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So after 6months I test positive via Igenex .... And I'm pregnant!

Hey guys!
I am currently 33 weeks pregnant.
I posted here a while ago and got tested via a lab and I tested fully negative via westernblot on each band.
I have been having odd symptoms and just knew something was up so I decided to send my blood to igenex via a specialist in the uk... It came back igm positive ....
You can imagine how heartbroken I feel as I contracted lyme in the first trimester and only have found out now! Please don't reply with scary stories I know the unfavorable situation I am now faced with and really haven't posted for info about all of these stories as I have already seen them.
When I went to the specialist he started me on amoxocillin (500mg 3x a day ) so I have been on them 3 weeks and will continue to take them until baby is here so all together roughly 11 weeks of treatment?!do you think this will make any difference to my pregnancy outcome ? I know it's best to take the med rather than not but its just scary how late I found out.
Will this dosage help me in anyway? What treatment will I need after the birth ( I currently have mainly neuro symptoms ) . Also I have requested a kit from igenex to test baby's cord. How will I go about treating him  etc? I don't like the 'wait for symptoms to appear ' approach so will start treatment as soon as i can for him.

Thanks guys
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Avatar universal
Sorry to hear you're feeling more symptoms. It's very common for people with Lyme to go up and down for periods of time.  Have you had IGeneX testing?  It seems that many people with late stage Lyme test false negative on the CDC two tier testing protocol. It's quite controversial.

Nervousmummytobe started this thread a couple of years ago. Haven't seen her around here in a while.
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Avatar universal
I am new to lyme myself and i dont have any text book quotes to try to make you feel better. I just wanted to tell you that you are doing everything you can for yourself and for that baby! You have to stop looking back and only look forward. If your child does have lyme...stay positive.Get him the treatment he needs and stop blaming yourself. You are going to be an awesome Mom.

Best of luck to you. I will be watching this site for updates. They have  a wonderful group of people on here that will help you as much as they can. So dont be afraid to ask anything.

Update on myself: I have an appointment with a Rhuematologist on Wenesday next week. Im hoping to get more testing asap. I was feeling better for a couple weeks but alot of the symptoms i was having are starting to acure again. Im hoping to get somewhere this time. Wish me luck and hope you all have a wonderful day!
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Avatar universal
oops, the site double posted my message ... it was having the hiccups like I read babies do sometimes before they are born ... but mine never did.  It must feel funny.  :)
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Avatar universal
Babies can feel pain, so I read, but don't assume the baby has Lyme, and don't assume he's in pain now.  You haven't mentioned that he thrashes around now, so I would think no, he's not suffering.
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Avatar universal
Babies can feel pain, so I read, but don't assume the baby has Lyme, and don't assume he's in pain now.  You haven't mentioned that he thrashes around now, so I would think no, he's not suffering.
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Avatar universal
Being agitated and cranky is definitely a common symptom of Lyme.  

When I was pregnant, my life was busy falling apart in just about every way possible (except I didn't have Lyme yet), and I just sailed through everything like nooooo problem!  I was totally calm, and normally I'm kinda cranky.  My doc said I was so mellow because of the high levels of estrogen that pregnancy produces, which gives a sense of well being.

So it's not you:  it's the Lyme.  Absolutely.  So don't blame yourself, and know that it will go away when you are treated.  Your normal self will be back.  

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Avatar universal
Also ... Does anyone know whether the baby can feel pain etc? If he has got lyme from me will he be in pain when he is born? Without me knowing ! This terrifies me
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Avatar universal
I hope and pray each day he will be fine ! Not long until he is here !

I have been extremely anxious and aggatated since lyme .... I am never angry no matter what yet since this I have been shouting at people for very odd reasons! I think it could be pregnancy hormones also lol

X
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Avatar universal
"I'm so scared my baby will die I don't know why I've become consumed with this"

Why? Because you are a mother and you care ...

... and because Lyme has mental and emotional effects directly as a result of the infection.  It happens to many, many of us and is a common symptom.  I wasn't pregnant, and I was very anxious too.  It's a biochemical side effect of the infection.
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1763947 tn?1334055319
She thinks she got it before but either way, your baby is going to be fine. Having 2 kids of my own, and spending 4 months on bed rest due to an amniotic fluid leak with the youngest,  I understand your concerns but try not to let it take away from the joys of being pregnant. It's a special time.
We are here for you anytime you need to vent!
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Avatar universal
Wow that is promising to hear! Thank you!
Did his mum acquire it during pregnancy or before ? I'm so scared my baby will die I don't know why I've become consumed with this
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1763947 tn?1334055319
I have a friend whose son got Lyme in Utero 28 years ago when all the research wasn't like it is now. He is a perfectly healthy 28 year old. He did have to take abx not as an infant, but is doing great now!
I know it's hard when you are pregnant, everything worries you, but agree with everyone above and all should be fine with amoxicillin.
The best of luck!
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Avatar universal
Thank you guys!

