Basically, the two "researchers" did a random internet search, finding sites with Lyme in it, and then categorized them as to whether they are providing accurate or inaccurate information.
ILADS and Lymenet are both categorized as providing inaccurate information.
OK, we all know this is bs. But it is rather shocking to see a publication from a major infectious disease journal and therefore which many GPs read and follow.
No wonder when I saw a colleague of my doctor, when he was out ill, and I asked him did he really understand Lyme like Dr. X did, he pulled the party line right out of his head andproceeeded like it was true
"Overdiagnosed and overtreated" "Oh, you are now treating yourself over the internet ... " [said with a sarcastic, condescending tone]
I am afraid that, with the except of the work at Columbia, until ILADS gets more power and money, we will not get any accurate science to help us with this dreadful disease.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Not that I wish this disease on anyone, but perhaps when someone with both power and money get's it themselves, or several of them, more can be done to speed up the process of change.
In the meantime, I do think that like others have said we are really going to have to make a lot of noise as AIDS patients did in the eighties. Be seen and heard in LARGE groups.
I don't want to pass the buck either, but because of where I am and this really needing to be done in the US urgently, I don't think I'm the best person to organize this. But, I would do my utmost to fly to wherever to be there in person.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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posted
Darryl Hall of Hall & Oates fame has Lyme or " had " it recently and was on TV talking about it but it was very brief clip
Posts: 408 | From NY | Registered: Jan 2006
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quote:Originally posted by dontlikeliver: Not that I wish this disease on anyone, but perhaps when someone with both power and money get's it themselves, or several of them, more can be done to speed up the process of change.
In the meantime, I do think that like others have said we are really going to have to make a lot of noise as AIDS patients did in the eighties. Be seen and heard in LARGE groups.
I don't want to pass the buck either, but because of where I am and this really needing to be done in the US urgently, I don't think I'm the best person to organize this. But, I would do my utmost to fly to wherever to be there in person.
I wish you were right, not that I hope anyone famous would contract Lyme.
But I'm doubtful it'll change anything. And you can't compare AIDS to Lyme, or even cancer to Lyme.
AIDS was caused by homusexuals giving it to eachother.
If the government didn't help AIDS striken, it would become very unpopular as being non-caring and prejudice.
Researching AIDS quickly became the politically right thing to do.
Besides AIDS is NOT a clinical diagnosis. There is such a thing as a near fool proof test for AIDS. You can't argue that. Even the academics can be convinced about AIDS.
Lyme, on the other hand, is caused by a little tick and strikes everybody simply because they like the outdoors. There's no political viewpoint that helps Lymies.
Additionally there's no reliable test for Lyme. Lyme disease is a clinical diagnosis, you know, like the Dr's used to diagnose people in the good old days - based on symptoms and history. This is frowned upon these days. Especially by those who are not directly dealing with patients, and those Dr's who are not all that caring about their patients, but who are more interested in making their board of directors happy. So the pencil pushers at CDC, NIH and so on, are not easily convinced about the grave nature of Lyme.
Obviously there gotta be 100's of anti-Lyme Dr's who've been striken with Lyme, don't you think? Do we really think that this will cause these Dr's to turn around and join our camp?
I don't think so! And apparantly not. Just look how few Dr's there are on Lymenet. That would be admitting fault on their part. An unlikely reaction by any Dr, don't you thinhk?
What do you think these Dr's do to cure themselves once they realize they have Lyme? I can just imagine. They'll treat themselves with abx immediately, even at the slightest suspicion of Lyme. And as we all know, quick to act is the key to prevent chronic Lyme.
Michael
-------------------- I'm not an MD. The above is IMO and in my experience as well as from health related books.
I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before. Posts: 702 | From NY | Registered: Jul 2004
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
To Clarify.
I am not comparing the two diseases - AIDS and Lyme. But, I am comparing the two political situations to with with both diseases, which are very similar.
Some here may not remember the early 80s and how AIDS was also denied and swept under the carpet, until thousands of people marched on Washington....then it started to get attention and lots of research.
