posted
I just found out that one of my bands are postive 39 igm, and my doctor wants me to start amoxy for 10 days. I am 3 months pregnant, what are the risks and chances that my child gets infected and is there any way to find out before the child is born. I hear it is way more danger to have got lyme while pregnant, my situation is a bit different, I think I have had it for over a year now and we just found out. Any adivce please?
Posts: 59 | From california | Registered: Aug 2007
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
This information was given to me by Dr. B before he retired.
Lyme Disease and Pregnancy
It is well known that B. burdorferi, the agent of lyme, can cross the placenta and infect the fetus. In addition, breast milk from infected mothers has been shown to harbor spirochetes that can be detected by PCR and grown in culture.
The Lyme Disease Foundation in Hartford, Ct had kept a pregnancy registry since the late 1980's. They found that if patients were maintained on adequate doses of antibiotic therapy during gestation, then no babies were born with Lyme. My own experience over the last ten years agrees with this.
Dr. J, a pediatrician who practices in Connecticut, has treated and kept records on literally hundreds of babies born with Lyme Disease, having contracted it as an intrauterine infection. He treats theses children with antibiotics and finds that they generally do well, provided that treatment is aggressive and of adequated duration. Occassionally, he has to retreat theses patients as lyme infections are chronic and can tend to recur.
The options for treating the mother include, oral, intramuscular and intravenous therapy.
Oral regimens include amoxicillin, 1000 mg every 6 hours, and cefuroxime axetil 1000 mg every 12 hours with food. We always document peak and through serum levels at the start of gestation and at least once more during tratment. We like to see a peak level above 10, with a through at least 3. These level apply for either medication.
For patients wo are very ill, or in those who cannot tolerate oral medications or achieve adequate level, then parenteral therapy is given. Choices include benzathine penicillin (bicillin LA) 1.2 milllion units IM three times per week. Intravenous can inclue ceftriaxone, 2 g IV daily, or cefatoxime, 6 g daily either as a continuious infusion or as 2 G IV q 8h.
During pregnancy, symptoms generally are mild as the hormonal changes seem to mask many sympotms. However, post-partum, mothers have a rough time, with a sudden return of all their lyme symptoms including profound fatigue. We advise against breast feeding for obvious reasons as mentioned above, and we always advise help in the home for at least the first month, so adequate rest and time for needed treatment are assure. --------------------------------------------------------------------------------
Posts: 1603 | From ny | Registered: Aug 2006
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posted
Do you know if I continue the amoxy for the the entire pregnancy? Right now my doctor wants me to take it for 10 days and re-test.
Posts: 59 | From california | Registered: Aug 2007
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WildCondor
Unregistered
posted
Hi there
Amoxy for 10 days is rediculous, sorry to have to tell you that. If you have Lyme disease, and you are already pregnant, you need to treat for the entire pregnancy. Amoxicillin levels must be checked weekly peak and trough and keep on top of those levels. Some folks need IV to attain the high enough levels needed due to increased blood volume. You can also use IM Bicillin.
Please get to a LLMD and soon, if you need help, post and we will help you.
Don't panic, but definitely get the ball rolling to see a LLMD ASAP and protect your babe. LOL Listen to Savebabe
posted
I am seeing a LLMD, I think he meant I will take it for 10 days, re-test again and continue.
Posts: 59 | From california | Registered: Aug 2007
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tailz
Unregistered
posted
I agree - you need to take abx longer than 10 days for both you and your baby.
And PLEASE get everything rolling with an LLMD before your baby is born. I had MAJOR post-partum depression for about 6 months after my daughter was born. Ironically, while I was pregnant, I felt better than ever with Lyme.
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Did you get lyme during or before pregnnacy? Also was your baby born ok?
Posts: 59 | From california | Registered: Aug 2007
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WildCondor
Unregistered
posted
WOw. Well, if you have Lyme, you are supposed to treat for the entire pregnancy to protect your baby. Then at birth you must have the placenta, urine and cord blood checked for Lyme.
I doubt any LLMD would truly only Rx 10 days worth of antibiotics for Lyme in any form. Even if you began treatment the day you were bitten, it is typically 6 weeks of prophylaxis. 10 days of Amoxicillin is also illogical because it does not even bracket one growth cycle of the spirochetes. If you are infected, then you must treat the entire pregnancy. You must also make sure your blood levels are high enough. Make sure you have a real LLMD, and that he/she knows exactly what they are doing. Please read up on this. Google Lyme and Pregnancy, and do a search on this site too.
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posted
He said I would take it for 10 days re-test and continue with the amoxy again. He says 1 band was positive so my case is borderline.
