I have been dxed with Lyme and MS; Lyme first. I had started having symptoms about 3 1/2 yrs. ago after my son was about 6 months old. I started going to different MDs to see what was going on because I knew something wasn't right. I would have extreme weakness in my left leg after doing something strenuous which went away after several minutes. I asked my chiropractor and then went to see two neurologists because I also started having excruciating neck and headache pain as well as some numbness in my right hand.
One neurologist dxed cluster migraines (I had a history of single migraines before and this wasn't it!). The other had brain MRI and an evoked potential done. Nothing. I was told to "wait and see" for the next 6 months. I live in an area that is infested with ticks and we deer hunt on our property. We also have outdoor dogs who get ticks regularly and horses. Tick bites are a common occurrence here and we never thought much of it. I have lived here for 10 years and have had numerous tick bites in that time. Some with rashes that took forever to heal, some without.
Well, I waited and saw for the next 1 1/2 years because I was so fed up with these MDs. Then I had another MRI done in Jan. 1998. By then my symptoms were neurological in nature and constant as well as terrible neck and low back pain. The MRI was negative. I went along doing fairly well until I got a nasty tick bite in May that had a terrible rash that spread and took at least 4 or 5 weeks to heal I had started doing some of my own research on AOL and had looked into MS and other neurological diseases. None of them seemed to fit except some of the symptoms of MS.
After the tick bite in May I came down with flu like symptoms about the middle of June. All of my symptoms were much worse so that I was extremely fatigued and could hardly move. When I could, I went in to see a homeopathic chiropractor who had been treating me since January. She had blood work done and upon my request a Lyme test. Well the blood work was fine. The Lyme test came back equivocal.
My dad , who was a biology and chemistry college instructor, had Lyme twice and I asked him to look at the test. He said it meant I had Lyme sometime in my past.
I took the results of the test to my internist. He said he thought I had MS, and had another Lyme test done. It was mostly negative, not enough bands to be truly positive. I sent him a written request to treat me for Lyme. He said he would, but it was like opening "Pandora's box."
When I was on the Doxy for about 5 days, I herxed. I had read enough now that I knew pretty much what was going on.
I made an appointment with a supposedly Lyme literate MD here in St. Louis and went to see him. Again, more blood tests and a Lyme test. The blood tests were fine, the Lyme showed the same band as the second one I had. He said he didn't think it was Lyme and he wanted to see what the neurologist would say I was going to see after I saw him (yes, I decided to give a new one a try). He said after I described the tick bite and history and the reaction to Doxy that he wouldn't put me back on it "because it made me so sick".
I thought, come on, my daughter took it for 2 years for acne and never got sick.
Now I decided that I would look for a Lyme literate MD referral from someone in the know. A very nice lady in Columbia sent me a letter and gave me the names of two very good MDs in KC. Since I had nothing to lose, I decided to go to one of them even though he was not in my insurance group and was a 3 hour drive away.
After he reviewed my history and my symptoms ( I have about 30 of the 38 listed), he concluded that I did have Lyme and started treatment. I am now on a second type of oral antibiotic after having had good luck with the first only to have herxed and not recovered fully. I was at the point where I was walking normally, the vision and memory problems were clearing up and the fatigue was going away. I wasn't fluctuating during the day on how I felt. I am still working (I teach elementary school), and am hopeful that I will recover so I can continue. I want to get to retirement.
My MD said that if I don't recover enough on Biaxin (what I am now taking), that I will have an IV in March. I am a little worried about this, but also want to get better and if that's what I need that's what I will do. I have a family and live in the country where I like to get out and do things.
This is my story so far. It's far from over but I have hopes for better health in the future. Thanks for listening.
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