Lyme disease care under fire

[Amy]

If 4 weeks of Doxy cured Lyme, I wouldn't still be sick months later. You can't treat everyone with Lyme the same. Just like some people don't respond to some cancer treatments- you have to try another one! AND sometimes more than one!!!!

[Gene Rosen]

Thanks for your excellent coverage. Sadly, the front page story presented the number of 2007 Lyme disease cases as fact. As long as Lyme disease is under reported, the details of any story about Lyme Disease remain somewhat less significant and less reflective of the actual epidemic that is the state of Lyme disease. Large numbers speak loudly and uncomfortably and small numbers are just a whisper. I truly feel that the under reporting of Lyme disease is the keystone of how physicians and health officials at every level keep this story at a reasonable but dangerous whisper. My thoughts and prayers to all who have suffered long and miserably from Lyme disease and, sadly, those who will be its target in the future.
To you, Bob Miller, thank you for your continuing coverage in shedding light on this matter.

[Camille]

For 2 years I have been struggling with Lyme Disease & costs are over $10K. My (now former)Family DR said my many symptoms were mid-life issues, but, they all go away when I'm taking antibiotics. Antibiotics do NOT fix mid-life problems. Lyme is debilitating. I am a fine artist who is unable to work when I go off the medicine. My current DR is searching for the right dosage & length of treatment to cure me completely, but we're not there yet. Infectious Disease Society
Guidelines will only result in "Permanent Patients".

[Sonsie]

Consider that Borrelia has a two-year life cycle with four stages (egg, larva, nymph and adult). The life cycle alone should make it obvious to IDSA (and all of us) why short treatment with antibiotics can't succeed. Because it is the nature of spirochetes to burrow, the IDSA protocol ensures that the spirochete has much opportunity to go deep into its host, where it can and does perpetrate very serious harm over time.

Most ticks transmit multiple infections, by the way. When you add co-infections to this mix, treatment protocols must be worked out even more carefully.

[Phyllis Mervine - CALDA]

Camille, you are right on the money when you say, "Infectious Disease Society Guidelines will only result in "Permanent Patients."

PR from IDSA often accuses the Lyme-treating doctors of ILADS of profiting off patients when they order long-term treatment. In fact, ILADS doctors lose money on patients who require first visits of 2 hours or more, need phonecalls between appointments, help with insurance denials. Nevertheless, ILADS patients get well. I see my doctor only a couple of times a year. It's the IDSA patients who see doctor after doctor after doctor in an attempt to recover their health.

Who is really getting rich? The insurance companies use IDSA guidelines to deny reimbursement.

Phyllis Mervine
www.lymedisease.org

[Ann Ryan-Kaplan]

Our family was infected with Lyme in the late 1980's and we were not diagnosed. Today, my daughter is struggling with pain and fatigue. I had to stop work 11 years ago due to fatigue and cognitive problems. Yes, I think there is a need for long-term treatment. It took the medical profession too long to recognize the dangers of Lyme disease.

[Tar-Heel]

No such thing as Chronic Lyme. It is made up by special intrest groups and doctors to take advantage of insurance companies and blame other conditions on Lyme.

[Phyllis Mervine - CALDA]

Tar-Heel, You are apparently unaware that insurance companies are routinely denying reimbursement for treatments recommended by doctors, leaving patients responsible for huge medical bills. Your contention is not based on facts.

[Sonsie]

I need to correct my earlier post (even though nobody jumped on my error). I had a copy and paste problem in making a point about the vector (and I'll omit that point for now.) The text "four stages (egg, larva, nymph and adult)" should not be in the first sentence. My point is as follows:

"Consider that Borrelia has a two-year life cycle. The life cycle alone should make it obvious to IDSA (and all of us) why short treatment with antibiotics can't succeed."

I have to wonder why some here believe that short-term treatment can succeed -- I'm sure they would insist on matching treatment length to the life cycles of other bacteria. Are folks willing to apply different standards to different bacteria or what?