Tuesday, October 27, 2009

Lyme Education Begins - End of October 2009

At the end of October I am feeling more like myself every day.  I still have some muscle twitches here and there.   I go for an hour walk and I sweat and stretch.  This is a major accomplishment.  Of course, I take an hour nap later but, hey, baby steps.  I attend the Lyme Action Program in D.C.  I meet other lyme patients and I am amazed at their resilience, humor and incredible stories.  I have lunch with a guy, R., and he tells me he has a barrel full of the medicines he has been prescribed over the years.  I meet a mother who has twins who both have lyme, as does her husband!!!  He is sitting next to her with an iv line in his arm. Everyone there, including the people who are running the program, all have first hand experiences with lyme.  Some people have an entire family affected.  I do not know how these people are functioning.  Especially the Moms, some of whom are sick themselves, but who also have children with lyme to take care of.  I cannot express what a tall order this is for them. Having been so sick myself and barely able to walk, I cannot imagine adding little children to take care of as well.  I am in awe of these women.  

I am getting more angry and feeling a sense of real urgency to become involved in this struggle. I learn more about the political debate that surrounds lyme disease, which needs to be discussed in another post b/c of how complicated it is.  Suffice to say, I have gotten a doozy of a disease.  I can't just get sick, I have to get sick with something that has serious debate surrounding it.  I will do everything I can to educate myself about the issues b/c it is making me so angry.  Especially what is happening to children and teenagers.   At this conference I learn some valuable information about spreading the "lyme" word.  I meet some amazing people.  I am, once again, humbled and inspired.  I decide I will organize a lyme support group in my area, b/c one doesn't exist.   

I am hesitant to be too detailed about what transpired at the conference, and that is one of the creepiest things about lyme disease.  Doctors names are whispered to each other, no one wants anyone to know who their LLMD is b/c if the wrong people find out that a doc is treating lyme patients in an "unorthodox" way he could have his license revoked or be brought under investigation.  That's right, that is happening RIGHT now.  Here is my analogy;  imagine for a second that your child has cancer.  She will get better with chemotherapy.  However, the treatment the doctor KNOWS will make her better from his PRACTICAL EXPERIENCE with hundreds of kids just like her requires she do chemo for say, 4 months.  But, the CDC (Center for Disease Control) and the IDSA (Infections Disease Society of America ), groups at the center of the lyme controversy, say that based on their guidelines their recommendations for this kind of cancer is that she should only require 2 months of treatment.  Therefore, your insurance will only cover 2 months.  Your daughter starts to get better at the end of month 2, and they end her treatment.  By the 3rd month, she is deathly ill again, and b/c they didn't get all of the cancer, it is returning.  Now, you have to pay out of pocket for the next 2 months, putting you thousands of dollars in the hole, or your daughter is going to continue to be VERY sick.  This is what is happening to thousands of lyme patients RIGHT NOW.  They require months of iv antibiotic treatment when they have chronic lyme disease.  Oh wait, though.  The IDSA and the CDC do not recognize that lyme is chronic or persistent.  RIGHT.  Just get on-line on any lyme web-site, or actually TALK to the people who are suffering and you will see it is most certainly chronic.  I challenge any one of the people who create this policy, legislation, criteria, or testing guidelines to keep saying that when they or someone they love gets lyme disease and 14 or 28 days of iv abx (antibiotics) doesn't cut it.  I would like to see them feeling better and then have their medicine taken away from them and see them crawling on the floor on their knees in so much pain they want to kill themselves. THEN they can tell me chronic lyme doesn't exist! I have also heard it said by these same people, "if you are sick after 14 or 28 days of antibiotics then it's not lyme."  It is so frustrating when I am experiencing this for myself and meeting so many who continue to be sick after the initial "standard course" of antibiotics. 

As October ends I am feeling good.   I still can't really taste anything, but other than that I can't believe how normal my body continues to feel every day.  I continue to sleep through the nights.  I went for a walk today and actually RAN a litte!  I see Dr. Saviour and he is happy with the progress.  I will be off of the doxycyline in 6 days.   I am scared for November b/c I know how much pain I was in and since I have been feeling so good I am just terrified that the pain will come back.  But Dr. Saviour says, "look, I'm your Dr. now and we will never let it get that bad again.  As soon as you have any symptoms, IF you have any, we will figure out our next step."   I am just so worried that we weren't aggressive enough from the start.  But the next few weeks will tell.  I am on my way to NYC for Halloween and it is going to feel really good to just be a normal person if even for one night!  

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