Along with the interstitial cystitis, inappropriate sinus tachycardia and supposed IBS (I never believed that one), I started having problems with my knee out of the blue and went to physical therapy for several months as well as received shots in my knee. My knee has just recently started bothering me again – is it an old “injury” (that I don’t remember receiving) or has it been Lyme all along?
I also developed diverticulitis in late 2011. Now, no offense, but this is typically a disease that older people get. As in over 60 older people. I was 35 at the time. But it was diagnosed and I was basically on a liquid diet and another round of antibiotics. And once again, they couldn’t tell me why this developed as I didn’t seem to have any other risk factors for it. I often joked with my doctors that I was going to donate my body to science because I have so many ailments that none of them could explain.
Also, during my pregnancy, I developed reddening and thickening of the breast skin on both sides. After multiple rounds of antibiotics, my doctors told me they suspected inflammatory breast cancer. This is an aggressive form of breast cancer that without treatment has a life expectancy of six months. That date just so happened to coincide with my due date (from the time symptoms started).
Luckily, that turned out not to be the case but it was about three months from the time it all started before I found that out. And no one was ever able to explain why I had all of the symptoms of a rare and incredibly aggressive form of breast cancer.
As I said earlier, my biggest fear in all of this is the possibility that I’ve had this for a long time and could have passed it to my son during the pregnancy. Along with my medical history that largely can’t be explained by doctors, I was also given a round of steroids in June 2012 just prior to when all of my symptoms started.
Now, steroids have been proven to be very bad for Lyme. It can “activate”, for lack of a better word, an otherwise dormant infection (or one that the immune system is keeping in check) and can spiral an active infection out of control. So did I just happen to be bitten around the same time as I received the steroids or did the steroids stir everything up again? Once again, it’s a question I’ll never have an answer to.
But the biggest question was did I have this while I was pregnant? Could all of my past medical history be explained by that tick bite in the summer of 2000? Interstitial cystitis, knee problems, fevers, unexplained fatigue and general lethargy, heart problems – all of these could be related to Lyme. Or could it just be that I’m unlucky with health problems? It’s the question that can’t be answered. But the question I HAD to know was about my son.
Within a few days after getting my diagnosis of Lyme, I was on the phone with my son’s pediatrician, scared to death. I told her what happened and asked what the possibility was that I had infected my son during pregnancy. She stated it wasn’t possible and she hoped my doctor had told me about all the false positives for Lyme tests (there’s actually a much better chance of a false negative!). I asked about testing him and she said there was no need because he hasn’t had any symptoms. She said we would keep an eye on him and if he ever started developing symptoms, we would test then. So I dropped the case with her.
Until a few days ago, despite my research, I never had any other answer. But each time my son would have a fever or say something hurt, the voice in the back of my head was saying “You gave him Lyme”. And it would devastate me. It’s bad enough to think how I have affected our lives just with everyone having to deal with me having the disease. But the thought that I could have given it to our child was just too much.
So a few days ago, I did my first webinar with a Lyme doctor – this is the same webinar I referenced here. Anyone who attends can ask questions and he answers them. One person asked about the possibility of passing it during pregnancy to the fetus.
He answered that there is a 50/50 chance that it could happen. If the mother knows she is infected, she should be on antibiotics during the pregnancy and if she is, the risk drops to less than 1%. A known infected mother should insist that the cord blood is tested after birth. This can give an idea of if it was passed. After that, it’s a game of waiting to see if symptoms are exhibited. Because there is no test to see when Lyme is gone, he said he doesn’t believe in treating unless symptoms are present. If there are no symptoms present, even with a positive test, he doesn’t treat because there’s no way to know when to end treatment since that should be symptom based.
He said kids who have Lyme tend to be colicky after birth. But of course this happens with lots of babies who don’t have Lyme. Other indicators can be behavioral problems outside of the “normal” behavior of a child. And one of the biggest indicators can be fatigue and where the child just doesn’t show interest in anything other kids are doing and can’t seem to keep up with other kids his own age.
Thankfully, none of this describes my son. He currently runs circles around us and operates on much less sleep than we do (me or my husband). Hopefully, it continues to be that way in the future and I really didn’t pass this along to him.
And while the time during the uncertain cancer diagnosis was one of the scariest of my life, it may just turn out that it was a blessing in disguise because I was on antibiotics for such a large part of my pregnancy.
While I may never know when I was actually infected with this disease, it does give me some peace of mind to know that if I was infected while pregnant, the antibiotics could have potentially helped to spare my son.
Only time will tell.