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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

My toxoplasmosis experience - to share with others who may go through the same thing....

74 replies

bumpitybumpbump · 03/11/2012 19:00

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

OP posts:
FoxyRoxy · 16/09/2013 20:18

Crispy I've had cats since I was born, used to share my food with the cat when I was younger (yes I know!) eat rare steaks and cured meats, I was surprised it was negative the first time I was tested. How unlucky do you have to be to contract it while pregnant and avoiding those things?!

CrispyFB · 16/09/2013 20:36

I know! It really must be very rotten luck. I know the immune system is a bit more suppressed in pregnancy, but even so - especially as these ladies were avoiding this stuff.

Julietee · 17/09/2013 10:37

This is something I've not been sure how much to worry about.

If I've had cats for 16 years is it more likely I'd be immune?

I'm pretty sure I had unwashed/ minimally washed vegetables (those little radishes with the roots still attached) while I've been pregnant so now I'm worried I've come into contact with soil.
Does it have to be infected soil, or is any soil suspect?

FoxyRoxy · 25/09/2013 09:44

I just wanted to update, my obgyn called me at 9.30pm on Monday evening to tell me that my repeat bloods had come back negative for any antibodies. For anyone who has had the test as you know they give you two results IgG and IgM. Apparently it's not uncommon for the IgM result to come back false positive which is why they don't take one test at face value and will retest before doing anything else. My IgG result was the false positive one which is very rare but after a lot of googling I've found it does happen on occasion. Anyway, we are hugely relieved of course!

Julietee you wouldn't know what soil was infected or not so just wash or peel fruit and veg. I thought I would have been immune as I've had cats for my whole life but I'm not so its anyone's guess really. If you're very concerned then ask your mw if she will send you for the bloods.

sophiedolan · 01/02/2015 22:36

Dear Bumpity,
Thank you for such a coherent email. i am 18 weeks pregnant and have just been diagnosed as "positive" for toXO. i am waiting for tests telling me when I got it. Please could you tell me the names of the people who you dealt with and their contact details so I can get in touch with them ASAP to discuss further all the tests I need.
Many thanks for your help,
sophie

AmericaninParis · 28/02/2015 08:18

Hi Sophie, and hello to anyone else who may be seeking info about this subject.

I am glad to see a recent post in this thread because I too have just been diagnosed with a toxoplasmosis seroconversion during pregnancy. I live in France and so have been screened monthly for the antibodies since the start of my pregnancy: my tests came back negative until the one from last week, at almost 17 weeks of gestation. I'm guessing the infection occurred at around 15 weeks based on the fact that IgGs were present at a relatively low level, and they usually take 2 weeks to appear.

That timing fits with a probable cause for contamination, I now realize, and having an idea of how I contracted the disease is making the guilt that much worse. I was craving New Orleans-style red beans & rice, so I chose a recipe with pickled pork, which you make by marinating the pork for two days. I got the pork from my local butcher, who advertises sustainably/humanely raised pork, and put the pork in a pot in the fridge with the marinade. The next day I opened my tiny fridge and somehow the marinade spilled everywhere: all over the fridge and the floor of my kitchen. I cleaned everything with soapy water, but I should have used bleach.

What I later found out is that while toxoplasmosis is rare in industrially raised pork, it is very common in "artisanally raised" pork, especially in France. So my efforts to be a conscious consumer may have been part of my undoing (in fact, these same efforts are also what led me to clean my fridge with Dr. Bronner's castille soap rather than a harsher antibacterial product that may have killed the parasite...) The marinade must have contaminated other foods in my fridge without my realizing it.

As soon as I received the bloodwork results I went to the ER at the hospital where I am registered to give birth. They did an ultrasound to verify the "vitality" of the fetus (thank goodness, he or she is still alive indeed), and I was immediately given a prescription for spiramycine, an antibiotic thought to limit the risk of transmission to the fetus.

The hospital followed up by giving me an appointment with a specialist this Tuesday. The standard procedure here seems to be to repeat the bloodwork two weeks after the first positive, mainly to date the infection, then to schedule amniocentesis at least four weeks after the presumed date of maternal infection. If the amnio shows the fetus has been infected, I will be offered anti-parasite drugs (pyramethamine and sulfadiazine), although there is lots of debate about whether these are actually more effective than the antibiotic alone at slowing down the parasite or limiting the severity of its effects on the fetus. Regardless of the amnio results, I will continue taking spiramyacine for the duration of my pregnancy and will have frequent ultrasounds (once a month or once every 15 days, depending on the way things progress).

How to describe the level of guilt I am carrying around now? I have done a few stupid things in my life, but none come close to knowing I have potentially rendered my own child mentally retarded or blind, or made him or her "incompatible with life," as the ER nurse put it. ("If a later ultrasound reveals abnormalities that are incompatible with life, a medical abortion may be proposed").

This guilt was compounded day before yesterday when I clumsily knocked my pelvis up againt a table corner at the office, hard enough that it's a little sore today. This is probably highly irrational, but I am telling myself that I may have ruptured my placenta if it is anterior-facing (I forgot to ask about its placement during the ultrasound), and that this rupture is going to allow the toxoplasmosis parasite to reach my fetus.