So, essentially the government did NOT help the AIDS stricken for a long time, until they made a LOT of noise and also helped by Rock Hudson and Liberace dying from it I'm sure.
Some people with cancer have a better quality of Life than some people with Lyme. I was not comparing the two, but that is a fact.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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posted
I completely agree with DLLiver on this one -- politically, the diseases(AIDS and Lyme) are similar. I was around in the early days of AIDS (when it was still called GRID, or "gay cancer", etc.) and believe me, the "politically correct" thing to do was hotly debated.... plenty of folks on the far right were claiming that it was G-d's way of striking homosexuals down for their sins, etc.
The major difference, though, is that AIDS was killing people, and quickly. It wasn't really until it started spreading into the heterosexual, non iv-drug using community, that anything was done by way of treatment and cure on a large scale.
AIDS, like Lyme, has some mysterious and disturbing elements to it, too -- as in how did it just suddenly pop up and spread like wildfire in specific communities, and why is the African strain so different from the one in the US? And why did the spread of AIDS in the gay communities in the US follow so closely on the heels of the experimental Hepatitis B vaccination program, and seem to affect the very same individuals who were vaccinated?
Lyme, I think, is much easier to sweep under the rug, as its symptoms and presentation are so different from person to person, and at different stages of the illness, etc.
The article made me sick, of course -- and just look at *who* is cited in the references list regarding what consitutes "accurate information" about lyme.... never mind that some of these same authors (esp. Steere) published early papers supporting the existence of chronic, antibiotic-surviving lyme... hmmmmm......
-------------------- "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
They are fighting us through the courts, and its not fair.
Do you think its some kind of coincidence that LLMD's in all kinds of different states are brought before medical boards trying to revoke their licenses??
This is a planned attack.
The most logical theory I can come up with is that the IDSA is angry that they have almost zero patient support, which is very much unlike other diseases where major medical society's have huge support from the patients.
I think that this really gets under the skin of the ego's that these so called elite academics have, and they figure if they can find a way to revoke the license of every doctor in the US that treats Lyme Disease according to the ILADS guildlines, then they'll finally have the monopoly they want on their version of the "truth."
With nowhere else to turn, the future Lyme patients will have to turn to the IDSA physicians, and hence, we will have to support them because we will have no one else.
In turn, this legitamizes what they have been doing, and adds credability because the sick people would then support all their "valuable" research.
Make no mistake, the only way for bad men to succeed is for good men to do nothing.
I for one will not stand for this forever. There is no monopoly on the truth. So we must make sure they understand that simple fact.
We must fight back, and I'm not sure exactly how we are going to do it, and maybe this whole discussion will change with Fallon's study, and if it does, then the strategy we've been using against them will have worked.
But if that does not work, then we have to fight using a different stratagey, I suggest using the same strategy they found effective.
The court system.
We aim big, real big!
Class action lawsuit. Federal court. We will force them to answer, and win or loose, they will find that we are not going to back down from a fight.
Posts: 559 | From Cary, NC | Registered: May 2006
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
My partner got her PhD last year in computer science. Her dissertation title is (in laymen's terms): Reliability and verification of medical information on the world wide web.
She is currently working on a system that would be able to tell you if the info you are reading is reliable and credible. AS you can imagine this gets big and open ended very quickly. (what is "the truth", who is an "expert", etc)
She became interested in this because of what we went through with my Lyme and other illnesses in 2000 and 2001 as she was starting her compuetr science career. THe amount of misinformation and UNreliable information was overwhelming.
So who is to say when something is RELIABLE or credible especially when it comes to Lyme and controversial illnesses?
SHe used the article above in her research, but to what extent and HOW I am not clear.
SHe has created her own system of checks and balances (I dunno the computer lingo---it is algoriythms and decision trees and semantic analysis and words I dont even think are english) based on what, historically, LIBRARIANS have used to verify information. Only the WWW is NOT a print library and therein lies the MANY problems.