The worst part for me is not knowing! In gonna have to give birth which is scary enough without fully knowing what's in store for me my partner or my family.

I feel like lymes disease is hard to understand . It's bacterial yet it doesn't solve easily as it goes into all different forms etc! I just hate what it has done to me already and I hate that's it's out an innocent life at risk. I feel guilty. My family all feel guilty too as they all told me to shut up and put up as they beloved my issues were stress and anxiety. Anyway no one can be blamed right? Although I will never forgive myself if something is seriously wrong with baby :(

A few studies show still birth occurred after first trimester infection ,  this is what is freaking me out. Some baby's went to term and died others at 35 weeks , one at 20 weeks , one at 42 weeks and in guessing they had what appeared to be 'normal' baby's and something went wrong at the end. The doctor I saw yesterday tells me that heart defects would have surfaced by now especially as I had a technical detailed scan yesterday - is this true ? I don't know ? Maybe he is trying to make me feel better?

Little man keeps hiccupping I can feel it everyday and I'm encouraged by this it means he is practising breathing and his diaphragm is practising also his lungs . Hopefully he is ready to meet me .

I will be induced between 38 and 40 weeks and from what Rico says I may ask for nearer 40 weeks but just but over the due date.

Yes I also experienced this negative staff response at breakspear .. The doc said to start amoxicillin despite not knowing tat result and my medicine took 4 days to come because the rception and pharmacy kept sending it to the wrong address.

I make sure I chase them now . I rang them yesterday asking for another prescription as I figured I only have a month worth left meaning I would run out before my next appointment . So I've given plenty of notice.

My partner is being very supportive and he has had a hard time too! I sometimes forget he is the father and is hurting just as much as I am. We've never had to deal with such an issue . When I first found lymes disease he thought I was crazy . But now he is willing to learn. I'm just scared I won't be delivering the perfectly healthy baby he deserves . But we will love him Ní matter what right? And the sooner e gets treatment the less issues he may have due to lyme in the long run? Is that correct?

I do appreciate everyone's help! I'm hoping I've made some friends in all of you? And I'm hoping in a few weeks time I will be able to send a pic of me and baby and tell u ... It was all okay ... Sure we don't know if he has lyme or not yet but wa alive he's not in pain hopefully and he has a mummy who doesn't back down when she knows something isn't right :) xx
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Avatar universal
It sounds like you are plenty bright! You have done your research and followed your own instincts to get answers when your doctor was skeptical. Even your decision to only get the IgeneX cord blood test is shrewd. ;)

It sounds from the tests that your baby is in good shape.  I would seriously doubt he'll be stillborn because of Lyme. If he weren't going to make it another five weeks, I would think he'd be showing signs of trouble already.  You'll probably want to ensure that you don't go past your due date. That increases the chance of unexplained still births.  Do you have a plan with your OB that you'll be induced if you don't go into labor by the due date?

Since you were officially diagnosed with Lyme and put on amoxicillin, your OB should be on alert for any issues the newborn may have on arrival. But then they are anyway. Lots of otherwise healthy newborns have respiratory issues, too, and the nurses and doctors know how to deal with them.

The woman who heads the Neurological LimboLand user group also goes to Breakspear. After 8 years of progressive illness, she was finally diagnosed there with Lyme and a coinfection. I don't mean to speak for her, but she has told of a great experience with a doctor, and then very disappointing experiences with the staff, including mistakes that delayed her treatment for weeks.  You might want to follow up with them on anything and everything to make sure nothing gets missed.

That is terrific that you're lining up post-natal treatment. You haven't had Lyme all that long, and so I doubt you'll need IV abx. Just ask the doctor who treats you for Lyme what you need to do for your baby. I am confident you will get him what he needs! :) I can already hear the Mamma Bear in your posts!
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Avatar universal
No, I don't think you are being too negative, and it is good you are proactive about it.

Amoxicillin is one of safest antibiotics to take duirng pregnancy. It does cross placenta.

Dr. Burrascano guide listed Amoxicillin and Cefuroxime to be safe to take during pregnancy. It is not clear if Augmentin is safe too, the guide didn't states if it is safe during pregnancy.

