Tuesday, February 3, 2009

So Angry

This post is probably not going to be very coherent and very long and for that I apologize in advance.

For most Chronic Lyme Patients finding the answers to their medical condition is often years in the making. I'd say more times than not .... it takes a person saying "Oh have you ever thought you might could have Lyme Disease?" OR "I heard about this doctor that can figure out what anyone has." OR "Your symptoms sound suspiciously like mine before I was diagnosed. I have Lyme Disease." OR "I know this person that was as sick as you are now. They have Lyme." OR something similar.

I got the "Did you ever think it could be Lyme Disease? I am being treated for it and you should check it out. You have a lot of symptoms that are on the Lyme Disease check list." So then I checked it out and got in touch with the Lyme Disease Foundation that forwarded me to an appropriate Lyme Literate Medical Doctor (my particular physician also specializes in other things such as Heavy Metal Toxicity & Nutritional Deficiencies & other things so I knew he wouldn't have "Lyme Blinders" on and only assume that I had Lyme Disease).

Integrative Medical physicians are often under attack by their medical boards ... whether those medical boards are in North Carolina or other states. I know of several physicians (even those that treat other things than Lyme Disease) in North Carolina that are under investigation. In fact not so long ago, we had one physician that did treat Lyme (as well as AIDS/HIV) that moved from NC to SC because the NC medical board put so many restrictions on him that he was unable to practice the way he needed to in order to help his Lyme patients improve.

I have also gotten wind that another physician has closed practice in NC because of the same thing. This physician did not have enough financial funds to move his practice to another state and he was also a bit older than the first Lyme Doctor. This 2nd doctor may or may not be a Lyme Physician. I just know that his office recently closed because my doctor's office got some of his supplies.

Other states are having the same issues. I also found out that another physician decided to close his doors and most recently today ... I found out that a physician in Maryland was recommended by his lawyer to stop treating all his Lyme patients because FIVE cases were currently under review by the Maryland Medical Board. If they prove that he isn't treating the way that Infectious Disease Society says he should treat Lyme Disease, he could have his medical license revoked. The thing is that that particular group of people do not believe that Chronic Lyme Disease exists. They believe that Lyme is "cured" after only 60 days of antibiotics at the most.

Now I have been in treatment since February/March of 2007. That is way longer than 60 days ... I can not imagine how sick I would be had my antibiotic regimen been cut off at 60 days. No doubt in my mind, I would be in a wheelchair or a coffin by now had my LLMD decided that May of 07 that I was "cured."

It scares me to think that my doctor is under the radar of the North Carolina Medical Board. I know he's been under suspicion before for not treating the "standard of care" for other things. Because of that, I have to sign a paper everytime I go in saying that I want treatment. I know my physician doesn't do the things by IDSA's "standard of care." That is MY CHOICE! I do not want the "standard of care." That "Standard of Care" got me no where for 12 years. And now that "Standard of Care" is going to cause a man who spends more time caring about his patients more than probably his own family ... to jeopardize his medical license.

This angers me more than I can even coherently write!!!

What can you do?

1. If you're in North Carolina: Go to this website and join the fight for our North Carolina Integrative Medical Physicians.

2. If you're a Lyme patient or know about a Lyme patient, go to this physician's blog. Support him by writing letters and calling! Who knows some of you might even be seeing this LLMD yourself ... or have considered seeing him ... His practice is in danger! His patients are in danger. Please help him!

3. Another for NCer's ... Go to this website and email them if you have an ELISA and Western Blot test that is CDC positive after January 1st of 2008. Just recently, North Carolina has declared that if TWO people in a county have these two tests as CDC positive ... they will declare it an endemic area for Lyme Disease. Please please please ... email them with your stories from North Carolina so they can determine whether you would help meet this criterion. In order to improve the quality of life for those with Lyme Disease it is vital that we get as many counties in North Carolina deemed "endemic" as possible. Only then will the IDSA realize that there is Chronic Lyme Disease!!!!!

Thank you for your time and hopefully I made myself as coherent as possible. This message and this blog would NOT have been possible had I received "standard of care" treatment in North Carolina.

Mandy from Under Our Skin would not be ALIVE if it had been for "standard of care" treatment. Please I beg of you ... don't let my friends die because of idiotic infectious disease doctors and medical board drama. Don't let our doctors go under because of lack of knowledge by the medical board & infectious disease doctors. Scroll back up if you have to and see how you can help.


melody said...

Thank you for this post. You've articulated this so well and I am with you. I am also very angry. The more I learn about Lyme and the politics surrounding it, the more I am grieved and outraged by how our medical system's "standard of care" is failing and hurting so many desperately ill people.

Thanks for posting those links. Although I'm not in NC, I'll certainly be looking into what I can do in CA.

Jennifer said...

Thank you Melody for this comment.

And I see you have only just recently been diagnosed. I remember the beginning. It was painful & difficult & frustrating. Now that I am knowlegable ... it's also painful, difficult & frustrating. It's just those things in a different way.