Letter Regarding Appointment of Committee to Review IDSA Lyme Treatment Guidelines
Following is the email I sent to jpadberg@idsociety.org with a cc: to attorney.general@po.state.ct.us. Feel free to use any info from my letter (which is really too long) – shorter is better in general.
***
February 12, 2009
Jennifer Padberg, MPH
Director of Clinical Affairs
1300 Wilson Blvd
Suite 300
Arlington, VA 22209
Dear Ms. Padberg:
I have been suffering from neurological Lyme disease for two years, and have tried to follow the raging debate between certain doctors in the medical community over the appropriate treatment for my disease. After one month of IV antibiotics my insurance company cut me off forcing me to pay for the treatment out of pocket. I had to stop treatment before a cure was obtained because the cost of the treatment bankrupted me.
My story is not unique, in fact there are many families who are all infected and aren’t able to receive treatment because of cost. It is a very dark chapter in the book of medical care in America.
I applaud the courage demonstrated by Connecticut’s Attorney General in standing as a champion to those of us who are bedridden and unable physically or emotionally to fight for ourselves, and the sincere effort being made to have a fair review of the IDSA guidelines regarding treatment of Lyme disease. I am writing today to respond to a news report that claims the new review panel will be composed of medical professionals who don’t have any experience with Lyme.
Enormous strides are being made to understand the initial infection, the mechanics of how the disease spreads and why symptoms remain long after the accepted 3 weeks of antibiotics, and why many infected individuals test negative under the current testing protocol.
I sincerely hope your effort to keep the review panel untainted by choosing members who have no experience is vicious gossip. It is inconceivable that you would look to those with no experience to make decisions about such a complicated disease.
Instead, I hope that a new panel will be selected from scientists with cutting edge experience in Lyme research who are outside of the politics of the disease such as:
Columbia Research Team (Lyme and Tick-borne Diseases Research Center):
*
Dr. Brian Fallon (psychiatry)
*
Dr. Ronald Van Heertum (nuclear medicine)
*
Dr. Robert De La Paz (neuroradiology)
*
Dr. Harold Sakiem (psychiatry)
*
Dr. Jay Dobkin (infectious disease)
*
Dr. Carolyn Britton (neurology)
*
Dr. Ted Dwyer (rheumotology)
*
Dr. Kathy Miller Corbera (research “Persistent Lyme Encephalopothy”)
*
Dr. John Keilp (neuroscience)
*
Dr. Rafal Tokarz (microbiologist)
*
Dr. Andrew Dwork (neuropathologist)
Stony Brook University Research Team includes top scientists from across the country and recently made a noteworthy discovery regarding the virulent strain:
*
Dr. Benjamin Luft (Professor and Researcher at SUNY Medical Center)
*
Dr. William D. McCaig SUNY
*
Dr. John F. Bruno SUNY
*
Dr. Yun Xu, SUNY
*
Dr. Steve Schutzer (Immunologist – Univ.of Medicine and Dentistry of New Jersey)
*
Dr. Claire Frazer (Genomics – Director of the Institute for Genomic Research in Maryland)
*
Dr. Sherwood Casjens (Genomics – University of Utah)
*
Dr. Wei-Gang Qui (Hunter College of the City University of New York)
*
Dr. Ian Livey (Baxter Vaccine AG, Orth/Donau, Austria)
*
Dr. Martin M. Schriefer (Centers of Disease Control and Prevention, Fort Collins, Colorado)
*
Dr. Dick Smith (Proteomics – Pacific Northwest National Laboratory)
Or other prestigious researchers such as Dr. Alan MacDonald from St. Catherine’s of Siena Medical Center and Dr. Mario Philipp at Tulane Medical Center.
Scientists who are focused on getting to a cure and understanding how the infection manifests itself are the type of medical experts desperately needed to develop meaningful treatment protocols with the diseased populace in the forefront.
Selecting medical professionals from IDSA who don’t deal with Lyme, will put pressure on them to consult with the very people who wrote the first and second guidelines, and have shown to be self-serving medical practitioners who want a close relationship with pharmaceutical companies, insurance companies and peers, and who routinely categorize people like me (who lived a full and active life until being stricken with this horrific disease) “crazy”, “making up symptoms”, “hypochondriac”…OR worse yet, misdiagnosing Lyme, which has a known cause, for Fibromyalgia or Chronic Fatigue which have no known cure.
Sincerely,
Jenna Smith
www.LymeDiseaseResource.com
Similar Posts:
- Who Can We Trust?
- ABC Reports on Misdiagnosis Regarding Lyme Disease
- IDSA Lyme Treatment Guidelines: Politics As Usual
- IDSA Creates Black Thursday For Those Suffering With Chronic Lyme Disease
- Myth Of The Bulls Eye Rash
- ILADS 2011 Conference Summary
- Fight IDSA Stranglehold on Meaningful Treatment for Chronic Lyme Disease
- Help for Chronic Lyme Disease Victims in Connecticut – Will It Stimulate Other States?
- Healthcare in the Future – Chronic Lyme Disease May be Eradicated – Part One
- Could There be a New Vaccine for Lyme Disease?
