New - Is it all in my head as Drs. want me to believe or are my symptoms lyme?

 

I had Bells Palsy in 2000 for 6 weeks, told negative to lyme, then during a routine physical in 2001 when I had no symptoms it showed I had lyme and my Dr. gave me 3 weeks of Doxy (so for that whole year or longer was never diagnosed).  I don't think that was enough treatment because starting in 2002 I started having cognitive difficulties which progressed over the years - short term memory, concentration, confusion - just not thinking right when I use to be so organized and could juggle things.  I also have neck stiffness/pain, knee pain on and off, then in 2006 another Bells Palsy on the other side of my face. I went to 2 neurologists and a disease specialist over the years.  I had 2 MRIs done and blood work showing everything is fine.  They all said just go to a psychiatrist because it is not lyme (there is no such thing as chronic lyme disease) it is anxiety/depression.  I have been going to a therapist for 4 years.  She even told me that there is something much more than anxiety going on and believes my symptoms are lyme related.  Why won't anyone believe me?  They all want me to believe I am crazy.

They said it is just a virus and there is no known reason since I didn't test positive for a stroke or lyme.

I took matters into my own hands and went to a lyme Dr. who treated me with oral for a few months that didn't work but then I had to pay over $10,000 to get IV treatment since insurance won't cover it. I finally felt the brain fog gone for almost 2 years but now it is back and now having nerve pain which I never had...Went to a new neuro who did blood work up, MRI and spinal...and said there is no evidence at all...he thinks it is unrelated to what happened in the past - why can't they think outside the box, they are all non-believers even when I got better in the past. How can I prove it...this is crazy...I can't afford this...medical insurance should like any other treatment. I am so FRUSTRATED and want to cry.

Thank you so much guys...listening to you is like getting a hug...which is much appreciated. I was hoping this new neuro would belive me but I guess I will go back to the lyme Dr. and hopefully just orals will work so I don't have to pay $600 a week for IV.

Hi Cindy,

Welcome to the forum. I am sorry you are not well and have experienced the "Alice in Wonderland", the "world is upside down and backwards" experience. Many of us have had this same negative journey. Your symptoms are real, your tests were real, and you are not crazy. You simply need to find a good lyme literate medical doctor (we call them llmd) that will help you. Ask for doctor suggestions from your area's local or state lyme support group. You can post a new topic here and ask for suggestions from the forum members. You should post your email so that members can tell you the contact info. privately. You can contact our member Ticker and ask for suggestions. You can also try contacting ILADS http://www.ilads.org/ and
Turn the Corner Foundation http://www.turnthecorner.org/bod.htm
These sources of info may get you started. Gather together all your medical info. and have copies ready to give the lyme doc.

For more info, read the topic at the top of the first page of this forum entitiled "The Basics, Newbies check this out". It will help you get started learning about lyme.

Best wishes to you for a speedy return to good health. bablymers mom