I know her system relies on evidenced based medicine along with a gazillion other variables. ILADS uses evidence based medical practices and guidelines on it's site.
I will have to ask her to see if we could go to the ILADS site and see what her system would say about it's reliability.
I know it would not give a high reliability rating to Lymenet as it is a discussion board. By nature, this board can NOT be considered reliable and has never in any historical context.
DOes that mean it shouldnt be frequented and that there isnt DANG good info on it? HELL NO! Lymenet ROCKS!
But it is a support group made up of primarily patients and NOT medical experts or people who hold advanced degrees in science or medicine.
BTW---accurate and inaccurate information is much more subjective a question than reliable or unreliable. Again, who is to say what is the "truth?"
quote:Originally posted by dontlikeliver: To Clarify.
I am not comparing the two diseases - AIDS and Lyme. But, I am comparing the two political situations to with with both diseases, which are very similar.
Some here may not remember the early 80s and how AIDS was also denied and swept under the carpet, until thousands of people marched on Washington....then it started to get attention and lots of research.
So, essentially the government did NOT help the AIDS stricken for a long time, until they made a LOT of noise and also helped by Rock Hudson and Liberace dying from it I'm sure.
I disagree. The AIDS situation was different simply because 1) patients were gays and 2) they died.
Had AIDS showed up in the 50's or 60's, nothing would have been done, cause the patients were gays.
In the 80's however, equal rights movements and feeling sorry for minorities had started to become the politically correct thing to talk about.
The famous people like Hudson and Lib dies, which we all loved so much. All of a sudden we embraced the gays and then it rolled from there.
Lyme is nothing like AIDS...politically speaking. There are no demographic group hit here. Noone dies. There's no damn test. Equal rights don't figure in here. Nobody to feel sorry for when you can't even prove to the general establishment that Lyme is the reason why people can't think and walk normal. Also, there's no money to made by drug companies on this disease. Only losses will be incured from people getting better.
Michael
-------------------- I'm not an MD. The above is IMO and in my experience as well as from health related books.
I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before. Posts: 702 | From NY | Registered: Jul 2004
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Michael,
So, as you disagree that Lyme and AIDS situation is similar in that it is 'ignored'(minimized) by government, the medical profession/insurance, etc mostly........what do you think would be a good route to change things if not by making lots of 'noise'?
Do you disagree that we need to do something about the situation?
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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quote:Originally posted by dontlikeliver: So, as you disagree that Lyme and AIDS situation is similar in that it is 'ignored'(minimized) by government, the medical profession/insurance, etc mostly........what do you think would be a good route to change things if not by making lots of 'noise'?
Do you disagree that we need to do something about the situation? DLL
I know I'll get flamed for this and I don't like saying this and I hope that I'm wrong...buttt I do not believe that we as a group have much impact...for many of the reasons I've mentioned above in my previous posts.
Sure, noise can't hurt. And for sure it helps us emotionally. But the government is generally not susceptible to noise. Is it? Not unless there's some fundamental right/amendment underlying the whole thing.
Like there was for AIDS. Like there was for racial equality back in the 60's.
But look at all the war noise. Look at all the 9/11 noise. Has anything changed?
So what do I think will help?
A reliable test for Lyme will help. One that is accepted across the board.
This will knock down the wall between the LLMDs in the trenches and the "academics"/government which I see as the main hurdle we're facing.
It will also knock down the wall to the insurance companies.
Michael
-------------------- I'm not an MD. The above is IMO and in my experience as well as from health related books.
I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before. Posts: 702 | From NY | Registered: Jul 2004
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posted
Your friend's dissertation results, if they can be boiled down, would be interesting to hear about.
I think Lymenet, particularly the newbies info, is reliable. I think the discussion areas are very supportive and everyone has their own bodies, their own views.
The article I originally posted said that Lyme was inaccurate. The word "inaccurate" is what I am objecting to. It's inaccurate according to the Steere camp. That's why I am grateful to ILADS and others who are taking huge risks in trying to get us better.
