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Lyme Disease Message Board


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I am sooo sorry to hear about all that your son has been going through, and all that your fam has gone through over the years trying to help your son. :( I can only imagine how hard that must be, and I really don't think you are being paranoid about the lyme issue. Has he ever been tested? It definitely would not hurt to test him and see what might come of it - even if you did have to go behind your fp's back and try a different doc. It might be worth it to see what the results are.

I do have some advice though as far as kids having lyme. I first had lyme at 13. I was bitten on a family vacation out east in 1992. It took about 1 1/2 years to convince a dr that I had lymes and needed to be treated. I also did not have a rash, although I do remember having a swollen spider bite on my leg that went away after about a week. Didn't look like the typical bullseye that we all know and hardly ever see. Anyway, I suffered from the some of the same things I have now in my relapse, but to a much much lesser degree. I had the severe neck pain, slight fevers here and there, buzzing in my ears/body, back aches, easily tired, felt weak, stomach pains/nausea, leg/knee pain, depression/suicidal thoughts (just wanted the pain to be over), became very snippy/impatient whereas I had always been calm/pleasant, sensitive to sound and light, and a few other things also.

I saw every doctor practically in MN...including a big rotation of every speciality down at Mayo Clinic. My parents begged them to test for lyme, none would until we wore them down and they tested me. It came back negative of course, just like they said it would! They tried diagnosing me with tons of stuff, anything that seemed to fit some of my symptoms....fibromaylagia, chronic fatigue syndrome, anxiety, endometrious, ovarian cysts, depression, and finally when they couldn't really say what was causing all of my pain and symptoms they said I should be put into a mental institution to receive round the clock therapy for my mental imbalance, hypchondrism, and anxiety. Needless to say, they were all wrong.

Once my parents finally found a doc that would treat me clinically vs test wise I began to show signs of improvement, very slowly but it was there. I recovered after a year of off and on again iv anitbiotics. So my point is....I have been there with lyme as a child. Like adults we present differently than other adults, so children would be similar but have their own unique spin on lyme presentation. I sure hope you will find a way to have your son tested for lyme. I know living with it at that age almost drove me crazy and caused me many issues trusting the medical community from that point on. I hope that you can find some way to be sure it isn't lyme....it was horrible living with it and even more horrible having no one belive you that you were sick and needed help. Please keep us posted ok? I will pray for you and your fam that you and your doctors can finally figure out for sure what is keeping him from being the delightful healthy child he deserves to be. :)
Thanks for the advice, that's what I'm looking for because I am confused. I guess I wasn't too happy with my last two visits to the specialist when I was told I definitely still have lyme (because of symptoms), but because my tests are negative now the person I saw says she couldn't treat me (licensing issue or something because she said Dr. L would've been able to treat me). So I really got mad and didn't go back. Why did I spend $180 to be told to come back when I could see the specialist to get treatment. They said they would even decide whether to do the IV's. But they only treated me with 100mg doxy 2x a day for 2mos. to begin with. I think I couldv'e gotten better results with more aggressive orals.

But my symptoms are not bad (of course I'm taking all kinds of pain meds). The emotions and irritability are a problem, but I think I'm going to have a heavy metal test, too. My teeth look great and are all my own. Never had a root canal or anything, but I have about 20 fillings. Im 44, so there may be some mercury action going on. As soon as I stop pain meds I get shooting pains in my joints and bone, but maybe I'm just jonsing. The knee pain is totally new, though. Heel pain, totally new and weird. My knees feel like creeky doors. Hard to describe.

I actually stopped at the health store for organic lemons, but they were closed, so next week I'll stop by for more cats claw as well. I also need to get more flax oil. If anything, it makes my hair and scalp healthy.

I am taking note of my symptoms because of what I read here and what I've seen at the specialist. My son is my main concern. He's only 7 and very bright and I don't want him to suffer.

So sorry you are not doing good and have so much trouble.





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