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  • My 3-year old daughter has Lyme Disease

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    Old 10-14-2004, 11:30 AM   #1
    toni_in_calif
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    Unhappy My 3-year old daughter has Lyme Disease

    I apologize ahead of time...this is LONG......

    I've been reading this board for a while now and have been waiting to post until I'd learned a bit more about Lyme Disease, but there is so much conflicting information all over the internet, and the doctors around here know so little about it, that I realize now is as good a time as any. Actually, the sooner the better, really, since time is of the essence.

    My name is Toni and I live in Northern California (SF Bay Area) with my husband, son, and daughter. Earlier this summer, July 23rd to be exact, I extracted a nymph deer tick from my 3-year old daughter's neck (it had been attached for at least 72 hours and 'exploded' upon extraction). I called the hospital and the advice nurse told me not to worry, but to watch her for possible flu-like symptoms or developing rash before calling them back to book an appointment with her pediatrician. Well, 27 days later she developed a bulls's eye rash at the site of the tick bite. I called the hospital immediately and got an appt with her doctor that same day. After her doctor listened to our story and saw her rash, my daughter was clinically diagnosed with Lyme Disease in spite of a negative ELISA test. ~can you hear my heart screaming?~ She was put on 500mg of Amoxicillin per day for 21 days. That is the standard RX protocol for Lyme Disease here per our HMO.

    It was a nightmare getting her through those 21 days (actually 22 days since, due to vomiting, I could not admister the medication w/o her upheaving it on the 14th day, so the doctor extended treatment by 1 day) - vomiting, diarrhea, constant stuffy nose, lethargic, etc.. After she finished the amoxicillin she had no more symptoms and was doing fine, but only 6 days went by before she developed another bull's eye rash at the site of the tick bite.

    Although I called the hospital immediately, it took them 18 days before she was seen to and given an RX of Cefuroxime (Ceftin 400mg per day). The 2nd ELISA test came back negative once again and although the doctor ordered the lab to perform a Western Blot at my urging, the HMO refused her order because they will only perform a Western Blot if the ELISA comes back positive. Today is the 12th day of another 21 day round of antibiotics and she seems to be doing fine so far. No reactions to the medication at all (i.e., no herx?). I don't know if this is a good sign or a bad sign? The rash has almost disappeared again, but I can still see a hint of it especially when she's been physically active.

    I'm now intent on securing my daughter's future medical treatment if - please, NO! - the Lyme Disease reoccurs and we run up against a string of incompetent doctors as, very unfortunately to put it mildly, many of you have. I've seen mention of the IGeneX Lab on the web and have visited their website many times and was hoping that we could have her tested via Western Blots IgG and IgM which would provide us with scientific proof along with her clinical diagnosis to assure that her Lyme Disease will never be dismissed by under-educated/reluctant-to-treat doctors. We're very fortunate in that IGeneX is located only 45 mins away from us. However, after speaking with my daughter's doctor last night, she said that she had found a way to have a Western Blot performed by our HMO, but she feels that it is not really necessary since we already know that she has Lyme Disease. She mentioned nothing about tests for co-infections or the like. I'm not sure she even knows that co-infections are common in Lyme Disease cases.

    In the meantime, I found the name of a Lyme Disease specialist in the area (Dr. Rafael Strickland), but his panel is full and he is not taking on any more patients. I called anyway...begging for help...as I'm in a pretty pathetic state right now worrying about what the future holds for my little girl. I was referred to Dr. Christine Greene who is supposedly also a Lyme Disease specialist and is somehow (I don't know how) associated with Dr. Stricker. Has anyone here heard of Dr. Greene? Good or bad?

    So, we have an appt with Dr. Greene on Tuesday for a second opinion. I have photos of both of the rashes my daughter had (1st one and recurring one) to show her and a log from time of tick bite to the present listing symptoms, etc., that I've observed in my daughter. I feel optimistic about the appt and hope that Dr. Greene is a good doctor, but how am I to know?

