Tuesday, October 25, 2011

IDSA Conference Boston October 22, 2011

October 22, 2011 marks probably one of the most exciting and empowering days I've ever experienced.  

     Myself, my Daughter and grand kids made the trek from NJ to Boston Mass. where the Infectious Diseases Society of America (IDSA) were having their 49th annual conference.  We arrived in Boston on Friday and met up with other Lyme patients from other states.  I cannot describe fully what it means to finally see people you've been friends with online.  Easily 70% of Lyme patients are housebound or too broke to travel so our lives revolve around our support network on the internet, so we don't get to do this often.  

Lots of hugs and conversations and laughter was to be had in the hotel lobby where we gathered to work on the protest signs. 

                                             Why are we going there you ask? 

      The IDSA writes the guidelines that doctors refer to when diagnosing an infectious disease such as Lyme disease or the many other Vector borne (transmitted by biting flies, fleas, mosquitoes and ticks) diseases.  In the case of Tick borne diseases, Lyme disease is the most common disease transmitted by the little blood sucker.  
Several other diseases can also be transmitted when bitten by a tick and they are referred to as co-infections  (read more on co-infections here).  

     The problem we are having as patients is that the IDSA guidelines make some very bold statements that are turning out to be not true in the life of a patient. One such statement is that Lyme disease is difficult to catch but easy to cure, if caught early.  Nothing could be further from the truth.  Patient after patient report that they were bitten by a tick and couldn't get a diagnosis of what they were sick with for a couple of years or more.  Tests, by the admission of the IDSA, are not reliable and not very accurate.  

     Doctors look at the criteria the IDSA put out for a diagnosis of Lyme disease and if the patient tests negative, even with confirmed rash and other symptoms. The doctor does not treat the patient with antibiotics, instead he/she orders more tests to rule out other things.  
My own personal experience with the testing went on for at least 2 years. Blood tests, scans, x-rays, and so many different doctor referrals I can't even remember now.  

     Lyme disease is a gram negative spirochete bacteria, Very closely related to Syphilis.  Those types of bacteria are known to burrow into cartilage, muscle tissue, the brain and hides very well in the central nervous system.(more here).  

    So, the IDSA says Lyme can be cured with 14 to 30 days of antibiotics "if caught early",  What of the hundreds and possibly thousands of patients that did not get a correct diagnosis "early"?  Nothing in those guidelines tell our doctors what to do then. 

    Here's where it gets even more insane.  If a doctor does feel that the patient has Lyme disease based on bite history and symptoms and proceeds to treat the patient with antibiotics until he/she sees improvement (which most often takes much longer than 30days in late infection) in those symptoms, the doctor is at risk of losing his license or faces disciplinary hearings of a med board for not following the IDSA guidelines. Read here for more on the conflict between the IDSA guidelines and the Treatment Guidelines of the International Lyme and Associated Diseases Society (ILADS).  

We want and need treatment options. (each person is attacked differently by the bacteria and we are not carbon copies of each other)

We want informed consent between patients and their medical care providers.  (the same informed consent cancer patients are allowed for chemo)

We want the insurance companies to cover the recommended treatments our doctors prescribe.

We want the IDSA to listen to US! the Patient! not some failed, half completed studies that say antibiotics won't work.

We want better testing for Lyme disease and co-infections.

 I can't possibly cover the whole subject of the failings of the guidelines in this small post, but this gives you a general overview. 
     We arrived at the Boston Convention Center at around 11:30am on Saturday.  What a pretty day it was with the sun shining brightly.  

More hugs and encouragement among everyone as we lined up facing the building.  

     As our chants rang out you could hear it echo under the giant over hang of the building. It amplified our voices ten times over. How could they miss hearing what we had to say now?  Almost immediately we got the attention of people coming and going from the convention center.  
Them, Watching us, Watching Them

I swear, it looked as if everyone of them pulled out their cell phones to snap off our pictures and we could see people looking out the second floor windows taking pictures.  
(The Final plea at the end of the protest, a Die-in.)

I want to say a great big THANK YOU to all of you that went to this protest and a great BIG Thank you to those of you that couldn't go but were our cheerleaders and helped us to maintain the strength needed to be there.

    All of you are Heroes! and by golly we will finally get listened to one day soon.