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My toxoplasmosis experience - to share with others who may go through the same thing....(52 Posts)
I wanted to post my experience of a positive toxoplasmosis blood test during pregnancy so others can get the comfort I received eventually after a month of agonising over websites that reported nothing but worse case scenario outcomes.
Firstly, the facts: it's a common misconception that toxo is mostly caught from cats. Most cases actually come from eating undercooked meat, cured meat or salads or raw vegetables that have not been properly washed and contain traces of soil. Once you have had it you are immune and not at risk. However that said It's fairly rare in the uk, however, despite the fact that I was a neurotic eater, have no contacts with cats or gardening and live a sanitised life in central London, a blood test I opted to have at 14 weeks came back showing I had the antibodies that showed a recent infection. A second blood test two weeks later confirmed that I had somehow contracted this at 8 weeks. toxo does not necessarily present any symptoms in adults but IF it crosses the placenta to the foetus then the complications it can cause ranges from severe (miscarriage or brain damage) to mild (minor eyesight problems) and sometimes no damage at all. HOWEVER the risk of toxoplasmosis transferring across the placenta if you contract it during the first trimester is VERY SMALL but it increases in a linear fashion as a pregnancy progresses. However, the level of damage it potentially caused to a baby decreases in a similar linear fashion as a pregnancy progresses. So the outcome depends very much on when you contract it. If it doesn't cross the placenta then your baby is fine but you will need to take antibiotics (spiramycin) for the rest of your pregnancy. If it has crossed then you will take different antibiotics to treat the baby.
So what happens if you test Positive? You will need two blood tests to confirm when you contracted it. I was then recommended an early anomaly scan at 16 weeks to check for major damage. It is likely that if toxo crosses the placenta in the first trimester then the damage will be severe enough to be picked up on a scan and may even cause miscarriage. However, if your scan is normal and the baby is growing normally then in all likelihood you have NOT transmitted to the baby. Next step we were given the choice as to whether or not we wanted to know for sure by having an amniocentesis. We decided we would and the amazing professor Nicolaides did this for us at the Fetal Medicine Centre in London and reassured us that the likelihood of it having crossed to the baby given the timing of infection was only 0.5%. a fact I wish very much that someone had given me at the outset as hours of Internet research had me convinced we were going to lose our much wanted baby. After an agonising 10 day wait we were told toxo wasn't detected in the amniotic fluid, and so we could continue our pregnancy as normal provided I took mountains of antibiotics until birth. From the first blood test results it was a month before we got this certainty.
The entire experience was incredibly upsetting and stressful and I wish I had been able to read more stories of happy outcomes because the tone of information available online was overwhelmingly negative and my doctor seemed unwilling to give me a specific estimation of the risks which left me fearing the worst.
I hope this information will be helpful to someone now or in the future. I know the Nhs doesn't test for toxo as standard because it's rare and the results can be tricky to interpret with a high rate of incorrect outcomes first time round. I don't think anyone should panic if you aren't planning on having the test - if you follow the guidelines about what to eat and not to eat then statistically the risk is very low, i think i must have been incredibly unlucky. However my experience was so stressful that I would say that no rare steak is worth what we went through! Anyway, that's all, and if anyone is going through something similar pls get in touch and I'd be happy to lend some support. X
Thank you for sharing your experience Bumpity - I'm glad your story has a happy ending!
It's particularly good to have someone dispel the myth of toxo being only to do with cats. We have one (an indoor cat who is at zero risk of toxo in any case) and it irritates me no end when people make comments about it. Don't even get me started on women who dump their cats when they find out they are pregnant...
Was there a particular reason you had the test?
Thank you very much for sharing this. I was concerned about this as I have a cat so my husband has been doing the litter tray during my pregnancy (an outdoor cat but who has a litter tray, which is a whole other story). Although I an highly tempted not to tell my husband how small the risk from cats really is...it is very nice to have a few months' respite from doing the tray.
