posted
Hello, first of all, thanks a lot for making this board live and allow people to understand what they are facing and how to (try to !) face it ...
Here is my (our) situation :
We live in europe (France), where Lyme doesn't seem as well known as in the US.
A few days ago, we learnt, almost at the same time, that my wife had Lyme and that she was pregnant.
- The bite had happened 3 weeks before. But we didn't know about Lyme. We were then alerted by the bull's eye rash, googled it, found Lyme. Tested it the next day, it was positive.
- We learnt a few days later that she was pregnant.
- Doctors gave her Amoxicilin then changed it after 1 week for Ceftriaxon (Rocephin) for an additional 2 weeks. We are in the middle of the 2 weeks of rocephin.
We saw several EMs in different places of the body but they have now disapeared. she has had no other symptoms. So we assume that Lyme is "early disseminated".
I understand that now we need to take good decisions to minimize risks for both her and the baby . Here are my concerns :
1. our doctor (infectious disease specialist) is quite aware about Lyme, did some homework about Lyme and pregnancy. He thinks the 3 weeks of abx should be enough. He saw that some doctors in the US (he read Dr B's guidelines) recommend abx during the whole pregnancy. But didn't see any convincing evidence for treating longer than 21 days. => If you think treating for 9 month is the right thing to do, can you indicate some arguments / documents we can use to convince him. He will be open if we provide solid data. Articles / publications / abstracts would be useful (Dr. B doesn't point to them if I read correctly)
2. Our doctor doesn't think it is useful to test for co-infections. My wife has no symptoms and he says that the tests doesn't work really well ... What do you think ? Any test that work and you would recommend ?
3. Of course, any other piece of advice on the lyme / pregnancy topic would be super helpful.
Thanks a lot in advance for any help you can provide us with
Stephane
Posts: 4 | From France | Registered: Aug 2011
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posted
I do not have any documentation for you, so hopefully someone else will chime in. I just want to say that you should look into treeing during pregnancy. You are lucky to have caught it early. I did not know for 13 years.
Lyme is thought to be transmitted through the placenta, and through breastmilk. I have a daughter who is now 3, and there is a good chance she had it. If I had found out before I got pregnant, I most certainly would have stayed on antibiotics the whole time.
Definitely do some more research. It sounds like your doctor is openminded. The cost of not treating or undertreating is disastrous. So if your doctor does not take this seriously, find one that will.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I wish I'd known I had Lyme during pregnancy..then maybe my kids wouldn't have it.
I would definitely pressure to be given abx through the whole pregnancy. I am not good at researching but maybe someone will come along soon who will have more information you can give to your doctor.
Glad you caught it as early as you did.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Stephane:
I'm so sorry you are in this situation. I do not know how to advise you. Could you arrange a phone consultation between your doctor and an American doctor who experience?
Have you learned how to search a topic on this forum? I know other women have been on antibiotics thoughout pregnancy and have posted previously.
I wish you and your baby the best!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
We had some pregnant members, maybe connect with them and ask which drugs are considered ok for pregnancy.F.e. merrygirl...
Posts: 1834 | From US | Registered: Oct 2008
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posted
My daughter is 5months old and I treated during the entire pregnancy. I was on Ceftin, but it seems more llmd are using 2 abx to treat during pregnancy.
I do not have any articles, but if it were me I would treat during the pregnancy even though you caught it early.
If you have any questions feel free to pm me.
Posts: 323 | From Michigan | Registered: Sep 2006
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posted
Thanks so much for your cheering messages. We do our best to find the right treatment (and someone to give it to my wife).
ktkdonner, ickytricky and searching4truth, I really hope that your little kids who caught it will get better
Marcie, I'll PM you in a few minutes.
It looks like treating through the whole pregnancy is what most of you consider the most logical course to follow. That really ecourages me to push my doctors a bit more...
The issue is that around here in France, I have discussed this with 6 doctors (including some friends of mine who spent time reading litterature about this and one infectionlogist) and no one really found any reason to do more than 3 weeks of abx. But several of them were quite keen on learning more on the topic.
So I wonder why this trend appeared in the US (and doesn't seem to have crossed the atlantic yet). That would certainly help me to convince my doctors around here. Having scientific evidence / articles showing that it helps would be ideal. I guess I would also need such material to set up the call you suggest, ktkdommer.
If anyone can give me some hints it would be great.
All the best
Stephane
Posts: 4 | From France | Registered: Aug 2011
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posted
Stephane, I just looked in Dr B's Treatment guidelines, and page 19 and 20 both describe his recommendation during pregnancy. It says to treat the entire time, and what to treat with. You can find it here:
This is kind of the "standard" for Lyme treatment, as he is one of the doctors at the forefront of Lyme research, and has gotten many people well. It is a very interesting read.
I will look some more, but there is a start for you. I will let you know if I find anything else.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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When you say it is a 'standard' treatment, you mean that this would be what most (or many) well informed doctors do in the US ?
. I have seen those guidelines. And they are the reason why I start questioning my doctors here in France. Here, they seem to agree on treating 3 weeks vs. 9 month as Dr B suggest. So if this is the 'standard' US treatment, I realy need to understand why / proove it to my doctor.
I have sent Dr B's guidelines to my infectiologist who said he read litterature on lyme and pregnancy and couldn't find any article showing that this full pregnancy treatment helps.
So if someone knows any supporting evidence to show my doctor that Dr B's treatment is the thing to do, that would be helpful...
