why is chronic lyme questionable?

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gracietiger
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Date Joined Dec 2008
Total Posts : 129
   Posted 12/8/2008 5:50 PM (GMT -7)   
As many of you know from my previous posts, I am new to looking into lyme's disease.
As I'm reading about it, however, I can't help but notice that a great deal of the medical profession does not seem to "believe" in chronic lyme's disease.
I cannot understand this. If there is a blood test for lyme's, and people turn up positive, what is there not to believe? And if doctors are so quick to treat people immediately after a tick bite, or a rash appears, then why wouldn't chronic lymes disease be possible? If a person's body just cleared it up, why treat it at all then?

I am just curious as to the arguments against chronic lymes. Do doctors think that it just doesn't exist, or that those who get sick chronically from lymes have cleared the lymes out, but have weakened immune systems or genetic defects that make it reap long-term damage?

peacesoul
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Date Joined Jan 2007
Total Posts : 2446
   Posted 12/8/2008 5:58 PM (GMT -7)   
Dr's are acknowledging that lyme exists, they know it does, but some just do not believe the lyme and co infections can live in a host "chronically" for years and years.

They believe once the body fights off the initial infection, that it's gone and never returns.


The world breaks every one and afterward many are strong in the broken places


JELAINEP
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Date Joined Sep 2007
Total Posts : 2017
   Posted 12/8/2008 6:27 PM (GMT -7)   
gracietiger - If you haven't already, try to see (or order on line) the DVD Documentary "Under Our Skin", which really puts all of the problems regarding testing, treatment, insurance, politics, suspect IDSA LD panelist, etc. into perspective. Another excellent resource is the book, Cure Unknown, by Pamela Weintraub. I haven't been able to read or retain ANYTHING for years due to LD symptoms (can't bear the reading light, can't read and retain anything, etc.) but I did manage to get through this book. It completely lays out the Lyme disease landscape of problems.

The majority of IDSA LD panelist have been found to have possible conflicts of interest with regard to LD. 9 out of 14 are invested in LD testing, LD treatment, writing LD guidelines for insurance companies, and LD vaccines. I believe they wrote and continue to write horrendous guidelines for LD while holding out for the big payoff. I hope their big payoff is a gigantic class action lawsuit against the IDSA and each panelist individually. Let's see how they like it when their lives are ripped out from underneath them and they can no longer pay their bills or practice their profession or feed their families or send their kids to college and then for the cherry on top - they lose their insurance coverage.

The problem with the rest of the doctors out there is that they rely on these guidelines for treatment.... they're like gospel and many doctors do not question the guidelines.... even when they know they're wrong.

Another side to add in is that LD may have been treatable with 2-4 weeks of oral doxy back in the 70's, but the ticks are now carrying more diseases or "co-infections".... and the writers of the guidelines just don't want to admit that it's time for the guidelines to be updated.

When HIV/AIDS first appeared in the early 80's, those patients also went through this... they had to convince doctors that something was going terribly wrong, it struck the gay community first and the hardest... so they had that prejudice to overcome.... medicines were available, but not administered.... but when people started dying... and celebrities got involved... they got their medicine even before FDA approval. Now, one of President Bush's greatest accomplishments (in my humble opinion) is the HIV/AIDS initiative in Africa. The US has supplied Africa with affordable (I think this honor goes to former President Clinton) HIV/AIDS medications in record numbers. And all of this has come out of a gay community dying from a disease that no one had a name for and activist that began PROTESTING and DEMANDING attention for testing and treatments.

People with fibrmyalgia, CFS, Epstein Barr, etc. were ridculed for years. Now those same "afflications" are on record as REAL illnesses and accepted in the medical community.... they even have their own diagnostic codes and standards for testing and treatment.

We'll get there... obviously we'll be getting there the hard way... but we'll get there.


Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3 Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg, Skelexa, Restoril
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 12/8/2008 7:32 PM (GMT -7)   
thank you for the very thorough response.
it has saddened me so much to go through the medical system being told that i have major psychological issues (i don't!) and just need to exercise more (i was a division I NCAA athlete just a year before getting sick, now i am too sick to exercise!).
i have to admit - when i was in my early twenties and began to hear about such chronic illnesses like fibromyalgia and cfs, i immediately judged the sufferers. i thought maybe they were lazy, or hypochondriacs. i was terribly ignorant, and unable to fathom such systemic problems.
then it happened to me. and i'm being looked at by my doctors like i used to look at people who told me they had similar problems. i know exactly what they are thinking about me. and i just want to make them believe me and stress how sane and reasonable of a person i am, but i know they just think i'm more crazy.

when i visited the POTS specialist last week, which was my original diagnosis, she immediately thought i had an infectious disease. however, when i mentioned lyme's, it was like "umm probably not, moving on."
it's just crazy to me that it's so controversial. if doctors believe that a person's body should rid the bacteria in a couple of weeks, then why treat it at all? i mean, if i had a staph infection in my leg (totally have), and didn't treat it with antibiotics, it wouldn't just disappear. it would probably cause me to lose my leg. then result in death. so i don't really understand why lyme's would be any different. only it is difficult to see and test, so do doctors just want to pretend it's not there? if i had gotten malaria in west africa, no one would have tried to convince me that since it had been two weeks, it just went away.

thanks for suggesting the documentary. i have heard of it and it sounds terrific. i am excited to educate myself more on lyme's. at this point, i feel like i have exhausted every single option. i cannot imagine there is anything else wrong with me but lyme's. except for maybe i am crazy:)

saxmar
Veteran Member


Date Joined Feb 2007
Total Posts : 670
   Posted 12/9/2008 6:28 AM (GMT -7)   
Most doctors will avoid Lyme diagnosis because it is red flagged by insurance.

When I was in the hospital the nurses told me that they would put "Alternative supplements" on my chart for my meds I took for Lyme. That way the insurance company doesn't get involved.

I pay the doctors I see for Lyme directly. I do not get insurance involved.

saxmar

phsinvent
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Date Joined Aug 2006
Total Posts : 1155
   Posted 12/9/2008 11:19 AM (GMT -7)   

Saxmar is correct. Insurance companies are part of the problem. Lyme treatment for 2-3 years is very expensive versus a simple 21 days of cheap doxycycline. Followed by some xanax, cymbalta or prozac maintenance when they tell you it is all in your head.

We don't know the real reason why it is completely ignored like it is. But if you look at a close cousin of lyme, Syphillis is treated for 1-3 years, Chlamydia pneumonia is treated for 2-3 years with multiple antiobitic combinations via the vanderbilt protocol. Look at Tuberculosis, treated with multiple drugs for 1-2 years, Aids treated indefinitely, Acne treated for several years with tetracycline type antibiotics. The list goes on and on. The facts on this site and lyme.net etc speak for themselves. Ask the actual victims, most of them have recovered from their former hell. But it took 1-3 years of multiple drug combinations in order to return to normal.


gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 12/9/2008 11:38 AM (GMT -7)   
it's just soooo crazy to me that that is the situation. i have no doubt chronic lyme is possible, but just can't fathom why it would still be disputed. how could medical professionals sincerely not believe in it? i mean, doesn't the evidence speak for itself? and do these same doctors who don't believe in it also tell patients who were recently bitten, and show up to their offices with a bullseye rash, that they don't need antibiotics at all because lyme won't become chronic? i simply don't understand why it is so commonplace to immediately treat lyme's if it suspected, but then someone who didn't receive treatment initially is simply "messed up" in his head?
insurance companies deciding whether or not a condition exists seems absurd.

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 12/9/2008 11:48 AM (GMT -7)   
gracietiger said...
it's just soooo crazy to me that that is the situation. i have no doubt chronic lyme is possible, but just can't fathom why it would still be disputed. $$$ how could medical professionals sincerely not believe in it?  if they do, they just don't acknowledge it i mean, doesn't the evidence speak for itself?  yes  and do these same doctors who don't believe in it also tell patients who were recently bitten, and show up to their offices with a bullseye rash, that they don't need antibiotics at all because lyme won't become chronic? probably, or they have them come back in 3 months to be "tested" instead of just giving them the friggin' antibiotics  i simply don't understand why it is so commonplace to immediately treat lyme's if it suspected, but then someone who didn't receive treatment initially is simply "messed up" in his head?  $$$
insurance companies deciding whether or not a condition exists seems absurd.  yes, you're right, it is absurd.
You are very wise grasshopper.  It's like were screaming at the top of our lungs that the sky is blue and they (the drs. who have a vested interest in the guidelines) look at us like we're crazy and say "No, the sky is red.... send them to a shrink."

Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3 Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg, Skelexa, Restoril
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


phsinvent
Veteran Member


Date Joined Aug 2006
Total Posts : 1155
   Posted 12/9/2008 12:00 PM (GMT -7)   

I think only conspiracy theories are the answer to your question at this time. I'm not the conspiracy type of guy but what the heck. If you want a wild conspiracy, i'll give ya one.

If you look at where lyme mysteriously started back in the mid 1970's(lyme connecticut) it just seems odd. There is a biowarfare lab nearby known as plum island. This lab was extremely active during the cold war in an effort to develop bio-weapons to fight the russians, should that day come. So how do you think these guys would act if something accidently got out. The orders would come from the top(cdc etc) and work their way down to the family dr level. If i was them, i would act as if lyme does not exist. Act as if it is hard to contract and easy to treat. Keep the numbers of reported cases low with many innacurate tests that usually come out negative. That way the regular population cannot cause an uproar and demand compensation. This would open up a can or worms if we knew how many people really had it and how widespread it really was. What do you think other countries would think if they found out this creature started here in the united states and is spreading rapidly around the world. Now you would be talking about some serious compensation to entire countries instead of just some american citizens. Oh well, there's a wild conspiracy for ya.

If doctors can tell most of the patients it is all in your head and keep the numbers low. Attention and investigation into this disease will not be drawn. It is easier to throw these sufferers into fake categories like chronic fatigue, als, parkinsons, multiple sclerosis, rhematoid arthritis, fibromyalgia etc.  

I myself was thrown into the multiple sclerosis category in the beginning. But wouldn't you know, long term antiboitics and antimalarials cured my multiple sclerosis. I love when i go back to visit the neurologist and tell him how awesome i'm doing off generic overseas antibiotics.


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 12/9/2008 12:09 PM (GMT -7)   
phsinvent said...

I think only conspiracy theories are the answer to your question at this time. I'm not the conspiracy type of guy but what the heck. If you want a wild conspiracy, i'll give ya one.

If you look at where lyme mysteriously started back in the mid 1970's(lyme connecticut) it just seems odd. There is a biowarfare lab nearby known as plum island. This lab was extremely active during the cold war in an effort to develop bio-weapons to fight the russians, should that day come. So how do you think these guys would act if something accidently got out. The orders would come from the top(cdc etc) and work their way down to the family dr level. If i was them, i would act as if lyme does not exist. Act as if it is hard to contract and easy to treat. Keep the numbers of reported cases low with many innacurate tests that usually come out negative. That way the regular population cannot cause an uproar and demand compensation. This would open up a can or worms if we knew how many people really had it and how widespread it really was. What do you think other countries would think if they found out this creature started here in the united states and is spreading rapidly around the world. Now you would be talking about some serious compensation to entire countries instead of just some american citizens. Oh well, there's a wild conspiracy for ya.

If doctors can tell most of the patients it is all in your head and keep the numbers low. Attention and investigation into this disease will not be drawn. It is easier to throw these sufferers into fake categories like chronic fatigue, als, parkinsons, multiple sclerosis, rhematoid arthritis, fibromyalgia etc.  

I myself was thrown into the multiple sclerosis category in the beginning. But wouldn't you know, long term antiboitics and antimalarials cured my multiple sclerosis. I love when i go back to visit the neurologist and tell him how awesome i'm doing off generic overseas antibiotics.

I once told my shrink (yes I have one - even though some of us have LD it doesn't mean we don't need a shrink - haha) that if even 1/10th of the conspiracy theories about LD are true... "I'm screwed"... which means "we're screwed"... AHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!! rolleyes rolleyes smhair smhair shocked smhair smhair rolleyes rolleyes

Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3 Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg, Skelexa, Restoril
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 12/9/2008 12:45 PM (GMT -7)   
oh man, all my hopes and dreams that the medical system is actually out for our best interest and well-being are completely dashed.
well, they were dashed long ago when i first got sick and was told it was anxiety, but i just can't believe that professionals would rather tell people that they are crazy when they are actually sick and can feel better.

