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Avatar universal

Am I definitely going to pass lyme to baby?

Hey I wondered if anyone can help!
I am very negative at the moment ! I'm 35 weeks pregnant .. Caught lyme in first trimester and only got diagnosed a month ago and have been on amoxicillin now since diagnosed and will be until the birth of baby.
I am aware that I fall into all 'unfavourable ' outcomes in regards to pregnancy outcome but I feel I need some kind of hope to hold on to ! I know what the odds are and the case studies etc.. And I have prepared myself for a congenital lyme baby but am I completely doomed? As in am I definitely going to have a really bad outcome like a still birth or neonatal death ... If baby has lyme I feel strong enough to cope and deal with this but I ant cope with loosing my baby..... Has anyone got any words of hope for me ?
All studies note bad outcome from first trimester infection which is when I caught it .... But I really need some ray of light or hope to hold onto I'm really struggling
Thank you
70 Responses
Avatar universal
Because Lyme is an infection that is still not well understood by many in the medical profession, and because research continues on the transmission and treatment of Lyme, I would say from my reading that it is possible *but not certain* that Lyme will be transmitted to your baby.

I think I posted here previously about someone I know who did not know until after her baby was born that she had Lyme, and that child today is healthy and happy and wonderful in every way.

I think (but have not researched it) that Lyme can be passed to the baby but it is not certain that it will be.  The important thing is that you know you have Lyme, so that your baby can commence treatment immediately after birth if the baby does have Lyme.  Having a pediatrician who understands Lyme and is ready to jump on the situation immediately is what I would do to prepare for the birth.

There is indeed hope that your baby will be fine, and try to keep good and positive thoughts in your mind, looking to the future.  I would get my docs lined up and then stay positive.  Meditate or do whatever helps you keep a good frame of mind, because that affects the baby too.  We are keeping you in our thoughts and sending you all good wishes --  hang on!  and keep us posted.
Avatar universal
You can try to get in touch with Dr. Charles Rays Jones, he deals with the case like yours.  Your doctor also can consult with him.

https://sites.google.com/site/drjoneskids/home
Avatar universal
Thank you so much fr your kind response. I am a very negative person ... Which has its pros and cons .. Pros : it got me my diagnosis eventually because I kept thinking no I am I'll I'm not stressed or hormonal something is going on in my body. My determination got me my diagnosis although it took 5 precious months ! .....

I've kind of accepted that baby will most likely have lyme but I'm trying to fid hope that the lyme hasn't caused any defects of organs etc and that if the lyme has gone to baby it has hopefully effected in a way that will be treatable after delivery . I was wondering though ... Who would treat a baby? If the cord blood test is positive wil anyone actually be willing to give a young newborn treatment?

Also.. I have been on amoxicillin a month now and will be through the pregnancy so ( ten months in total) will this make any difference for baby? As in, are these antibiotics going to placenta and helping at all ..... I'm so wrecked from this all :(
Avatar universal
Hey I wish there was an English Dr Jones ... I'm in the UK so I have no way of getting to him . And I believe he only treats on symptoms so baby would have to e showing symptoms before treatment . But I would consider flying over just to get some proper care
Avatar universal
So you have been amoxicillin for a month now, and am I correct in assume you are in your first month of pregnancy now? Actually. that's good...it is early in pregnancy.

I just recall that Dr. Jones felt it is ideal for pregnant mother to be on two antibiotics, a cell wall inhibitor and marcolide.

Amoxicillin is cell wall inhibitor, so see about getting second antiibotics, a  marcolide, then I would think your baby will be okay :)  

Avatar universal
No I caught lyme in my first month it went misdiagnosed until I wa 30 weeks pregnant ( 4weeks ago) so I have been on it but caught lyme in my first trimester ..... This is why I'm worried
Avatar universal
Perhaps you didn't see this in an earlier chain of messages.  This MD spoke a few years ago about pediatric at the ILADS conference.  It is at least a place to start.