Best
Stephane
Posts: 4 | From France | Registered: Aug 2011
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posted
For early disseminated, the Dr. B guidelines suggest treating 4-6 weeks past symptoms. I would ask the infectious disease doctor if he's willing to do that. Treating the entire pregnancy is for chronic Lyme.
And, unfortunately, it's the same in the US. Very, very difficult to get treatment. It has to do with the infectious disease doctors. They wrote the guildelines and they all have a conflict of interest so shouldn't have been the ones to write the guidelines.
I was very sick. I treated for 3 years and am well today now for two years. At the 21 day mark, I still could not walk. I was not treated early as your wife is.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Momcap, we already searched Medline but did not really find compelling articles, that's why I am also asking here, because it looks like there are many experts !
Sixgoofykids, we discussed Dr. B guidelines with our doctor, he read them and is not fully convinced yet, that' why i am looking for some technical arguments to support them !
thanks a lot !
Stephane
Posts: 4 | From France | Registered: Aug 2011
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posted
A little background: So my married daughter has chronic lyme, is undergoing treatment, has NO more symptoms but not tested Lyme-Free" per her LLMD. She has been in treatment for three years this time. She was probably undertreated the first time and it came back, but not horrifically.
Now for the question: She wants to get pregnant--safely. We are doing our own research prior to her next LLMD appmt so as not to sound totally uninformed. After reading Dr B's guidelines he stated zith is not safe for pregnancy, but I am seeing blog reports that that is one of the two drugs being used during pregnancy.
Can anyone shed some light? Has there been more info since the Dr B's guidelines or am I just reading things wrong?
Posts: 132 | From SE Pa | Registered: May 2006
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Dr. B's guidelines are out of date here. Zith is OK. I'm in the same boat...my wife just tested positive with milder symptoms and we would like another child.
Last week, I called the famous Dr. J's office (lyme pediatrician) and here is a summary of his recommended protocol.
�During Pregnancy: Reduces chances by 50% o 500 mg of Zithromax 1x/day o 300 mg of Omnicef 2x / day
�After Birth: o Get cord blood, placenta, cord tested by Clongen Labs in Maryland Call for a Kit. 301-916-0173 Test for Lyme, Bartonella and Babesia
�When to see Dr. J o Really can�t do much the first year as it is hard to tell if a baby has it. Often, symptoms are Hypotonia (decreased muscle tone) and Learning Disabilities.
My wife is now on the protocol described above.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
I am sooo sorry. I was in the middle of treatment for Lyme an Babs when I found out I was pregnant last Nov. Here is what I can share...I have been ill my whole life. My Mother was as well for most of hers. She is under treatment currently. My LLMD believes it very possible that I contracted lyme in utero. So there is that to think about. In my pregnancy I chose not to continue treatment with azithromycin throughout the pregnancy due to the fact that I had a year of treatment under my belt and my LLMD felt I was probably at low risk of transmission to the fetus. (I wish I had) However...He told me that no way should I breastfeed...I did not. Any risk of transmission is too large. Also I would reccomend having your placenta tested. That way if it is poitive for infection you can easily treat the baby with a short course of antibiotics. If I were in your shoes however knowing what I know about lyme and coinfections and battling them still I would stay on antibiotics through out. Pregnancy depresses the immune reponse to Lyme and you will see little to no symptoms. It masks it. I felt the best I ever had in years...really my whole life through my pregnancy. My doctor warned about post partum flare of Lyme and coinfections and boy was he right. My lyme and coinfections came back with avengence within a week of giving birth and I am struggling to care for my 7 week old son. Beginning treatment again next week after MRI's bloodwork and brain scans are completed. So the point I am tying to make is better safe than sorry. It would be tragic to not continue treatment and have that infection lurking in there still masked by pregnancy but also any risk is to great of one. Your doctor works for you so you should be very stern in that you would like to coontinue treatment if you believe it is the right route for you. Even if baby were to come out fine and uninfected, chances are Mom will have quite an issue on her hands afterwards and a new baby and having to battle this disease at the same time will be quite the struggle and very unpleasant. If you decide not to go forth with continuing treatment throughout the pregnancy I urge you to monitor closely your wife after she gives birth for months to come. If she is having postpartum depression this can be a sign but moreso if she is feeling flulike, or stiff and achey in her muscles and joints...its time to get back to that Doctor and resume tets and treatments...and please...before you make your decision, be sure to really reaserch this. I wish you luck a safe and speedy recovery and most importantly a healthy new Baby and a healthy Mommy too. Best wishes and Congrats on the little blessing. Hope this helped.
Posts: 80 | From RI | Registered: Jun 2010
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posted
Dr. J., the best Lyme-literate pediatrician, has put together a protocol for pregnant women with Lyme. It can be followed with your own doctor.
I will pm you with Dr. J's contact information. Call his office and ask if they can give you more information.
Posts: 8981 | From Illinois | Registered: May 2006
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posted
Can someone please PM me Dr J's protocol for pregnant women with Lyme? My 30 year old daughter was diagnosed with Lyme shortly after she found out she was pregnant. (She was tested because I tested positive a year ago and have the HLA genotype for Lyme) Her C4a is over 64,000! My doctor, now her doctor, just put her on Dr. B's protocol of 1000 mg of Amoxicillin q6h for the next four weeks. If she tolerates that ok, he will consider continuing it. She has already had two miscarriages and they have been trying to get pregnant for several years. She is 15 weeks along and so far all is well. Any help anyone can give us would be most appreciated! Thanks much!
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