Another Lyme Disease Blog? Oh NO!

Yes. Its true.

I was bitten by a tick.

Many, in fact, over the years that I grew up in the Great State of New Jersey. In 1987, I got a "virus" that wouldn't go away. It was never treated as an infection, as my WBC was not elevated. I was 16, almost 17.

It took a 20 year journey to find out what was wrong. Many misdiagnosi (my coinage) took place in the meanwhile.

I also may have been born with a genetic disease, of which I never knew, called Ehlers-Danlos Syndrome. My family will be confering with a geneticist this winter to confirm/diagnose or even possibly get a differential diagnosis. Life is just chock full of surprises sometimes.

On this journey of mine, I have learned a few things about pain, doctors, medicines, and, oh, yes, community support forums and 'activists'.

I have learned a lot about the controversy surrounding Lyme Disease. I have learned about the infighting within said community, and the politics, scams artists, and activists that are really in it for their own benefit, profit, and recognition. I have learned a lot about other communities as well, such as the hypothyroidism community, the "alternative medicine" community, and subsets of autoimmune disease communitites.

In the spirit of the AA quote that is attibuted to Einstein that mentions how doing the same thing over and over expecting different results is insanity, I give you my blog.

I have talked with some in the Lyme Community about necessary reform in the actions that the sufferers and (some) doctors take that bring down the validity of the cause. I have seen similar issues in other communitites BUT the Lyme Community takes the cake for hysteria, spreading bad information, threats against narrow-minded scientists and doctors, turning their backs on the sickest, and the inability to deal with certain political and common-sense truths.

There are reasons why doctors do not want YOU, the patient, going on the internet to get disease information, self-diagnosing, self-medicating, and chatting with sufferers who very well may be internet trolls, disguised marketeers pretending to be in your best interest, or, even worse, diagnosing you.

Those who are sick cry for answers. It is not easy, as there are so many layers to the problems we face as a nation and a world in getting diagnosed and properly treated for illness and pain. The problem is not just with the doctors, the big pharma, little pharma, IDSA, politics and elected officials, insurance companies, or the internet. While these aforementioned things are huge hurdles and need to be addressed for change, they should not be used as 'scape goats when the chronically ill communitites are in need of reform, real protections, and people who speak the truth.

I said when I got better I would dedicate myself to the causes. I am not better. But I realized if I do not start with myself, and take that step, I'm no better than anyone else. I am also starting a NEW discussion group here (links will be up when it is time to start). I hope to get others, smarter and more eloquent than myself to write some articles on this blog with me as we move forward.