Lymenet and ILADS are "inaccurate" if you only use CDC and LDA criteria to determine what is and what is not accurate.
Squeaky wheels do get greased more often, in my experience. I think we should be as political as we can, but with no particular expectations for outcome.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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posted
to michael lyme disease does kill!lyme disease is very much like aids in some respects..alot of the after affects of aids are the same as lyme disease....we can do something about this!its is time to get everyone with lyme on a list and into groups around the country...its called ACT UP and it works...we may go to jail together but its worth it... THE TIME IS NOW!!!!! eric
Posts: 593 | From long island ny | Registered: Apr 2006
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JimBoB
Unregistered
posted
quote:Originally posted by 6t5frlane: Darryl Hall of Hall & Oates fame has Lyme or " had " it recently and was on TV talking about it but it was very brief clip
LymeInfo has sent me a couple articles on that. Got one today as a matter of fact.
He has had it about a year, and was pretty bad off for awhile and they had to cancel concerts, etc..
He is much better now and they are moving ahead, finally, with concerts, new albums, etc..
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Michael,
I just wanted to take issue with your characterization of AIDS as a "gay" disease that "was caused by homosexuals giving it to each other'
Simply, that characterization is wrong. Initially, the disease seemed more prevalent in the gay community, and they were more mobilized politically, but the disease also affected many who were hemophialiac and also, initially, the Haitian community. IV drug users were also an at-risk population.
Children who had AIDS, especially in the late-1980s, were often ostracized by playmates and their families were driven from their communities.
Had AIDS simply been a "gay" disease, it might never have spread the way it has, claiming millions of lives internationally (especially in India, which has had the sharpest increase in infections) but also in China, Russia, Africa and other countries.
In addition to the populations I mentioned above, the disease also spread through heterosexual sex -- often men who frequent prostitutes contracting it then unknowingly spreading it to their wives.
I've written a lot about AIDS in the national press, and have interviewed a number of AIDS patients who were not gay. Another area where the disease has spread is through the elderly population. Often seniors are unaware they can be infected so don't practice safe sex or think to ask if a sexual partner has been infected or tested.
Characterizing AIDS as a "gay" disease is like calling Lyme a simple disease both to diagnose and to treat.
Andie
[ 15. June 2006, 12:39 AM: Message edited by: Andie333 ]
Posts: 2549 | From never never land | Registered: May 2005
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posted
Michael, we appreciate the contribution, however Andie really makes some true points about the disease. AIDS effects everyone... homosexual people had a greater effect of the disease due to many many factors, such as a higher chance of contracting the disease during sex and being more sexually active as a revolt to society not accepting them. The reality is that many people in the gay community would be less sexually active, and have long term monogous relationships if adoption, marriage, or full benifit partnerships were offered... it is a bit of society, and the far right shooting themselves in the foot again. Being gay is as simple as being latino or having freckles, its simply who you are... now having safe sex that is a different story, and something all people should practice.
Not to get off subject, but just like someone that gets AIDS, CANCER, LYME, etc... no one should be discrimated based on HOW they contracted the disease, at the end of the day they have it, and everyone is deserving of love and respect, regardless of their life decisions. We all make mistakes or lapses of pooor judgment. I've actually had people say to me "well you shouldnt have went camping" if I didnt want to be at risk for lyme disease.
Being close minded, and ignorant is no excuse... until the disease happens to you, or someone close to you.
Posts: 48 | From Toms River New Jersey | Registered: Apr 2006
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
quote:Originally posted by cmichaelo:
quote:Originally posted by dontlikeliver: So, as you disagree that Lyme and AIDS situation is similar in that it is 'ignored'(minimized) by government, the medical profession/insurance, etc mostly........what do you think would be a good route to change things if not by making lots of 'noise'?
Do you disagree that we need to do something about the situation? DLL
I know I'll get flamed for this and I don't like saying this and I hope that I'm wrong...buttt I do not believe that we as a group have much impact...for many of the reasons I've mentioned above in my previous posts.