I'm not sure why I'm sharing all of this other than in the hopes of connecting with someone else who is going through the same thing. Do you have any news since your post in early February? Are you planning to undergo amniocentesis? I would love to hear your story just to feel a little less alone. So much of the info online about toxoplasmosis is just about reassuring women how rare it is: not exactly useful in my situation.

My thoughts and prayers go out to all the other mamas coping with the same diagnosis at any stage of their pregnancy.
Laura

ragged · 28/02/2015 08:34

I wonder what the rate of true positive disease transmission is and if it truly warrants all the worry caused by the tests that find nothing wrong.

SueV14 · 28/02/2015 12:27

Thank you so much for sharing this, OP. I'm tested negative, but sometimes miss a medium cooked steak so much that I'm thinking "what are the odds to catch it now if I haven't caught it in 35 years?" But it is good to know that all the stuff around toxo is not a myth and it does present a certain real risk to the baby.

Also I do hope some people read this, who on some other threads here, were complaining about future mothers being forced to feel guilty about everything and how they refuse to follow "silly guidelines" and how we should all relax and ignore most recommendations, etc etc.

Thingymaboob · 13/05/2017 08:55

What a great thread! I have been a nervous nelly about this. I potentially got exposed to toxo this week from my garden. I am 5 weeks pregnant so early, which makes me very pleased to know to outcome of early trimester exposure risks.
I will try and persuade my midwife to do the test when I book in a few weeks.

Tammy2804 · 16/06/2017 12:43

This is the most comforting thread i have found in the past several week. I am losing my mind over all the horrible things I read that can happen.
I got pregnant with a very wanted child in February and tested positive for toxo in March with IgG 74.5 and IgM 14.2, the doc said to repeat the results as I was only 5 weeks preg and it was highly likely that the disease was contracted earlier (i was negative a year prior to that). The second results in April showed an increasing trend with IgG 122 and IgM 25.5 then for some reason the doctor said not to take any action and wait more. now two months later, I am already at 18 weeks and he sent me to the next test and without waiting for the result prescribed to start taking spyramicine urgently (3ME twice a day for 4 months) I am so so so worried that during the two months while we were just "waiting" i could've passed on the disease to the baby. Going to the big scan next week and crying myself to sleep every day until then as i am terrified that irreversible damage could've been made already... please tell me that the probability of passing it on it still low.. this is devastating...

Thingymaboob · 16/06/2017 14:04

@Tammy2804 from what I've read the IgM peaks about 2-3 months after initial infection and then drops. The fact that you had positive IgM when you were 5 weeks which then increased means you likely caught it just before conception as it takes a couple of weeks for the antibodies to start to show in a blood test. Therefore, the chance of you passing it to your baby is likely to be less than 10-15%, probably on the low end of the scale. The only way to know for sure is to have an amnio. Let me know how you get on. Do you know what the source of infection was?

Tammy2804 · 16/06/2017 14:41

@Thingymaboob Thank you SO much Dear! I was trying to search for the info on how does the IgM trend progresses and was looking for exactly this information. maybe this is why the doc told me to wait longer hoping that the titres will start decreasing. I go for scans every 2-3 weeks (had previously a miscarriage at 5 weeks, so they added me to their watch list for the second pregnancy) I have a US scan scheduled for Tuesday, we will also get the results of my third blood test but you are right, I will only be 100% calm if we do the amnio.
They don't know the source of infection but we have 2 dogs and a garden (where sometimes neighbor cats pass by) so it could've easily been a situation when a dog sniffed cat feces and then came into the house licking our hands, or uncooked meat, or also the fact that i traveled a lot before pregnancy for work to small cities all around CEE and it could've easily been an unwashed vegetable in the salad or any cutlery that the hotel/restaurant staff didn't care to wash properly. It's just unbelievable that for 33 years I've been surrounded with animals and was never really picky on food and got the infection only recently exactly at pregnancy. My miscarriage last year hit us hard with my husband, and this pregnancy didn't start too promising either, i was on hormones for the first 3 months and now when i am finally done with the first trimester and was thinking that the storm passed this horrible toxo is keeping me up at night. I will keep you posted on what the doc and results tell us...

HKittyCat · 16/06/2017 20:29

Whilst we're talking about toxo I was wondering if OP or anyone else could advise me.
About 2 weeks ago I was in the living room playing on the xbox with my brother and he was playing with one of these dead thawed mice that he feeds his snake (gross I know) and he threw it at me. I didn't touch it but it dawned on me about an hour later that we had been sharing the xbox controller and he'd been playing with the mouse at the same time. I washed my hands and gave the controller a wipe with one of those dettol wipe things. Is there any chance of me contracing toxo from that?
Sorry it might sound paranoid but the thread reminded me

Thingymaboob · 16/06/2017 20:54

The way you get it from mice is from ingesting their meat where the tissue cysts are. You'd actually have to eat the mouse.

