Wednesday, May 6, 2015

Positive Western Blot... I have Lyme

I kept feeling guilty for not blogging, for not reading blogs, for not doing things.  My world was getting smaller.  I was having more neuropathy.  My midwife with A thought that I had MS, everyone else just talked about my Fibro dx.  I knew I was getting worse, I was forgetting more, having more trouble getting the right word.  I didn't know where to turn. I prayed that God would lead me and heal me.

November 16, 2014 I cracked a tooth on some truly yummy granola.  That tooth just happened to have an old amalgam filling in it that should have been replaced years ago.  I saw a biological dentist the following Friday who wanted me to get a full work up from a doctor in town who's knowledgeable in chelating heavy metals and also to do some blood work to test compatibility with different dental materials.  So the Monday before Thanksgiving, I had the blood draw for the Clifford Materials Reactivity Testing.  Wednesday I saw the new doc who ordered a whole battery of tests.  The night of Thanksgiving that crack turned to a break while I was brushing my teeth.  My black Friday was spent trying to find and open lab while fasting and finally having the largest blood draw of my life.  I felt fine that afternoon but things changed quickly soon after dinner.  By bedtime I was unable to stand by myself and was pretty sure that my liver was the biggest problem.  I made it through the night somehow and was able to talk with my primary doc the next morning.  She prayed with me and encouraged N-acetylcysteine.  Luckily I had some and within a few hours was starting to feel better.  There was some mix up with the lab work and it was about a week and a half before I got the results.  Alas the blood work didn't shed any light on why I was in so much pain.  By this point I was pretty much living on N-acetylcysteine and definitely knew when it was time to take more.  I continued to work with the dentist on a plan to have all of my amalgams out but after too many condescending comments I fired him and started looking farther from home for care.

Around the same time that I fired the first dentist the doc that I had initially gone to for chelation made a comment that unless I had Lyme that all my issues were probably just due to my body not tolerating the amalgam fillings.  So we tested me for Lyme and there it was...  Positive Western Blot.  I meet the NY state criteria for Lyme Dx.  My doctor was strangely excited.  That was in February.  I've been busy dealing with my teeth, trying to find a Lyme Literate Doctor that seemed like the right one to start with and it the middle of all this we realized that our house had mold.  So not only was I dealing with heavy metal toxicity, lyme and what ever co-infections but I was also dealing with mold toxicity.  Crud.

Well I think I've finally found the right doctor to start with.  She's young but she's only 3.5 hours away and is trained in everything that I'm dealing with including the MTHFR that I've known about for years.

So there you go.  That's where I've been.  The rest of the family will be seeing docs for the mold as well.  S is already scheduled for the next available appointment with the doc we picked out for her.  Alas that isn't until July.

I've cried, I've watched way too many horrible stories of Lyme and some cautionary tales of hope.  The thing I understand is that this will be a long road.