    However, at the same time, I'm feeling very nervous about having lost so much precious time with our HMOs policies. It's now been over 12 weeks since the tick embedded itself & then was extracted. The initial treatment of 21 days of Amoxicillin failed (recurring rash means treatment failed, correct?) and now we're on to a 2nd round of antibiotic treatment - Ceftin this time as I wrote above - to be administered for 21 days. But from what I've read on this board, 21 days is not enough, am I correct in my understanding of this?

    I'm seriously worrying that we've lost our best chance at beating this disease and have lost that golden window of opportunity to nip it in the bud. Are my worries unfounded? Am I overreacting? Or am I justified in feeling the way I do? Although my daughter's doctor is being as aggressive as she knows how to be with my daughter's Lyme Disease, I'm afraid that it hasn't been enough and that our only chance at catching it early has run out.

    I'm apologize if this post is confusing and seems a bit jumbled. My head is all mixed-up and jumbled too, so there is no other way for me to write other than to just spit it out as best I can.

    Thanks for reading and thank you in advance to anyone who can offer support, advice, or whatever. Anything would be so very, very welcome!

    My very best wishes to those of you that are suffering from Lyme Disease. Your stories have brought me to tears and my heart goes out to each and every one of you. {{hugs}}

    Toni

     
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    Old 10-14-2004, 12:14 PM   #2
    ncgirl88
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    Re: My 3-year old daughter has Lyme Disease

    Hi Toni -

    I am so sorry your little girl is so sick and that you are having to deal with all this. I dream of the day when one of us presents ourself to our doctor like all of us have and the first doctor we see has the tools necessary to diagnose us accurately and treat us immediately with a sure fire method...until that day we have to fight our way through it, which I finally have done. It only took 15 or more doctors (i have lost count) and a lot of time.

    I can't believe your doctor's are not taking this more seriously in that your daughter has the rash.

    I was tested three times by traditional labs...one was a Western Blot...it still wasn't picked up. After being accutely sick for almost 6 months and possibly sick even longer after seeing my IgG levels only Igenex picked up the Lyme and the Babesiosis.

    My recommendation is to call your insurance company and plead. If they won't cover Igenex than take out a loan...or find a doctor that will just treat it since there is no question with the rash and the fact you pulled the tick off at that site that she has it. As Ticker always reminds us on this site though...there are a number of coinfections that go along with this and they need to be properly diagnosed and treated.

    I should have been resting today...my first full day of a solid diagnosis but I just can't stop. I have visited two doctors office and made numerous calls getting the word out. I am going to educate as many doctors and people as I can.

    I feel it is my duty now. I pulled up behind the same jeep in traffic today that I had pulled up in back of a couple weeks ago. He has a bumper sticker on the back referring to the healthcare crisis that Lyme is. Last week when I saw the bumper sticker it caused me to take pause since I was certain at that point it was my thyroid, this week as I saw the same jeep with the bumper sticker I smiled knowing with certainty that it is Lyme and Babeisiosis I am dealing with and that it is one of my goals to educate. I had no idea how debilitating and chronic Lyme could be let alone the presence of coinfections a few months ago.

    What a journey. Anyway, Toni - fight for your little girl - fight like you never have before...don't take "no" for an answer. Find the right doctor...it sounds like you have and push for Igenex. I wish her well days ahead.

    Take care,
    ncgirl88

     
    Old 10-14-2004, 07:37 PM   #3
    jennsen
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    Re: My 3-year old daughter has Lyme Disease

    Hi Toni,

    I am a patient of Dr. Green and also live in the Bay Area. I was seeing another Dr. previously who suspected Lyme and ran my tests at the Igenix Lab. They came back positive for Lyme and Bebesia (a coinfection). While my Dr. was going over the positive results with me, he mentioned they had a new Dr. moving into their offices that specializes in Lyme desease and it's Dr. Green. So that's how I came upon her and I consider it a blessing. I think she is very knowledgeable and experienced with Lyme and all the other infections that can come with it. I find her to be very thorough. She is aggresive in her approach with me.

    It's great that you are taking your daughter to see her. I think your daughter will be in good hands.