HKittyCat · 16/06/2017 20:59

@Thingymaboob Thank you so much, that's such a relief to hear x

Sakura03 · 17/06/2017 07:13

What an educational threadSmile. I'm going to Turkey for 2 weeks holiday when I'm 26 weeks. We're staying at a 5 start hotel with great hygiene ratings and we went there 2 years ago so I know that they continuously check the food and the salad bar. I've always enjoyed the huge salad bars they do (have stayed in other big resorts in Turkey before) but now I'm getting a bit paranoid as the consequences of contracting toxo sounds horrendous. If you were in my position would you completely avoid the salads? Its the best part of the food there but if it means putting my baby at risk then I can easily skip the saladsSmile

Sakura03 · 18/06/2017 14:19

Bump

Thingymaboob · 18/06/2017 14:23

Personally, I have been avoiding any salads I haven't washed / prepared myself. That might be a bit over the top but I'm quite a paranoid person, hence, why I know so much about toxoplasmosis

Sakura03 · 18/06/2017 15:34

Thanks Thingy Smile

fenouil · 25/08/2017 17:20

I am so glad to have found this thread. There's diddly squat out there on the net that is as comforting as this page. Thank you everyone for sharing.
I am waiting for an amnio to see if my toxoplasmosis has crossed the placenta. Im now 15 weeks and I tested positive shortly after getting pregnant( contracted it at 4.5 weeks according to tests), having tested negative before being pregnant.
It has been a 4 year journey to get this far and now im 38, I cannot believe what bad luck I have to now have this hurdle after everything else.

My symptoms were, extreme fatigue, difficulty swallowing claggy foods like cheese, and the sweats! I thought that it was just that it was unseasonably hot ( I live in France) and thats what being pregnant felt like. It was only down to routine screening that they found it at 8 weeks. So I have been on antibiotics ever since... so lets hope that was quick enough..

JulieMarieO · 15/11/2017 02:00

Hey everyone, what an informative thread to come across. I am 13 weeks pregnant and was diagnosed with toxo 2 weeks ago after noticing a lump on my neck. I live in New Zealand where they don't routinely test for it but luckily my GP was onto it and got the test for me just in case. Neither of us thought it would be positive given I have had cats my whole life and thought I would be immune but the test showed a possible recent infection. I just had the 2nd blood test yesterday to confirm whether it is recent or not and am now anxiously waiting for the results. My GP wasn't able to prescribe anything to take but we did see a specialist yesterday who gave me Spiramycin to start taking straight away. (it's that uncommon here that only 3 hospital pharmacies in the country even stock spiramycin - luckily I live in the same area as 1 of them)

fenouil - I can relate as it has been a 4.5 year journey for my husband and I to get pregnant too and I am now 40. It seems totally unfair to finally be looking forward to having a family and then have to add this worry on top. We're considering not having the amniocentesis as we likely would continue the pregnancy anyway so it's almost not worth the small risk. Fingers crossed for everyone posting on here and reading through that everything works out ok and our babies are healthy.

Evernia · 21/11/2017 17:39

Hey - I was wondering if everything is ok with you guys?

JulieMarieO · 22/11/2017 00:47

My 2nd blood test came back as positive for a recent toxo infection. Can't quite believe it but unfortunately it is what it is. I will stay on the antibiotics for the whole pregnancy (I think?), we'll have regular check ups and ultrasounds where they'll check for fluid and calcification on the brain, and we can have an amniocentesis at 18 weeks if we want to.

At this stage we're probably not going to have the amnio though. As I got the infection in the 1st trimester, the chances of it NOT having passed to the baby are at 90%. And then the antibiotics help reduce the risks of any damage if it did pass to the baby.

It's something we wish we didn't have to be dealing with, but we have decided to stay positive and look at everything we do have going for us, enjoy this hard won pregnancy and take each step that comes up as we go. And as my mum said, whatever happens this baby will be SO loved by everyone that knows it that we will be able to cope with anything.

@Evernia - Are you dealing with something similar?

HoneyBee47 · 28/11/2017 14:10

I am glad to come across this thread. The information on most sites is terrifying.
At 5 weeks I consumed a pork sausage at a cafe that I wasn't sure was fully cooked. The sausage was not browned the whole way around and it was only barely warm. I did send it back as I had requested tomato instead of an egg so perhaps that delay caused it to cool.
A few days later, I contacted the cafe to find out about their practices. They tried to assure me that a sausage doesn't need to be cremated to be fully cooked and that they use meat thermometers.
I then asked my Dr. about a possible blood test. She said no, that it was just a waiting game and the 12 week or 21 week scan would pick something up if the baby was infected. What kind of advice is that?
I'm not someone that can just wait around if I know something can be done so I contacted my Maternity hospital and a midwife organised a toxoplasmosis blood test for the following day. I will now have to wait for a week for the results.
I hope everything is ok. I'm 50:50 as to whether that sausage was cooked. It was firm which I suppose is something. It didn't have the must texture of a raw one.
It is a scary wait.

thingymaboob · 28/11/2017 17:37

I was obsessed with a pork sausage I ate at about 7 weeks. Read this:
www.pork.org/wp-content/uploads/2010/04/toxoplasma.pdf

It really put my mind at rest. Look at thermal death curves and also if they said they use thermometers then it's fine!!