March 25th, 2009 at 5:30 pm
Jenna I admired your dedication and well written letter. So eloquent and honestly stated. I have been writing letters since this all started in Sept. 2008 after a trip to Maryland’s Chesapeake Bay Area. I am determined to do something about the insanity of this disease. I told someone going to a lyme doctor is like go to the doctor for an abortion in the 50′s. It has got to stop. Tessa McCall
March 26th, 2009 at 10:17 am
Hi Tessa – Thank you for your comments – I couldn’t agree more with your assessment! Unfortunately there is no way to accurately measure the scope of the disease. If 70 % of Alzheimer’s is due to Lyme and even more of Autism…you can go down the list – and then start counting the psychiatric patients who actually have Lyme, the stillborn babies, the early childhood deaths (SID) ADD and ADHD, childhood depression…not that all of these are due to Lyme but the latest research supports a HUGE number far beyond CDC’s estimates. I have felt just like you regarding abortions in the 50′s – when my husband had to mix the Rocephin on the kitchen table and a friend changed the needle each week for my a-port, and adding insult to injury we had to watch our finances disappear due to the cost…at least news stations and papers and magazines are beginning to tell the story.
Keep your hope alive Tessa – science will trump the egotistical powers at IDSA and then medical doctors will be forced to treat and insurance companies will be forced to pay. Lets pray that it happens in our lifetime!
Blessings,
Jenna
March 26th, 2009 at 11:40 am
Jenna: Thanks for reply. I am wondering are you well yet? What did you take? Thanks. Tessa
March 26th, 2009 at 1:31 pm
I am getting better every day. I have been trying some new protocols for my free ebook collection and I think I have found a real winner, however, since I have been so ill for such a long time I didn’t stay on it long enough. 80% are completely healed after 3 weeks. But it is no picnic. I am still gathering info before I publish. What about you?
March 26th, 2009 at 2:26 pm
Jenna:
I was in Cheasapeake Bay Area for a week at my sister-in-laws house on the water (heard that is the worst for ticks) in August 08. Completely ignorant of ticks and the problems that create went blackberry picking while there. Got on the plane to come home August 5 2008 with fever and bladder infection. Put on antibotics for bladder infection. About 3 weeks after finishing antibotics the problems started. I hit the ground hard. Very sick. It took 3 months and about 10 specialists still no answer. I was diagnosed by my lyme doctor here November 11, 2008. I was diagnosed by Igenex as lyme positive and babesia positive. I was on Mepron, zithro, and ceftin up until about 3 weeks ago started doxy with zithro and ceftin. I was on Mepron for about 3 1/2 months and doctor felt like that wasnt an issue anymore. I am suppose to start flagyl now but my doctor here is telling me continue with zithro and doxy with the flagyl and discontinue ceftin. Another specialists I saw in Houston is telling me to stop zithro and continue the ceftin with doxy and flagyl. Thus, I am at a dilemma as I really didnt want my doctor here to know I sought a second opinion.
Honestly, I like the doctor here but I felt I wouldnt do my health justice to not at least get a second opinion. The doctor in Houston has been treating lyme for 10 years, doctor here I think about 4 years? Do you have any thoughts on the med’s? I go feeling pretty good and then I dont feel so great for a awhile. That is going on right now. We just got back from skiing and I felt pretty good ( I dont know maybe weather up there was different who knows – maybe its because I want to exercise so badly again and I walked a 1 1/2 two days in row did it). I get frustrated sometimes although I believe I will get better completely sometimes I loose that thought. Soooo Sorry. Thanks Jenna. Tessa
March 26th, 2009 at 2:51 pm
Tessa, you went skiing!! That is amazing! I hate to admit how envious I am! I live only 15 minutes from a wonderful ski resort (Sunday River) and I longed to go skiing all winter but in addition to the profound weakness I suffer with, the cold drives me to my knees! Lyme hates extreme cold or heat and your ski trip most likely caused a herx. The issue of docs is so personal – I think you did the right thing because you felt it was necessary. The more experienced specialist would be the best choice in my limited opinion because we are all so different and react to meds and combos so differently – you may need to pulse the abx for awhile or you may need larger doses or you may just need more time. It sounds as though you are very active so the abx protocol must be working or you would be getting worse.
Re-read Dr. Burrascano’s guidelines (if you don’t have them there is a link on the right sidebar of the main website http://www.LymeDiseaseResource.com. That will give you more confidence in the combos you are on and also strict instructions about exercise. I used to ride 2 sporthorses every morning (I competed in dressage) and guiding a 1500 pound animal in dance is a lot harder than it looks! All the whining is to empathise with your desire to recover your active lifestyle…we have to be patient, eh? Not my strong point!
Tessa, you ARE going to get completely better! Believe it! It is just going to take some time. You can email me any time at jenna@lymediseaseresource.com if you need to vent or get another opinion. I wish you the very best health and happiness!
Sincerely, Jenna
October 24th, 2009 at 4:30 am
The department of nuclear medicine provides imaging and diagnostic services utilizing the most modern, state-of-the-art equipment available in the field at bioscan.com!
June 16th, 2010 at 2:32 pm
I enjoyed your site. Its good to see good information on such an important subject..Keep up the good work ! Im looking for your RSS feed to stay in touch.
October 13th, 2011 at 8:11 am
[...] Letter Regarding Appointment of Committee to Review IDSA Lyme Treatment Guidelines [...]