Toxoplasmosis

[DebbieF]

I've posted a thread in the first trimester forum a few weeks ago, but I thought maybe this would be a better place for it.. I had my first blood test for toxo taken on April 24 and it came back positive, then again almost a week later on April 30th. Still positive, both the igg and the igm titers. The second test was sent to a special lab in Palo Alto California for more testing. It's still there! They said the earliest I will get any answers is May 24th! SO all in all it will have been an entire month before I get any answers. I have googled toxo to death and I am SO scared of what may happen if the baby has gotten it. Quite a few websites even recommend terminating the pregnancy.. I feel that all of this waiting is no good.. I mean, shouldn't I have been on the antibiotics by now to try to prevent it from spreading to the baby? I talked to one of the OBGYNs and she said that in her 17 years she has never had a patient come back positive with both the igg and igm titers. I really think at this point they don't know what needs to be done. Should I try to find another doctor or just wait this out? I really need someone to talk to who has been through this or a similar situation. I only work part time now so I just sit here googling things and crying for the biggest part of the day.

 

[DebbieF]

Am I the only person in the world who is / has gone through this? I just feel so alone.

 

[Ameli]

So sorry no one has responded! I didn't want to read this without responding, but unfortunately I don't know anything about it. Sorry I couldn't help, but I hope everything turns out ok for you. I hate you're having to go through all of this stress.

 

[Blue12]

Im sorry I can't help you directly, but do see as many drs as you need to and advocate for yourself!!!!!

 

[maxalias]

I am sorry you are going through this hun xxxx I wish I had some advice for you x

 

[xturnitoutx]

Debbie,

While I can't relate to your situation directly, I can share a similar situation I went through with this pregnancy. I am Rh negative and when I started spotting, my doctor sent me for a rhogam shot at the hospital. Prior to getting the shot, they do a blood draw to make sure you are negative for the antibodies ... you wait a few hours, results come back, and you get the shot. So I get the awful call a couple hours after the blood draw that my results are POSITIVE for the antibody (the lady from the hospital lab calls and says, all upbeat, 'your results are positive, so you don't have to have the shot!!' .. uh, yeah thanks lady ... my body may start attacking this baby and I may not be able to have any other children - great!!) ... My doctor's office calls and I tell them yes, I did have a rhogam shot with a miscarriage in November - but rhogam shots are only supposed to last 12 weeks; it had been approximately 20! My doctor did NOT request a titer and did not give me any advice ... basically a 'let's play it by ear' ... ok??! ... I googled like crazy and found very, very few stories of false positives when the time elapsed was as long as it was for me. Anyway, fast forward to first trimester blood screening ... negative for antibodies! (My doctor apparently found the whole thing so uninteresting that he didn't even remember I'd ever tested positive!)

I know that my situation isn't exactly the same as yours, but my understanding of toxoplasmosis is that any real danger to the fetus occurs when a woman is infected DURING her pregnancy, yes? In other words, if you were infected prior to your pregnancy, your baby should be fine?

Were you ever tested for toxoplasmosis before this pregnancy? If not, it seems that it's MUCH more likely that you were infected BEFORE the pregnancy than during the few weeks that passed between you getting pregnant and you testing positive, no?

I imagine they are currently trying to determine if the infection is old or new? Did the titer(s) in April give them any indications one way or the other?

Consulting another doctor with experience in toxoplasmosis in pregnancy might be a good idea . . . Perhaps ask for a referral to a perinatologist? (ONLY if you think it will make you feel better!)

I hope it all works out for you! I'm so sorry you're having to go through all this stress with your pregnancy - I have a feeling everything is going to be just fine

 

[DebbieF]

Thank you so much for your replies.

I "think" I may have first gotten the toxo back in Nov or December as I had a long lasting headache and swollen lymph nodes. I went to the dr at the time for those things but they didn't know what was causing them and just advised me to take Advil. But I really think that is when this nightmare first started. That is what I'm hoping at least. I had blood taken again today at both my husbands and I request. I NEED for them to check the igm differential and see if they are remaining the same, lowering or rising. Hopefully it'll come back that they are lowering and NOT rising. They have been in contact with the fda to get me Spiramycin (It is not approved here in the US but it is in other countries) I don't know how long this is going to take now.. I honestly wish I had never requested to have the toxoplasmosis test done.. You know what they say: ignorance is bliss..

 

[Ameli]

Best of luck. Keep us posted!

 

[steph.]

Hi Debbie, I dont have toxo but i can totally relate to the googling and crying, and the torture of waiting. Last week i was told our baby has a 1:20 chance of a chromosomal defect due to terrible blood results. Like you i wish i had never taken that stupid blood test! It is ruining my pregnancy. I dont feel excited or happy, i just feel really worried and depressed. I go in for an amnio thsi friday and should get prelim results next week, and full results in 2 weeks. The waiting is so hard. Hope everything turns out well for both of us xxxx

 

[DebbieF]

Good luck on your amnio Steph. I plan on having one too when I am further along. Google is really NOT our friend at times like these.

 

[DebbieF]

I had a 3rd blood draw to check and see what the toxo levels are doing, (rising,staying the same or lowering) and they are stable, which is better than rising I suppose. I have a midwife appointment next Tuesday so hopefully we'll get some more answers. The doctor doesn't seem too concerned so maybe I shouldn't be? I wish I could enjoy this pregnancy but it is hard when all I do is worry.

 

[steph.]

It sounds reassuring that the doctor doesnt sound concerned and that the levels havent gone up. I love reassuring doctors. I know that you wont stop worrying until you get the all clear though! Thinking of you and buba xxxx

 

[xturnitoutx]

sounds good!! will you continue to be tested?

please keep us updated!

sending lots of positive energy your way xx

 

[DebbieF]

I probably won't continue being tested. When I am far enough along I will probably get the amnio and some sort of special scan that may be able to see any problems. I SOOO want to hear some good news soon.

 

[DebbieF]

I am going to schedule the special scan for the beginning of July. They are able to look for calcification on the brain and take a closer look at the eyes also. I'm hoping this works out well and they see no problems then I will probably opt out of the amnio.

 

[steph.]

Hi Debbie, how are you getting on? I hope the next 2 weeks go quickly for you and that you get some reassurance at the scan!

 

[DebbieF]

Hi Steph, my OBGYN actually referred me to a specialist and I am having the scan on Wednesday the 19th @ 1:30. They said they can also do the amnio on that day, but I'm still unsure about it. Hopefully they are willing to do the scan first and then we can make the decision about the amnio. I've also heard they may be able to tell us the gender. I really want to know, but if something is horribly wrong maybe it would be better for me not to know? I'm sitting here crying again.. I was feeling pretty good about things until I started typing this out.

 

[steph.]

Oh no! I made you feel worse!

I'm glad they moved the scan for you, and hopefully you will get some peace of mind. I think they have to do the ultrasound first, they have to to assess position of the baby and the placenta before an amnio anyway. I am sure everything will look perfect! Will be thinking of you and bubba tomorrow xxx

 

[DebbieF]

I had the scan yesterday and everything looked normal so far. I did not have the amnio yesterday, but we have now decided we will have it. I made the appointment for July 3rd. How bad is the amnio? I am so concerned of the risks. I know the chances of something going wrong are low, but with my luck...

 

[Ameli]

Beautiful scan. looking great!