Tuesday, September 19, 2017

We Have Hope Once More -Kiana's Lyme Disease Journey

Yesterday Dean and I took Kiana to a new Lyme doctor. A special thanks to everyone who prayed for us, God graciously answered those prayers! A few weeks ago, Kiana's previous LLMD told me there isn't anything more he can do for her as he isn't comfortable placing another PICC line since she developed a clot so quickly after her previous line was placed. The best he could do was to double her antibiotic and see her in a month. That didn't sit well with us, so we began looking for another doctor. How many times have we looked for doctors and therapist's over the years? Sometimes I wish I would have kept track, although it is probably good I didn't. 

Anyway, we had high hopes for one doctor but he failed to come through for us. Last week was particularly bad for Kiana and we realized we need to find a doctor now. Through much prayer, frantic research and phone calls, we found a doctor who, after hearing our story, agreed to stay after hours to see Kiana. Before contacting this doctor I had sent an email to ILADS asking for recommendations. I received a return email Monday morning and the new doctors name was included in their list. That felt like a direct confirmation from God that we were choosing the right path.

The problem many Lyme patients face is that the CDC claims that  Lyme disease can be treated with a round of antibiotic and that long term Lyme is very rare. We were told by a leading hospital that if the symptoms last longer than 4 weeks then it is a psychiatric problem versus a medical problem as the antibiotic will have eradicated the Lyme. This means that doctors who treat patients outside of the CDC's recommended treatment protocol, place themselves at risk, especially if the patient develops complications like Kiana did. As a result many Lyme doctors who use both medical and alternative treatment are not affiliated with any insurance companies, as that is often who will report the doctor. It is a complicated mess, one that often leaves Lyme patients hanging in limbo.

In light of all this, plus knowing Kiana needed help quickly, there was a lot hanging on this appointment. I was afraid the doctor wouldn't listen to our concerns, afraid she might brush us off or worse yet suggest Kiana needs psychiatric care. LymeMD explains why psychiatric drugs are typically not a good fit for a patient with neuro Lyme. However my biggest issue with these meds is the fact that I have been trying to wean off one for nearly three years now and have horrendous withdrawal. I refuse to put my child through that unless absolutely necessary. You can read about that here.

I have taken our children to countless appointments alone, several of them were even out of state. But for some reason this appointment intimidated me. I was so glad when Dean said he can take off work and go with me. Turns out it was good he did. He was able to remember many details of Kiana's illness which I had forgotten. The doctor checked Kiana very thoroughly and explained what she was looking for as well as what she found. She gave a list of lab work to get completed, along with supplements to add to Kiana's daily regimen, explained what our options might be as far as treatment depending on what the lab work shows and answered our many questions. 1.5 hours later we were ready to leave and for the first time in a long time we felt hope. Hope, my friends, is a wonderful thing, especially when it has been missing!

Kiana has another appointment next week at which time the lab results should be in and the records we need will have been faxed to the correct places - at least that is what we are hoping happens! Please continue to keep Kiana in your prayers, she was listening in to the possible treatment plans and was not impressed!

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