It’s been three years of searching, fighting, researching, doctors visits, bad medications, sick nights and sick days, cold sweats, hopeless thoughts, and overwhelming fear of the unknown, the undiagnosed, the monster inside of me, the disease. That said, the journey is still far from over but now the monster has a name. The research has paid off, the bad doctor stories seem to fade a bit, the sick nights and days have a reason, the bad medications make sense, and the hopeless thoughts melt away. I mentioned earlier that I waited since August to see Dr. Pizzino, one of the many doctors that a holistic psychiatrist gave me and when I scheduled the appointment I had planned on seeing Dr. Jemsek and thought of this appointment as a back up. Dr. Jemsek had to leave the state due to the medical board of this state trying to control the way he practiced medicine and he was swamped with court proceedings for several patients who were suing him, even after they agreed to his treatment-they claimed he made them sicker. All that aside, I realized around the first of September that Dr. Pizzino was probably the only doctor that I could see this year, every other option I had found was out of state and Dr. Jemsek wasn’t supposed to be settled until early in 2008. I got lucky. Dr. Pizzino is exactly what I was looking for, and it was worth the wait…atleast from August to October, I’m not sure it was worth three years. Her office is about an hour and a half drive, which isn’t bad at all. She agreed with me on many levels, she was amazed that my CD57 test came back as a 3, saying that she had never heard it so low and wondered how I functioned. She agreed that the rash combined with the fever that could not be diagnosed was very likely Lyme. She said all of my facts were in order and that I HAVE LYME DISEASE and that it has progressed, therefore causing neurological damage accounting for my symptoms. Three years and I have a real diagnosis, a real cause, and a treatment plan. I will need to make a trip to see Dr. Jemsek (she has studied his treatment process and is using it to treat me) just to check in and see if he would add more to my treatment process. I am a candidate for IV antibiotics and Dr. Pizzino has a colleague who treats that way, so if I want to go down that road later I will have the option to do so and she will recommend me for that treatment. I can also look into IVIG which is good because I do not feel limited in my options and am happy that I can get this treatment without traveling too far from home. The visit with her went wonderfully, she realized that I had done my research and therefore we could talk more in depth about treatment. She agreed that it was not worth my time or money to do a western blot, she simply said to apply that money to medication. She did take some blood to look at my white blood count and to check for co-infections. I could go into a lot of detail about this appointment but it is much easier to say that she did everything right and I am happy to be in her care and if I have any questions at any time I have her cell phone number and she will return my call within 15 minutes, she agreed to speak to my local primary care doctor to explain my treatment protocol to her as well. We’re taking it one day at a time but we do have a plan.
Here’s the current treatment plan:
Beginning Monday October 29 (Week 1, Cycle 1) I will take doxycycline and zithromycin M-F and take Saturday and Sunday off.
(End Week 1)
Monday, November 5 (Week 2, Cycle 1) I will take doxycycline and zithromycin M-F and take Saturday and Sunday off.
(End Week 2)
Monday, November 12 (Week 3, Cycle 1) I will take doxycycline and zithromycin M-F adding flagyl on W-F and then take Saturday and Sunday off.
(End Week 3)
Monday, November 19th (Week 4, Cycle 1) I will be off all antibiotics from Monday the 19th to Sunday the 25th.
(End Week 4, Cycle 1)
Monday, November 26th (Week 1, Cycle 2) I will take doxycycline and zithromycin M-F and take Saturday and Sunday off.
(End Week 2)
The cycles are one month long and I am taking weekends and the fourth week off to allow my body a break since being on the antibiotics will cause my body to react in negative ways, called a herx, these reactions are unpredictable but can include fatigue, increased muscle pain, nausea, vomiting, and many others. We must keep a close eye on my reactions if I develop any rashes Dr. Pizzino must be notified and if I begin passing out I will need to go immediately to the ER making sure to call Dr. Pizzino so she can speak to the ER doctor about my protocol. My immune system is going to take a big hit being on the antibiotics because they will also kill off good bacteria that my body needs so I needs to be careful around people, especially children and those who have known infections. I will be more susceptible infections/bugs/colds and especially with the rise of cases of MRSA and the flu, I will need to get a flu shot and not be hanging around hospitals, drink after anybody, and wash my hands often. To protect my body I have also been put on supplements to help various side effects, protect me from further neurological damage and to boost my immune system. I have to be careful of my diet to assure that I get enough calories and enough water.
It isn’t going to be easy but it is better than living day to day in pain without knowing the cause. We’re still a bit baffled by it all and I hope to write a little more introspectively at a later date, but at the moment I’m just happy and a bit scared about what it to come but mostly I am hopeful that there is a light at the end of this road. With everything else that is going on in our lives, it’s hard not to let this bit of happiness shine through, we’re in a rough patch but things feel a little bit sweeter. Just wanted to give you some specifics about what was going on, check out the links I added to the right and leave me a comment if you stop by.