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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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