LymeNet Flash: Letter in today's CCTimes..Lyme Patients Getting the Runaround

This is topic Letter in today's CCTimes..Lyme Patients Getting the Runaround in forum Medical Questions at LymeNet Flash.

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Posted by nan (Member # 63) on :

July 21, 2005

Lyme disease patients getting the runaround
I feel I can ask this question as I have had Lyme disease for more than 13 years: Why can't we all (public, patients, doctors and HMO's) work together to find a cure for this extremely debilitating disease?
Why are we reading statements from Drs. Sugar and Wormser saying Lyme disease is highly overstated, and we as sufferers have to fight it out in the press because we need for everyone to know the real truth?
Why do we have to fight for what we know? Why do we have to travel hundreds of miles to be treated because Dr. Donta and a few sacred others are overloaded with patients?
Why do we as sufferers continue to be told we're psychosomatic or any other range of theories and have to fight with all our strength to be properly diagnosed and treated?
Richard W. Sylver
East Dennis

Posted by GEDEN13 (Member # 4151) on :

........money........

, gary

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Posted by mtgebrkr (Member # 7631) on :

quote:
Originally posted by nan:

July 21, 2005
Lyme disease patients getting the runaround
I feel I can ask this question as I have had Lyme disease for more than 13 years: Why can't we all (public, patients, doctors and HMO's) work together to find a cure for this extremely debilitating disease?
Why are we reading statements from Drs. Sugar and Wormser saying Lyme disease is highly overstated, and we as sufferers have to fight it out in the press because we need for everyone to know the real truth?
Why do we have to fight for what we know? Why do we have to travel hundreds of miles to be treated because Dr. Donta and a few sacred others are overloaded with patients?
Why do we as sufferers continue to be told we're psychosomatic or any other range of theories and have to fight with all our strength to be properly diagnosed and treated?
Richard W. Sylver
East Dennis

I have just relapsed from being functional for 6 years to being beddridden. I had been away from this for a while since I have battling it for 16 years. I am convinced that Dr.s like Wormser who are involved with research are allin cahoots with the CDC and the State to understate Lyme disease, its effects on peoples life's to protect the economy here and surrounding states. If I had ever known when I was 24 and contracted this (maybe earlier) that I would spend my life battling an insiduous disease just because I pet my cat, or planted flowers, or talk a walk through a pasture, I would have moved to Alaska a long time ago. Property values would plummet in the more rural areas of the states affected more than others. Everyone would want to move to the boroughs of New York to work in the city. My dentist came here from Queens New York, and is closing his practice due to the amount of Lyme Patients he has seen come in to have mercury fillings removed etc. He is scared to death and moving back to the burbs on a 25X 50 lot that he can spray and let his dog out on without fear of deer ticks.(Although birds can drop them in his yard too!) Its a lot easier to manage less land. I have 3 acres and want to fence in my yard to small restrictive area that i can treat with pesticide and feel a little safer.
If I get well, I am definitely moving. Right now i have to be close enough to my LLMD. My other fear since I relapsed so bad, is relapsing again and not being close enough to get treatment. Lyme is a devastating, understated disease and more Government funds should be allocated towards prevention, a cure, and solution to eradicating the white footed mouse where this disease originated from.
Donna

Posted by Lymetoo (Member # 743) on :

Good question! Where's "CC"?

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Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu

Posted by quic (Member # 5262) on :

Cape Cod, MA

Posted by Lymetoo (Member # 743) on :

Oh OK! I thought maybe that was it. I'm a Texas girl and CC there means Corpus Christi. Homesick again.

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Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu

Posted by Lymiedad on :

These posts are in violation of the instructions from the moderator. Doctors names not allowed ever. http://flash.lymenet.org/ubb/Forum3/HTML/013193.html

Posted by ConnieMc (Member # 191) on :

Donna, you are so right!! Problem with their plan is Lyme is now in every state, and resources like the internet have allowed us to all network and figure this all out. Their plan will eventually fall through, as the public will demand it. So many more know about Lyme than did when I first became ill back in 1998. People are no longer believing their BS, and the time will come when this will all be exposed.

The press is all part of their plan as well. They seem to have the control right now, but this will not continue. There are a few listening. Everyone needs to write editorials to all area newspapers. I have had this lead to articles on 2 occasions, the the media people involved have been shocked at what they are hearing. And many people have been diagnosed as a result of these articles.

Everyone, tell your story as much as you can. You never know when you will end up saving someone lifelong misery, because they will know what to do the next time they see a tick. Education is the key.

Posted by pq (Member # 6886) on :

we must work toward their prosecution to the fullest extent of the law, and we can do it.

an excellent start on this has been made by Kathleen Dickson,pharmaceutical chemist.

see Kathleen Dickson's FDA testimony and
RICO complaint on the websites for the FDA the U.S.D.O.J., and on sci.med.diseases.lyme.

many corporate officers have recently been imprisioned and fined for deception, theft, and fraud.

these low lifes involved in the lyme scandels have an excellent chance of imprisonment, which is why they watch this and other boards and have recently joined this board to disrupt it, and whose recent appearance on this board was co-incident in time with the introduction of two LYME BILLS to be considered for passage into law.