Colin A. Walsh MB BCh MRCPI
Specialist Registrar in OB/GYN
Addenbrooke's Hospital, Cambridge, UK
Avatar universal
I can completely understand your concern. I would be just as worried.

Getting on antibiotics when you did will make a big difference. I think only time will tell if your baby has been affected by Lyme or not. Has your OB done an ultrasound recently to see if there are any visible concerns? It seems appropriate to do one.

If the cord blood is positive, then you'll definitely want to start treatment. The challenge will be in finding a doc who is willing to do that. If it is negative, then you just have to watch for symptoms, especially for excessive crying/sensitivity or delayed development.  Such symptoms could appear in the first few months, or a couple years later.

There are scary stories about kids born with it and never treated, or treated too late.  But because you have started amoxicillin and you know about it, your baby's odds are good.

I am still concerned about you stopping abx at the birth.  You might need another couple of months to be confident the Lyme is gone. Giving birth is hard on a body, and your immune system might not be up to the task of fighting off Lyme at that point by itself.

I would not breast feed if I were you. Too risky.  And if some months after the birth, you start to feel symptoms again, then you'll know it's back.

But while it is good to be informed and aware, your odds are good!
Avatar universal
Hello

I've come onto the forum after a "forum holiday" as Ricobord told me about you. I've had lyme for years, my son was born with lyme which he got from me.

I don't know if the antibiotic will prevent transmission or not, but it will certainly be helping to reduce the severity of the infection.
Follow up on Stargazer's advice about the macrolide.
You have to be your own doctor now you have lyme and let me tell you, your baby will never have a better doctor than you.
From now on, you can never fully trust any doctor. You have to double check everything.

Lyme babies are born with lyme, they do not have any other problems, increased risk of stil birth or any other worrying problem at all.
My son was born huge adn beautiful and we had no idea there was anything wrong, that is the usual way with lyme babies.

As a lyme mother, you are more likely to find you get no contractions, attempts to induce will not work and you'll end up having a cesarian. My boy was 2 weeks late and I had "cesarian" thrown at me with no time to read up on it. DO read up on it, the more you know beforehand the better.

Lyme spirochetes will be in your breast milk. Do not consider breast feeding for one second.In the UK you will likely be treated like an evil witch my medical staff for making this decision, DO NOT BACK DOWN.

Buy special formula milk that has probiotics added to it. Lyme babies need that to get their intestinal flora from day one, their immune system may not be able to do the job properly without this help.

You may have the Breakspear Hospital recommended to you in the UK. Their good lyme doctors have left in the last 3 years adn I am hearing more and more from people who are utterly underwhelmed by them adn defect to the Germans.
The German Lyme clinic in Augsberg is the best in Europe by far, I would definitely go to them if you cannot afford Charles Ray Jones.
www . b-c-a . de
Phone them immediately or email (yanks and germans) and tell them you are giving birth soon, give the dates, tell them you urgently need advice adn can they tel you what to do for your baby as soon as he is born?

Get the cord blood tested at
www. infectolab . de

Phone them to order the phials immediately, they send 6 tubes and you must fill them all then get the blood sent to them by courier. You'll need to give these to the medical staff to get them filled and makes sure a relative is on hand to grabs the phials and rush off instantly to the nearest TNT or DHL office for sending. (speak to these couriers to explain you'll be coming)
Don't use a UK lab because there is none that is reliable. Don't try the US, the blood gets held too long at customs and coagulates.
You nust get the test for bartonella as well as lyme, it is another tick borne infection that also crosses the placents and you could have it, it's very common in the UK, I have it.

Antibiotics are given to newborn babies. Whether lyme docs advise using them longish term I do not know.
The usual rule of thumb is that the sooner you start treating lyme, the easier and quicker it is to cure.

You start noticing autistic symptoms and signs of mental retardatin (or more often, regression) in lyme babies between 10 months and 2 years. (Doctors say 2 years, mothers say 10 months. )
So I think you'll want some kind of treatment certainly before then, ideally sooner.