    My best to you and your daughter,
    Jennsen

     
    Old 10-15-2004, 05:55 AM   #4
    laurie864bla
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    Re: My 3-year old daughter has Lyme Disease

    Hi Toni,
    Just wanted to say that I also am a mom of a child who got very sick at the age of five. However, he got sick in December, very cold for us in MD, with no rash so docs did not suspect Lyme at first. They did the tests in a few days of his hospitalization due to severe pain with fever and rashes, but they came back negative. We then went on a rollercoaster for the next 2 and 1/2 yrs with docs. I SO understand your anxiety and passion to help your child get proper treatment. Click on my name and read "all previous posts by this user" and you can see our story in more detail. I am glad you are seeing a specialist that is considered good. We hit dead ends with so many of "the best" that it was very confusing and I felt that I was always doubting myself. I am her if you ever need to talk or just vent. I cannot tell you how many nights I sat at my computer crying, trying to get some anwers. Sometimes it just helps to have someone else in the same boat to bounce ideas off of. Our children our not identical cases, and I believe my son was Dx and put on meds much later than your daughter--so your daughter has a good chance of not having life long problems with Lyme with prompt, proper treatment. My biggest advise--Do not let them make you think you are neurotic, depressed, or crazy!!! You are allowed to advocate for your daughter without being ANY of these things. My docs threw antidepressants and Klonopin at me like candy and I ended up having to detox off of it--NOT fun! Crying and anxiety when your child has a misunderstood illness that could affect their quality of life is normal. Do not let anyone make you think it is not. Insist on proper treatment, coinfection testing, and educate yourself with good information from people and docs who really understand this disease. And come here--the people here know a lot, and some have great info on docs that are Lyme literate. I wish you great luck and am confident your daughter will be ok because you are doing what I did for my son. Not giving in and insisting and researching. If I didn't do that, I am certain my son would be devistated by this illness as he had been in the past. It had gotten really bad--like I said, read my posts to learn more about what we went thru. Hugs to you as well--from another mother. Boy do I know how you feel. It is still so fresh in my mind that my heart is pounding now and have tears in my eyes for you. Hang in there!! It will get better. ---Laurie

     
    Old 10-15-2004, 06:26 AM   #5
    ticker
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    Re: My 3-year old daughter has Lyme Disease

    Hi toni, welcome to the board!

    I am sorry your daughter has Lyme but it is good she is getting treatment. Just for future reference, if you save the tick it can be tested for disease at IgeneX Lab in Palo Alto, CA. No Lyme test is completely reliable and from what I understand, the ELISA is the least reliable.

    Her getting the rash again does not mean treatment failure. Rashes can reoccur during treatment. Three weeks of treatment is never long enough for Lyme. An infection caught within two weeks of the bite (which is pretty rare) needs a miniumum treatment of six weeks of the right dose antibiotic. Lyme needs stronger treatment than many infections. If symptoms are still present after this time or if the infection has been longer, further treatment is warranted.

    I have heard only good things about Dr. Green. I believe you will be in good hands. It is very important to see a knowledgeable doctor because many doctors follow outdated treatment protocols. If you would like another recommendation, there is an excellent Lyme pediatrician in New Haven, CT. His name is Dr. Charles Ray Jones. He sees patients from all over and has helped many children. He may be able to consult with your daughter's doctor if needed.

    You are not overreacting and you are doing eveything you can to help your daughter. It is important that she receives proper treatment. I am sure you will feel much better after seeing the Lyme doctor. Please let us know how her appointment goes okay?

    Hang in there. You are a wonderful mom.

    Last edited by ticker; 10-15-2004 at 06:26 AM.

     
    Old 10-15-2004, 10:49 AM   #6
    Komondor
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    Re: My 3-year old daughter has Lyme Disease

    Hi Toni,
    Glad you found the board but sorry you had to. You are not over reacting at all. You are doing what I wish all parents would do. Educating yourself! I am so glad you have the photos and always keep them.

    I have heard good things about Dr. Greene too and think your precious daughter will be in good hands. Your daughters infection is still early so her outcome looks very good. You are ahead of the game because you researched this. She will be ok.

    Please let us know how your appointment goes. Prayers to you all.

     
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