Other choices listed in the guide  that can be used during prengancy are Ceftriaxone (Rocephin) or Cefotaxime IV.

Rocephin IV is one of the best antibiotics for neuro lyme, and is safe for pregnancy.  Here in the United States it is very hard to get insurance to cover Rocephin IV beyond 4 weeks. I don't know about your country.  

However oral antibiotics can help with neuro lyme, and some do recover without ever having IV treatment.

100% for sure it hasn't gone to baby? Can Co infections passed on to the baby?  I don't know to be honest...but I would think adverse outcome should much reduced since you started the treatment and you haven't been sick too long either.  
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Avatar universal
I just seen these messages now. I'm not very good on the I phone !

Thanks for your responses!

My doc who diagnosed me based on symptoms is a private doctor who works in a hospital which specialises in 'diseases associated with pain' it's called , Breakspear . I went to him in desperation when my regular gp told me I was a 'hormonal mess' ... He took symptoms and ordered the igenex test and I had band 58 , 41 and 31 on the Igm and also had a few 'IND' bands ... My igg was negative but I had a positive 41 and a ind 23 and ind 34 and 39 so it's basically positive.

I rang him yesterday and asked if I could make an appointment for after the birth to move to agressive treatment as most of my symptoms are neurological apart from the muscle soreness. So I hve an appt with him after the birth to move towardss another treatment option, any suggestions? I have not tested for co infections as I Can't afford it but I hope to cover my back with the possibility of these.

Can confections pass over?

I have also made an appointment for my baby at breakspear fr when the crd blood test is back in so that maybe I can be advised on a mild treatment to start him on. Do you think think this is a good idea?

I'm not a very bright person so I'm finding this all hard to understand but I am doing my best which I hope is enough.

I'm really cared baby will be still born or defect? I had a scan yesterday a really intensive one and his organs look good they checked his heart chambers and blood flow etc . His measurements also look okay. I have read some baby's are born with respiratory distress which worries me as there is no way to test lung function in the womb.

I also demanded a half hr stress test at the fetal unit in which baby's heart rate was monitored and assessed over the course of Hal an hr and doc says baby is happy and content in there.

Do you think I'm bing too negative? I feel really guilty about all of this? I'm scred I won't enjoy my baby's youth or tht he won't enjoy it because of this .

Is amoxicillin used for neuro lyme ? Doc says although subtle it does penetrate the CNS and will be doing some kind of good whilst I'm on this . ( my only choice while pregnant)
He also assured me the baby I getting the amoxicillin trough me .

He wants to run the cord test through their lab but I said no as I have already ordered the igenex one as I tested negative on the regular lab tests. In scared thy wont take an igenex result seriously as living in the UK wih lyme being 'rare' they might belie that if there test is negative then it's negative.

Seeing as I had an actor infection throughout pregnancy which was undetected for 5 months is it one hundred percent that it has gone to baby? Wishful thinking but is there anyway baby could be lyme free?


Sorry for tons of questions x
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Avatar universal
I just seen these messages now. I'm not very good on the I phone !

Thanks for your responses!

My doc who diagnosed me based on symptoms is a private doctor who works in a hospital which specialises in 'diseases associated with pain' it's called , Breakspear . I went to him in desperation when my regular gp told me I was a 'hormonal mess' ... He took symptoms and ordered the igenex test and I had band 58 , 41 and 31 on the Igm and also had a few 'IND' bands ... My igg was negative but I had a positive 41 and a ind 23 and ind 34 and 39 so it's basically positive.

I rang him yesterday and asked if I could make an appointment for after the birth to move to agressive treatment as most of my symptoms are neurological apart from the muscle soreness. So I hve an appt with him after the birth to move towardss another treatment option, any suggestions? I have not tested for co infections as I Can't afford it but I hope to cover my back with the possibio
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Avatar universal
Yes, Cambridge in ... Oxfordshire?  My English geography is a little shaky, but definitely England.  If you look at the first page of this document:

http://www.ilads.org/files/compendium07/Walsh.pdf

... it will give you the particulars.  The author is:

Colin A. Walsh MB BCh MRCPI
Specialist Registrar in OB/GYN
Addenbrooke's Hospital, Cambridge, UK

His paper presented at the ILADS meeting is "Pregnancy and Lyme Disease."

If he is not accepting patients, perhaps his office can give a referral to another MD familiar with Lyme in pregnancy.