This is obviously a huge brain dump, please ask specific questions abotu other details.

Don't panic. You need to plan this rationally and call in as many people as you have to help you.
Avatar universal
Hi thank you so much for you detailed reply.. In terms of my lyme it is fr from gone and will not be for a while I'm guessing... I have an appointment with the specialist who diagnosed me I have booked it for a week after my due date as I am thinking baby will be slightly early. I am hoping to discuss a more agressive treatment plan . I want to be tested for co infections but money is tight so I am hoping to go on a treatment plan which may cover my back in terms
Avatar universal
Sorry my post got sent to early!
Guys you have no idea how much this means to me your help.
In terms of the scan I am having an organ scan today as my biggest fear is the lyme has facets his organs as I caught it in such a crucial time of his development.
In terms of my treatment I am no where near done and I have an appointment at breakspear in the UK a week after due date to discuss treatment options!

You've got to be kidding.. Thank you very much g
Avatar universal
Sorry my post got sent to early!
Guys you have no idea how much this means to me your help.
In terms of the scan I am having an organ scan today as my biggest fear is the lyme has facets his organs as I caught it in such a crucial time of his development.
In terms of my treatment I am no where near done and I have an appointment at breakspear in the UK a week after due date to discuss treatment options!

You've got to be kidding.. Thank you very much for posting I feel a bit more positive ..... How was your son treated. Breakspear is where I am diagnosed an where I will be taking myself and baby once cord test is back.

I have ordered cord testing kit but will I need to stop the amox early as testing may be flawed?

How is your boy doing now?

Thanks again all of you
Avatar universal
It seems  you'vegottobekidding gave very helpful information, and do keep the  Augsberg clinic on your mind if Breakspear can't help any further.

No, you don't have to stop amox.   I was on abx when I did the western blot test, and it should not make any difference.



Avatar universal
Thanks so much for your advice. You say no still birth etc associated, this reassures me as all I seem to read is neonatal death and still birth.

I had specialist scan today of baby's organs Etc and all looked 'normal' doc has also said to induce at 38 weeks, I feel I have made progress today. He also said that baby needs monitoring after and has asked me to come back I lm two weeks so he can see weight gain over a two week period ( good indicator that baby is not growing in a compromised uterine environment) .

Did your baby show symptoms if so when? How long had u had lyme when he was born? How was / is he being treated

Thank u So much

Avatar universal
Is there some reason the doc fears the baby may have restricted growth/compromised uterine invironment?
There aren't really things lyme does.
My baby was quite a whopper and most of the other lyme babies I know were average. Perfect organs etc.
Dont' worry about that kind of stuff.

What lyme can do tp the baby is weaken his immune system. That's why you need to be a fussy mum who is paranoid about hygiene and doesn't let anyone with a cold come near him, don't let people kiss him etc. The probiotics I mentioned are the best possible help you can give his immune system. In a healthy person, 70 to 90 percent of the immune system is busy in teh gut all the time, maintaining the right balance of gut flora by killing the baddies. People with lyme usually get gut trouble as they usually cannot do a good job here. Taking a ton of probiotics give the immune system a constant helping hand.
Your baby will need to establish good gut flora and if his immune system is compromised, which it will be if he does have lyme, he may get off to a really bad start like my son did. My son's guts were atrocious, he was constantly in agony and had the worst constipation you could imagine. I so wich I had known about the probiotics back then to save him so much suffering.

Al the nasty stuff lyme does is to teh mum not the baby! Which of course is much better than the other way round.

What you do need to look out for are the following:
1. You hemorraging a bit at the birth. I hemorraged for a few days. This is because lyme can alter your sedimentation rate - get this tested just before the birth - not too early, it fluctuates from week to week. That way at least the docs can be prepared.

