Saturday, November 12, 2011

Lyme Lasagna

Lyme Lasagna. Sounds appetizing doesn't it? My Lyme story gets longer and longer with twists and turns and many a lasagna. One layer of the story doesn't work without the other.

I've finished week 2 of antibiotics and had my check up with the Specialist. I cannot convey the feeling of general crappiness that I feel. The Nurse Practitioner that I see was quite pleased with my Herx symptoms-herxing means the antibiotics are working. I'm glad someone is enjoying them because in all honesty this is a horrifying process and if I didn't have a really strong support system I don't know how I would get through it.

I'm back in my angry phase. I'm wondering how 9 doctors could have decided to NOT treat me. Nine doctors-not one or two but nine. I'm wondering how after 28 different medication trials for Fibromyalgia that they didn't stop to think that Lyme could still be the culprit. They made that decision to not treat despite what was in front of them. Does anyone else find that shameful? What ever happened to "first do no harm". Their medical training teaches them to worry about the implications of long term antibiotics as harmful and to only rely on medical science for diagnosis I guess.  What ever happened to listening to the patient? And in my case I had 3 positive co-infections documented and the Bartonella is pretty definitive based on symptoms and the classic rash I recently went through. I suppose I'm faking the brain lesions too.

I don't know what kind of function I'll get back after treatment.The NP already told me I was in a for a long haul. It's hard to be positive in the middle of treatment when you see little or no improvement. I know it's only week 2 so all the other lymies out there are telling me to be patient.

Treatment sucks. I'm tied to my house. You either spend your days hooking up your lines, infusing, playing with syringes, IV flushes, alcohol swabs, dragging an IV pole through  your house, figuring out how to shower, managing spells of rage and crying, waiting for medical equipment deliveries, managing the symptoms from the die off, unhooking, more line flushing, waiting for IV nurses and dressing changes, submitting forms to insurance companies, fighting payments (or lack there-of), getting blood drawn, sleeping (or trying to sleep), or just trying to breathe. Put that on top of taking care of kids, home, cooking, everyday life-yeah you get the picture. Treatment is a full time job.

This week I'm dealing with bad headaches and neck pain, and awful chest pain and air hunger. I can't really call it shortness of breath. It's more like when you were a kid and you swam all day and then at the end of the day you tried to take a deep breath but couldn't because your lungs had had enough. It's that feeling that you can't take a deep enough breath. It's Lamaze breathing 24 hours a day. Walking to the end of the hall exhausts me.

My vision is awful with floaters, black veils, photophobia and blurriness. So now I have to see an Ophthalmologist in Boston that specializes in Lyme vision. The NP isn't hopeful that I will get my full vision back considering how long this has been brewing in my central nervous system with no treatment. Thanks so much sucky non-believing doctors. Spend a day in my shoes and see how long you survive or if you think your decision and former beliefs about Lyme were right. Oh and when you change your mind about what Lyme really is, then we'll make you wait 3 years for treatment. How does that sound?

After my initial 30 days of treatment are done, my IV dose of medication will be increased. Double dosing. O' Joy. Yep-herxing through the holidays. The NP let me know that I have to stay on antibiotics until I no longer have active symptoms and then she does pulsed therapy for how ever longer that takes. In the midst of treatment we do some repeat MRI's to see where we are. A very long haul.

I am trying to focus on that fact that I now have a NP that listens to me, that is treating me aggressively with antibiotics and who is hopeful for my future instead of the lyme naysayers. What I say to my former doctors-I'm not really sure and haven't decided. I'm not sure saying anything would help change their mind. Probably not butat the very least-they will have heard me.

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