Doxycycline Round 2, 1 1/2 months into treatment
I talk to my friend Heather S. in New Jersey. She was a friend I knew years ago in TV production and she helped me figure out, at the time, that I was having candida/yeast problems. She has always been someone who just sort of shows up when I need help. We reconnected this summer when I moved home and she was suffering from undiagnosed fatigue and pain. She tells me she has been diagnosed with lyme. She had tests previously and they were negative, but the doctor she found sent her tests to Igenex. She has been in an enormous amount of pain and the fatigue has completely debilitated her. After 7 months of many doctors and misdiagnoses, here she is also with lyme disease. I am thrilled for her that she has a diagnosis, but know the road she is going to have to walk down. She is also now on doxycycline and I am checking in with her to see how she is feeling. She is always so good about comparing notes with me and giving me advice about what the doctors say. She already has some info for me regarding supplements. It is going to be interesting to see her journey alongside of mine.
I struggle with taking naps. I know that they are good for me and Los Angeles Heather and I figure out that when I take them I tend to sleep better at night. But I am in a constant state of guilt, still, that I should be doing SOMETHING. I'm sick enough that I can't work out of the house, but I am no longer so sick that I can't get off the couch every day. I'm sort of in this healing limbo. My Mom goes off to work each morning and says to me, "what are you doing today?" Even though I know she's just curious, I am defensive and feel like I should have a list of projects I'm going to tackle. Heather suggests that I think of naps as "preventive medicine" and that each time I take one it is getting me closer to recovery. i like that idea.
I am 1 month and 2 weeks into this 2nd round of doxy. I definitely feel different. I am doing gentle yoga every other day now, and I am having a night or two in which I sleep all night. I have 2 weeks left of this round and then I will have to see what happens in February. It is obvious to me that doxy makes me better, and I wonder how I am going to remain healthy after I go off of it again? I also intuitively feel like my immune system is shot, and I am going to have to do some research as to what I need to do to get it to a stronger place.
I make an appointment at the Jefferson Hospital Headache Clinic in Philly. I can't take these headaches that put me down for days every month. It's time to be as pro-active as possible and get all of this under control. I refuse to spend most of 2010 in bed. That was 2009! They tell me the first appointment takes 3 hours and there is a psychological evaluation. They can't take me until the end of March.
I see Dr. Saviour, again, and he takes more blood to check my white blood count. He tells me that my insurance has called him and is checking into my records. So basically I am on disability, which just about covers my expenses, paying $600/month for my health insurance with Cobra, but still paying co-payments, lab fees, etc., and now my insurance company is checking my records!? You gotta be kidding me.
Saturday, January 23, 2010
Thursday, January 7, 2010
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.
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.
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