alfers
Veteran Member


Date Joined May 2005
Total Posts : 2671
   Posted 12/9/2008 3:16 PM (GMT -7)   
Hi gracie,
I personally don't believe the conspiracy theories, so I'm also totally perplexed as to why this has become controversial. I don't know if you saw my post a couple weeks ago, but I recently saw a rheumatologist whom I HIGHLY respect and she told me flat-out that she doesn't believe in chronic lyme...This just confused me even more. I have to say, unfortunately I've kind of thrown up my hands at the whole thing...possibly to my own detriment, since I don't know how to proceed with treatment. Anyway, sorry you feel the same way - it's not fun to be a victim of this disease and the medical community!
Lyme and co-infections since approximately 2002. Diagnosed in 2005. Treated for two years solid. Diagnosed with Lymphomatoid Papulosis in October 2007. Currently back on abx.

Moderator for Lyme Disease forum


nervoustick
Regular Member


Date Joined Jun 2007
Total Posts : 158
   Posted 12/9/2008 5:24 PM (GMT -7)   
I am totally in Physinvent's camp.

As a researcher and cultural critic, this story of conspiracy is not that far-fetched and there are facts that give weight to the story. We'll never know if it is true, for sure, but I can give you dozens of proven examples where our government has covered up the truth for the sake of national security, financial interests, etc. And believe me when I tell you, if it were ever proven Lyme was spawned mistakenly or otherwise on a widespread basis by the military, there would be hell to pay, especially now after all those who would have been implicated in the cover-up. And the hell to pay would indeed be disastrous on some levels (it could bring significant ruination to all kinds of aspects of industry, let alone public trust, etc.)

Again I am not advocating it is true. but given what I know about it and the incredulity of the responses by the medical profession to this day, it certainly wouldn't surprise me and would make the most sense.

nervoustick
Regular Member


Date Joined Jun 2007
Total Posts : 158
   Posted 12/9/2008 5:42 PM (GMT -7)   
As a follow-up, history proves to us that the way to hide a demon is make a demon of the other. It is classic Machiavellian distraction technique.

Lyme disease has indeed become demonized, even more so than the equally as poor and miserable CFS/Fibro disease and their sufferers. With those diseases, you don't have (as much of) a demon cause you don't need (as much of) one. The demon to be hidden here is the doctor who doesn't know and can't figure it out. I guess some docs might unciosuly demonize their patients who suffer form this as they deal with their own feeling s of inadequacy. But mostly they are not culpable as with that disease you can't point a finger at something (they are still considered idiopathic diseases).
I keep saying mostly cause I KNOW there are plenty of docs out there who have made their CFS/Fibro paitnets feel small.

With Lyme though, you NEED a demon because you have at least in one stage of the disease OBJECTIVE evidence, therefore you have to demonize it in order to make it "wrong" and contend with this objective evidence. Perhaps from the get-go, if you subscribe to the conspiracy, you had a classic need to immediately turn the tables on the sufferer and the disease itself.

For example, the treatments for all the examples physinvent gave us were established clinically--based on how long it took subjects to recover. The only way you know you are cured of syphillis is when symptoms cease. I am pretty sure that just like all other bacteria once treatment starts you cannot sufficiently get objective serum evidence of its existence. You guess its still there because the symptoms persist. In some cases there can be biposy-staining for the bacteria too, but this is unreliable because in chronic stage syphilis the majority of the bacteria has crossed the BBB into the brain. BUt they will check other tissues and look for confirmation in some cases. Why don't doctors perform this on Lyme patients?

Well because you won't die from it--and because they might not want to admit to as large of a problem as it is. In my honest opinion. It is easier to demonize it and much more cost efficient.

gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 12/9/2008 6:44 PM (GMT -7)   
it all makes sense. i suppose it's true that as long as people don't die from lymes disease, it's much less consequential to all the big 'system' involved to just let people suffer than acknowledge such a huge problem.

studeski
Regular Member


Date Joined Dec 2007
Total Posts : 62
   Posted 12/9/2008 7:25 PM (GMT -7)   
So how many symptoms are related to the chicken pox or the common cold.Why would a doctor who can make six figures a year on the easy stuff bother with Lyme's disease. He won't.

Claude
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