Hello,
I have posted many times on this forum all mainly for gi problems and headaches/anxiety. So to go a little into my backround my symptoms showed up predominantly in November 2008. Although when I was 11 years old living in Minnesota I had a tick on the back of my neck. My mom happened to find it when she was curling my hair. She ended up burning the tick and getting the head out. I was on amoxicillin at the same time for an ear infection. I know that my mom frequently checked the site to make sure it didn't get any worse. My pediatrician also told us not to worry becasue I was already on antibiotic.
Didn't really have any problems until I reached 13/14 years old. Started developing debilitating panic attacks that would actually make me get up and almost run out of the class room because I felt like I was suffocating to death. I don't know how but I made it through high school and moved to Ariziona. So I've been living in Arizona now for about 11 years and didn't really have any problems and felt good. In May of 2008 went to Colorado to see my best friend and went hiking out in Longmont where her dad owns a ton of land and farm animals. So I got to hold a lot of chickens and attempt to milk a cow just a bunch of fun outdoor stuff. Felt great the entire trip. I get back home and during the scorching summer our refridgerator goes out. We had to wait about 6-8 weeks before we could get another one. The thing is we didn't even know it had gone out for probably a week or 2 because it was still kind of working. We found out the temperature was holding at around 45-50 degrees and for a while we could not figure out why the milk was always going bad so quickly. We finally got the new refridgerator around september.
Then end of september early october I kept noticing that my left calf muscle felt like it was swelling all the time. My leg started to look like it was losing its muscle tone. It became so much tighter than my right leg like I was constantly over working it all the time. Then in November 2008 a week before thanksgiving I get the flu and Im in bed for probably 3-4 days. My doctor put me on tamiflu and it seemed to work for about an hour then I started throwing up. So I called my dr back and she said yea that's a pretty common side effect of tamiflu. So I get better but feel like Im not my usual 100%. After 2-3 weeks of being back to work i notice my lungs feel like they are burning up. This burning sensation seemed to hit a different organ every other week. My lungs would burn and I would see my dr and got ct scans with contrast and he noticed I had calcified granulomas in my lung base but shouldn't worry about it. Then a week later my kidneys would be burning and I would go back to my dr and I would be positive for a kidney infection (which I never got). Go on antibiotic and I would get better for 2-3 days but then it was like the antibiotic would just stop working. The burning pain would just be there all the time. My lymph nodes all started to swell especially on the left side of my chest, neck and in my underarm. Went back to my dr and my white blood count was low and was worried I may have lymphoma so he sent me to an oncologist.
Oncologist did tons of blood work and the only thing she could tell was I was positive for Eppstein Barr. During all this the burning pain has somewhat tappered and I began to feel a lot of pain in my stomach area. The pain turns into burning and gets so bad I end up going to the ER in jan of 2010.
Meanwhile the last 2 years I had been on 10 different antibiotics because of constant "kidney infection/UTI" they can't clear up or I had the flu (again).. Dr's were never totally sure what I had. So the stomach issues start up and go to the ER and they think I have a small bowel obstruction. In the hospital for 4 days had endo and colonscopy done everything came out fine. Drs Still had no idea why I was feeling the way I was and send me home. 2 weeks after I get out of the hospital I start having a hard time swallowing like someone is strangeling you but only on the left side of your neck. Then my left arm starts feeling like my of my leg, my kidney, my lung and my stomach. The burning pain is like someone is setting fire to your muscles and tendons and nothing eases the pain.
Then November of 2010 I completely shut down. I am now soo exhausted I could easily sleep 18 hour a day but cannot go and stay asleep, can stay up almost all night long, I have almost no strength on what seems like just the left side of my body, I am nauseous all the time, I have lost about 35 lbs since all of this has happened, my blood pressure in constantly low now and was diagnosed with orthostatic hypotenstion but never used to be, pressure and pain in the top and back of my head, tennitius all the time, floaties in my eyes all the time, feel like im in perpetual brain fog-feel like everything is somewhat not real, constant overly dry skin, eyes and hair I cannot use enough lotion or conditioner (assumed its just because of where I live but never had this problem before), constant burning/pain in my upper esophagus leading down to my stomach, absolutely cannot metabolize anything anymore.. If I take an ambien to try and reset my sleep pattern I get really shaky and tachacardic and feel like my body is going into over drive or shock and have a hard time catching my breath. I have taken ambien for 5 years and just recently within the last 5 months cannot handle any medications at all.
Just feel like everything is slowly shutting down on me. I had a lyme test done in march of 2010 but it was negative, also have had barium tests, swallow tests, mri's of head. I do have a bulging disc in the back of my neck and degenerative bone disease but dr said it's normal arthritis. When I went to my dentist I had lost 3millimeter of bone in my jaw from the year before. The dentist didn't know what to think. Neurologist perfomed nerve conduction test and eeg test all were negative did find out I was Vitamin D deficinet but told me to go out in the sun more.. Lately I can hardly get out of bed and had to quit my job because I can't be on feet at all anymore. We are struggling very bad fianancially and worried about next month. I know this is incredibly long but this as been my own personal hell for the last 3 years and don't know what to do next. Any advice would be great.