Thanks for sharing this - similar level of confusion and researching on top of varying views on slapped cheek has caused similar worry and stress simply as I was not immune but there was lots of confusion about risks at work and beyond 20 wks. Not as worrying as toxo but it was the,confusion that caused considerable stress as to what precautions to take.
I live in France and I'm now glad that I've been tested every month for toxo as standard. I had thought it was a bit excessive. Glad your story has a happy ending!
Wow - you have really been through it! So glad that you and your baby are well.
I was tested for toxoplasmosis when I was 28 weeks as they thought I had some kind of infection as i had excessive liquor (can't spell polyhydramnios - oh! I can!) Anyway an agonising week of worry followed but the test came back clear and now have a happy healthy 15mo.
Thanks for sharing your experience!
I wish I had read a post like this 4 months ago when I too tested positive for active toxoplasmosis, and then followed 7 agonising weeks until we got the results of the amnio that the toxo hadn't passed to the baby. We had had reassuring scans, but oh the joy of the phone call with the results!
In my case, the infection was v likely to have been caught from my cat. Our 10 month old kitten had started hunting for the first time and
Indeed shortly after I found out I was pregnant we found out a dead mouse in the kitchen. Our cat flap lead directly into the kitchen and soon after I got pregnant we closed it up to stop the cats who go to toilet in our garden from treading dirt into the kitchen. Looking at info on line I worked out that young cats hunting for the first time were most likely to catch toxoplasmosis so requested the blood test mainly for my own peace of mind - I thought I was most likely immune but obviously I wasn''t.
The problem with it most likely linked to cats it's that I'm sure that many a person thinks I brought my troubles on myself. I avoided telling my parents for this reason and to avoid the "I told you so's". One friend who I told as I was in bits, with the 7 week waiting period coinciding with my dh working abroad, so was alone and needing emotional support, disappeared during the time I needed support but was quick enough to tell me afterwards I was silly to be cuddling cats, with the inference what did I expect.
My research did tell me that the majority of cases are not related to cats. However, I would advise precautions to be taken with young outdoor cats in particular. All the same, if it does happen to you don't panic too much! As op said most of the info online is pretty dooms day, I managed to find a medical paper on line with more reassuring stats - not as low as .1% transmission in first trimester, but less than 10% with not all cases showing clinical symptoms.
I too tested positive when pregnant with DC2. I asked for the test as it is standard in my home country (we eat lots of raw meat) and as i was negative with DC1, I wanted to know the status quo. From my tests they couldn't say whether the infection was before or during pregnancy. It was most likely before so I dexided not to have the amnio or take the anti-biotics. We did extra eye tests after the birth and no scaring was found. My DS is 2.5 years old now and is showing no signs of anything wrong (other than twoyearoldisme).
I'm pregnant with DC3 now and I love that i can eat meats and salads without worrying.
Hi Twitchy, my DH and I decided to go private for number one baby because my family have a history of complicated births and my obstetrician offers this test to all his clients - we decided to do the full range of tests he offered and so this was one of them. I didn't even know what toxo was until I got the results!
Ps I'm not advocating that care should not be taken with cats, so let your DP continue to do the tray .... But the risk needs to be kept in proportion with all the other more common causes!
I wonder actually how many people do in fact catch toxo in pregnancy and never know about it. Part of me wonders might it have been best for my piece of mind not to have known - but then the other part of me is glad I do know and am on antibiotics in case they did stop it passing across the placenta.
Apache I have wondered the same myself...if I hadn't had the test I would remain blissfully ignorant and chances are the outcome wld probably be the same! However I am reassured that I've had every flippin test available now. Although that obviously doesn't guarantee a good outcome. Whilst my experience was hell at the time, I now feel incredibly lucky and reading other mums netters posts, many people go through much worse experiences and I am full of admiration for the strength shown by many. fingers crossed for all our little ones!
