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(New) Pregnant with Lymes

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Posted 2/15/2013 5:14 PM (GMT 0)
Hello Everyone,
I'm new here and I'm really hoping to find support because I feel alone. To make my long story short- I found out I had lymes this past fall. I knew I have had it for at least 3 years now that I look back on the pieces of the puzzle. I moved to Va ( Washington Area) in 2009. I remember finding a bright red spot on my scalp and very tender to the touch. I never thought anything of it and even found more spots within a year which would remain sore for awhile. I started getting sick constantly. I literally had flu like symptoms, sinus infections, migraines and feeling of a lump in my throat since then. I moved back to Southern NJ about a year and a half ago when I decided I needed help because the symptoms were taking a toll on me. I went to the doctor and practically begged to be tested for lymes. I also went to the cardiologist because I had developed an extremely high heart rate. My doctor called and told me I had lymes. I was put on 21 days of Doxy. The cardiologist concluded my heart issues were caused by Lymes and would go away after treated with antibiotic. My doctor acted as if I would be fine after the antibiotic but the problem is I still have all the same symptoms prior to be treated. I tried to go to an infectious disease doctor who treated me poorly and basically questioned why I needed to be seen if I was treated with Doxy. I'm not almost 11 weeks pregnant and very excited. To be honest as excited as I am I'm very much afraid because I know something isn't right. My doctor will not retest me for Lymes and my Obgyn doesn't think I should be concerned. I just want to feel normal again so I can be healthy and give birth to a healthy baby. Please help- I need a good doctor who specialized in Lymes. I feel alone and helpless but felt a sense of hope after finding this site. Thank you if you took time to ready my story :)
Posted 2/16/2013 1:56 AM (GMT 0)
Your infection was not treated long enough. If a person gets lyme disease and is treated IMMEDIATELY, short-term doxy can sometimes eliminate the infection. However, that is no where near long enough for someone that has an untreated infection for any amount of time.

There are two different treatment guidelines, the IDSA (narrow guidelines followed by infectious disease drs.) and ILADS guidelines (long-term treatment guidelines for LD and co-infections). As you have discovered, you will not get anywhere with an infectious disease doctor. You need to see a LLMD (Lyme literate MD) that has ILADS training and follows those guidelines.

Your experience of being treated badly by doctors is, unfortunately, a familiar story to most of us with LD.

I don't want to worry you, but LD can be passed in-utero. For your health, and the health of your baby, it is very important that you find a LLMD that is knowledgeable in treating LD. If you receive proper treatment while pregnant, it greatly reduces the chance of your baby contracting it.

It may require you to travel and go out-of-network for insurance to see a LLMD, but definitely important. When you find a LLMD, if you explain that you're pregnant, the Dr. may be able to get you in sooner (most LLMDs are scheduling at least a couple of months out).

As WWJD suggested, start a new thread on here stating that you are looking for a LLMD in NJ. Make sure that your e-mail is listed and enabled in your profile so people can send you LLMD names. It is against forum rules to share Drs. names on here publicly. If you enable your e-mail, people can contact you privately w/ Drs. names.

It would be helpful for you to read the info. in the "new to lyme" thread on here. There is a lot of good info. about LD, co-infections, detoxing, etc.
Posted 2/18/2013 3:27 AM (GMT 0)
Try not to worry too much. I have had two healthy babies (5 years and 11 months old) while having lyme. I have had lyme since 1998. I wasn't able to be treated while pregnant because I was extremely sick with hyperemesis so I couldn't eat or keep anything down. I know lyme can be passed to the baby, but from all I was told both by my lyme specialist as well as two high risk ob's, the risk was small. Of course I am grateful that my daughter's are both healthy. The hardest part is dealing with a chronic illness while trying to take care of a new baby (no sleep, etc...). But try not to stress too much either. Work on finding a lyme literate dr that can work with your ob. You can have the baby tested at birth to ease your mind too.

You will be ok. The good news is that I felt great after giving birth with both my daughter's for about 6 months. The lyme symptoms came back, but they tend to disappear during pregnancy and for me, the months following. I am also still nursing. I plan to stop at 1 year if my daughter will cooperate with that decision. lol.

I wish you all the best. If you have any questions feel free to ask.

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