posted
Hi, I contracted Lyme in 84, diagnosed in 88, antiobiotics until 92.. then no more lyme docs. At 20 weeks pregnant baby just died. Docs are interested in researching the Lyme angle. I'm guessing they know nothing about it... should I leave it up to them to do the research or is there some important stuff and I can hand them to get them in the right direction. I know there are pages of links and documents, but can someone point me to a few pertinent ones? Thanks so much for any thoughts or help!
Posts: 22 | Registered: Sep 2004
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Oh my ........ Although I know words don't cut it at this moment, I am so sorry for your loss.
If you contacted the office Dr. J in Ct I amsure they coould point you towards info in transmission of Lyme from mother to child. There is atleast one documented case, maybe more.
Others will be able to help you more. I don't have kids so don't know much about this aspect.
I will say a prayer for your baby, you and your family, robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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posted
First and foremost, I want to say that my prayers are with you and your family. No one should ever have to go through something like that. You are a brave woman by trying to face a tradedy like that by helping the science of Lyme.
Someone PLEASE POST INFO FOR THIS WOMAN TO GET IN TOUCH WITH TOM Grier.
Also, it may be a good idea to check on Dr. J as well, though he is in a court case right now.
Another avenue may be that you should contact the ILADS, have them recommend a patholgist, or perhaps you should call Brian Fallon at Columbia University.
posted
Amy, my heartfelt sympathies to you/hubby on the loss of your baby.
Amy in TREEPATROL'S NEWBIE LINKS, go to the very last page of lins, and he has posted a bunch of sympathy poems I've collected since my Moms death 16 yrs. ago. Perhaps you will find comfort in one of them. If my one baby poem is NOT in there, please PM me and I can send this to you that a fibro/CFS member write.
These sources to me about babies/fetus' and lyme disease:
1. LYME DISEASE UPDATE: Science, Policy, and Law by Marcus A. Cohen addresses this.
2. Dr. Lydia Mattland, sp; 90+ yr. old infectious MD, has talked a lot about it being spread that way.
3. see SFORSGREN's post for his site ... he has notes on there from a recent lyme conference he attended; think Dr. Lydia was there...
There are my best guesses on recourses for you. Good luck.
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posted
I am so sorry for your loss. What a terrible thing for you to go through. One thing (of the many) I have thought about is that Lyme causes hypercoagulation (among many other things, hormone problems, etc). It has been well documented that infertility and miscarriage can result in those with blood clotting disorders, so can we connect the two? Many OB docs are using heparin for treatment of infertility and preeclampsia. More research on the subject of pregancy outcomes with Lyme definitely needs to be done.
Were the doctors able to test the cord blood?
Here are some Lyme and pregnancy related threads or literature so you don't have to do a search.
There is a Lyme/pregancy yahoo group that you might want to consider joining as well to see if they can provide additional support and information. http://health.groups.yahoo.com/group/PregLyme/
You are in my thoughts and prayers.
-------------------- We have only this moment, sparkling like a star in our hand... and melting like a snowflake. Let us use it before it is too late. Posts: 221 | From the hills | Registered: Mar 2006
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posted
Thank you all so much for the thoughtful words. I am not dealing with this well at all. I did tell the gyn about the Lyme at the beginning, but you know how that goes. Now I have so much guilt, feeling I should have really pushed the issue.... Can't believe my little girl died.... they are doing alot of tests, including western blot (is that what it's called?) on me, baby, amnio fluid and placenta. Will probably be weeks before we know anything. And even then... seems lab tests are so unreliable... I am just so mixed up and depressed. But I haven't seen a LLMD in 10 years... just going through.. dealing.. you know how it is...now I feel Like I really need to be more pro active, but don't even know how. Am waiting for my referral for the LLMD...anyway... thanks all
Posts: 22 | Registered: Sep 2004
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Did you find an LLMD yet? Reading your post deeply saddens me. How are you doing?
-------------------- We have only this moment, sparkling like a star in our hand... and melting like a snowflake. Let us use it before it is too late. Posts: 221 | From the hills | Registered: Mar 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
AmyJ, My heart goes out to you. There is so much conflicting information out there that you can't blame yourself and from what you said, you aren't sure whether Lyme is the cause or not.
The reports I've read on Bb being found in newborn's usually involves tissue biopsies rather than Western Blot's. I think you are more likely to find out the truth via tissue than with WB. You may want to check with IgeneX about getting a biopsy for your baby. http://www.igenex.com/
I'm so sorry for your loss. Terry
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