Posted 9/2/2014 4:49 PM (GMT -6)
So I have been putting off coming to this chat because honestly.. I DONT WANT TO HAVE LYMES. But at this point I need to put fear aside and get educated and I figured this was the best place to go.
In december I got very sick. I had a few swollen lymph nodes, I was so weak that I could barely walk to the bathroom, and i had wide spread body pain. after WEEKS of ER visits they tested me for Mono and it came back positive. I thought that was weird because I didn't have a sore throat or fever but they said not everyone gets the classic symptoms. I guess they caught the mono towards the end because 3 weeks later I tested negative.
Even though I no longer had mono I was still weak and achey. Eventually it got worse. I was having brain fog where i couldn't concentrate and I would mess my words up I was trying to say, I was having horrible dizzy spells, my vision was very blurry, I was having headaches, and I was having faint tremors in my hands. They admitted me into the hospital and began running ALL the tests. They did CatScans, MRIs, ALL blood work you could imagine, even a spinal tap. NOTHING came back. I requested a Lymes test and that too came back negative. I was told based off of all the test being negative and my symptoms I had Fibromyalgia. I even went to Mayo Clinic for a second opinion. They retested all my blood work including Lymes and it was negative as well.
for about 3 months I got better. I wouldn't say all the symptoms went away but I could tolerate them better.
All the sudden one day I woke up with my mouth/tongue burning and tingling. that was 4 weeks ago. My mouth/tongue still burns and tingles daily and I get some burning sensations in my skin.
They ran all blood work again and another MRI.. Still nothing. They were suppose to run ANOTHER Lymes test but the lab didn't do it like they were supposed to.
I just don't know what to do. NOTHING comes back. They are putting me on lyrica because they still think this is all fibro and nerve related.
Here is what I am concerned about.. WHAT IF IT IS LYMES?? I have been tested 2 times with negative results. But what if it is lymes and I am getting to the late stages? Will Lymes kill you if your not treated? Ugh! Its just so hard to not know whats going on. To know something is wrong but you don't know what. I am going to a Dr. in a few months that has dealt with some Lymes patients to have a 3rd opinion but in the mean time I am worried if it is lymes can it kill me while the tests are saying no (I know thats drastic but I don't know much about Lymes and after over 8 months of this I am really stressed and worried.) any advice would be appreciated.