Showing posts with label white blood cell count. Show all posts
Showing posts with label white blood cell count. Show all posts

Wednesday, April 7, 2010

Spring - Wellness Center Visit



The flowers and trees are bursting open. It's been a long time since I've seen Spring like this. Los Angeles has color, but it's different from the East Coast Spring I was used to growing up. All of this color and abundance reminds me that life will go on.

I go to the Wellness Center near me with some real trepidation. The night before my appointment I looked the doctor up on-line and found a bunch of negative reviews. I was torn as to whether or not I should even go to the appointment the next day. My mom says, "let's make our own decisions and form our own opinions." So we go, and I am glad we do. Dr. B. spends 2 hours with us and he is the most informed doc I have met with thus far. He has read over my history and through all of my lab tests, he explains things to me on my lab work that no one else has, (he tells me my thryoid is slightly elevated, but no one had mentioned this to me at all) and he decides to do 2 tests that I wish I had done a year ago; the C6 peptide test as well as the PCR test. He says he is going to send these to MDL in New Jersey. MDL is known for more sensitive criteria with the lyme testing (like Igenex which is on the West Coast). Dr. B. explains to me in detail also what this "sensitive testing" even means. I wish that Dr. Savior had done these tests in August of last year. Dr. B. explains to me also that even with these tests/more sensitive criteria my results could still be negative. He also looks at my ANA counts and asks about lupus. I explain that I was treated for lupus for about 6 months with no real improvement. It was only when I went on the antibiotic doxycyline that I felt real positive changes. He looks at my white blood cell count, which was a 2.2 on my last Dr. Saviour test, and says he, too, won't treat me further until a hematologist looks at that. He also says that if he treats me and puts me on iv antibiotics, he won't put me on Rocephin (kind of the standard for iv antibiotic treatment), knowing that I am susceptible to a low white blood cell count. Dr. Savior had also decided the same thing. If I go back to him, he says he won't put me on doxycycline again, but most likely Cipro.

KG and I go to see Dr. K., a hematologist. He takes blood and gives me the results immediately. My white blood cell count is now at a 4.4, and all of my other cell counts look normal. He feels that my fluctuating white blood cell count is due to the heavy doses of antibiotics. He gives me a clean bill of health (blood cell count wise), and says he also recommends I do not go back on doxycycline again. KG is in the appointment with me, and he now knows more about my physical health than any other man I've been with. The things he has heard and dealt with in the few short months we've been together makes it feel like we've been together longer (like in dog years). I tell him how much I appreciate his patience and support, but he shrugs it off, saying, "you'd do the same for me." It is interesting to me how illness has allowed me to do something I never seemed to be able to master before in relationships; to be myself. I don't have the energy to put up any kind of facade, or to pretend to be someone I am not to make a relationship work. It is a revelation.

The tests results will come back at the Wellness Center in about a week, so I will know more then. There is part of me that is praying I will have a positive test result so I can stop questioning what is wrong with me and get on with aggressive treatment and be done with it. And if the test is negative? I don't know yet.

Thursday, March 25, 2010

Birthday

I go to the headache center in Philadephia. KG is with me. The appointment takes 3 hours and the waiting room is packed when we get there. It reminds me of being in Los Angeles and every appointment was overcrowded and impersonal. The receptionists can barely be bothered with us. I am given a psychological test with 338 questions...it takes me an hour to fill out. I will have to send a reimbursement form into my insurance for this. We are taken in by a nurse who does an intake interview with me, and by the time we see the doctor have been there 2 1/2 hours. The doctor is nice enough, but when I ask him if migraines can be caused by food intolerances, he says, "no, a lot of people think that but that doesn't really happen." WHAT? He suggests magnesium (this was also suggested to me for muscle aches) as a preventative measure and then prescribes Zomig nasal spray for the migraines. This is supposed to be THE headache center and I was hoping for way more information and answers. KG and I are not impressed with this experience.

I see Dr. S., and my white blood cell count has gone down even further to a 2.2, and my ANA level is up again. My Mom is with me and he tells us he is concerned enough with this that I must see a hematologist. He also backtracks AGAIN, and tells us he would like me to see a rheumatologist and an infectious disease doc. Oh my goodness, I could just scream or cry. This time last year I saw both of these docs, and my journey began. Both the infectious disease doc I saw and the many rheumatologists were not supportive and made me feel frustrated. In fact, the infectious disease doc he recommends to us is the same doc who was so dismissive of me last year. We tell Dr. S. that we do not want to go back to these doctors right now. We decide that I will see a hematologist and depending on that assessment, will move forward from there either treating me with more antibiotics or not. I am so scared that the doc who has been treating me for lyme disease for 7 months is now bactracking and making me question what is wrong with me. I just want to get better...and antibiotics were making me so. I believe I have lyme disease, all of my symptoms point in that direction. But I am being told again that these symptoms can also be indicative of lupus. I realize that I am officially in the "lyme black hole," not sure if I have an inflammatory illness, or if I have inflammation because of lyme disease. This happens to so many people, and once I was on antibiotics I didn't think it was going to happen to me. Now here I am.

Today is my birthday. What a difference one year can make in a life. Last year on this day I went to work and then to acting class. I was looking forward to my birthday party with all of my friends in Los Angeles and I was rehearsing a play I was very excited about performing. One week later I was in the hospital. I realize that life is fragile, and that the things I thought were important turn out to not matter at all.

Los Angeles Heather calls to wish me a happy birthday. She tells me she is proud of me for the person I have chosen to be in illness, that I am not a victim. I need to hear this, because I constantly feel like I could be more proactive and more positive.

Despite having pain in my body and feeling like I am no closer to an answer than last year, I am grateful for so many things; the support and love of my family and friends, that KG, an amazing man, has come into my life, and for being home. My hope this year is that I will get better and get my life back. But I realize that my life will never be the same after this journey, and maybe that's actually a good thing.