15 yrs of mystery illness, tested positive for both lyme and pregnancy, what now?

My heart goes out to you! While I don't have any suggestions for you as far as your situation I know that LYme and pregnancy have been discussed here a number of times. If you go to search and type in pregnancy and Lyme you will find a number of threads to read. The thread on top of the forum is a very good one about detox. There are a number of us here who have had Lyme for decades and are better. I want you to know that there is hope! Sounds like you might need a new Lyme Literate dr. You can post a thread that says "Looking for an LLMD in…" We are not allowed to post dr.s names here so your email will have to be enabled. A good book to read is by Connie Strasheim Beyond Lyme disease. I was bitten when I was 8 years old and had meningitis from a tick. Bitten again at 40, am 42 now. You can pm me if you wish, I will answer to the best of my ability. (hugs), there is hope! You can be well!

Hello Misty_blue!

I had my daughter in 2009 and did not know that I had Lyme so did not receive treatment. She was born with Lyme and finally had her tested after I tested positive.

I had my son in 2011 and was on abx my whole pregnancy and his cord blood tested negative for Lyme. I did not breast feed him as I did not want to risk it.

Personally I believe that if I had not been on abx then my son would have been born with Lyme also. I was only being treated for 3 months when I was surprised to be pregnant with him.

My son is a totally normal and healthy 2 1/2 year old and I had a great pregnancy with him. No issues from taking meds during pregnancy and rarely sick.

You just need to find a great LLMD that knows how to treat while pregnant and then have your baby's cord blood tested. It only costs about $78 and so worth it to know.

Good luck to you!

Misty_Blue,

I'm sorry to hear about your long battle with Lyme. I am only writing because I can relate to that. I have no recommendations as far as Lyme and pregnancy go, as I myself am trying to learn about what Lyme will mean for the future of my family (we currently don't have any children, but we hope to some day).

I just wanted to let you know that I also went 16 years without knowing what was going on with me (I'm 26 now- I was diagnosed with Lyme when I was 10, given 2 weeks of antibiotics, and never thought about it ever again, because my family and I didn't have any idea what Lyme actually was).

Reading your post got me really thinking about our perception of "normal" again. I definitely know what you mean about "your normal." When you've been feeling a certain way for so long, even if you knew all along that it wasn't "normal," when no one listens to you and you don't get the help that you need, you have no choice but to buck up and figure out a way to live with it- so it becomes your normal. I have had this conversation with my husband a lot recently, because I told him I realized that although I am fortunate to not be completely debilitated by Lyme, we can't dismiss what's going on here and continue to pretend like everything's fine on my really good days, and not know what to do on my really bad days. My normal is so skewed and I have adapted to what life is like with chronic Lyme- that doesn't mean it doesn't exist.

Sometimes I think it's difficult for us to finally stop and look at ourselves and realize or even admit, "wow, I guess there's a lot more going on here than I let myself realize," because everything has become "normal" to us. It's hard to differentiate between an honest "normal" (whatever that is, ha), and Lyme when you've been stuck in it for so long... Like a bad relationship. For me, part of that is a coping mechanism. If we felt "not normal" and "crazy" every day for our whole lives and drowned in how awful we felt, we wouldn't be where we are today. We've had to adapt. Chronic Lyme is all about adapting, whether we know it or not.

I started keeping track of all of my symptoms daily in order to see if there were patterns, etc.... At first it was difficult for me, because in my head I was supposed to be tracking when I felt poorly and when I felt well... I literally didn't know what to write because one day I'd be sitting there thinking, "well I feel pretty good today," but I had to stop and think about what "pretty good" meant. "Pretty good" actually meant that I had severe joint pain throughout the whole day, aches and stiffness (but only in the morning, not too bad, right?), a headache and jaw pain that didn't come on until later in the day, mild neuropathy, moderate fatigue, etc. That's when I realized that "poor" is a really bad day, and "well" is my adapted normal day. All those things were so normal to me that I thought "oh my gosh, do I really have to write out all these things every day? There's a long list... EVERY day! They're normal!" That's when I really realized that they're not normal. Honestly putting in to words daily how and what you're feeling and looking back at it is a real eye opener.

I really hope that you find some answers for yourself and your baby, and that your family finds answers as well. If you're unhappy with your current doctor, it wouldn't hurt to look around and see if there are other lyme literate MD's or ND's near you. You deserve proper treatment and compassion- especially after 15 years, and especially with a new baby on the way. As far as a complete list of late lyme symptoms go... I don't know that there's such a list. Of course there are the most common symptoms, but if I've learned anything about Lyme, it's that every case is completely different. Don't try to search so hard that you compare yourself and ignore whatever is going on in your own body. Anything that feels abnormal is likely abnormal, and likely either caused by Lyme or Lyme is making it more difficult for your body to fight it. If you really want the best list that I've seen, look at the "New To Lyme?" thread, which is the first thread. It has an extensive list of symptoms.

Feel free to shoot me an email if you'd like to talk further about anything. Best wishes to you!

Here is a good link with lots of information about lyme and pregnancy. On the bottom left of the page is a link to a side show presentation that Dr. J gave on this topic. It has some very helpful info.

https://sites.google.com/site/drjoneskids/pregnancy-and-lyme

It is very important to make sure you are receiving adequate antibiotic therapy during your pregnancy to minimize the risk of transplacental transmission to your baby. Congenital lyme disease is very serious, but thankfully it can be prevented.

From the presentation: no antibiotics = 50% transmission rate
1 antibiotic = 25% transmission rate
2 antibiotics = no transmission

It is also important that you are on the correct antibiotics and at high enough dosages. This is outlined in the presentation.

This disease is so complicated that I don't think we can rely totally on our doctors. We need to be very informed about it ourselves so we can be better equipped to handle it.

By the way, congratulations on your baby! I am sorry you have lyme, though, and hope that you can finally get on the path to healing.