I ate a pink hamburger around 14 weeks and started freaking out - my midwife said toxo was mostly caused by cats (which I already knew wasn't true). I've had normal scans since then but never had a test. At which point should I worry? I'm 30 weeks.
I'm so glad to hear your brush with Toxo has still resulted in a happy ending!! Hurrah!
I completely sympathise with you as I had a positive reading at 20 weeks (I live in France and get tested once a month), which later turned out to be a false reading, but the month of acute worry, guilt and fear is something I will never forget.
As you said, no undercooked/ raw meat is worth risking the health and welfare of your baby!!
All the best.
I don't think I was ever tested for it. I have two cats and have eaten some pink meat a couple of times in this pregnancy. I'm 33 weeks and all the scans have been showing baby is healthy. Maybe some hospitals don't test? Or maybe it was in my blood test but I didn't know
Really good to read this - I contracted toxo in my first trimester last year, most likely from eating venison in the first week of my pregnancy (so I didn't know I was pregnant). As you say, it's really bad luck... I did have symptoms though; approx 4 weeks later I felt like I had flu with neck pains and nausea. I then found a huge lump at the back of my neck (swollen lymph node). Saw my GP who tested me for lymphoma and as it wasn't that (fortunately) he dismissed it as 'an infection'. Fortunately here in New Zealand we have a lead maternity carer throughout pregnancy and on my first meeting with her she sent me to be tested for toxo due to the symptoms. It is so extremely rare that spiromycin is not even available in NZ......so a stressful 8 week wait to start the antibiotics!! I agree that maybe it's best not to know... but then the antibiotics may be the thing that stops the parasite crossing the placenta at a later stage. Who knows. My baby has had a whole range of tests since birth and finally at 5 months was given the all clear and the doctors are confident that he does not have congenital toxo. Lots of worry and also lots of guilt but if I didn't feel that for this situation I am sure there'd be something else to panic about!!
Re cats - the risk from a litter tray is only if the poo is over 24 hours old as the parasite doesn't become active until after that time frame. I doubt most people leave it there for that long
Anyway all the best to everyone going through toxo and fingers crossed for all happy outcomes!!
OP what prompted you to have the test in the first place? It isn't usually offered on the NHS is it?
Glad it turned out ok for you
Thanks for posting this bumpitybumpbump. I am 25 weeks pregnant and am due for my toxo blood test this Friday - just over 3 weeks since I first had the scared I might have contracted it. I'm normally careful but as pregnancy goes on, I have relaxed a teency bit and without thinking, ate very rare, luke-warm, bloody roast beef while out with my husband. After I ate it, I suddenly panciked. My GPs seemed to know little, reassuringly I guess because it's so rare - and kept referring me to the NHS website and saying that because I had no symptoms, I was fine. But the NHS website advises I likely wouldn't have symptoms at first anyway!
Anyway, they gave me a blood test the day after I ate the meat and it came back negative. So at that point, I wasn't immune to toxo. My second test on Friday is supposedly to allow enough time to show if I have been infected recently?..I think this is right?
I'm quite nervous about it and don't fancy an amniocentisis if the results were positive...I have heard about antibiotic treatment if blood test showed positive?..
Always so much to worry about!
Blue foggy, I had the test because my obstetrician tests all his patients as a matter of course. I wasn't particularly worried as I had been very careful since I knew I was pregnant... However as I said I must have been very unlucky and probably got it from unwashed salad or something as I don't eat rare meat even when I'm not pregnant. The nhs doesn't test because it's rare ... However, if anyone is worried I wld recommend the test, also because if you find out you're immune you can relax a bit about what you're eating. It cost about £70 so it's not cheap however and if you have any flu like symptoms (I didn't) try and convince your gp to get a test on the nhs. However it is just not the case that lots of babies are being born on the nhs with gestational toxo, otherwise the resting would be offered, so I will just repeat that statistically it's low risk in the uk.