2. get your cortisol level tested before the birth. You will heal in slow motion if it is low. Given you haven't had lyme very long, it should be excessively high instead,  which is very good for you. I think you mentioned in another thread your pulse is going funny? that could simply be the effort of beating extra blood around your body, but it could also be low cortisol, or low calcium or magnesium.
You need your electrolytes measured (it's the first thing a cardiologist worth his salt would test) and to supplement if at all low.
You should get that done before the birth, your heart works terribly hard while in labour, you need it in top form

3. lyme attacks your elastin and makes your flesh very un-stretchy (don't know a medical term for that!). When you are trying to get a baby's head out of you, stretchiness is essential. I'm sorry to be the bearer of such bnad tidings but brace yourself for that fact you are very likely to have an episiotomy or a cesarian.

Now for my son.
I had had lyme 26 years when he was born.

He started showing symptoms at 10 months old. He forgot all the words he knew, stopped looking at me or anyone, people kept asking ,me if he was deaf. He ignored humans. At 3 he could not talk and didn't even seem to recognise his own name.
He had atrocious constipation and sndles tummy problems due to being allergic to milk and later, to nearly all other foods. He spent a long time in gret Ormond street where they etablished he was indeed allergic to all food adn that his guts were in a terrible state, with severe gastritis and damage to the whole intestine
from as soon as he was born, he screamed almost 24/7. He could sleep a maximum of 20 minutes in one go, to a total of 3 hours in 24. That lasted till he was 4.
He was diagnosed with mild/sub clinical chronic encephalitis. This is very common in babies with lyme and it is hard to diagnose. If your baby cries a lot you need to get a good doctor who can investigate this.

We were told he would probably never learn to talk and was severely retartded.

We found a great gastroenterologist when my son was 3 who put him on antifactors (antibodies derived from colostrum). to boost his immune system. He also helped us with his food allergies - also extremely common in  lyme babies - and put him on an artificial liquid feed for some months till his gut healed, then we could intriduce a few foods at a time.

Then we got a lyme diagnosis when my son was 4. He had already made tremendous progress on probiotics and antifactors. Adding antibiotics is doing the last part of the job. I think you should get your son on these immuenbboosters as soona s you can.
I wold be wary of using herbs, they are NOT a weak mild version of antibiotics, they are strong drugs and need to be used under guidance of an expert doctor.

My son is 6 now, he is bilingual and got 10 out of ten in nearly every subject at school last year. He is calm adn happy and although his energy levels are lower than other kids, he is fine and nobody would imagine he had any illness if they didn't know.
I wish I cuold go back in time knowing al I know now as I could have saved him 4 years of horrible suffering.

Sorry if I have told you things that scare you, it is better to know what to expect and know how to deal with it rather than get blindsided like I was.
I hope you'll hve a really easy burth, just do your homework beforehand!
Avatar universal
Thanks so much for your timely response.

I think doctor is going by what he has researched and it seems to involve a lot of outcomes regarding cardiac anomolies , respiratory distress etc. this has worried me the most as I got lyme at the worst possible time in terms of organ development. What do you think? His organs look okay after the intensive scan but on all case studies of firt trimester infection it mentions defects , neonatal death And still birth ( although they are very old case studies and I'm not sure if scans were a advanced as the one performed yesterday) . It also mentions blindness and deafness in these studies :( . Would you say lyme has the same effcts as syphillis in utero? If so untreated it seems to really invade the fetus causing al sorta of structural issues. I know I am treating now with low dose amox but before the lyme had 5 months of 'play time ' and this scares me.

In people who don't transfer it over who were untreated how does that work? Surely my blood is his blood and it goes to him? Or is there more science behind it? Do you know? I read in my situation I have a 63 percent chance I've transmitted it but I don't understand how it's not transmitted ?

all scans have been fine and yesterday's scan shows he is right on schedule weighing 5.5 pounds.. Considering I had a 3d scan 5 weeks ago in which his estimated weight was 3.4 pounds it seems he is putting on weight appropriately. The doctor wants to scan me again in two weeks so he can see how much weight he has put on, he says roughly speaking he should e one pound heavier next scan.

