Posted 6/17/2015 2:59 PM (GMT 0)
Foodie I will chime in so you don't have to search.
I am in the great State of Texas, just recently visited your neck of the woods, it was beautiful but I felt awful and wasn't sure what was wrong with me.
I started going to dr's in Feb because of pain in my jaw, throat etc in Feb, dentist(fear of oral cancer), ent, oral surgeon, another ent, gp in one town, gp in another town.
Dentist and oral surgeon said everything looked fine, ent #1 said looks like you have a salivary gland infection, well he didn't say that he said I have the perfect antibiotic for this and I figured out what it was, I felt better but then it came back and I called him so he said let's do a ct scan of your neck, came back fine after calling and saying it still hurts he said I want you to see a neuro, well that took 2 months to get into neuro, in the meantime 1st gp told me I was to stressed and prescribed me Xanax never looked at the list of symtpoms I brought with me and practically ran out of the room, didn't take the Xanax, 2nd ent did and endoscopy, everything look fine other then a little Reflux, ordered an MRI of my brain,everything fine, in that appt he said I sure hope it's not...your so young...I said could it be MS, he said sure it could be but he never said what he was thinking. During that time I did tons and tons of online research, a terrible fear of ALS came upon me, I am 39 almost 40, also the major brain fog, tremors and strange feeling in my head vertigo feeling, I had 3 days of tactile numbness all over my body, crackling in my head, on and on. I searched and searched and thought Lyme Disease but dismissed it because I live in Texas, I went to a second gp with a list of symptoms on one side of my piece a paper and 3 possible diagnosis on the other, MS, Lups and Lyme Disease, this GP said it sounds like thyroid, he never examined me other then when he was about to walk out of the door, he held both sides of my face and said open my mouth, my left side jaw clicks and deviates and he said you have bad TMJ, I said that doesn't explain everything else, he did all the standard blood tests and a few extra thyroid tests, said I have symptoms of
Depression prescribed me Zoloft and said to me "we live in Texas, there is NO lymes in Texas so I am NOT going to test you for Lymes". Guess what all my tests came back normal except me being anemic but my iron is normal but my B12 was high. I asked to have the test for thyroid antibodies, he agreed but said if this comes back normal then he wants me to come in and discuss my hair falling out due to a stress factor in my life. My son was diagnosed with Juvenille Diabetes in Jan but my hair started falling out in December. I never went back to him. I did try to take the Zoloft but it made me throw up so stopped. I decided to get my self tested through Igenex, along with co-infections. I say the PA at the neuro's office, normal
Neuro exam except minor sensory issue in left arm/hand. I had developed speech problems, word searching
Etc, pain had pretty much resolved in jaw/mouth area. The PA specifically asked "have you EVER been bit by a tick because this is the way Lymes presents", I went on to tell her I had myself tested and I was awaiting results. I finally received my results and I was CDC negative, but I joined this amazing forum that day and asked for help with interpreting results. Traveller and I believe Girlie said you have Lyme Disease and welcome to the club, I received a list of
LLMD doctors, made two appts but not till the end of July, I called another and was able to get in just a few days later, 5 hours away from my house. He treats Lymes but he is not a LLMD, he looked at my Igenx test results and said I don't think you have Lymes, but
Mold toxicity presents like Lymes, he tested me for all kinds of things and tested me again for Lymes. Left there in a fight with my husband who now believes I have lost it and why would I believe people on a forum and not doctors, that was a Monday and on Friday I received a phone call from an RN at my County Health department stating that some of my test results have to reported to the State, I am positive for Lyme Disease and they track this type of thing, WHAT! The do toes office hasn't even called me.
He had originally put me on 100mg twice a day for 30days, not enough but I am taking it, I also started the Buhner Herbal protocol for Lyme. I went to a follow up appt with the PA just two days ago hoping she could prescribe me correct dosage of antibiotics, she can't prescribe them, referred me to a infectious disease doctor, I have a phone consult with the dr 5 hours away tomorrow afternoon, hoping he will prescribe me correct dosage of antibiotics to get me down the road to the real Ilad trained LLMD at the end of July.
So if you have a clinical diagnosis now, get to am LLMD and make sure you ask if they are Ilad trained I did not the 1st time, I was told here to do so, that was my mistake.
Also something I did unintentionally was took a heavy dose of Resverotrol two days before my 2nd test, caused me to have bad diarrehia, I was over zealous on getting this Lyme killing party started and believe it kicked my immune system into a gear that it was creating enough antibodies to show positive on a labcorp test.
I know this is long and I am sorry, but this has stollen months or potentially a year of my life, still don't know when infected, if they say you are better and you do not feel better then you aren't better, it's not in your head! And I have spent several thousand dollars on unneeded tests. Money I could have spent on things like an infared sauna, massages, etc! Things that will improve my health. Please get yourself to the right doctor ASAP and this is a great forum! Hope this helps.
Please excuse any errors in my typing!
Blessings,
Iheartx