Doxycycline, Round 2, 1 Month Into Treatment - January 7, 2010

I see Dr. Saviour and this time my Mom goes with me. It is so fantastic that she goes with me b/c she hears firsthand from him what I am up against. We discuss the lupus connection again, (he doesn't feel that is what I have now), what lyme does to people, and the difference b/t oral antibiotics versus iv antibiotics. Dr. Saviour explains that with the iv antibiotics they are more potent because they don't have to go through the stomach, like the oral antibiotics, which I am taking. Also, they don't make someone nauseous because of that. I am really struggling with the nausea again. It is overpowering sometimes. One thing that has come up is that my white blood cell count is very low and he is concerned about this. Blood is taken so he can gauge the white blood cell count again. When I call him, he tells me it was at a 2.7, and is now at a 2.9. Still low, but at least it hasn't gone down.

I experience a horrific headache about 2 weeks into the doxy. I am ovulating so it doesn't surprise me. This headache puts me on the couch for almost 2 days. I can't get out from under it. My Mom has to call Dr. Saviour and ask him to recommend something to help. This is the same headache that finally crushed me last year in April and drove me to the hospital. He calls in a script for a muscle relaxer and that, combined with Fioricet, FINALLY releases me from the pain. I barely sleep the 2 nights I have the headache, which makes the other symptoms (muscle aches, nausea, twitches, brain fog) more pronounced. When the pain comes back like this, I remember why I was so depressed last year. It is so debilitating I can't even watch TV. This headache has me in a chair with the heating pad on my head, tears just running out of my eyes.

It is one month into treatment now and I have 3 days of feeling like myself. I have so much energy I have to actually hold myself back from doing too much so I don't overextend myself. I do more in 1 day than I had sometimes been able to do previously in a week. And I am still not exhausted. It feels so good. The nausea is at a minimum. Like the last round of antibiotics, my body has adjusted and the medicine doesn't make me sick when I take it any more. When I look in the mirror, I see myself as I was before, so many months ago before I got so sick. There is hope in my heart again for living. I don't think I ever understood the power of hope like this before. That is why too it is so hard when the pain/sickness takes over again and I disappear behind it. I think the ebb and flow right now is even harder than just being straight out sick. To have hope and have it taken away, to have hope and have it taken away...

KG, now my boyfriend, gets his lyme test results back and as I suspected they are negative. I will be diligent with him in terms of being hypersensitive to any strange symptoms that emerge. I pray that they won't, ever. He continues to be incredibly supportive and understanding about this sometimes elusive disease. He asks if I've taken my medicine (sometimes I forget because I have to wait 1 to 2 hours after I eat to do so), is concerned when I am nauseated, puts no pressure on me to do anything beyond my limited stamina, and is completely on board with me.

It's interesting to see what sharing my story has brought into my life. Because people know I have lyme disease they almost always tell me of someone they know who has it, and want to share that person's story with me. Other friends have felt comfortable sharing their own stories of ill health or hard times. There is definitely light in all of this, I feel privileged really that people will share these things with me.

I see Dr. Saviour at the end of the 30 days of doxycycline. He takes blood again to check my white blood cell count. His theory is that since I am feeling good again, the white blood cell count will have gone up. He is very happy to see me feeling so well. He says however that the trick now will be to see how to keep me well when I am off of the antibiotics. I am given another 30 days of doxycycline, so I will be finished around the beginning of February. I am not looking forward to February if I am going to get sick again. If I do, I think we are going to have to discuss more aggressive treatment. I can't keep going through this. I want my life back.