In regards to probiotics anti factors, can u do this without a prescription? Would somewhere like holland barratt do these? Would I give them straight from birth?

That is excellent news about your son. Where idid you get him treated? What treatment did he receive and how long did it take for him to get this far? Is he fully recovered now?

In regards to cord testing if it comes back positive what is my next move? An nhs doctor may not understand treatment of lyme ? And especially children? The other side is if negative do I just wait and watch? Or do I get him tests regularly to see if anything shows?

I've already made an appointment for him at breakspear in early December when the cord test will be back and from what I gather after emailing them about treatment they said it would be probably be based around his immune system with mild herbal treatment ?

Another issue is I don't know if I have co infections .... I can't get tested anytime soon as me and my partner can't afford too ... Is there any treatment method which could cover my grounds in terms of the co infections until I got tested?

I'm terrified I won't be able to enjoy his early year because of this? :(

Avatar universal
Just to insert a question... Why does your doc want to induce at 38 weeks?  

There was a recent study published where they found that each week past the so-called full term of 37 weeks, children had fewer behavioral and learning difficulties. A relative of ours had a baby in early August and her OB refused to induce early, but also wouldn't let her go past the due date. If she didn't go into labor first, she would get her scheduled C-section on the due date.

Anyway, word spread fast here in the States about this study showed that the old belief (that a delivery after 37 weeks was fine) was not completely true. Apparently, there is important brain development in those last three weeks that isn't the same as after birth. If you can make it to 40 weeks, your baby will have better prospects than if delivered at 38 weeks.
Avatar universal
I didnt' want to raise this among all the other worries, but I was also wondering about this. My son was born 2 weeks past due date, which is definitely not a good idea either, but every week inside Mum counts for a baby.
However, I don't think it's a really big deal and the doc must have is reasons - though I would ask him what they are!

On to other things.

First, I looked online  for those "studies" with all the scary results, and have not found anything published in a peer reviewed medical journal based on hard statistical evidence. What I am saying is, I honestly have grave doubts about their reliability.
My lyme doc has never mentioned anything like this, and when we got diagnosed we did have a long talk about transmisison in utero.

Lyme most certainly does not have the same effects as syphilis in utero. syphilis causes tissue damge and atrophy in adults and does the same to developing babies. That means they are born deformed. Lyme doesn't do that. I can inflame your nerves but it cannot cause any permanent  damage. it messes up hormone production and unbalances loads of enzyme systems, and mucks up your immune system, but doesn't physically alter any organ and doesn't do anything irreversible.

The main thing is you've had a scan and if there were problems, they would have shown up. The scans they do nowadays are incredibly sensitive.

Some kids don't catch the illness because, lyme doesn't particularly love hanging about in your blood. For periods of time, usually when it is lying low and not flaring up, it lurks in various body organs but the level in your blood may be so low it is not really detectible. If that's the case when you're pregnant, your baby may be spared.

I had lyme from the moment I concieved my son and had no treatment at all, as I had no diagnosis. And ym lyme was pretty bad while I was pregnant. So I think in my case transmission was inevitable.

Probiotics are not drugs so yes, you don't need a prescription. I think you could find better quality than Holland and Barret stuff. They do make probiotics specifically for newborn babies, I think it would be best to look for them. Get the very best quality you can find. You give them right from birth.

Just realied I got the wrong name, it's not antifactors but transfer factors (lyme brain!)
The ones my doc advises are these
https: // www.researchednutritional s. com/store/item.cfm?code=CRN114&cat=17

They used to need a prescription, and this link is to ones for adults.
I'd talk to teh doc abot something for babies.
My son had a liquid form that is only available in italy as far as I can tell, called immunozima. That's specially for babies and kids. His blood tests show it has made amazing improvements in his immune system so it really is worth tracking an equivalent down.