Sure, noise can't hurt. And for sure it helps us emotionally. But the government is generally not susceptible to noise. Is it? Not unless there's some fundamental right/amendment underlying the whole thing.
Like there was for AIDS. Like there was for racial equality back in the 60's.
But look at all the war noise. Look at all the 9/11 noise. Has anything changed?
So what do I think will help?
A reliable test for Lyme will help. One that is accepted across the board.
This will knock down the wall between the LLMDs in the trenches and the "academics"/government which I see as the main hurdle we're facing.
It will also knock down the wall to the insurance companies.
Michael
Michael, you make some very interesting points. I agree with you that we need a definite test for Lyme. It's ridiculous the runaround from the doctors/drug companies. Posts: 1366 | From Southeast | Registered: Sep 2005
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Michael,
I agree, a good test would be a good start...but perhaps to even get enough attention to make someone interested (with money to do it) we might have to make a bit of a stink that makes the news.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
A bright light in the darkness.....The FoxNews Program called Dayside, had a doctor on today talking about Lyme for a five minute segment.
He was about 90% accurate in what he said, and even talked about the importance of catching it early, because once it becomes chronic, it is so hard to dx and tx, and may never be completely resolved, leaving people with residual medical problems that can be quite debilitating. He even mentioned that some people become chronic, even after having ABX.
This doc was not an LLMD, just one of those TV docs they have on the program on a regular basis.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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beachcomber
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Member # 5320
posted
Hello, Michael!?!?!?!? Do you read the paper or watch international news? HIV, which can lead to AIDS (a rather generic term for various AutoImmune Diseases) is most prevelant among hetrosexual communities in Africa. Women and children have HIV and do die from complications of AIDS. You need to look at the worldwide statistics my friend.
Don't mean to go off on you but, your statement really hit a nerve. I am being treated by an MD who specializes in HIV/AIDS and LD. Every time I walk into that ambulatory infusion center and see my HIV positive co-patients/compatriots, I am struck by how dignified many of these people are - I am humbled. Sure, I am pretty sick, as are many of my fellow Lyme sufferers but, I do not get the stares and outright prejudice that these folks experience on a daily basis. Those outside of our little Infectious Disease world are ignorant as to what both diseases can do.
Bottom line is that WE need to educate others. Yes, it will take time. The HIV community has been fortunate that a portion of that community is made up of people who have been discrimminated against for other reasons - yes, they have already been noticed and are in the spotlight, in the press. Good for them, whatever it takes!
All we can do is keep bringing our disease to the forefront. In time, things will turn around and the ignorance will be washed away. I hope.
Posts: 1452 | Registered: Feb 2004
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I just wanted to take issue with your characterization of AIDS as a "gay" disease that "was caused by homosexuals giving it to each other'
Simply, that characterization is wrong.
Andie, I do agree with you and I meant no disrespect to gays nor to AIDS.
The only thing is when I wanna make a point, I try not get lost in the details. Thus I stereotyped a bit.
Michael
-------------------- I'm not an MD. The above is IMO and in my experience as well as from health related books.
I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before. Posts: 702 | From NY | Registered: Jul 2004
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quote:Originally posted by beachcomber: Hello, Michael!?!?!?!? Do you read the paper or watch international news? HIV, which can lead to AIDS (a rather generic term for various AutoImmune Diseases) is most prevelant among hetrosexual communities in Africa. Women and children have HIV and do die from complications of AIDS. You need to look at the worldwide statistics my friend.
Beach et al,
I didn't mean disrespect to gays nor AIDS. I agree with most of what you all say about AIDS.
But you're really missing the point.
The discussion of AIDS/gays arose as a comparison between the current Lyme situtation and the early AIDS movement in the 80s and how it was at first ignored and then later gained tremendous government support.
Do any of you agree with the prejudice and stereotyping of AIDS when it first broke out big time in the early 80's?
It was all gay this, gay that. Not until around 1990 did they start picking up on AIDS amongst women and heterosexual men.
