migraines, Lyme, etc.

Hello, my name is Emily. My hands are shaking right now. I was diagnosed with Lyme about 2 months ago and have been on antibiotics for the last month and a half.

Cefdinir - 300 mg - twice a day
Azithromycin - 500 mg - once a day, five days a week
Acyclovir - 800 mg - twice a day
Levothyroxine - 75 mg - once a day

Here's my story - about eight months ago I started experiencing really severe symptoms. I had a horrible case of the flu and after that began experiencing dizziness, fainting, fatigue, pain in my head and neck, migraines behind my eye, muscle spasms, joint pain, blurry vision, and tremors. I went to many doctors, had MRIs and CAT scans, and the only thing that they found wrong with me was that I had hypothyroidism. They put me on levothyroxine, and while the fatigue improved slightly the other problems got worse. I began to get more ill - brain fog, cognitive dysfunction, air hunger, palpitations, alternating feelings of hot and cold. I even traveled to China, and I don't even remember much of the trip. When I got back to the states, a friend told me I might have Lyme disease. I went to my general MD who did the standard CDC test and told me I was negative. I then went to a Lyme doctor and she diagnosed me with Lyme and did the Igenix tests and co-infections and found that I had Lyme and possibly babesia and bartonella (tests are not clear, but symptoms are). She also found I was positive for Mycoplasma, HH6, and EBV.

She put me on a round of acyclovir for about a month, the next visit she put me on cefdinir. What an improvement. While I herxed quite a bit for a the first couple of weeks, after that I began to feel much better. My dizziness and pain in the back of my head were gone. My pain was reduced. My fatigue was almost gone. However, taking the antibiotics regularly was and still is a problem for me, as they are oral and I have digestive issues. I take a good quality probiotic, but this does not prevent all the problems. My doctor told me if I was herxing to discontinue or reduce the dosage for a little while until the symptoms improve. So I've been doing that, and haven't been able to take the full doses of everything that I am supposed to. I also do other things - epsom salt baths and FAR sauna therapy - for the herxing and it helps a lot.

Now I feel that I am regressing. I was doing really well, but my blurry vision, fatigue, migraines, and brain fog are all coming back. I am seeing her on Tuesday, but I am very worried. Are the antibiotics not working any more, and if so will she switch them? I don't want to go back to the way I was feeling before. I don't know if I have a choice in the matter. I am scared of what's going to happen to me, I feel sometimes as if I am going to die. I try to tell myself that I am going to be ok, that it's not something I will die from but suffer from. It's very hard. I live alone, my family has offered to let me stay with them for awhile, but they don't believe I have Lyme and that is not helpful for me.

Sorry to sound so sappy - I just hate having to go through this alone.

Hi Emily,

I too go through the "cycle" you wrote about, my symptoms come and go, and yes, it makes me feel defeated also. Like healing98 I think it probably has something to do with the lifecycle of the bacterias we have. I call it the "roller coaster" and I try my hardest to deal with it. I am a lot more active when I am good and I have learned to come in for a landing and rest when I am having a tougher time. I can empathize with your fears, I have had them too. But I truly believe the quality of our lives can be enhanced by trying new things and finding what works best for each of us.

You will probably be feeling better soon, I'm thinking good thoughts for you.

Tammy