My son does still have lyme but is pretty much symptom free.
Once we got him on transfer factors it took about 6 months to get a spectacular turnaround. By the time he started antibiotics (3 years ago, a year after starting transfer factors) he had already made about 80 percent or more of his recovery.
We get him treated at the clinci in Germany I mentioned before.

An NHS doctor is highly unlikely to understand lyme.
Have you talked abotu your post-burth treatment? If they tell you you will be cured with 2 months of docycycline, you need a new doctor. If they tell you they are willing to prescribe you combinde abx for months, they do understand lyme.
You could start your own homework and see how willingyour doc is to be educated by printing the ILADs treatment guidelines from the ILADS website (it's a dot org address)and taking them to the doc.

If your son tests positive, I cannot recommend anywhere other than the clinic in Germany, I have been to doctors all over England, in Great Ormond Street hospital (where they know nothing about lyme and almost killed my son) all over Italy, Belgium and several docs in Germany before finding this clinic.

The usual procedure if negative is to retest after 3 months and again after another 3 months,m if stil all slear you are safe.

Many combined abx regimes do deal with coinfections. At the least they would hold the fort I think.

I would want to know what immune support the Breakspear plans for your baby. Coudl you get an appointment in advance so you have already reserched and feel happy with the plan before baby is born?

To treat lyme with herbs, you need a tried and tested, full herbal protocol. If you randomly pick out one or 2 herbs that are good against lyme, you wil not cure lyme, just as taking one or two of randomly selected antibiotics will not cure it. You need a properly balanced blend.
So ask them what herbs they want to use, then look them up online.
Research everything.

When you give abx you need regular liver checks adn with most herbs it's not necessary, so that could be a good reason not to give baby abx (no blood tests). On the other hand, herbs are never ever going to be as powerful as antibiotics and they take on average four times longer to work than abx do. If baby could potentially have abx, than that is what I personally would want for my baby.
I don't know and it is hard to find info online about treting newborns.

Have you tried contacting Charles Ray Jones yet? I seriously would contact his assistant adn ask if you could get an urgent telephone consultation. Perhaps write an email briefly explaing your situation so they get it loud and clear that you need to know what to do when baby pops out!

Bottom line, my son got no antibiotic treatment till he was 4 and he is doing great, so, it's not a make or break thing I think. Do all you can to get this right from teh start, but don't give yourself a nervous breakdown over it. Have faith that it will work out OK.

And also rememebr to take care of yourself!
Have you started notifying all your female relatives that you will need babysitting help and Mumysitting help fairly soon?
Avatar universal
Thanks so much for you reply!

I'm learning so much !

The doc says to induce between 38-40 weeks to ensure I do not go over due date - not too sure about reasoning but I think he says its best not to go over the due date. I may ask to be nearer to 40 weeks ( this is all providing I don't go into labour before this time )

The studies are pretty old but its all I can find in regards to first trimester infection- the outcomes were never proved linked to borrelia but they did find lyme within the baby's organs so I'm uncertain - because I feel vulnerable I feel I'm looking at it all really negatively. I'm scared that no recent studies have been done regarding first trimester infection which is when organs are developing etc - all I can see is 'risk is highest in first trimester' this scares me so much :( ... All says with appropriate antibiotics risk is minimal but as you know I have only started treatment a month ago - the lyme had so long to run riot :(

I feel like I'm doomed as all the bad stuff seems to happen to women untreated and infection during the first tri ( I feel like I fall into all the really bad outcome category's)

In regards to syphillis I'm glad you said that they are different as I was also looking up outcomes for that and it doesn't look good at all! - do you think if baby was to have a defect in terms of organs it would have showed on the scans I have had ?

I looked on my consultation notes and it said ' scan appears normal and all organs appear normal considering limitations of gestation and scan - heart and brain was looked at in particular due to concers regarding anomalies and both appear normal as far as we can see ' - this should reassure me right.

On my birth plan which I finalised today with the consultant he has also requested I stay in hospital 48 hrs after birth ( in UK you are told to leave within 6 hrs of birth if all goes okay ) for pediatricians to monitor baby in terms of any signs of distress or respiratory issues - the lungs are not used until Birth so I'm praying that little man is okay in this department too .