But at that point AIDS research, detection, funding and governmental support was already well underway.
It did NOT require the knowledge that heterosexuals was at risk to over come the AIDS barrier.
Thus there was no reason to write a book about AIDS and how it affects heterosexuals for me to make a point.
Makes sense?
Michael
-------------------- I'm not an MD. The above is IMO and in my experience as well as from health related books.
I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before. Posts: 702 | From NY | Registered: Jul 2004
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Yes, it was all this gay this and gay that, but at least it was in the media (thanks to ACT UP, etc)!! That is what we need.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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posted
The media did portray it as "all gay this, all gay that", but when does the media usually present reality, fair and balanced? President Reagan didnt even want to acknoledge it existed or was a threat. The AIDS/HIV epidemic at its onset sounds offly similar to Lymes(It only exists in the northeast, there are less then a couple thousand cases per YEAR) If they sweep it under the rugs, avoid research and treatment they think it will just go away. Until thier is a way we can be treated (which will not happen until proper research is complete) the drug companies will not make money, insurance companies will not save money, and ultimately most doctors will be afraid to make a clinical diagnosis and provide treatment.
Posts: 48 | From Toms River New Jersey | Registered: Apr 2006
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bettyg
Unregistered
posted
This is an interesting subject, but Michael I'm having so many problems with you using the BOLD to quote folks.
By private message, I sent you instructions on how to delete the BOLD codes so the text appears as is without the bold, continuous paragraphs.
Michael, there are many folks on this board who have this same problem that I do from decades of having misdiagnosed lyme disease.
Could you help us all out and delete the bold codes please?
To others not knowing what I am talking about:
When you use the " ", 2nd line begins with [/B] that's the beginning of BOLD code....just delete these 4 characters and the one at the END of quote. Easy since you are there quoting them...no extra steps involved. Thank you ALL so much for helping me/so many others on this board.
IP: Logged |
quote:Originally posted by bettyg: This is an interesting subject, but Michael I'm having so many problems with you using the BOLD to quote folks.
Michael, there are many folks on this board who have this same problem that I do from decades of having misdiagnosed lyme disease.
Could you help us all out and delete the bold codes please?
How's this?
I see that you were diagnosed 6-04...so was I.
I see you were misdiagnosed for 34 years. Wow. Beats my 25 years.
About 10y ago, the right side of my right foot went numb, just like that. I could push a need through. No pain. The left side was normal.
This went on for like 6 months or so. But I just shrugged it off. Didn't really bother me. So why go to Dr about it or do anything about at all.
8y ago, I ended up in ER with heart palpitations. By the time I got there, I was fine. The EKG showed everything normal. Went to Dr. a few days later. I was fine.
Numbness came and went. So did palpitation. So did floaters and blurred vision. So did confusion. So did depression. So did lack of concentration.
In retrospect, I could have caught this stuff earlier if I had been better informed. It's not that I didn't know about tick bites and Lyme. My company had Lyme flyers in their medical booth.
I just never read anything about my symptoms. Flyers just talked about early symptoms.
I had heard other people talk about neurological and heart symptoms. But my Dr shrugged it off. And my tests were negative, of course. And I didn't think to research myself. Why shouldn't I believe my Dr.?
You know this all makes me mad. And I've become a bit cynical as a result of all this.
But mostly I'm disappointed in myself. Cause for at least 10y, I did in fact suspect I had Lyme. I just didn't act. I guess because the symptoms weren't that severe. I didn't even search the internet.
That's what really gets me. My passivity during all those years. Just putting up with symptoms. Not being curious enough.
Interestingly, when I come across people with Lyme like symptoms, and I suggest they may have Lyme, they like are in disbelief. I ask if then need a good Lyme literate Dr, and they say "sure" but never go to him or go to their own Dr. who finds nothing.
But I can tell that some of these people, who are in my immediate family, are getting worse everytime I see them. I keep talking to them about it. But I can tell they don't believe me and that they are tired of hearing my pitch.
