Thursday, December 17, 2009

Doxycycline Round 2 - December, 2009

I am on doxycycline for a week and already my headache and backache are gone. Today is Day 3 of my period and I have NO SYMPTOMS, other than the lovely yeast infection that has descended upon me b/c of the antibiotics. I have experienced them before, but nothing could have prepared me for the special agony of this. However, I am so grateful again that I have no muscle inflammation, no vomiting, no fever, no pain, and I can get out of bed! My sleep patterns are still interrupted, but it took 2 weeks last time on the doxy to regulate. I am now also completely off all other medicine. I stopped taking Zoloft about 2 weeks ago, and have found that the depression has not started to creep back in. That is a huge relief. I am beyond happy to only be on one medicine now. Some days I think I might actually get better, and fantasize about being back at the gym working out!

When I was living in Los Angeles, and particularly towards the end before I left and was getting more and more sick, I constantly felt like a salmon swimming upstream. The smallest effort seemed enormous. Maybe it was the obnoxious traffic, the relentless sun, the air reeking of desperation, the need to be in a constant state of pursuit of something completely ambiguous. All of that contributed to me pushing harder and harder, ignoring how sick I was getting. And for what? I read a Buddhist proverb on the side of my green tea box, "If we are facing in the right direction, all we have to do is keep walking." When I am willing to give over to the idea that this is where I am supposed to be right now, and allow myself to just be sick and deal with healing, everything suddenly seems easier. It is such a relief to just go with the current. And yet, I still think about acting and how much I miss it. It is hard to hear about my friends and their continuing pursuit of their creative lives. I don't know what the future holds for me in that capacity right now.

KG gets tested in 2 days, which will be 3 weeks since he was bitten. I am anxious and upset about this. I don't even know what test they are doing on him, and I know it is going to go to Quest. I know it will most likely come back negative, and then what?

Friday, December 11, 2009

Back down the rabbit hole - December, 2009

I go see Dr. Saviour. He talks to me about lupus again b/c I have asked if my symptoms could be an immune response to everything. My ANA levels were 1:640 the last time they were checked. However in April, when I was the most sick, they were 1:2650. So although they were still elevated last time, they were certainly lower than in April. Dr. Saviour takes blood to check my ANA levels again. I have read that ANA levels can also be elevated with lyme disease. i also read on-line the following, "If on the other hand, the ANA comes back positive, that IS NOT proof of lupus. The positive ANA is only an indicator, it is not diagnostic: many women have positive ANA and not Lupus)." It is frustrating and upsetting to be worried again that lupus could still be in the mix. I was on medicine for lupus for months and had no improvement all summer. It wasn't until I was put on the antibiotic doxycycline that I saw major improvements in only 2 weeks!

KG goes to see his doctor about his tick bite. His doctor tells him "he'll be fine, and not to worry about it." I am still amazed this is the reaction people get. I had told KG this would most likely happen. B/c we have talked about it, he insists the doctor at least give him a script to get tested. He will go do that in a few days. I am staying on top of him to do this and to be hypersensitive to ANY weird symptoms that pop up. He has read this blog now (and God Bless him he hasn't gone running and screaming away from me), and so he is clued into what lyme disease can do to him if he isn't diligent.

I am back on doxycycline. It's been 3 days. I am not looking forward to the nausea and inability to eat. However, I am interested to see if the symptoms that have crept back in will be pushed away again and how long it will take! I will take nausea over this headache any day!

Wednesday, December 2, 2009

Lyme - Beginning of December, 2009

I go to see a compounding pharmacist with my sister. She is there b/c she needs natural hormones. She tells him that I have lyme disease and he is knowledgeable and helpful. I tell him my symptoms seemed to flare around my period and that the docs told me they hadn't heard of that. He says, "oh, yes, that's called menstrual magnification. Your immune system is already compromised when you have your period and so then add to that your lyme symptoms and it would make sense that you would have a flare at that time." Ah ha! I KNEW this was happening to me. He gives me the name of a doctor who not only treats lyme but is well versed in natural supplements and helping the healing process beyond antibiotics.

My back continues to hurt every day. My muscles are twitching and feel toxic again. My sleep patterns are interrupted again. For the last 2 days I have felt sick like I did before, where I am nauseous and wonder if I ate something bad. Now I know I didn't, and that the lyme is making me feel like this. I think the headaches are the hardest thing to deal with. They are crushing and I can't think or even watch television. All I can do is take a hot bath and put a heating pad on it in the hopes that it will numb the all encompassing pain. It has already been 5 weeks since I last took doxycycline and clearly I am not reacting well to being off of it.

In the window of wellness I started dating again. I meet a great guy, KG. On our 5th date we go on a picnic and a walk in the woods. During our walk, I finally tell him I have lyme disease. I have been afraid to mention it, b/c other guys I have told have disappeared from my life. But he is supportive and concerned. The next night he calls me and tells me he has found a tick at the top of his right thigh. It is embedded and he has a hard time getting it out. I see the bite the next day and it is swollen and there is a ring around it. I am completely freaked out and cannot believe this is happening. I have been through so much and I do not want to see him brought down by this. He is 6'2" and very strong, but doesn't know what I know about what a tiny tick can do to someone. I tell him he needs to see a doctor immediately and that he must promise me he will go get checked out and insist that he be put on antibiotics for 2 weeks. I give him a lyme bracelet to wear and he puts it on and hasn't taken it off. Considering he has just been bitten, the irony of this does not escape me.

Days later I go to see my insurance agent to transfer my car insurance from CA to PA. He tells me his sister-in-law has lyme disease. Another agent in the office tells me he found a tick on himself 2 weeks ago, and that he saved it. He brings it to me in a plastic container. It is an adult deer tick. He has a bite on his chest. He has called his doctor who has told him "not to worry about it," although he has been given a script to go to Quest and get tests. He asks me what he should do. He has read some of this blog b/c he had spoken to my father previously who had directed him to it. So he understands the ramifications of what lyme disease can do to him if he doesn't make sure he is ok. I tell him he must go see his doctor and insist he get tested and be put on antibiotics. I also tell him that he be absolutely diligent about watching for signs and symptoms. I also tell him to get on-line and educate himself as much as possible about lyme disease.

I go to a lyme hearing in Worcester, PA. I meet more people with lyme disease and hear more stories. I hear testimony and statistics about the prevalence of lyme disease in Pennsylvania. The hearing is to show the state representatives how important the lyme issue is and that they must support and fund the legislation that is moving through the house now. It is incredibly informative and emotional for me to see this disease literally being fought for at the grass roots level. I am so impressed with those testifying and sharing their battles. I hope we have been heard.

I want to start a web-site or facebook page for teens with lyme. They are suffering enormously.  They need a place to share their stories and to connect with one another. I want to begin circulating the idea of "marketing" lyme disease. Not enough people know about it and it seems like more funding will come when it is in the public's consciousness. I realize that I knew more about breast cancer and AIDS b/c of their campaigns then I did about lyme disease. They are both now in our consciousness and lyme disease needs to find it's voice at that level.