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A moment of your time...
This is about a petition -- one that may have no chance of achieving its objective, but someone started it up. I signed it, and I'm going to write to them to see if I can break the letter up into more manageable pieces.
This is the web site for the Lyme Disease Association:
http://www.lymediseaseassociation.org/
This is their petition:
http://www.lymediseaseassociation.org/referral/Petitions/Petition.php?id=1
What is this about? It is about the fact that one of the two major associations concerned with vector-borne diseases has laid out guidelines for Lyme treatment that they are pushing the CDC to accept on its web site. Many doctors with little or no training in diagnosing various conditions (such as neuroborreliosis, or Lyme disease) turn to the CDC to give them basic facts about diseases they know little about.
The group pushing their guidelines on the CDC (IDSA) is larger. The group saying that these guidelines do nothing to address cases of late-stage/chronic Lyme (ILADS) has been yelling about studies that conflict with these suggested guidelines. It's a vicious battle -- IDSA has a lot of ego riding on it, and ILADS has the fear that insurance money will be cut off for desperately ill patients who were overlooked the first month of their Lyme disease.
IDSA believes that Lyme disease is easily cured when caught early, and no more than two courses of antibiotics (4 weeks total) should be given. After that time, specialists (i.e. neurologists, orthopedic surgeons, internists, endocrinologists, etc.) should treat anything that manifests/presents as symptoms grouped under “chronic Lyme” separately. So far IDSA efforts and studies on long-term treatment lasted three months -- just about the time the deep part of neuroborreliosis die-off is reached.
ILADS believes that like another Great Imitator, Syphilis, Lyme disease has multiple forms and presents in a myriad of ways. It is an active disease until stopped (rare) or stomped into remission. I believe it takes something like 18 months to be sure you have killed Syphilis -- two years for TB treatments. So it won't surprise you that the average battle to put a long-term Lyme patient into remission is 18 months. Some people even need IV antibiotics for a few months, to keep up a constant dose of medication attacking the Lyme.
Is anyone in-between? Oddly, the Mayo Clinic is now in-between. They used to be in IDSA's camp. Now, they admit on their website that "difficult cases of Lyme may require one month of IV antibiotics." A big step for them to take, bucking IDSA.
If the CDC doesn't take a good look at long-term treatment patterns soon, we will have a great many people filing for permanent disability. It's that simple.
So -- if you don't feel you can sign because you don't know enough about the battle, read Amy Tan's account of her Lyme journey:
http://www.amytan.net/LymeDisease.aspx
If you still can't go for it, remember this -- if Congress doesn't stop using Social Security's interest (SS) as a "help yourself cornucopia" for pork barrel projects, the disability filings in the next ten years may cripple SS.
Someone you know probably has Lyme -- and perhaps other tick-borne diseases, because a tick carrying one disease can carry several diseases. A second-year stage tick is as big as the period at the end of a sentence. Many ILADS doctors believe that Lyme can lay dormant for years before stress tips the body into an active case of Lyme.
I've met people who have been treated and are in total remission. They are careful not to work insane hours, and most of them take care of themselves. They must. ILADS doctors/nurse practitioners treated them. They have most of their lives back.
I've met people who were turned away sick and told they were exaggerating their pain and disorientation, people who had no idea where to go next. I know one individual whom I fear is literally dying a slow but steady death from Lyme "complications." IDSA doctors saw these people, if they are spotted at all.
Don't let your friends and relatives be in that second category. Read Amy Tan's story -- educate yourself about Lyme. Don't be a victim of this horrible disease.
Thank you for taking time to read this plea. Permission is given to post this letter in its entirety with proper attribution.
This is the web site for the Lyme Disease Association:
http://www.lymediseaseassociation.org/
This is their petition:
http://www.lymediseaseassociation.org/referral/Petitions/Petition.php?id=1
What is this about? It is about the fact that one of the two major associations concerned with vector-borne diseases has laid out guidelines for Lyme treatment that they are pushing the CDC to accept on its web site. Many doctors with little or no training in diagnosing various conditions (such as neuroborreliosis, or Lyme disease) turn to the CDC to give them basic facts about diseases they know little about.
The group pushing their guidelines on the CDC (IDSA) is larger. The group saying that these guidelines do nothing to address cases of late-stage/chronic Lyme (ILADS) has been yelling about studies that conflict with these suggested guidelines. It's a vicious battle -- IDSA has a lot of ego riding on it, and ILADS has the fear that insurance money will be cut off for desperately ill patients who were overlooked the first month of their Lyme disease.