People in general have a hard time understanding Lyme, even those who have symptoms. It's a fuzzy, hard to diagnose, hard to believe and extraordinarily complex disease.
Many people just don't buy it. And I understand why they don't.
We need a solid test to get over the hurdle and intot the mainstream.
The cure I think is closer than the test.
Michael
-------------------- I'm not an MD. The above is IMO and in my experience as well as from health related books.
I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before. Posts: 702 | From NY | Registered: Jul 2004
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Michael,
Thanks so much for your clarification, though, again, I respectfully disagree. By 1990, People Magazine had already done three cover stories on AIDS that were primarily about heterosexual transmission:
Two featured Ryan White, a young hemophiliac who died after several years of struggling with the disease. The other was about Single Women and AIDS, raising the strong possibility of heterosexual transmission.
I agree with what Jade and others have said that funding and increased research for AIDS happened after a lot of political pressure. As long as it was just a "gay" disease, it was relegated to the political/ social backburner.
Michael, you and I had some of the same initial Lyme symptoms, especially numbness in the foot. After a year of treatment, many of my symptoms have gone, but that one still remains and jeoparadizes my walking very far or for very long.
In addition, you express anger with yourself for suspecting Lyme but not following those suspicions. I fight being angry with myself, too. I didn't suspect Lyme, and worse, I was part of the mainstream media that trotted out the stereotype spring Lyme story: avoid tall grasses, long light pants tucked into socks, look for the bullseye...
I had NO idea this was a multi-systemic, often debilitating and potentially life-threatening disease.
My illness went undiagnosed for at least nine years.
Since I wrote extensively about AIDS in the mid-to-late 1980s, I've thought a lot about the similarities and differences between the two diseases. Mostly, I've tried to find things in the AIDS struggle for research, funding and public awareness that could parallel our challenges with Lyme and could help us have a sense of how to proceed.
There have been so many years of complete distortion it seems the challenge is especially daunting.
But in the face of the doctors being threatened and the numbers of those infected and those dying from Lyme complications on the rise, it seems imperative to try and find a way to break through.
I keep going back to celebrities as a key, if only because (like it or not) we live in a celebrity-driven culture. Most people on this board are familiar with celebs who have had this disease -- many of whom have come out on the other side.
But I'm also thinking about celebrities who might be interested in this without having been personally affected by it.
In the meantime, I do like the idea of marches. I agree, Michael, that Lyme is a bit trickier than AIDS in that there is no definitive Lyme test and the disease already has the repututation as just being bothersome, rather than horrific.
My sense is that as the Lyme numbers grow, awareness will grow, too. Even the entrenched medical establishment wil have a hard time holding its position in the face of growing public skepticism and anger.
I'm not personally content to wait until that time, so I need to find ways of trying to get the word out.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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The biggest problem that we have with changing peoples minds about lyme disease is that old saying, "But You Don't Look Sick". I'm sure that most of us have heard this before from friends and loved ones. A person can be in a wheel chair form lyme disease, but it will never have the visual impact of an AIDS patient with a sunken immaciated face and body that is on the verge of death.
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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My husband found an article online about treating Lyme disease. Steere, et al.
He was all ready to join the Infectious Disease Society to get the "inside research" (he's a vet.)
EEEKKK. I said. I try not to generalize, good guys, bad guys kind of simplicity BUT woah.
Sometimes I just want to bang my head against the wall. Does no one listen to me?
Had to bite my tongue to keep from telling him it hadn't been worth the waste of paper to print it out.
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It seems to my recollection, AIDS didn't get a lot of attention until white heterosexual blood transfusion recipients started to die. Then even if we could still blame gay men for their own "punishment", how could we blame women and children who never did anything but need blood.
Lyme is probably in the blood banks. It's only a matter of time. Not much comfort, is it.
Posts: 353 | From Florida boonies | Registered: Nov 2005
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So you had foot numbness too. How weird is that. Gotta be one of the strangests most harmless symptoms of this disease. No wonder we can't convince Dr to treat us. How they gonna take that seriously. Can't even be measured. Doesn't show up on an EMG cause far end nerve speed is just normal.