Posts: 59 | From california | Registered: Aug 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Sounds like what he is doing is an abx challenge....you take them for 10 days to increase immune response, then test again. Then, based on what he sees, he will treat accordingly. I see Dr H. too, and I know his office doesn't always communicate things terribly clearly.
But please have faith in him.....he knows what he is doing...is the best LLMD we have out here in CA. He trained with Dr B, Dr H (NY) and Dr J, the renowned pediatric specialist. I am thinking about another baby too, and would be totally confident having Dr H treat me through it. If you're really concerned, consider making an appt with Dr J in CT....we did this for my 2 yr old.
Posts: 3528 | From US | Registered: Apr 2007
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posted
So I am on my 5th day of amoxy and the only thing different from last week is that my neck is in the worst pain ever. I am to re-take my blood test in about 10 days.
I also see an infectious disease doctor and he said that no way no how that I have lyme. He said you need 2 bands on igm and 5 bands on igg in order to meet the criteria. I even showed him my paper work and he was not convinced for 1 sec that I have lyme. He said he would even do another blood test and send it to Mayo Clinic to test.
All this stuff is really taking a toll on me, I have one doc saying I do, and I am taking antibiodics for it and and one doc saying no I don't.
So frusterating already.
Posts: 59 | From california | Registered: Aug 2007
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
i know my personal experience with this may make my advice to you sound extremely passionate; sorry, but here it is:
do whatever you have to do to make sure you stay on antibiotics for your entire pregnancy, period.
there is absolutely no point whatsoever in NOT taking the antibiotics. NONE. The risk of passing on Lyme to your baby is entirely real, weighed against the non-existant risk to either of you in taking amoxy.
I was infected 5 months pregnant,was given THIRTY days of amox. Five year later we know my son has congenital Lyme, and I have chronic Lyme from being so grossly undertreated.
Take the antibots. Listen to WildCondor and make sure the placenta and umbilica cord are tested at birth.
If you don't, you will be haunted every day watching for symptoms in your child, and will never forgive yourself for not acting on the knowledge you have to prevent passing this terrible disease to your child.
Call Dr. J!!!!
dillyilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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quote:Originally posted by sometimesdilly: If you don't, you will be haunted every day watching for symptoms in your child, and will never forgive yourself for not acting on the knowledge you have to prevent passing this terrible disease to your child.
Call Dr. J!!!!
Ditto to that! Steer clear of ID ducks. Please!!
Read thru this link and see how many people have thrown their ID drs into the "pit." REAL harm can be done to YOU and YOUR BABY if you listen to this dr and/or Mayo.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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tailz
Unregistered
posted
I think I had Lyme BEFORE I had my daughter. I think I may have had babesia prior to Lyme even.
I had my first strange rash at the age of 20, and another strange rash - identical to the first one - at the age of 24.
I had my daughter tested - she's 20 now - she DOES have 2 bands, though she doesn't believe me that she has chronic Lyme.
She has anxiety problems though like I did my whole life, and she also has OCD, though I think OCD may be electromagnetic field related.
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Marline -- I have to give my spiel as well:
I had no symptoms until after my son was born 2.5 years ago...then 3 months after delivery, I knew something was wrong. I spent 6 months going to ID docs, primary care, postpartum depression, rheumatologists,etc, got a million tests, was told CFS, and fibromyalgia. Then when I got the Lyme dx via Igenex and THE FIRST DOCTOR out of any of these to ask me about my lifestyle (did it include hiking, etc? yes, big time!), I spent a year in denial ("there's no way I could have Lyme disease! How totally random!"). In the meantime, new symptoms cropped up every month. Now I'm 8 months into treatment and watch my son like a hawk (we don't think he has it, according to Dr J in CT).
DEFINITELY stay on the abx. The fact that your neck hurts sounds like it's hitting something. There really is no alternative for a healthy, Lyme free baby. You do not want to pass this on to a child. The Mayo Clinic and inf. diseases docs have NO CLUE and are in complete denial that the non-acute version of this disease is a remote possibility - because they go by the CDC rules....and if you investigate those you'll be convinced right quick that something is not right there......
I know exactly how you feel, because I was there too. For a YEAR. But please, please trust Dr S.H., who knows every manifestation of this illness and the co-infections that go with it. I know it's hard not to trust the mainstream guys who are so convincing it's not Lyme......I let them convince me too! And I totally regret that.
This is a sneaky, evasive and disabling illness for which there will be no cure for a long time. Please don't take a chance on passing that on to your child! Stay away from the ID docs!
My humble opinion.
Posts: 3528 | From US | Registered: Apr 2007
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I have tht worst headache and neck pain I have ever experienced, could this be the herx reaction?