I suppose the point of my original post was that even if you do get it, it isn't the doomsday scenario that websites would have you believe. Even if it does transfer to the baby, you then take different antibiotics to protect it. If your scans are normal chances are the baby hasn't come into contact with toxo in the first trimester, and if you get it in second or third the risk of damage is much less, and most major damage would be picked up on a scan.
If I were starting again knowing what I'd know now then I'd get tested before ttc so I could know if I was already immune and therefore hoe paranoid to be!
Also if you do find yourself having to have an amnio, it really isn't that bad- no worse than an injection and over so quickly. My baby's heart didn't even skip a beat.
I have had several tests for toxoplasmosis during my pregnancy and they have all indicated there has been no evidence of past or current infection. However, I had another test about two weeks ago, which has come back as 'inconclusive'. I have to wait until Monday to speak to someone. I've also just changed GP surgeries and the results haven't been faxed over to the new practice yet so no action has been taken at all. I am now 35 weeks pregnant and absolutely terrified I have contracted toxoplasmosis. It's been my nightmare throughout pregnancy!!!
Has anyone had a similar experience or do you know why the result might have been inconclusive? As I said above I have never been exposed to it before and so it can't be showing a past infection (hence my panic!)
Any info or support much appreciated...
OP, thanks for starting this thread - Sorry Lamia, can't help with your question but maybe someone else can.
Wanted to share my experience: I ate rare beef when barely pregnant e.g. 3dpo, and got very worried when we read info that said that it takes a few weeks for the infection to travel through your body so could have affected the baby (but the risk was extremely minute). The GP was really dismissive when we queried this with him, maybe rightly so. But he also said some
bullshit statement about the fact I hadn't suffered any of the symptoms.
We went home, Googled it a bit more, realised the GP was
talking out of his bum not telling the whole story as toxo often doesn't present any symptoms. Also, a sore throat is a symptom, and we had already told him I had had one.
DH managed to get a telephone appointment later that day with the GP and harangued him into talking to a proper obs doctor and organising a test. Eventually the GP reported that the Obs doctor recommended testing asap. (Haven't got the result yet). Apparently I'd then need further tests regardless of the result. If it shows no antibodies, I need to wait several weeks and test again in case I had tested too early for antibodies to appear. If it shows some antibodies, I still need to test again in order for them to determine how long ago I had the infection.
All in all, a lot of fuss and needles and trudging to the local clinic over a tiny tiny chance of toxoplasmosis (although if it eventualises it can be very harmful at such an early stage as OP explained in her earlier post). The upside is that we have peace of mind: my DH and I can't ever say in the future that we instinctively suspected it but let the GP persuade us not to test.
thanks Bumpitybump, and everyone else on the thread...I can't tell you how invaluable it has been. I was looking for exactly this kind of story to bolster my confidence and give me some more perspective as I find myself in the same scenario - except I'm right in the middle of the fear part: I just had the positive toxoplasma and am waiting the further blood analysis (14 working days no less!!) and the second set of bloods to be taken 3 week post my original positive at 12 weeks. I actually started a thread recently - before I found this one - as I was going stircrazy with worry and guilt and all I could find were doom and gloom statistics and frightening outcomes. I will let you know how it goes for me. I am currently praying.
Update: yesterday I got great news, namely that the infection is a minimum of 6 months old so not contracted during pregnancy, thankfully. I don't have all the paperwork for the details yet but that is the bottom line.
Thank you for posting this bumpity, this is my second pregnancy in 2 years (ds2 is one this week and I am 28 weeks with dc3) and although routine toxoplasmosis tests came back negative last pregnancy and at the beginning of this one, today my obgyn told me that I have had a positive result that shows I have had it sometime in the past but negative for acute infection. I had more bloods today but am now playing the waiting game. I've had routine ultrasounds since I found out I was pregnant and no anomalies have shown so I'm hoping that if I have contracted it that it was in the first tri and it hasn't crossed the placenta.
I basically just wanted to thank you for lessening my worry a bit as everything I've read so far has been awful, with references to severe abnormalities and stillbirth. So thank you x
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