In the last two weeks my daughter and I have received the results of our tests from IGeneX. Although we were told the initial Western Blot were either inconclusive or weak positives, the 31 KDA Epitope tests for us both were positive.
I contracted Lyme when around 3-4 years of age in Eastern NV but went undiagnosed until the tests mentioned above. We went camping at a lake about an hour or so from home - but in the mountains. When we went home my mother found a tick embedded so far in my head that barely any of it was sticking out. They tried pulling it out with tweezers but couldn't get it. They would have used turpentine if they had any. As it was they used a hot match. My mom seems to recall that they did not get the head out of me. Since I had long hair no one would have even known if I had an EM rash or not.
I have been ill since I can remember - aches and pains and cognitive issues, extreme fatigue - being diagnosed with Fibromyalgia/CFS, hypothyroidism, Type II diabetes, Rosacea, hormones out of balance, underactive adrenals, etc. I am having discharge and crusting around my eyes and am going to see an LLOpthamologist mid August. I have been told my my doctor and optometrist that this is nothing but allergic conjunctivitis but no allergy eye drops nor the steroid eye drops worked. I saw an Opthamologist in CA who sent me to an eye disease specialist who did scrapings. They came out negative so he told me to find someone locally when I came home to find out what is going on, but they both agreed it is more than allergies.
I am now convinced that my daughter was born with this. She has Asperger's Syndrome and all of the aches and pains, hypothyroidism, eye discharge, etc. She was also bitten twice at at lake in Kansas but the gp wouldn't treat her because she didn't develop a rash either time.
We both just started a long-term treatment of Ceftin and will call our LLMD in 6 weeks to let him know how we're doing and then be seen by him again in 6 months but treatment will most likely be for a year or more. We don't have a choice but to see this doctor. He's the only LLMD near here. Many are trying to get in to see him so you can't see him very often. He has a very long waiting list. It took us 1.5 years to see him. There's another quite a ways away and you have to pay for him out of pocket for everything. With all of the medical bills we've amassed over the years we can't afford him.
I am now hopeful that, in the future, we will be able to lead fairly normal lives. At least this is what my LLMD told me - then looked at me and said "but you don't know what 'normal' is, do you?" I said, "no, I don't". How can you know what "normal" is when you've been sick your whole life? Any improvement to me will probably feel more normal - the same for my daughter.
-------------------- Dx with Lyme & homozygous for MTHFR. Antibiotics & nutritional IV's didn't help. Posts: 57 | From Kansas | Registered: Jun 2010
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