Posts: 59 | From california | Registered: Aug 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Dear Marline,
Yes, neck pain and headache are a classic herx reaction.
In my own experience with lyme and treatment,
That is EXACTLY what you would expect to feel if you were treating lyme and killing off the bacteria.
Good advice above-- please be sure to see an llmd and stay on amoxicillin! Best wishes.
quote:Originally posted by Marline: Thanks for all the infor and adivice.
I have tht worst headache and neck pain I have ever experienced, could this be the herx reaction?
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Yup, what everyone else said!!! My little daughter did get Lyme from me and had to go on antibiotics for 3 years and had heart problems. She has been in full remission now (thanks to Doc J and our angel LLMD) for almost 7 years BUT if I could have avoidedit? I would have. My little one is healthy- I was on amoxicillin throughout that pregnancy.
Take care- Sincerely,
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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DEFINITELY stay on the abx. The fact that your neck hurts sounds like it's hitting something. There really is no alternative for a healthy, Lyme free baby. You do not want to pass this on to a child. The Mayo Clinic and inf. diseases docs have NO CLUE and are in complete denial that the non-acute version of this disease is a remote possibility - because they go by the CDC rules....and if you investigate those you'll be convinced right quick that something is not right there......
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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How could have avoided it though? Also did you get lyme during pregnancy or before? Is your daughter ok now? What kind of heart problems did she have? Did you take amoxy the entire pregnancy?
Posts: 59 | From california | Registered: Aug 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
She got it from me breastfeeding but may have been congenital only activated by the breastfeeding- I don't know. They thought I had lupus when I was 21 and then that went away with abx for pneumonia (the suspected lupus). 8 years later I moved to Aptos, got 3 tick bites, got rash, and my lupus was back AND THEN SOME! it was Lyme and HME and babs. They told me I could keep breastfeeding and that my daughter could NOt get it from me. But she began to be symptomatic and developed chronic bowel problems, autistic symptoms and joint pain. She was positive for Lyme through LUAT and positive for babesiosis repeatedly. Knowing what I know NOW I would have stopped breastfeeding her IMMEDIATELY when Igot sick or went off abx- they told me I had post Lyme syndrome and that it was okay to breastfeed.
ANYWAY, she developed a valve problem, MVP, that had NOt been there before- she had a murmur at birth and her heart had been checked out- and her MVP got better with mepron for Babs-
My younger daughter, I was on amoxicillin the entire pregnancy and am breastfeeding on amoxicillin-
4500 mg a day
And she is doing great, has since day 1. Many pregnancies on amoxicillin have been done locally with great results with all- no complications-
So- to answer-
CaliforniaLyme,
How could have avoided it though?
By stopping breastfeeding or mananging to stay on abx whole time- I berastfed her for MONTHS while I had active Lyme-!!! with docs okay (dumb docs!)
Also did you get lyme during pregnancy or before? Got acute tertiary Lyme when baby was 1 but I wonder if I had been infected a long time before her birth (also had 5 miscarriages which makes me wonder).
Is your daughter ok now?
My daughter, Evan, 10, is SPLENDID*)! She is top of her school academically, in the play Willy Wonka very happily playing an Oompa Loompa, she does piano, voice, horseback and girl scouts and has a bunch of friends and a crush for FOUR years on the same little boy- JH!
What kind of heart problems did she have? MVP and still sees a pediatric cardiologist to make sure it does not get worse-
Did you take amoxy the entire pregnancy?
with my second daughter- Isadora- absolutely*)*)!! No problems-
Also the pregnancy with my older daughter, following 5 micarriages, I was on bedrest for 7 months and had 2 surgeries, a dermoid and pre-eclampsia!!! With second child, on abx, no problems at all, wonderful normal prgenancy*)!! great-
Take care- It must be confusing being in your positiion but I can assure you that of the two standards of care- they are basically, 1. cheap and no care 2. we do care
Sincerely,
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
So I finished my 10 days of amoxy and I still have aches and pains im my body. I am waiting to do another blood test in a week. So what is my doc looking for in this second blood test?
I have my paper work now, my results were:
igm- 39+ 41 IND
igg- 41+ 66+ 39 IND
Posts: 59 | From california | Registered: Aug 2007
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I am back to give some updates. I am 17 weeks pregnant now and most of the nasty symptoms that I was experiencing before have gone away for the most part.
I did my second set of bloodwork only for the IGM Western Blot, my results were:
IGM
30+ 41+ 39 IND
So now they want to do the 30/31 KDA test because the person who called me said that if band 30 is positive then they do the 30/31 KDA test, and they will know for sure if it's lyme or something else.
