Yaknow, I've been around Lyme, its coinfection and the hell is plays on patients for 15 years now this month... and just when it seems the Lyme community may be making some head way in the acceptanc of chronic Lyme disease and treatment a lot of the LLMDs are being attacked.. I just don't understand it.. I swore when I began my battle in 1990 that I wouldn't end up in wheelchair from this disease and it's groupies (co infection) and that has happened.. I've also sworn I would not end up a lyme statistic, will that happen too? Why do they (ducks) want us to die? I dont understand it and I dont know if I ever will.
Posted by Beverly (Member # 1271) on :
I don't understand it either......
Posted by StuckonLyme (Member # 8196) on :
Ithink most of the (ducks)dont want to deal with lyme, co-infections and all the complecations that come with it. Either that or they just dont understand it. If they had any idea what we are going thru i think they would understand more but they dont.
I just wish I could give all the ducks out there lyme for a week and then see what they would do for there patients with chronic lyme. I think there whole viewpoint would change. If it wouldnt then they have no compassion what so ever.
Posted by Mo (Member # 2863) on :
It comes from the top.
The IDSA, and their financial ties to insurance companies and other interests.. as well as the so-called 'careers' and published work of the top dogs in this force.. they now have great stake in this thing, as they have spent decades misdiagnosing and misleading patients (and physicians) regarding people with very serious, persistant and progressive infection.
They set the guidelines, insurance companies, acadamia, and peer pressure makes many Docs follow suit. Medical board persecution, as in these cases..also deters them from stepping 'outside the box' to help us.
The battle is with the IDSA and Yale, as well as others, perhaps some level of government (?).
I know these two cases apearing make things seem bleak.. but sooner or later this thing has to crack, and I just wonder if that will be the end result due to the information put forth, and if enough patients come forward in support.. certainlk we HAVE advanced awareness, bith in concerted effort, and just by way of the number pf patients ans what our friends and family learn from witnessing debilitating cases. ...there is more public knowledge.
Maybe this (these cases)will have the opposite effect, and advance Lyme advocacy and awareness, clear these Docs, and as an added bonus discredit the IDSA and Yale on Lyme.
Mo
[ 22. December 2005, 01:27 AM: Message edited by: Mo ]
Posted by 5dana8 (Member # 7935) on :
I am hoping other doctors when presented with patients with chronic lyme or lyme don't think to themselves- Look what happens to these doctors that try and treat us.
I think this could hurt our chance with future doctors who might want to explore chronic lyme and them say no thank you I don't want to be hounded.
There are so few left I hope and pray that this doesn't force more of them under ground. Posted by Boomerang (Member # 7979) on :
Interesting, Mo. Thanks.....I've been puzzled by all this since I first began reading about it. Still am, of course....
Dana, that worries me too about the docs. I've noticed a lot of docs say "I don't know anything about Lyme." At least the ones we've seen recently for other things.
I think they don't want to touch the topic...
Posted by Mo (Member # 2863) on :
Well, no.. some don't want to touch it.
I had one very compassionate and capable Doc say she knew that there were many patients under her care that were suffering from TBD's..but she didn't want to loose her licence in treating them..some Docs are with good intent and genuinely feel 'stuck'.
Our LLMD's are true bravehearts.
That's why it's up to us to back them.
Mo
Posted by groovy2 (Member # 6304) on :
Mo what is Idsa?
I have been baffled also why this disease is so politacal--
There must be greed invalved in some way--
AIDS patients take tons of abx with no problem from government-
--Jay--
Posted by lymeout (Member # 8045) on :
I read the Conflicts of Interest page on the LDA's website, which gave me a better understanding of this controversy. They detail the history of the establishing of the guidelines, the vaccine fiasco and the roles of the key players. We should encourage our political reps and our medical professionals to read this. Every time a LLMD is charged, I begin to question my own decisions about long-term treatment and worry that I might be doing more harm. But then I realized that the recent charges have been directed toward DIAGNOSIS rather than TREATMENT, right? If the treatment was truly unsafe or outside the realm of "first do no harm", they would surely be going after that, rather than diagnosis. Their diagnosis charges are certainly on shaky ground because of the "clinical diagnosis" wording in the CDC document; therefore.....it appears to me that their goal is simply to INTIMIDATE. And it is working! Doctors who are not currently treating lyme will continue to refuse, and those who are treating it will retreat further from insurance involvement. As insurance companies question the validity of various tests, they will not provide documentation to support it for fear that the board will use it against them. And guess who's left holding the bag? The financially able will continue to get treatment, the vast majority of sufferers will not! And the insurance companies skip along scot-free! This is a tragic and CRIMINAL situation.
Posted by treepatrol (Member # 4117) on :
Say we have a door and only a few go through it at a cost $????.?? Now open the door and LOTS and Lots go through the door at a cost of $????????.??
Now say you cant afford it as a whole because you spend money on other things that are in the open like natural disasters war which are very visable on tv and cant be ignored.
Would you open the door ?
Posted by map1131 (Member # 2022) on :
I Have Lyme, I too was mad about all the bulls$*#@ involved in this disease. I learned alot about the medical field. I had no idea that there were doctors that wouldn't, couldn't, and shouldn't treat people.
The biggest lesson I learned from all the political crap on lyme....I'm in charge of my health. There is no doctor that is going to cure me. I will cure me with some dr help.
It's up to me to do research and find possiblities to help me. As soon as I started thinking outside that medical standard treatment box, I started my major improvements.
Don't worry everyone this story is going to come to light. 2006 I hope!!!!!! Let's all pray that the public and medical docs get an education about the true story of vector borne illnesses soon.
![[Frown]](frown.gif)