme... I connected the dots, and indeed am CDC positive.
Bless you folks who have the wherewithal to keep posting in other places despite the resistance -- it really does make a difference.
Personally, the frustration became too great for me, so I stopped doing that.
The layers of lies, misinformation, resistance, denial, and all the rest of it around this disease are just absolutely mindboggling!
-------------------- "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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posted
Nearly banned from immunesupport...gorgeous. Just what do you think we all deal with here? Do you know who runs that site?
Next we'll hear that someone was banned from www.i-was-bit-by-a-tick.org for trying to suggest the possibility of Lyme. I'm getting persnickety. Or should I say pers-tick-ety?
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Carol in PA - the one who was complaining about me posting about Lyme Disease posted as "Between". I saw JCmcc just posted to someone that Lyme should be checked into. He seems to contradict himself some, but I think that maybe that he is trying to be careful not to get kicked off Medhelp again. I wish we could send a letter to Medhelp with all of our signatures to make a point.
Posts: 144 | From Connecticut | Registered: Sep 2006
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posted
I've been told by some that mainstream drs. say those with Lyme and especially those on the internet are in a "Lymecult."
I can't believe that they say that about us! If they really believe that, maybe that is why the drs. and owners of those sites are kicking anyone off their boards who suggests Lyme might be the real problem.
We really have big battles on all sides, don't we? I'm thankful for Lymenet. I found it by doing a google search. Otherwise, I wouldn't have found this support gruop. Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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posted
Actually, Robin, I *don't* know who runs that site -- my naivete over-rode my objectivity and general suspicion of the world-in-general in my need to find help and answers with my declining health last year-- needless to say, I'm a bit wiser (and more jaded, sadly) now.
I could go look up the info right this minute, if it really mattered to me -- but what matters now is that I've found lymenet and found a good llnp, and I'm on my way to much better health.
All the politics and lies do make me sad, though. Imagine how many lives are being ruined, right this minute, by lyme....
-------------------- "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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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
After hearing from all of you about other websites that are antagonistic towards Lyme posters, I feel pretty lucky that I have not run into that much resistance on the support forums I have visited.
Also, it is one thing for the people on the forum to have conflicts, but quite another for the board itself to start censoring the posts. Because then sick people going to those forums will NEVER be exposed there to any information about Lyme. CRIMONY! That just makes me kind of crazy.
Hey, maybe what we should do is post on a bunch of OTHER forums about avoiding MedHelp because of their intolerance of anyone who suggests Lyme Disease. I belong to a couple of chronic pain support boards, and I could post it over there. MedHelp can't do squat to stop us from doing THAT.
I don't think complaining to MedHelp will do any good. Their minds are made up.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Are Wormser and Dattwyler the moderators at MEDHELP.ORG?
(or their proteges)
Posts: 2557 | From home | Registered: Aug 2006
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