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Hi Jorgen,
I am a new member of this board and have very little experience with Lyme. My 14-year-old daughter has many of the symptoms you described: fatigue, rapid heart beat, problems with temperature regulation, and many visual disturbances. Last spring, she had a negative Lyme PCR test from the Mayo Clinic (one of the leading medical centers in the US -- although, not apparently, for Lyme testing). When she began developing auditory problems, tinnitis and hypersensitivity to sound, I convinced my doctor to retest her and send it to Igenex. He agreed, but only on condition that it also go to Mayo Clinic. We sent a Western Blot to Mayo and Igenex and did a Lyme Dot Assay on her urine at Igenex. She also was pretreated with 3 antibiotics for five days before her blood was drawn and while we were collecting three urine samples. The Mayo Western Blot came back negative, but the Igenex WB IgM was positive as was the LDA. I know Lyme is a clinical diagnosis (not a laboratory one), but I was having trouble moving forward with treatment of Lyme, without some laboratory indication.

So, in a matter of two days, we've moved from diagnosis to treatment questions and my head is swimming. Her internist, who has been treating her for POTS, Chronic Fatigue, and Fibromyalgia, but I don't think has treated anyone for Lyme, wants to start her on 6 weeks of IV abx. I know I need to find a LLMD, but I suspect I will have a several month wait to get her into one. My initial quandry is whether to go ahead and have my internist get treatment started, in consultation with a LLMD, while we wait to see one. Any opinions would be welcome.

Lesley
[QUOTE=Lesley1954]Hi Jorgen,
I am a new member of this board and have very little experience with Lyme. My 14-year-old daughter has many of the symptoms you described: fatigue, rapid heart beat, problems with temperature regulation, and many visual disturbances. Last spring, she had a negative Lyme PCR test from the Mayo Clinic (one of the leading medical centers in the US -- although, not apparently, for Lyme testing). When she began developing auditory problems, tinnitis and hypersensitivity to sound, I convinced my doctor to retest her and send it to Igenex. He agreed, but only on condition that it also go to Mayo Clinic. We sent a Western Blot to Mayo and Igenex and did a Lyme Dot Assay on her urine at Igenex. She also was pretreated with 3 antibiotics for five days before her blood was drawn and while we were collecting three urine samples. The Mayo Western Blot came back negative, but the Igenex WB IgM was positive as was the LDA. I know Lyme is a clinical diagnosis (not a laboratory one), but I was having trouble moving forward with treatment of Lyme, without some laboratory indication.

So, in a matter of two days, we've moved from diagnosis to treatment questions and my head is swimming. Her internist, who has been treating her for POTS, Chronic Fatigue, and Fibromyalgia, but I don't think has treated anyone for Lyme, wants to start her on 6 weeks of IV abx. I know I need to find a LLMD, but I suspect I will have a several month wait to get her into one. My initial quandry is whether to go ahead and have my internist get treatment started, in consultation with a LLMD, while we wait to see one. Any opinions would be welcome.

Lesley[/QUOTE]


From my point of view, it seems quite obvious that you should start treatment as soon as possible. I have NO lab indications of Borrelia, but a lot of longlasting symptoms which fit into a Lyme dx. I went to the local hospital and asked for iv treatment. Not surprisingly - I was turned down after a quite noisy discussion. Anyway, I am now on a four week iv treatment, and will continue with doxycycline for at least on month after. My opinion is that the negative consequences of NOT treating Lyme , by far outweighs the potentially risk of wrong treatment.





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