Posted 7/1/2011 3:07 PM (GMT 0)
Hello All!
My story starts 20 or 21 years ago. I grew up in Westchester County NY and went to camp in East Hampton Long Island. Somewhere along the lines I must have had a tick bite. I was always running about in the woods. When I was 13 I could barely walk. My knees were swollen. I went to my pediatrician (with an HMO) who was convinced I had Lyme. He asked about flu-like symptoms. I said I had them a long time ago. I was still having stiff necks and backaches. He kept testing my blood over and over. It seemed like my blood was being sent all over the world. Its kind of funny how you think as a teenager. I thought that was pretty cool. My Pediatrician FINALLY started getting positive results back. He started me on a month of Doxy. I did it but couldn’t tolerate it well. Then he switched it to tetracycline. When that didn’t work I had a month of IV antibiotics. After that he thought I was cured.
Fast-forward 20 years… I had wrist surgery in February. I was pot on Doxy after the surgery. I became so ill. Went back to my surgeon to see if it was a post-op infection. Everything looked good. I got worse though. I was running high fevers, started falling down for no reason, and then I started walking to the left. Headaches like you wouldn’t believe with extreme light sensitivity. I became incontinent. I went to my primary doc who sent me in for a head CT. That was negative. He sent me to a neurologist who had me admitted to the hospital.
While I was in the hospital, they preformed an MRI, LP, blood work and all sorts of other nonsense. I told them I thought it was Lyme. They did an ELISA and told me it was negative. I requested a western blot. That was also negative. They promised to run my CSF but never did. If you are interested I can get the rest of my results. My MRI showed FLAIR in the left temporal lobe. The doctors told me that it might be congenital but to make sure I get another one in 3 months. Thanks guys!
I tried telling them that I knew the tests weren’t accurate. They told me I read too much. Did I mention that I work in the medical field?! The best part of the whole hospital experience was the infectious disease doc who told me, “This isn’t the season for Lyme.” Might I mention that I was in a hospital in CONNECTICUT?
I was discharged after a week. My symtoms were worse and I was diagnosed with ataxia and somatoform disorder. Right, so I just made all of this up. Of course I did. Makes perfect sense. I really hate doctors!
After my discharge I saw my primary again and he yelled at me and told me I was crazy. I was heartbroken. I hate doctors but really loved this guy. I also missed out on 20 years worth of Lyme controvesary. I had no idea that not only had nothing changed; it seems to have taken a giant leap backwards. The more reading and research I have done, the more I am figuring out that this has been what was wrong for the past 20 years! I have been so sickly, had more surgeries than a person should have in a lifetime, didn’t have ADHD, anxiety or insomnia until I had Lyme. The list goes on.
I lucked out and my (now) husband had bought me a book about Lyme. So we looked in the back and it had some doctors listed in the area. So we called around to see who could take me right away. We found one who didn’t charge an arm and a leg in NY. I have been seeing him since. He ran labs the first visit. Put me on Doxy right away. Ruled out a bunch of stuff. I tested negative for Lyme but positive for ehrlichiosis and bartonella.
So far I have had a month of Doxy, a month of double doxy, 2 months of Amox, pain meds, antifungals, nausea meds, probiotics, vitamins, cats-claw, back on my ADD meds, meds to sleep and way too much stuff for someone who doesn’t like taking Tylenol!
Last month I thought I had another tick bite. I had a bulls eye rash for the first time ever. We were trying to figure out how that can happen considering I am on a ton of antibiotics. I figured it was because I am on amoxicillin and not doxy anymore. In any event my husband told them that nothing has changed but I have been having fevers and sweats. So they thought I now have babisia. So they put me on mepron, and increased the amoxicillin. They were also trying to prepare us for a picc line and IV meds. We were already prepared. I went through this 20 years ago. So the plan was to try the mepron for a month and see if that helped. They also wanted to do blood work again. With my Lyme addled brain and my husband not thinking we asked if we could go to the lab my insurance covers rather than pay out of pocket. Well, all of my test results came back negative! Where as before I was positive for ehrlichiosis and bartonella. So, no picc line unless we pay out of pocket. Oxford won’t pay for it without positive test results. I am so disappointed. We just bought a house in December and I have been out of work since October (with the wrist injury). We are broke!!
I stopped the mepron about a week or so ago because I kept vomiting right after I took it. I stopped the amoxicillin for the same reason. Of course now I am getting worse all over again. Oh and trust me I have tried every combo with the meds. With food, without food, staggering them, I do take probiotics and eat yogurt (if I can keep it down). I have tried everything for the nausea. I am at a complete an utter loss. My next appt isn’t till next week. I don’t even want to go. My doc told my husband to try to come up with lots of money for IGNEX to test everything. Our concern is that Oxford still won’t cover a PICC line if the results are not from Labcorps. Should we try to find a new doc closer to home? We live in northwest Connecticut. My doc is in Westchester, NY.
I am so miserable. I just want my life back!
So sorry for the really long post. Thank you for letting me get this off my chest.