Monday, 12 August 2013

Pregnancy and Lyme.

So, I have 6 months to get better. That's an entirely self-imposed arbitrary 6 months of course, it's 6 months until I'm 40. Why do I want to get better by the time I'm 40? I want a baby. We have a gorgeous, seemingly healthy 2.5 yr old daughter and I am thankful for that every single day. However, it makes me sad to think of her growing up without a sibling and I feel very sad at the thought of not having any more children. My friends are popping sprogs left right and centre, the toddler groups are littered with fecund mums with newborns or swollen bellies. I want to be one of those mums moaning about swollen ankles and indigestion. Right now, that seems a distant goal (a cold had just put me back into uber-wobbly mode again, a reminder of how fragile and frankly, diseased, I still am).

Having done the exotic holiday/climbing/mountain biking/munro bagging thing for a few years with my partner, we were just about to begin trying for a bub when I fell ill with Lyme in 2008. 19 months of treatment dragged by and we hopped back on the baby making train as soon as I'd stopped treatment, after being asymptomatic for a month. I had two early miscarriages before having a successful pregnancy with my daughter. I will never know if those miscarriages were linked with Lyme. It was probably too early to start trying but I was cluckier than a very clucky hen.

I had a very problematic pregnancy - very painful pelvic instability, very sore bump, UTI's, some bleeding, cellulitis and severe thrush, urticaria (over my entire body), palpitations, fatigue, indigestion. I thought at the time that I was asymptomatic for Lyme throughout pregnancy and I still think that, but I wasn't very healthy either. Our beautiful daughter was born by C-section (after 3 days in Labour) and we were overjoyed. She had colic and reflux, so the first 6 months involved pretty much non-stop crying and sleep deprivation for us all. I thought that if I was going to relapse, then this is when it would happen- I was permanently shattered and stressed. But it didn't - there was no sign of the Lyme, perhaps it really was gone for good.....

We began trying for another baby when she was 15 months old. We had settled into a nice routine, sleep was no longer an issue, we had moved to a bigger house where the schools were good. I fell pregnant quickly but bled a bit, I knew that wasn't good. At 11 weeks, I miscarried again: a devastating loss which was both physically and emotionally traumatic. We both grieved for our lost baby and moved on with our lives. 2 months later, I suddenly became very ill. The severe flu-like illness (but without the runny nose) was alarmingly similar to the acute phase of Lyme first time round. Then the legs went. I collapsed on the kitchen floor, hardly able to walk. I knew it was back. Maybe the stress of the miscarriage had triggered it, maybe it was triggered by a minor virus - I tested positive for recent exposure to ECHO virus and they detected Rhinovirus in a nose swab, but I had symptoms of neither. I will never know. Was this third miscarriage related to the Lyme? Maybe, maybe not. It's impossible to say.

Amateurish visual representation of pregnancy and Lyme. P.S. I did not buy the fluffy tick, I was given it by a friend, pre-Lyme, when I was an entomologist. I'm not some mentalist, honest!

This is a good overview talk  on the subject of Lyme and pregnancy by a UK Obs/Gyn consultant, Dr Sarah Chissell who has a special interest in Lyme (her son had Lyme and she organised the 2010 ILADS London conference). There is an updated talk by her given at the ILADS London 2010 conference, you can buy the DVD of that here. The talk is a literature review. The conclusions by Dr Chissell from that 2010 talk were:

  • The majority of women and babies have a good outcome despite acute gestational Lyme disease
  • Lyme disease is associated with pregnancy loss
  • Lyme disease can be transmitted vertically to the fetus
  • Congenital Lyme disease supports the existence of chronic Lyme Disease
  • Borrelia burgdorferi is probably not teratogenic
  • HGE, Babesia and Bartonella can be transmitted vertically
  • Significant risk (??50%) of adverse pregnancy outcome with untreated Lyme disease
  • Small risk (??5%) of congenital Lyme disease when women are treated with antibiotics throughout pregnancy
  • Babies of undiagnosed women are at risk so patients/doctors need to be aware of congenital Lyme disease.

What constitutes 'treated' lyme disease is not defined. For me, I would like to be asymptomatic before trying to get pregnant, apart from the risk to the baby, I want to be able to cope health wise with pregnancy, my toddler and a newborn.

I had an interesting conversation with my LLMD (PA) about pregnancy and Lyme. They said there is an increased risk of miscarriage and they would like me to be in better shape for pregnancy. They prescribe antibiotics during pregnancy, which would probably be Ceftin and Azithromycin, monday to friday continuously throughout pregnancy. They would be concerned about my partner catching Lyme from me (she thinks it is sexually transmitted but admits there are no proper studies showing this). They would put my partner on a preventative schedule of antibiotics which I think she said would be one week in four on antibiotics. I the meantime, we practice safe sex, don't share razors or toothbrushes and are very careful with cuts and scrapes.

Am I worried that my daughter has congenitally acquired infections from me? Yes and no. I was asymptomatic when I was pregnant with her. To me, that reduces the risk considerably, the spirochetes are either not circulating or are but in low numbers and are being controlled by the immune system, so the risk of infection has surely got to be low. She doesn't display any signs of being sick, she's ridiculously bright, energetic and really quite healthy. Yes, she had bad colic and reflux as a baby, but that's normal for lots of babies. She has met all her developmental milestones and is ahead in some areas. She's a bit on the thin side, but I was a skinny child, so was my partner. I haven't had her tested, I can't see the point. If it comes back positive, I will just worry myself stupid but would be inclined not to treat her as I think, 'if it ain't broke, don't fix it' (this opinion of not treating asymptomatic carriers is my own, but backed up by opinions from other LLMD's whom I respect). If the test were negative, that's not very  informative as false negatives are so very common. 

So for now, we will keep a watchful eye on her and look out for any symptoms. My LLMD has told me to look out for growing pains, headaches, stomach/gut problems, personality changes, she says these are common indicators in children.

There are tons of resources on pediatric Lyme on the internet in case you are interested. I particularly like this compendium from tick talk Ireland. This article details the way the brilliant Dr Ann Corson evaluates and treats pediatric Lyme. This is the website of Dr Charles Ray Jones, who is an amazing pediatric Lyme specialist. My own LLMD has a pediatric nurse practitioner who I am told is excellent. Here is a list of US pediatric Lyme specialists. There are none in the UK. I believe BCA in germany take on pediatric cases. 

It would be my worst nightmare, finding out my child has Lyme. I really hope that never happens. In the meantime, I'm trying my best to get better as quickly as possible so we can complete our family and give our daughter a healthy brother or sister.


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