Monday, August 3, 2015

Relapse and New Diagnoses

I am very long over due for an update on here. I gave birth to our second daughter in February of 2014. It was a rough pregnancy to say the least but I made it through and gave birth to a perfectly healthy, sweet, spunky little girl! I was on a two antibiotic combo while pregnant to help prevent passing along lyme disease to her. Even though I was in remission, it is still recommended you be on the two drug combo to protect the baby. We tested the cord blood and that came back negative. I am keeping a close eye on her but other than two food allergies, she is a healthy girl and we couldn't be happier with our two girls. They are the loves of our life and we couldn't ask for better children! Parenthood is an amazing journey, right?! We are so blessed! 

Onto my health. I am not doing so well, recently I've been diagnosed with Mast Cell Activation Disorder or Syndrome. Also known as MCAD or MCAS. Over the past year I have been having a lot of trouble with food allergies and sensitivities. I have has a few anaphylactic reactions, Iv'e had to use my epi pen twice and should have used it three times. Have been to the ER many times and just trying to figure out what the heck is going on with me. I was lucky enough to see a Doc in the Mast Cell field that is the top dog, many people travel really long distances to see him and lucky for me I didn't have to go far. I had to go through testing twice because its VERY sensitive and the first batch was mishandled so round two was the winner (or looser? lol). It proved I do in deed have Mast Cell and we can move forward with treatment. Its tricky and very confusing. There's only so much researching I can do before I get completely overwhelmed and have to take a break. So I still have a ton to learn. According to the specialist and the Mast Cell community, it can take years to find the correct drug combo that is the winner for me. Oh joy, sound familiar? It's all so confusing. This particular Mast Cell doc doesn't believe in chronic lyme and thinks the crappy testing out there is accurate (insert eye roll), so it gets really confusing what is Mast Cell and what is my lyme and co-infections. I really do not understand at all why these medical professionals don't believe you can have both. Of course you can, ticks and lyme are everywhere, its an epidemic so of course you can have many different health things going on at once in one person. And I am sure they feed off of each other and break the body down even more. I have so-much-learning-to-do. Its exhausting! I was also recently tested for the MTHFR gene and it looks like I have that too. Not surprising but still annoying to add more to the plate. Still learning what that's all about too and need to see the genetic team for more specific testing. Apparently I can be at risk for blood clots now? As far as the lyme, I think I relapsed a few months ago. I didn't want to admit it and also didn't want to pay an arm and a leg to see my medical team and for treatment. There is no denying it now though, I am getting worse and need to do something about it. Just in the last week or two the bone pain has gotten so much worse. Joint pain has been mostly feet consistently and lower back but now its traveling. Knees have been so dang painful recently along with feet. I am sure both babesia and bartonella are back from my current symptoms I am showing along with the lyme. I feel like an old lady. It especially kicks in full force at night after I have been sitting for a bit, its hard to get up and oh so painful. The joys, right?! So, I decided to make an appointment with my naturalist in a couple weeks and go from there. May be adding in my LLMD in NY too. 

My older daughter who is 8 is having a lot of health problems lately too, so we are trying to figure out what is going on and how to help her. There is a local peds Mast Cell doc that she will see for testing, most likely test her for lyme again and have some specific genetic testing done for her too. Poor thing is too young to deal with so much. She already has celiac disease and a metabolic disorder called MCADD. Lets hope we can get all of under control for her specifically.