Btw, another difference between AIDS and Lyme, wrt to the early years of both diseases, is that AIDS killed even if detected early and there was no cure. Not even a hope. The focus was on safe sex.
Lyme doesn't kill in most cases, unless it goes undetected and depending on the strength of your immune system.
In many ways, however, Lyme has more devastating impact on the patient, friends and family, employer and society than AIDS and even cancer. And the reason is the neurological effects.
However, this devastating impact is not measurable and presentable in a form that people and society around us, incl government and the academics, can appreciate. It's unlikely to have much impact in public meetings. Only if you have felt it will you appreciate it.
But we can all rely to death and how devastating that is to loose a friend to AIDS. We don't need to experience that one.
In these days, everything has to come in a glitzy cup and be presentable by a number if you really wanna spread the word.
And AIDS had that:
..in number of deaths. It hit predominantly gays. Solid HIV test. Specific numbers of infections across the face of the earth incl charts about how it spread and increased.
Lyme doesn't even have a test.
And finally, is there a cure for Lyme or not? Seems that some people with chronic Lyme recover while others continue to struggle, trying one abx after the other and trying alternative methods too, too numerous to mention.
Some people believe that a cure is a multifaceted approach beyond most doctors capability cause they simply don't have the sort of time and attention a Lyme sufferer needs. IOW, the cure is very much up to the patient him/herself. That won't fly well. Patient simply won't accept that. But IMO they don't have a choice.
And then we want unlimited access to abx: "Mr. President let the LLMD prescribe abx for as long as they like." "Why?" "Well Prez seems like Dr has to try several abx for many years before he finds one that works." "Say what? What kind of quackery is that?"
This is too darn complicated for must to understand, incl gov. I mean is there a cure or not? Is there a treatment protocol or not? Do abx work or not? Give me specifics...no wishy washy stuff. Well, Mr. President it depends on who you are! For some it works. For some it don't! Say what?
And even more finally, we're also battling coinfections.
Andie, this is f*cking complicated crap. You gonna need hours to explain this stuff to the government.
Some people to get on our side should include some no-nonsense people like Anderson Cooper, maybe Katie Couric who might have some appreciation for our suffering and now she's on Nightly News, and some of the Fox folks (Hennessey).
Another thought I just thought of is a movie about a Lyme sufferer. In a movie there's time to build up the character, show the onset, show the steady decline in a persons capabilities and the increasing frustration of her unsuspecting family, friends and school nurse with her ever more weird symptoms.
Personally, I'd be willing to donate at least $100 to such a project if someone could get it going. I can't imagine it would exceed 1 Mill $.
Contact someone on HBO or NBC and convince them to make a movie about Lyme.
Remember "And the band played on"? Awesome movie. Came late though. Had it aired in the 80s, I can imagine it would have had impact.
If we want to break down walls we need to do the following:
1. Get a solid Lyme test. Is this completely out of our hands?
2. Make the public/government literally feel what we're going through. Movie is the way to go here!
IMO
Michael
-------------------- I'm not an MD. The above is IMO and in my experience as well as from health related books.
I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before. Posts: 702 | From NY | Registered: Jul 2004
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Andie333
Frequent Contributor (1K+ posts)
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posted
I appreciated your points, Michael, and just watched And the Band Played On for about the third time recently...hoping it would offer me some glimpse into a way forward for those of us with Lyme.
It is complicated. I remember exchanging pms with someone else who was seeing my LLMD. This person had gotten markedly better and was off all abx. I had a lot of questions, including their treatment protocol.
Turns out the whole treatment was different than mine -- different abx, different supplements at different times. I'm slowly and steadily improving, so this didn't alarm me, but it did fascinate me...and it reminded me of how complex this is and how differently it manifests in different people.
If you're serious about donations, there's currently a Lyme film in production...and the intitial clips look really powerful, accurate and excellent. They're trying to get funding to complete the film and get it aired.
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