Wednesday, July 20, 2011

So weird....

I've written a couple of posts on my iPad this summer and none of them seem to be actually publishing (or even being saved as a draft!).  Ugh.  That's annoying. 

Not much new here.  Still not feeling well.  Still having some tremors and a little vertigo.  It's only mildly annoying.  At my rheumy appt, nothing was changed.  I'm off the stupid Lyrica (never did much-if anything-anyway)  He only talks about fibromyalgia now.  Funny because I truly don't think I have that.  (but what do I know?)

I tried to go back to my Infectious Diseases doctor because I wanted to have her run a Western Blot test for Lyme Disease.  My very first rheumatologist ran a C6 Peptide on me back in October of 09 and it was negative at .41.   I never had this doctor run one, because I just trusted the other test. I've since learned that there are a TON of false negatives on that test, so I figured I should try a different test that tends to be more specific and accurate.  Well....she won't let me come in for blood work.  She said that they are "not accepting new LYME'S patients" at this time.  Ummm...wth?  Seriously?  I have not been diagnosed with Lyme yet and I am an established patient.  How could she do that??  Obviously, she is afraid of the LD controversy and wants to stay as far away as possible.  ARG!

I'm scheduled to see a LLMD (lyme literate medical doctor) at the end of October.  We don't have any of those here in Texas, so I have to go to Missouri to be seen.  Insurance doesn't cover it, either.  I'm a little frustrated because it's not fair that people aren't getting treated for Chronic Lyme properly, doctors don't believe in it, and therefore those people that DO indeed have LD are going longer and longer without proper treatment and they just get more and more sick as time passes.  It's so unnecessary.

Then I start worrying about the other side being true.  It's not a scam, is it?  I mean...I don't want to have to pay tons of money to see a doctor in another state, but I really think LD is a possibility based upon my symptoms.  I don't want to be on antibiotics for months and months (not to mention the supplements, etc).  BUT I *DO* want to feel better and I *DO* want my life back.

It's hard for me to type much because I have terrible concentration these days, but this journal is important because I need to keep track of my symptoms, treatments, and meds and my memory SUCKS now.  It's rather scary, actually. 

Well, I promise to update sooner.  Hope you are all feeling well and having a nice summer!  :)


  1. I will be interested to see what you find out after this Lyme specialist visit. There is a treatment I have been reading about where one takes antibiotics for like two years. I am wondering if this is the same thing you are talking about. Although this specific treatment didn't mention Lyme's disease specifically. This treatment doesn't seem to be covered by insurance either but I am beginning to think I may try it at some point. I hope you find some answers. i truly do get the frustration of all of it. Good luck and keep us updated...I for one will be reading.

  2. Hi Beth! You're right, all the controversy about Lyme is so unfair. Today is my one year anniversary of being on antibiotics, and I NEVER dreamed that would be happening to me, but it has given me my life back, and I am beyond grateful for that!

    You are doing all the right things and it sounds like you have really done your research about Lyme disease! Way to go fighting for your health. That's not an easy thing to do and it's easy to begin questioning yourself.

    This is the link that ultimately led me to my correct diagnosis of Lyme disease: If you have more than 20 of those symptoms, it says you should definitely have Lyme ruled out. I had over 50!

    Reading those symptoms gave me complete peace of mind after having so many wacky symptoms and doctor after doctor telling me there was nothing wrong with me when I KNEW there was something VERY wrong! Always trust your body. I hope this helps! :)