So i can use probiotics from birth with baby ? And the anti factors ? Are these used along side pro biotics ? What are the exact purpose of them ? Could I use them with a treatment regime or him?

I have an appointment regarding my treatment at breakspear on 3rd December so I will change to something agressive ish - I hope to get rid of this as quickly as I can I hope it is possible ! My middle finger has started to uncontrollably jerk over the past 2 days - is this a new symptom or some kind of small die off due to the amoxicillin? I hope it's the latter !

Yes all family are on board and realise I may need more help than usual so I am thankful for that! I'm just really hoping this doesn't rule my life and that me and my son ( if he has it) can eventually be Lyme free - I hope this can happen?

Youvegottobekidding ... Have you heard of eye issues and congenital lyme? Another one of my worrys :(

I am going to contact dr jones again I tried once but the woman told me he doesn't deal with phone patents :s

Thanks again for all of your help - what abx was your son on? Does he have a co infection?

X
Avatar universal
This fellow is at least in your time zone, and lectured at ILADS a few years ago, so here's his name, one more time, fwiw.

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

Avatar universal
Thanks so much for you reply!

I'm learning so much !

The doc says to induce between 38-40 weeks to ensure I do not go over due date - not too sure about reasoning but I think he says its best not to go over the due date. I may ask to be nearer to 40 weeks ( this is all providing I don't go into labour before this time )

The studies are pretty old but its all I can find in regards to first trimester infection- the outcomes were never proved linked to borrelia but they did find lyme within the baby's organs so I'm uncertain - because I feel vulnerable I feel I'm looking at it all really negatively. I'm scared that no recent studies have been done regarding first trimester infection which is when organs are developing etc - all I can see is 'risk is highest in first trimester' this scares me so much :( ... All says with appropriate antibiotics risk is minimal but as you know I have only started treatment a month ago - the lyme had so long to run riot :(

I feel like I'm doomed as all the bad stuff seems to happen to women untreated and infection during the first tri ( I feel like I fall into all the really bad outcome category's)

In regards to syphillis I'm glad you said that they are different as I was also looking up outcomes for that and it doesn't look good at all! - do you think if baby was to have a defect in terms of organs it would have showed on the scans I have had ?

I looked on my consultation notes and it said ' scan appears normal and all organs appear normal considering limitations of gestation and scan - heart and brain was looked at in particular due to concers regarding anomalies and both appear normal as far as we can see ' - this should reassure me right.

On my birth plan which I finalised today with the consultant he has also requested I stay in hospital 48 hrs after birth ( in UK you are told to leave within 6 hrs of birth if all goes okay ) for pediatricians to monitor baby in terms of any signs of distress or respiratory issues - the lungs are not used until Birth so I'm praying that little man is okay in this department too .

So i can use probiotics from birth with baby ? And the anti factors ? Are these used along side pro biotics ? What are the exact purpose of them ? Could I use them with a treatment regime or him?

I have an appointment regarding my treatment at breakspear on 3rd December so I will change to something agressive ish - I hope to get rid of this as quickly as I can I hope it is possible ! My middle finger has started to uncontrollably jerk over the past 2 days - is this a new symptom or some kind of small die off due to the amoxicillin? I hope it's the latter !

Yes all family are on board and realise I may need more help than usual so I am thankful for that! I'm just really hoping this doesn't rule my life and that me and my son ( if he has it) can eventually be Lyme free - I hope this can happen?

Youvegottobekidding ... Have you heard of eye issues and congenital lyme? Another one of my worrys :(

I am going to contact dr jones again I tried once but the woman told me he doesn't deal with phone patents :s

Thanks again for all of your help - what abx was your son on? Does he have a co infection?

X
Avatar universal
Hello nervous mum!

My son is on oraxim and azithromycin. This is what my doctor uses on children below 8, who cannot be given minocycline or doxycycline.

