Doctor: I have some good news and some bad news.
Patient: What’s the good news?
Doctor: The good news is they are naming a disease after you!
Every time I see my Rheumatologist, he has some good news and some bad news. What do you expect with an auto-immune disease? There is always going to be bad news…so which one do you want first?
The Good News
I had a few tests done since my last appointment in February, and one of them showed significant improvement (finally, some good news). It was a heavy metals test that showed I had nearly cut my heavy metals levels in half, specifically mercury and lead, since my last test 6 months ago.
How does one accumulate heavy metals, you ask? Well, one of the first things I dealt with after my diagnosis was trying to determine why I had such extremely high (I’m talking off the charts) levels of mercury and lead in my body. We chalked it up to several fillings and dental work that I had when I was 4 years old – also a very susceptible time for someone to have metal in their mouth, plus it was before they stopped using mercury/lead for fillings. Now they use a biodegradable white filling material, so make sure they use it on you next time you’re at the dentist! The intense lead levels could have been from living in old buildings back in Washington, DC, or even some levels in the water where I grew up (ask my dad about that one). So basically, I had all of this heavy metal in my body since I was young and it was starting to cause some problems.
That’s when I started chelation – this is a type of binding agent that locks on to heavy metals in your body and helps flush it out. We started with OSR, EDTA, Bio-chelat drops and finally citris pectin capsules (basically the pectin in the peel of an orange). By the way, chelation isn’t usually recognized by most people in the medical world because it is difficult to track success. But at this point I was willing to try anything in order to lower these heavy metals levels in my body because I really don’t want to pass that stuff on to my children eventually.
After the first two chelations, I stirred up all the metals in my body so the tests actually showed an increase. Talk about annoying…But finally, the latest test we did for heavy metals showed that my mercury and lead were nearly cut in half on the scale (this actually means that they are “high” instead of “off the charts”, but I’ll take it!). I’m not completely finished with chelation, but we finally figured out that the chelation is starting to work and now I just continue the process. I’m finally on my way to clearing my body of these metals that are not wanted.
The second piece of good news was that my liver is staying strong during the chemotherapy medication (methotrexate). I have to get monthly blood tests to check my liver enzymes, white blood cell count and a few other levels to make sure my immune system is still holding up while we are suppressing it so much with all the meds. After 6 months of chemotherapy and a biologic, the tests have showed positive numbers, so I’m in the clear. Happy liver = bring on the wine this weekend in Sonoma!
And Then There’s the Bad News
I’m kind of used to by now, but with good news, there is always bad news to follow.
Lately my inflammation and joint pain has increased from maybe one day a week to at least 3 days a week that I am having a flare-up – which in a nutshell means we don’t have the RA under control yet. My rheumatologist likes to call me the “mutant”. There is a specific reason I inherited this nickname (from a genetic mutation we found in a test not too long ago), but he also calls me this name because most of his patients are already in remission after a year – but not me! Not only is my body stubborn, but prescribing me any kind of medication or vitamin or antibiotic is a nightmare. Because of my food allergies to starch and corn, anything my doctor tries to prescribe me has to be specially compounded or ordered. It’s a never-ending battle, really.
So the verdict from the doctor is that I have to increase the methotrexate, which is already a difficult medication to take at the low-dosage I currently take. I will have to work up to double the dosage that I’m on now. Yikes…wish me luck. Hopefully Sunday lazy days won’t turn into Sunday and Monday sick days.
Another bad thing about suppressing my immune system with the Cimzia biologic medication and the methotrexate chemotherapy, is that I tend to get infections and viruses very easily, and just can’t seem to get rid of them.
Last year, before I started taking my first biologic medication, Enbrel, I had to get tested for tuberculosis. And I found out I was exposed to TB (not the lung kind, but the blood kind) at some point along the way and my body never got rid of it. So I had to take 6 months of a very strong antibiotic, INH, to clear that scary bacteria from my body.
The most recent infection I may be fighting is some sort of fungal or bacterial infection in my lungs. It all started with common cold symptoms and stuffy sinuses, which then grew to a chest cold and cough (probably bronchitis). I thought it was just allergies stirring up, but when I started taking Claritin, it still didn’t help. So my doctor believes it may be an infection that is just sitting in my lungs (probably from this humid/moist climate I live in), since I don’t necessarily have a healthy immune system to kick it. Now I get to add an anti-fungal and antibiotic to my list of daily medications for the next 3 months, just in case, along with a ton of tests to make sure it’s not valley fever or something worse.
Best part about my appointment was when my rheumatologist said he was going to take my file to his conference on auto-immune diseases to ask his doctor colleagues how in the world to “cure” me… oh lord…