One of the slides in the presentation says:  "Whether transplacental transmission of B. burgdorferi poses a threat to the fetus remains unclear." -- but this paper was written some years ago, and research has continued, with more being discovered and worked out all the time.  The important thing is to find an MD who is current on Lyme and babies.
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Avatar universal
Regarding your treatment... Is your doctor sympathetic to treating Lyme for an extended time?  If so, your doc could follow the ILADS treatment guidelines.

The species of Borrelia in Europe are different than the US. Even b.burgdorferi (the only species in N. America at this point) in Europe is more likely to cause neuro symptoms. Another species called b.garinii is also common in Europe and causes primarily neuro symptoms. While disease presentation is different with different species, my doc tells me that treatment follows the same protocol of adjusting meds based on the patients's symptoms and progress. (I asked because I have Aussie Lyme but live in California. I have neuroborreliosis.)

If you are not confident your doc can treat you successfully, or if your doctor wants to stop abx after you give birth, then you need to find a LLMD as soon as possible. You'll probably want to figure this out before the birth. I have read stories of women who had Lyme and didn't know it and really went downhill after giving birth, which is a big stressor on a body.  You haven't been sick for a long time, so as long as you stay on abx, you should be in pretty good shape.

Here is the link to Dr. Jones website.  There is some useful info on it.
http://www.drjoneskids.com/

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Avatar universal
Amoxicillin is the right thing for a pregnant woman with Lyme. You cannot take Doxycycline when pregnant.

I have heard many good stories of kids who got Lyme in utero who are doing great with antibiotics. Treatment makes all the difference.  Planning to do the cord blood test is very wise.  But if the baby tests negative, there is still a chance of infection. If s/he tests positive, then s/he will need amoxicillin. I have no idea for how long...are you aware of Dr. Jones in Connecticut? He is a pediatric Lyme specialist who probably does phone consultations.

My daughter was on a prophylactic (reduced) dose of Amoxicillin for just over two years to prevent bladder & kidney infections. She had no adverse effects at all. She also never developed a bacterial infection during those two years. :).  I am sure killing Lyme requires a higher dose, but as long as there isn't an allergic reaction, amoxicillin is really safe.

Regardless of test results, you will want to watch for delayed development. Small children and babies cannot communicate what they feel, and so outward signs are important, even if they are subtle. A pediatrician's tendency to give a child time to grow out of a delay can be harmful in a case of Lyme.

You will definitely need more treatment after you give birth as just 11 weeks of amoxicillin after 5 months of infection has a good chance of leaving some bacteria behind. There is another Lyme mom on this forum (hopefully she will see this) who has recommended against breast feeding, as spirochetes have been found in breast milk. She had Lyme before she even got pregnant.  

I think getting tested at IGeneX was an excellent decision! It sounds like you will be a good advocate for your baby!
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Avatar universal
Is that Cambridge in the UK?
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Avatar universal
Sorry, the questions and answers are getting jumbled.  It all comes down to the same advice:  find a Lyme specialist and don't delay.

I would start with the fellow at Cambridge and, if he doesn't treat, ask his office for a referral.  Tell them how far along you are in pregnancy.
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Avatar universal
My friend never knew when she was infected.  Many of us never do, because the ticks are the size of poppy seeds and many of us don't get the legendary 'bullseye' rash.  

Too many MDs will not diagnose or pursue a diagnosis of Lyme without seeing the tick and the rash, but that misses many infections.  That is why a Lyme specialist is so important to see and soon.
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Avatar universal
My friend didn't know when she got it ... many of us never do.  

I never saw a tick or had a rash, and I suspect looking back that I probably had a low-level case of Lyme for several years, then got re-infected with Lyme and a co-infection (another disease the Lyme ticks also often carry) and that's when I got very ill suddenly.  Everyone is different, the mix of co-infections is different, our immune systems are all different.  I tried for a while to figure out the particulars of when and where I was infected, trying to make sense of it all, but ultimately I gave up and focussed on what infections I had and what to do about them -- the rest is a mystery, and one that (if solved) won't help the cure.   So focus on the diagnosis and the cure looking forward, and for your baby, prevention or treatment in utero.

A Lyme specialist can say better what the chances are that the Lyme crossed the placenta to the baby, but what matters now is to take all appropriate action to treat and/or prevent infection.  

Whether it's treatment or prevention mode, I don't know that the doc's actions would be different before the baby is born, but that is for a knowledgeable MD to say -- but this is a developing area of medicine and science, with much still being discovered.  That is why I would find someone like the MD at Cambridge who thinks 'big thoughts' on these topics and is 'cutting edge' in the field.
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