I do have bartonella as a co infection adn several others, but my son luckily doesn't.

Honestly, I have NEVER heard of eye issues, deformed organ issues, still birth, miscarriage or anything else with congenital lyme. I've been on a forum for mothers of kids with lyme disease for several years and nobody on there has a kid with any deformity, funny organs, blindness or anything else. What they have is kids with lyme disease and autism.
There are families with three or sometimes more kids with lyme disease. But no deformities etc.
Seriously, you seem deeply stressed and in my opinion it is not justified at all. Especially since you have had a scan which says the baby is absolutely fine. The wording of teh scan that you quoted is standard woring (like school reports). A doctor is never ever going to write "this baby is absolutely perfect and  totally fine beyond any doubt whatsoever" because then you could sue him if baby was born with a few hairs missing. But that IS what your scan report means. Baby is fine.

Yes you would use probiotics and transfer factors from birth.
They can be used with or without antibiotics or any other medicines.

The probiotics are the best possible help you can give his immune system. In a healthy person, 70 to 90 percent of the immune system is busy in teh gut all the time, maintaining the right balance of gut flora by killing the bad bacteria that constantly enter when you eat or drink. People with lyme usually get gut trouble as they usually cannot do a good job here. Taking a ton of probiotics give the immune system a constant helping hand. That frees it up to concentrate on fighting lyme bacteria around the body.

Transfer factors are antibodies. Basically, you wold be giving baby a whole range of antibodies to a huge number of infections. It's the same princimple as mother's breast milk helping baby, except mroe concentrated, and of course better because your own breast milk WILL have lyme disease in it and must not go near your baby.

Have you tried contacting Dr Colin Walsh at Addenbrookes? He has done very extensive research on babies with congenital lyme and it seems that currently he is the top man in the UK for this issue. ONE OF THE TOP MEN WORLDWIDE.
Also he's an NHS doctor so you won't have to pay.
Go to your GP adn ask to be referred directly to him through book adn choose (Do you know how that works? I'll explain if you don't)

How is your partner reacting to all this? Is he helping you with research etc?

Take care,
I'm sending you a big hug and hoping you'll find a way to feel more mellow!
Avatar universal
Thanks for replying means a lot sorry if I'm starting to bore you lol! Just the Internet is a Cary place and id rather have info from someone who has had first hand experience rather than a site full of scary stories.

All I ever see about lyme and pregnancy on the Internet is still birth and malformations etc ? Do you think that's because I'm searching for lyme acquired during pregnancy which is my case rather than before it which was your case. - that's why I'm getting  so worked up because everywhere says the worst cases happen with mothers who caught it during he first trimester and went untreated ( basically my situation ) :( I'm so stressed with this all.

Great so the transfer factors can be given regardless of test outcome? Do you keep your boy on them with the antibiotics too?

I rang addenbrookes and they seem to think dr Walsh no longer works thre :s do you have any contact details for him I have been searching ?

My partner is trying to be positive which is good but he's a bit clueless about lyme and does seem to leave all the research down to me ! He says I'm mad stressing myself out because it is what it is and reading another case study about it is not gonna help me or baby and that I'd baby has lyme we deal with it then but for now there's nothing I can do to change what will happen or won't happen! That's his attitude - seems blunt but he says he has to be otherwise we would Be running around like headless chickens! He has been very supportive in his own ways but at the minute he chooses not to look to much into lyme but says he will once he's faced with it in our baby etc :/

What group is that you joined ? Might be helpful to have a look

Xxx
Avatar universal
Is there a central registry for MDs in the UK, where their location and contact information would be listed?  I would think it likely.  So I would ring up the registry and track down Dr Walsh ex-Addenbrookes.  

You are dealing with a lot, so remember to slow down and take some deep breaths and think peaceful thoughts for your baby, and for yourself.  You are very conscientious, clearly -- but too much worry is not helpful!  Take care, you're doing fine -- all good wishes to you and yours.  
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