Lyme Disease treatment options are all over the place – no one can seem to stick to any standard.
This is her frustration:
I am sitting at the ER. I have had a headache since Thursday with pain behind my eyes. It feels like my skull is trying to break through my eyes and nose and ears. I wish it were sinus related. But it’s not.
The reason I’m at the ER is two-fold. I want to make sure that I don’t have spinal fluid building up in my head. The second reason is more complicated. I was hoping maybe I could switch back to being treated here by my neurologist, who is covered by insurance. My Lyme doctor isn’t. She wanted to treat me with IV antibiotics. My Lyme doc thinks that orals are the first line treatment.
You see, Lyme disease is rife with controversy. Does it exist in the numbers that the International Lyme Disease Association says? Are the current tests sensitive enough for diagnosis? Does Lyme seroconvert in the blood like other infectious diseases? Is it easily treatable? Will three weeks (and maybe six weeks) of oral doxycycline treat all forms of Lyme, even if it’s late stage, which mine is? Will four weeks of IV rocephin treat neurologic Lyme?
I have Lyme, but my diagnosis is still suspect.
When I saw my neurologist in September, part of my Lyme test was positive, the other negative. When I went back for blood work,the negative part was now positive. But the positive was negative. Confused? My neurologist wasn’t convinced that I have active Lyme disease though I am symptomatic, and my tests prove that I have been exposed to Lyme (and my first test indicated active Lyme).
So I went to Seattle. I tried Levaquin, but it can cause joint inflammation, so any sign of joint pain and they stop treatment (joint pain is common in Lyme). Then I was put on Rifampin, which I have stayed on for months. It treats a secondary infection that is thought to occur often with Lyme disease. It resolved the shooting electric pains in my arms. I was put on Amoxicillin, which I’ve been on for months as well. Then I tried Minocycline for Lyme. It caused me to walk sideways. I already was dizzy. I didn’t need to have sea-sick vertigo as well. Then I tried Biaxin. I broke out in hives. I tried Doxy. It caused heartburn that radiated to the base of my skull. But the doxy DID work. I switched to Zithromax, and all of my symptoms returned. So I’m back on Doxy and taking Nexium to combat the heartburn. The problem is I’m not getting better like I did before.
What’s next? IV drugs. Insurance will pay for one month. It often takes more. A PICC line. Daily infusion. I was hoping to get treated from someone locally. But it looks like the doctors here don’t want to touch this. When I get home, I will call my doctor in Seattle and wait. And if this doesn’t work, I am flying to the Northeast where this stuff is treated often and where it costs a lot of money to see the top docs.
I am ready to be healthy. Six months with little improvement is just not acceptable to me.