IDSA believes that Lyme disease is easily cured when caught early, and no more than two courses of antibiotics (4 weeks total) should be given. After that time, specialists (i.e. neurologists, orthopedic surgeons, internists, endocrinologists, etc.) should treat anything that manifests/presents as symptoms grouped under “chronic Lyme” separately. So far IDSA efforts and studies on long-term treatment lasted three months -- just about the time the deep part of neuroborreliosis die-off is reached.
ILADS believes that like another Great Imitator, Syphilis, Lyme disease has multiple forms and presents in a myriad of ways. It is an active disease until stopped (rare) or stomped into remission. I believe it takes something like 18 months to be sure you have killed Syphilis -- two years for TB treatments. So it won't surprise you that the average battle to put a long-term Lyme patient into remission is 18 months. Some people even need IV antibiotics for a few months, to keep up a constant dose of medication attacking the Lyme.
Is anyone in-between? Oddly, the Mayo Clinic is now in-between. They used to be in IDSA's camp. Now, they admit on their website that "difficult cases of Lyme may require one month of IV antibiotics." A big step for them to take, bucking IDSA.
If the CDC doesn't take a good look at long-term treatment patterns soon, we will have a great many people filing for permanent disability. It's that simple.
So -- if you don't feel you can sign because you don't know enough about the battle, read Amy Tan's account of her Lyme journey:
http://www.amytan.net/LymeDisease.aspx
If you still can't go for it, remember this -- if Congress doesn't stop using Social Security's interest (SS) as a "help yourself cornucopia" for pork barrel projects, the disability filings in the next ten years may cripple SS.
Someone you know probably has Lyme -- and perhaps other tick-borne diseases, because a tick carrying one disease can carry several diseases. A second-year stage tick is as big as the period at the end of a sentence. Many ILADS doctors believe that Lyme can lay dormant for years before stress tips the body into an active case of Lyme.
I've met people who have been treated and are in total remission. They are careful not to work insane hours, and most of them take care of themselves. They must. ILADS doctors/nurse practitioners treated them. They have most of their lives back.
I've met people who were turned away sick and told they were exaggerating their pain and disorientation, people who had no idea where to go next. I know one individual whom I fear is literally dying a slow but steady death from Lyme "complications." IDSA doctors saw these people, if they are spotted at all.
Don't let your friends and relatives be in that second category. Read Amy Tan's story -- educate yourself about Lyme. Don't be a victim of this horrible disease.
Thank you for taking time to read this plea. Permission is given to post this letter in its entirety with proper attribution.
no subject
no subject
no subject
I've signed it as well of course. I only wish I could keep my head together long enough these days to write something that comes from the vast amount of experience I've had. 12+ years of chronic lyme decimated what should have been the best years of my life. I finally did get proper treatment, which my family paid 20k out of pocket for after spending months in the appeals process with the insurance company, jumping through all their ridiculous hoops until I finally got to the point where I couldn't put off treatment any longer. I'm still recovering from lingering neuro-psychiatric issues which basically keep me on the sidelines for just about everything... especially the things I feel strongly about.
The sufferers of chronic lyme have it bad enough but then we're continually getting kicked while we're down and despite our numbers we have no voice. A bunch of sick, tired, cognitively impaired people that work their asses off day in and day out just to have the energy to get out of bed, hope for a good day once in a while, etc. aren't exactly in a good position or at all cut-out to stand up for themselves. Every post like yours adds a little glimmer of hope.
I'm glad you see the effect this issue will have on all tax-payers, not just those suffering from the disease. I had posted a short bit about it in very basic terms a while back in this lj post (http://dream4distance.livejournal.com/96404.html).
I don't feel the language of the petition itself does a very good job at expressing concern over issues beyond the problems with initial diagnosis guidelines. It's too late to change anything now though and the important thing is to stick together if we're going to have any hope that we may make an inch of progress.
Oh, and for the record, if it weren't for my family, I'd be on disability myself... or even more likely, wasting away in a mental home. As you eluded to, not everyone is so fortunate.
Not everyone is so fortunate....
I decided that this had to be included every time I could remember to do so. If you can't appeal to people on compassion issues, you may be able to reach them through their pocketbooks. Especially when writing people like the governor, etc. I also hit up the one state Rep in Texas who has had the disease and its complications, and the head of the Board of medical examiners (a pox upon him).
I keep a low profile on LJ because I don't want a future employer googling on my past problems. They are a private list -- friends and writers I know who might be curious about the progression of a disease. If you want to list an email on your profile, I'll try to remember to continue this later. Thanks for posting.