October 2007, during soccer season, I came down with what I believed was a bad virus. I was out of school a week, then felt OK the next week, then sick again on week #3 and went to my pcp. She presumed it was a sinus infection and I was given a Zpac. Felt somewhat better on week #4, but then sick again for week #5 and given Bactrim. I had a reaction to the Bactrim(hot flashes, flushness, achy), so we stopped it. Still feeling sick and missing school the following week so I had a CT of the sinuses. It was clear. I had pain behind my eyes, headache 24/7, sensitivity to sound and light, fatigue (we tested for mono multiple times, all was negative) and just didn't feel well. This just went on and on.
Brick wall #1- My headache was so bad and the pcp didn't want to do anything else without further testing, so she told me to go to the emergency room and they could get the test approved quickly. We traveled to the "best" brain hospital in NH, and the emergency room DR was the rudest and most unprofessional I had seen (up to that point). He said," I don't know why you are here. It's just a headache!" He actually called my pcp to figure out why she sent me and then did run a CT of my head. When it came back clear, he pulled me into another area away from my parents to wait. Then he proceeded to tell my parents that I need therapy and kids can mimic their parents symptoms for attention. I was so upset. Little did I know this was just the beginning of this mindset.
When I returned to my pcp to follow up on what to do next, because I still had this 24/7 headache, she also began talking of therapy for me (she did try me on a short time of Zoloft!). My mom stood firm and quickly changed pcp's because we obviously didn't have the same point of view on my illness.
I had been seeing a Gastro Doctor for years and was again, since this illness, having stomach pains and nausea as well as not sleeping well. After a while we finally did an upper GI(clear) and an Endoscopy(multiple peptic ulcers, bile reflux). I tried several medications, with no help for that. She finally put me on Nexium (after pepcid, cyproheptadine, and other acid inhibitors didn't help) and said I had to get to the bottom of the headaches because they must be causing the stomach problems.
Enter Pediatric Neurologist #1- He said I had "Chronic Daily Headache" and there was no test to run, no known cure, no known cause except maybe viral, and we would try and manage the headache with medications. I was a guinea pig. After he took me off the Zoloft, I tried Amytriptaline, Topamax and Depakote. Then he said he couldn't help us anymore and we had to find another Dr.
Enter Pediatric Neurologist #2- He had no real diagnosis either. He did run an MRI-MRV (clear) and told the PCP to run a thyroid test, ana, and crp. He suggested Steroids, but my mom said NO. If it is Lyme it would be a huge mistake. He said he would wait for us to investigate the Lyme. He suggested Biofeedback(another method of just dealing with it). Ugh!
So back to the pcp#2 who finally ran some BLOODWORK after 9 months! Mono(neg), Anemia(neg) Lyme(neg) ANA (POS). Physical (non eventful). Another referral....
Pediatric Rheumatologist- Right off the bat, I need counseling. It is all in my head. I had a little Fibro- like symptoms, but she didn't want to "label" me because with the right attitude and putting on a "happy face" in the morning, I could over come it! WWWWWWWHHHHHAAAATTT????? She was a nut case. I told her we were waiting for the Lyme results to come back and she said she was familiar with Lyme and I didn't have it. She did the standard blood test, but was an evil person. I won't go back. CRP was elevated, but she figured it must be lab error. Sure......
Because of the overwhelming advice to see a counselor, I started seeing one to shut everyone up! She is nice and doesn't think I'm crazy at all!
Finally MOM started reading about Lyme and how inaccurate the tests are. She finally got me in to a Lyme Literate MD. He said we have to test at Igenex to start with. He did the CD57 at Labcorp and it was LOW 28 (normal is 60-360), Igenex had a positive IGM, but negative by CDC standards. IGG was negative. So we went a step further and did a Urine Blot Assay, 3 out of one was POSITIVE. Whew.....we finally had our official diagnosis last Monday after 1 year. He also believes that I have other tick born diseases Bartonella and/or Babesia along with Lyme.
Oh what a trip!
Update & Tips Over The Years
4 days ago