Condolences on your 'anniversary'. I totally agree with what you say and how you feel.
The good news is, you feel well enough to get heated up on the issue -- so I hope that means you are getting better.
I recommend the ILADS [dot] org website as a starting place for those who want to become more educated and/or involved on issues, diagnosis and treatment.
The book 'Cure Unknown' by Pamela Weintraud is excellent, covering both the science and politics of Lyme.
I haven't seen the movie 'Under Our Skin' but hear good reports.
And I have recently joined CALDA, which is the California Lyme disease association; they publish a monthly magazine with articles written by medical professionals and by patients and advocates, I find all the articles interesting and useful and not too technical; they are at lymedisease [dot] org and relate not only to California but to all Lyme disease patients.
There are also other groups, and we are somewhat fragmented at the moment -- but there is recent activity on a broader front among organizations to affect legislation and to address finally the hammerlock the IDSA has on diagnosis and treatment 'recommendations.' (I recently saw an excellent infectious disease MD about some Lyme-related issues, and he recited to me the IDSA guidelines, for example, that since I don't have knee joint involvement, I really don't have Lyme. Ignorance is about in the land even among the supposed best and brightest.)
Hope75, your comments are exactly right -- we have to keep pressing our doctors and our politicians. We must ensure that we have the right to treatment agreed between us and our doctors and not according to a government-mandated treatment program -- because that would mean treatment under only CDC guidelines, and then go rot in the corner. The fact that that CDC and IDSA are bound up so tightly together and that they are so negative about ILADS and other forward thinkers is dangerous for us, the ill and disabled.
Let your voices be heard! Write/email to your senators and reps to keep their hands off our medical treatment.
I'm still angry, too. I had everything on my side: I'm employed, have medical insurance, higher education, no pre-existing health conditions, relatively young, financially secure. Yet I kept getting the brush-off. Docs kept hand-waving, throwing in vague labels ranging from depression, fibromyalgia, idiopathic paresthesias, and more. I was sick to the point of not being able to function, yet told to continue to "wait and see."
The only reason why I am now getting treatment is because I took the initiative to seek out a doctor willing to take on a chronic Lyme patient. Had I stayed within the confines of mainstream medicine, I shudder to think of where I would be now.
With all of my advantages, I still had to go through this. I often wonder about and feel deep concern for others in a similar situation but with less resources.
Hope75, the presentations from the recent IDSA review are online. There are a lot of references given that would be useful for your literature review. In particular, see the presentation given by Dr. S. Phillips. His whole talk was pretty much a summary of peer-reviewed research on chronic Lyme.
Yup me too and I am at the begining they only want to tell me I have something else...the latest is EBV the Lyme titer was neg thats all they will say...like the thyroid TSH..Negative. I got the tick bite 20 years ago...
Same here. I got over being angry though. It did leave me with a mistrust of the medical profession.