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  • Daughter's Bulls-Eye Rash Years Ago

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    Old 06-02-2005, 11:29 AM   #1
    mwmama
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    Daughter's Bulls-Eye Rash Years Ago

    I have posted the other thread about my tick bite, but wanted to post this one about my now 12 yr old daughter. Up till the past couple days I had never looked too much into Lyme's. I will tell you why. About 6 yrs ago, when she was 6, we found a tick on Chelsey's back that appeared to have been there the entire two days since I had given her a bath. When we removed it there was definite redness and irritation at the site.

    Some days later she developed a weird rash that had a distinct ring. We had just had a computer/internet for less than a year and I was still learning all the benefits of the www. So I did a brief search and found a bit of info about Lyme. I know it mentioned the bulls-eye rash. Well, we took her in to our ped but he shrugged it off, saying that it was just from the tick being there so long. He also made a comment that was THE main reason I have never worried too much about the various tick bites the children have had for the past 6 yrs. He said that if we saw the tick then it could not be Lyme's because deer ticks are the only carriers and they are practically too small to be seen by the naked eye! Like idiots, we believed him! This same daughter has serious heart congenital heart defects, another has a tumor and we have learned to not take anything any dr says as the gospel truth anymore. But at that time we were still learning.

    Anyways, from what I can gather now it appears there is no question about it. If there is the distinct bulls-eye rash it is definitely Lyme's. Or am I wrong? I know there isn't always the BE, but if so it's pretty positive, right?

    Even IF this dr thought it was nothing he should have put her on abx with a reaction like she had! So I do feel blessed that my dr yesterday put me on abx based only on a little bug-bite looking spot at the site of the tick bite and my feeling a bit ill.

    This makes me really wonder about her now. A year ago she started getting this weird pain in her hands, to where she sometimes cannot even do her homeschool work, can't pick up the lightest object. But the pain also appears in her arms, her legs. It is like the pain moves around . We've taken her to an orthopedist and he did x-rays and some lab work and called it nothing but growing pains. He actually told us that means he doesn't know what it is! He did say something about the lab tests would show if it was rheumatoid arthritis, but now with all I have read I am wondering if it could be from Lyme.

    She has suffered from migraines easily, but we have noted that began right after they implanted the amplatzer device in her heart in 2002, to patch her atrial septal defect. She also has a couple LARGE ovarian cysts and mild scoliosis, but I don't think those two are related.

    A couple other things she has that I think could be related are that she has had some episodes with dizziness, shakiness, and shortness of breath (we thought it might be her asthma) and one time in particular she acted so weird. This was a couple years ago. But she was just talking nonsense. She was dizzy. I finally called 911 because it was so creepy. Having just had that devic for under a year there were chances of a stroke and that is what I thought this was! The medics arrived and found that her bp/hr were pretty high/fast. They didn't take her in, but we ended up doing so after speaking to her cardiologist. They found nothing wrong, in fact she was back to normal by the time we got here there. But now with some things I have read about Lyme I am suspecting it could be an explanation.

    What should I do then? I am planning to bring this up when she sees our pediatrician (for f/u on the latest US of her cysts). Should he test for it? What else?

    I appreciate this forum. It is a blessing to be able to ask those who have been there!

    Dawn

     
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    Old 06-02-2005, 03:03 PM   #2
    TINUVIEL
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    Exclamation Re: Daughter's Bulls-Eye Rash Years Ago

    Hi Dawn,

    Welcome to the board!

    I'm sorry to hear your daughter is having this problem.

    Yes, you are correct. A bullseye rash, also known as an erythema migrans or EM, DOES mean Lyme.

    It is unfortunate that you encountered such ignorance in trying to obtain treatment for your daughter, but sadly that's actually pretty typical. There remains a great deal of ignorance among doctors about tick-borne diseases.

    In addition to Lyme, a tick (and by the way, there are more than one type of tick which spread disease) can spread Bartonella, Mycoplasma, 2 types of Erlichiosis, Babesosis, and Masters' disease. People who have Lyme often are also infected with one or more of these.

    The disease can remain relatively dormant for years, and then flare up when the immune system is weakened by stress, etc.

    I would highly, HIGHLY recommend a book which I found extremely helpful. It is 'Everything You Need To Know About Lyme and Other Tick-Borne Diseases' by Karen Vanderhoof-Forschner. So far that is the most useful and informative Lyme book I have come across. If you have to deal with this disease, you MUST be as informed as you possibly can.

    Your best course of action for your daughter would be to have her seen by a Lyme literate physician. There is an excellent Lyme literate pediatrician but I can't recall his name at the moment, but he is the foremost pediatric Lyme specialist in the world. When Ticker or one of the other board members comes along they will know. Many of us have to go out of state to get proper care.

    Good luck!

     
    Old 06-02-2005, 05:06 PM   #3
    ncgirl88
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    Re: Daughter's Bulls-Eye Rash Years Ago

    Hi Dawn -

    I, too, am sorry for what your daughter is going through. The fact she is having rapidly migrating pain points strongly to lyme...I may be wrong but believe that it is the only kind of joint pain that migrates quickly from one site to another.

    The bull's eye rash is a DEFINITE indicator of lyme...if she had it there is no question.

    The dizziness and shortness of breath sounds a lot like babesiosis (a malaria like parasitic infection of the red blood cells). I had the same shortness of breath that was not affected in the least by albuterol when they made me inhale it at the ER. I had this off and on for two years until it became a constant in my life before treatment. It must be treated with an antimalarial like Mepron with Zithromax. Only an LLMD will really understand how to treat it and the nature of it.

    I would get your daughter up to Dr. Charles Jones in New Haven, CT (he is the only pediatric LLMD in the world) if you can afford it and if you can't beg, borrow and do what ever you need to do. Don't let this go on any longer and don't trust the conventional labs in regards to tick borne illness - I had a negative test through John's Hopkins then went through IgeneX and was tested for all the same infections...My lyme Western Blot Blood test was extremely positive for Lyme IgM and IgG antibodies...Ehrlichia hme and hge and Babesia...I was extremely ill but all the 15 doctors I had seen said it was all in my head...

    Take care and keep us posted. Send my best to your daughter...

    NCgirl88

    Last edited by ncgirl88; 06-02-2005 at 05:07 PM.

     
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