My results the first time around were:
igm- 39+ 41 IND igg- 41+ 66+ 39 IND
He wants me to start the amoxy again until the results of this test come back.
Any Advice?
Posts: 59 | From california | Registered: Aug 2007
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
You should be on meds now!!!! Many pregnant women feel fine even thought they are still infected.
Read my prior post in this thread. The information was given to me by one of our top llmd's. Please listen to him and find a llmd, it will save you a lifetime of regrets and pain.
Posts: 1603 | From ny | Registered: Aug 2006
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posted
I don't understand why your dr is questioning the positive on the Band 39!!!!
"So now they want to do the 30/31 KDA test because the person who called me said that if band 30 is positive then they do the 30/31 KDA test, and they will know for sure if it's lyme or something else."
What test is that???
Was your Western Blot from Igenex??? They test for bands 30 and 31 with their regular WB.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
I have no idea what test that is, he just said if 30 or 31 are positive then they do a 30/31 KDA test and they can see if it's lyme or something else, they wont know what it is if it's not lyme, just that it's not lyme.
Yes, my test was from Igenex. They tested 30 and 31 but this is a different test they do only if 30 or 31 are positive.
I know I'm confused too. All I know is I'm starting amoxy tomorrow again.
What is the worst case scenario for me? What happens if the baby is infected?
Posts: 59 | From california | Registered: Aug 2007
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posted
But in a worst case scenario if the baby has lyme, will it have birth defects or other serious problems? And how would I know>
Posts: 59 | From california | Registered: Aug 2007
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posted
Dr. S. H. called me yesterday and said that my 30/31 kda confirmation test was a negative and to stop taking the amoxy. He said that means that I don't have lyme. What do you all think?
Posts: 59 | From california | Registered: Aug 2007
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quote:Originally posted by Marline: But in a worst case scenario if the baby has lyme, will it have birth defects or other serious problems? And how would I know>
I can't answer your last question, but I can answer this one. I know many of the posts here have been very cautionary. I know some people have had very sad situations. But please do not fret over much. My entire family has tested positive for lyme in one fashion or another, including my 9 yo step-dd, my 5 yo, and 2.5 yo. Most likely my newborn is also positive. Even though trying to prevent, we became pregnant shortly after beginning our lyme treatments last year. I was not able to take abx while pregnant. I herx'd badly and the baby's heart rate had some serious accelerations while I was on ABX. All that said, I have what seems to be 4 very healthy children. They have hit every milestone ahead of the game. My daughter was talking in complete sentences BEFORE 12 months of age, my son by 18 months. My son was crawling at 4.5 months of age and could accurately pitch a ball consistently to a target by 2 years of age.
There are the potential for problems with lyme. I'm not dissuading you from treatment. However, I hope this our story will give you some peace of mind.
Now as for fatigue after the baby is born - this I have. Please start lining up people to help you after the baby is born. The first few weeks I was feeling great. By 6 weeks I was very fatigued. By now - 2 months - my house is a pit of dirty and clean laundry. I'm emailing my family now to call in re-inforcements.
Posts: 101 | From USA | Registered: Apr 2007
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I have a daughter that had Lyme VERY bad before she was pregnant, (we didn't know it) when her baby was born she tried to nurse her but the baby wouldn'g have anyting to do with it. Baby had very low birth weight, 5lb 9oz and they had to work on her for a very long time to get her stable.
Besides, my daughter didn't have much milk anyway. The baby had to be fed with a medicine dropper as she would get sick and do the projectile thing every time she was fed. She wouldn't eat solid foods when it was time and it was a full time job to get that child to eat anything! She was born with anorexia.
She had lots of other things that my babies didn't have and I just kept saying something isn't right with this baby. We took her to the pediatrician about once a week or more!! I am sure he thought we were nuts.
He sent us here and there for tests on her eyes, tests on her acid reflux she didn't have and so on.
My daughter was diagnosed with Lyme when the little one was 3 she is 5 1/2 now. As soon as my daughter was diagnosed I knew what had been wrong with the baby so we took her to CT to see Dr. J and then Dr. H followed up with her. Dr. H insisted we take her to see Dr. J and said after that if needed he would work with Dr. J. Both MD's are angels as far as we are concerned.
Listen to Dr. H, he knows what he is doing. He and Dr. J got that little one in tip top shape. Of course we have to watch her to make sure she stays sx free, but she is healthy and isn't having the eating problems she had at birth.
Good luck with that baby and please do listen to Dr. H and please stay away from those crazy Infectious Disease quacks unless Dr. H tells you to see one.
Hugs,
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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