LLMD in CT, New Haven area ideally but anywhere within 45 mins!

Hi everyone,

I'm new to the forum, and the short of it is that my husband and I have both been diagnosed with Lyme disease. I've recently started having a lot of leg pain, both transient and consistent joint pain, extreme fatigue, and various mood disturbances, among other isssues. He has experienced many advanced longterm Lyme symptoms. We have a 9 month old and it's a struggle keeping up with the energy we both need at this time.

That all being said, I'm currently seeking LLMD recommendations after having been told my Lyme results were likely a false positive due to pregnancy, thereby foregoing further treatment (had a round of amoxicillin while pregnant) until the present (currently almost finished with a three week round of doxy). I'm angry to have had to wait until feeling very symptomatic with frequent debilitating pain and exhaustion before this could be properly addressed and feel the follow up by the infectious disease specialist I saw at Yale was inadequate.

We live in New Haven, CT and are seeking doctors in our vicinity that are Lyme literate and can treat us more effectively. Anything in a 50 mile radius, but obviously the closer the better!!! I'm feeling desperate to find a good doctor for both of us.

Very frustrated and depressed .... Thanks for any help and leads on our quest to to our possible health.

Hi Mitzcracker,

I just emailed you :)

Hi Mitzkracker!
Welcome to our little community!! I'm so sorry to hear that both you and your husband have Lyme! Unfortunately, you will also need to keep in mind that your precious little one could also be infected - something else ID doc's don't believe can happen, but still does.

If you haven't yet, please do read through our "New to Lyme? Start here!" thread that sits at the top of the forum. It's crammed full of important information about Lyme and the other infections that usually come with it!

I'm so sorry that I have to be the one to say that to you, but the truth is that no one knows when or why it gets passed to some and not other babies during pregnancy, as with most things that have to do with these diseases, more studies need to be done.

The thing that you have to be sure of is where you are getting your information. We are in the middle of a huge 'war'. The two sides are the IDSA (Infectious Disease Society of America) & ID doctors and ILADS (International Lyme and Associated Diseases Society) and their doctors. Unfortunately we are all caught in the middle of this "war" - it affects every aspect of this disease - getting diagnosed, finding information, getting treatment that actually works. If you aren't aware of this controversy, here are a couple of links that I believe explain it pretty well:
www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/#

www.ncbi.nlm.nih.gov/pubmed/20946067


Here are a few of the many links that can lead you to the info about Lyme being passed during pregnancy:
www.drjoneskids.com/

I can't get a link to send you directly to the info, so if you will scroll down until you see the link that says "Pregnancy and Lyme" on the left side of the page.

The ones that have the most information are the links at the bottom of the article that say "Pregnancy outcomes" by John Drulle and Lyme & pregnancy - in my opinion. The others just say that more research is needed, even though they document very real issues.

The other thing I would suggest is that you search the internet using the terms "congenital Lyme" and do some more reading. Even if the chances aren't very high for this to be passed, telling Moms and Dads that it can't happen is very wrong!


There are other tick-borne infections that have enough evidence of being passed to the baby during pregnancy that you should really be aware of them as well as for yourself - Lyme usually isn't the only disease passed when a tick attaches. Bartonella and Babesia are the most common, I believe, but they are by far the ones that have the most research into them other than Lyme.

On Dr. Jones Kids site that I referred to above, there are also links for Bartonella being passed during pregnancy.

Here is another one:
news.ncsu.edu/releases/bartonella/

The other one that I know of that can be passed in utero is Babesia - even the CDC admits to that one!
www.cdc.gov/parasites/babesiosis/gen_info/faqs.html

Again, I'm so sorry that you had to find this info out on a forum, but I always feel the need to explain that there is a very real possibility that it can happen.

We have several mothers of young children on here that are very helpful, I'm sure you will meet up with them soon! They have done a lot more investigation into these things that I have done - my kids are all grown up.