Wednesday, March 17, 2010

Doctor vs Doctor vs Patient

It was bound to happen eventually. While at an emergency appointment today, I heard the dreaded words come from my infectious disease doctor's mouth: "There's no such thing as congenital transmission of Lyme Disease. There hasn't been a single case reported, and your baby has been completely safe from the start. I ordered I.V. drugs to treat your symptoms, not to protect the baby."

If you've done your research, and if you're like me and have had over ten years of doctors falsely telling you what's wrong with you and what isn't, you hear stuff like this and your claws come out. You want to verbally bludgeon that stupid doctor and school him on what it means to have Lyme disease in the year 2010. Then, after you beat him over the head with his 1980s reference books, it's safe to leave the office and find yet another doctor.

But not so fast...

I'm learning that it's a little different with baby on board. Please give what I am about to say a chance. I wish I had figured this out months ago, because it would have saved some time and stress. (The last thing a Lymie needs, pregnant or not, is more stress.)

LLMDs are a blessing. We become comfortable speaking with them, learning from them, and trading information. For the most part, we feel safe with them, and we trust them, as they've devoted their lives to studying and treating this awful disease.

However, nothing tears that security blanket to shreds like pregnancy. How hard was it to finally find a LLMD-- someone who didn't think you were nuts? Try finding a Lyme Literate mommy doctor. From my experience, it could take a hell of a lot longer than 9 months, and by that time it's too late.

So here's my thought: just compromise a little bit on this one. Not a single one of these doctors is going to be as well versed in Lyme as you are. Yes, that's pathetic, but thems the breaks for the time being.

I also had to learn to play games to get what I wanted. For instance, instead of calling my doctor an ignorant tool today, I smiled when he told me that Lyme is not congenital and said, "Well that's the best news I've heard this year, Thank God!"

See, in the state of CT, if an infectious disease doctor prescribes I.V. antibiotics for Lyme, insurance companies have to cover at least some of it. I need him right now, and I didn't regret petting his ego when I started my new I.V. Zithromax today. (I had a nasty allergic reaction to Rocephin.)

Obviously, if the doctor belittles you or gets out of line, by all means, find a new one. But if you are just looking for someone to work along with your LLMD, and this person happens to be a bit uneducated in the Lyme department, it's not the end of the world, as long as you have a trusted doctor to fall back on.

At best, you can opt for an OBGYN like mine (it might take a few interviews and some serious searching). She knows very little about Lyme, but when I spoke with her initially, she said she understands that it is becoming a huge problem, and that she is very open to learning more. She then had me explain what I knew.

When she didn't have answers to some of my questions, she did research/reached out to other doctors and got back to me. Not once has she undermined the disease, and ultimately, she has one job, which is to make sure this little baby is safe and healthy.

Again, not an expert by any means, but she is not narrow minded. I swear, there are some open-minded ones out there (but be emotionally prepared to find the jerks who will shoot you down, too).

Here are the questions I asked while searching for the doctor who would deliver our baby:

1a. I have Late Stage/Chronic Lyme Disease. I was misdiagnosed for over ten years, and I am still in the process of being treated by a Lyme Disease specialist. My symptoms are moderate to severe, and there is a chance I will have to be treated with I.V. antibiotics. (Add your own story.)So,

1b. Are you familiar with Lyme Disease, and if not, are you comfortable with working closely with my Lyme doctor to ensure this pregnancy and baby are healthy?

2. Are you able to answer questions about the safety of (possibly long term) antibiotics during pregnancy? Are you familiar with which ones are safe for baby?

3. Have you ever treated a mom with Lyme Disease in the past?

4. Symptoms set aside, my main concern is protecting this baby from contracting Lyme congenitally. Would you be able to help me explore my options to make sure this doesn't happen? (You will find out where the doctor stands with this question, and if he or she gives you the "your baby is fine" line, find a new doctor who is at least willing to recognize the use of antibiotics as a safety precaution.)

Disclaimer: I'm not a doctor. For all I know, the secret cure to Lyme can be found in chocolate chip cookies... so please take this advice with a grain of salt as you travel down your own path toward Lyme recovery.


  1. an excellent post and your advice about smiling sweetly 'smiled when he told me that Lyme is not congenital and said, "Well that's the best news I've heard this year, Thank God!" was great but oh so hard to do even in easier circumstances.

    At the Lyme disease Action conference 2008 in the UK Sarah Chissell presented on congenital Lyme, details of her presentation can be viewed at Sarah also presented at ILADS conference last year details on their DVD if you are interested.

    In very simple terms from what I remember, as an obstetrician she compared treatments for syphilis with recomendations for treatments for lyme.

    Very best wishes in finding your way successfuly through this maze of denial whilst struggling with the reality.

  2. Wow. Thank you so much, Joanne! Though the numbers in this presentation are a bit scary, this information is really helpful. I'm going to share it with my doctor (the wonderful, open-minded one). I know she'll appreciate it, too. :)

  3. This is great info. You are really making a difference and helping others. Thank you.