running wild said...
Girlie - I have seen so many of your older posts and understand how you feel, what you have been through. As I've mentioned, it took 11 years of being told it was all in my head, I've "lost it," and many other negative things before I was finally diagnosed with Lyme. This, despite the fact I was, obviously, losing fat. Of course, I was told I had to eat more.
My thoughts are on everyone on this site as what I am dealing with is no different than everyone else. The part that has been hardest is when doctors have become concerned with possible cancer. This time it was because an orthopedic doctor said he saw two fractures in my thoracic spine. That, combined with reactivated EBV, worried doctors and led to weeks of cancer stress again. And it turns out, after X rays, CT scans, MRI then full body bone scan, there were no fractures. Unbelievable!
The PTSD you mention is correct. It could be called CLSD (Current Lyme Stress Disorder), and it is real. I tried to get counseling twice for it - first time the psychologist wanted to do therapy games, and the second one was drunk. And I'm not kidding about him being drunk. All I wanted was someone to talk with. This site is therapy for so many people, and your time as moderator is so appreciated by many.
I'm just at a point where money means nothing because I can't enjoy it if I have any. NOTHING is more important than getting better, as it will make me a better dad and life will be better. What you mention about concern for relapse is always going to be there with this, but getting better comes first.
I have to say that my PCP was wonderful. I believe I had my first ever appt with her when I got my first lyme symptoms...she didn’t know me - and could have dismissed my symptoms like I’m 100% sure all other Docs in the clinic would have.
I can’t imagine being in that situation where docs are suggesting it’s in your head -
So glad you do not have the fractures but how incompetent is the doc who said you did?
Regarding money - that’s what my husband and I had discussed when I was contemplating going to Dr J. It is an expensive trip. All the money in the world means nothing if you’re sick and can’t do anything. Better to be broke and well.
I think most people with chronic Lyme would agree.
But I consider myself lucky - as not all spouses would agree.