My daughter (just turned 19 this month) has had Lyme disease for 6 years. We went camping on Balsam Lake and *think* that's where she got it. This was between her 7th and 8th grade school years. She didn't have any kind of rash, no markings, nothing.
She missed her entire 8th grade. We got tutors and whatnot and she managed to keep up, but just barely. We took her to the New Richmond Clinic and the fools up there only tested her for Lyme after we insisted on it. Even then the tests returned negative. She was referred on to the sleep clinic in the twin cities, and a couple other places and ended up at the U of M. There she got a diagnosis of chonic fatigue snydrome, which we accepted and was told that natural herbs would be the best thing. So we went the herbal route.
She seemed to get better for a bit and actually went about 1/2 of her freshman year and sopohmore year on and off, but ill the whole time. We accepted that she had chronic fatigue syndome - after all the doctors all said so. But when she wasn't getting any better my wife took the bull by the horns and started doing some research on what could be the problem. Everything pointed to Lyme disease, so we had her tested again. In doing this we got her medical records and found stamped right on the 1st results that she should have been tested 6 weeks after the first set came negative - which New Richmond didn't do.
We find out that with Lyme disease a there are false postives, and false negatives using the western blotter test - which is all New Richmond used. Then we find out that 20 to 30 percent of the people do not produce the antibotic that the body uses to fight off Lyme, which is what the tests are looking for.
So now it's her Jr year and she goes to a counselor at school and it comes out she has thoughts of hurting herself. She spent 3 days up at United at the psych ward. Came home for 3 weeks and tried to take her life. Thank God we were there and were checking on her every hour on the hour. Spent 3 weeks up at United this time. Came home and goes to a counslor at Stout (Menominee (sp?)). He calls a couple weeks later and says she going to hurt herself and the only way she doesn't go the psych ward is if we can keep a 24 hour watch on her. We're only two people and can't do that so she goes to Marshfield Clinic psych unit. Spent three days there, then back to United to 3 more days and 2 week out patient. The out patient is OK as I work downtown St. Paul.
Then she comes back home for a week and trys to hurt herself again. She goes back to United for 2 weeks. In the the meantime we've got an appointment with a clinic in NJ coming up. We go before the judge (God bless him and the public defender, and the St. Croix county social worker, they know sometime about Lyme disease) and it's her choice of being released to our care so can take her to NJ, or to residential treatment for a minumim of 6 month. She can control herself just enough (again, thank God) to go with us. We left the court room, stopped at home to pick up clothes and were on the road all within an hour. This was Dec of 2004 - her JR year.
To make a long story short, I spent 2 weeks there with her and her mom, then I came home so hold down the job. She and her Mom spent the next 8 months living with my family in WV and driving to NJ to see the doctor every week. They did different tests to actually look at the blood (and not the antibody that the body produces) and find conclusive evidence that she has Lyme disease - the first time. They treat her with heavy duty antibodies directly in the arm for 3 months.
When she got home the end of the following summer she was back to hereself. She had no pains, no psych problems and was the little girl I remebered. I wish it would have finished there.
In March/April of this year she started sliding back again. We were warned that this might happen and she might have to be treated again. We waited too long and her mental condition had made it to the point that she mistrusted doctors - and I can't fault her on that. But we did get her to agree to go back to NJ to the clinic out there, and her Mom and her were there for three weeks and started the second go around.
By this time we have switched clinic to Baldwin, who started out OK but switched again to Hudson physicians which seem to be very good doctors. Anyway, in July she had a bad flare up and ended up at St. Joe's psych unit for 3 days. We were also warned that might happen as during treatment the symptons can get worse. They did and there she was up at St. Joe's. The psych doctors at St. Joe's called the NJ people "medical quackery", among other things. Thought everything wrong with her was in her head.
Anyway, that's pretty much where it sits now except we've found another doctor in Fond du Lac that works closely with the NJ doctors.
After the first treatment, and the Lyme was beaten down she got her high school equivalency in December, got a job as a waitress and in January started college at Stout. She was doing so well, and then it had to come back. Now she's got horrible joint pains, mentally has be watched and things aren't so good. The HMO has denied everything and now's that she's 19 is off the HMO, although we do have a lawyer in New Richmond talking to the HMO and can probaly get them to keep her on my policy until she's 25 or can return to a productive life again.
And the worst part of all this is, if it had been caught right away, she could have most likely been treated with oral anti-botics and been OK.
Sorry for the long post, but this pretty much sums it up - and is not in detail.
