Its been a long time since I updated our Lyme Journey. And wow. In so many ways, not much has change in almost 3 years. It’s pretty depressing, if I let it get to me.
Caitlyn’s remission ended twice. At one point, we think she was re-infected in 2011. Then she seemed to get better to only have a total relapse in December 2012. She is currently taking Rifampin, Tindamax,Minocycline, and Artemesia, plus probiotics for Lyme, Bartonella and Babesia duncani.
Scott seems to be holding, but Lyme and HHV6 Viral titers are still quite high. He takes Valtrex and Doxy every day.
Gary– well, same old same old, only worse? He had done another 6 month round of IV abx as well as all of his other meds. he is mostly housebound due to pain and constant nausea.
Me- well, I am hanging in as best as I can. I recently tested positive for Babesia too. That is a new one for me, and I am being treated for Bartonella even though I haven’t tested positive for that. My LLMD is basing that on clinical observations- meaning I have all of the symptoms except the skin rashes. I might need treatment for Rheumatoid Arthritis because my RH factors are getting higher and higher. We don’t want to do that at the moment becasue it would most likely involve steroids which is bad for Lyme and immune issues.
Basically, its a mess. I wish I had a better update. I do have Hope.
I got a few very nice comments and emails from other Lyme Disease sufferers. I thought that I would update my family’s progress. My daughter has now been symptom-free for 8 months! She has been completely off of antibiotics and herbal supplements for almost 4 months. I am thrilled to see that you can get better! The rest of us have our good days and bad. Scott is doing much better without the stress of waking up early for school every day. I am feeling better now that the school is not calling me daily either. Gary is pretty much the same. Our LLMD told us that he is most likely “in it for life.” But I am not going to give up hope that at some point he can have a more “normal” life.
There is so much new research coming out in the Lyme community that I am sure that at some point, hopefully not too far in the future that the doctors will have better answers and that the medical and health insurance communities will finally accept this disease as it really is, once and for all.
So you want to know more about me. Well, I have to admit, I am complex but up front if that makes any sense. I have a lot going on in my life.
I am a mom to 2 kids, married to a great guy. One small problem- all four of us have chronic, late stage Lyme disease. Let me tell you, it is not fun being the care taker of an entire family who is chronically ill- especially since I am one of them.
I try to keep my sense of humor in spite of it all. I have a wonderful online Family at Oscraps.com who keep me going. And I have a Lyme Support group at Healingwell.com
I live in NJ- home to bears and – you guessed it- ticks. The ticks scare me way more than the bears do.
I tend to be pretty outspoken on issues that mean a lot to me, so be prepared to hear rants as we get closer to the General Election.
Please leave comments- I love to hear what other people think whether it is in agreement or not!