[Tweetiepie]

Hello there

Just wanted to ask if there are any of you on here that have had a negative LAD and have a DQ Alpha match, that decided NOT to do LIT but got Pregnant, using other things such as steroids, Clexane, ILs and IVIG

I am having a real hard time trying to decide whether I should do LIT or not.  DH is not convinced... and it is quite a controvercial tx to do...

I have had LIT done once with Dr Armstrong and 4 times in Turkey... But heard from Dr Gorgy that the one I had done in Turkey was done in the wrong place (in the back of my upper arm)... apparently it needs to be done in your inner forearm... as that is where your body reacts and creates a better reaction to the LIT...

Would loooooooooooooooovvvvvvvve to hear back from any ladies that went against advise of doing LIT... and that got PG anyway.

Thanks in advance xxx

Tweets xxx

 

[ClaireBuc]

Hi Tweetiepie,

I have recently had lit done by Dr G and went from 2% to 92% using my dh blood and only had to have two lots (thankfully), however on my recent tx i got a bfn. 

I have had three bfp's prior to this but have miscarried each time, although i do have raised killer cellsand cd19+5, so this could be the problem, Dr Gorgy couldn't understand how i had previously got pregnant as he though it impossible given the fact that my levels were so low, but on my previous tx i was on .5ml of dextamethasone and 20ml clexane, this tx i used 25ml of prendisolone and 40ml of clexane after my bfn and talking this through with my consultant she stated that in america they prefer dextamethasone as it gives better implantation rate's, she is going to use this on my next tx up until we get a bfp and then transfer to prendisolone as it has less side effects and also we can only be prescribed 2ml of dextamethasone which is equilvalent to 14ml of prendisolone.

She is also not a fan of IVIG which is what i had and doesnt really believe in the immune issues but is happy to help as much as she can, she is more than happy to arrange intralipids for me and agreed to give me a private prescription for this on a four weekly basis through the pregnancy. 

Hope this is of some help.

Clairex

 

[agate]

tweetie: logically, there must be very many ladies who fit that category but haven't tested their LAD or DQa.

 

[Tweetiepie]

Hi Claire - thanks for your input. Sorry to hear of your recent BFN and your MCs   I really hope you get there in the end.  It saddens me that it is so hard for some of us ladies    It is just so hard to try and decide what the right thing is to do.  I mean i know I had a weak positive lad after all the LITS I did have and still it didnt give me a pregnancy.  That is interesting what Dr G said since I too have had 2 pregnancies that ended in mc without having had the LIT.  So that in itself is evidence that pregnancy can occur when LAD is low (not that I tested it at the time... but presume it would have been negative it it was later negative)...

Thing is, at exactly what stage does our immune system kick in and start to attack the embie I think I read somewhere that the immune system attacks the placenta as the placenta is what carries the HLA of your husband and if there is too close a match, and low blocking antibodies, then the immune system attacks... I guess this happens when the Placenta starts to grow?? 

Its all very confusing.  I feel very frustrated as to what to do really... its impossible to make a decision

Agate - yes, there MUST be women that do get pg and have babies... since not many women do get these tests done or have this tx.  Another part of me, however says, what if the % of women that never do get a successful pg are the ones that could have 'if' they had done the LIT...

And going on that basis, I would feel foolish not to do it.... its just so difficult. 

Part of me says dont bother, part says do it... this whole journey could really drive you nutty!!!     

 

[ClaireBuc]

Hi Tweetiepie,

All I can say really is go with what you are happy with, i think the immune system kicks in a lot earlier as otherwise we wouldn't have problems in getting pregnant , this time whether it was my immune system or not we will never know but i had a really high temperature 3 days after a 3 day transfer i was so hot i had to stand outside.

I have only had one natural pregnancy and that was about 9 years ago, this one and the other two showed problems at about 6/7weeks the last being that on the scan the growth started to slow down and within 10 days i had another scan and it was over.

Hoping you can get through this as is it really hard not knowing whether we are making the right decision but just go with you gut instinct.

Clairex

 

[agate]

the placenta starts to grow as soon as the emby starts to implant.  the immune system will usually start to attack immediately if it is going to... however it may not not cause the pg to fail immediately, but it may stop the emby from growing and flourishing leading eventually to a miscarriage because the placenta is not good enough to provide the nutrition that the embryo needs to keep developing normally.

the idea with LAD is that, many ladies might start with a negative LAD before they get pregnant, if their immune response is normal, it ought to rise with pregnancy as the body quickly learns to recognise the foreign DQa of the embryo.  The assumption is that if you have have been pg before, but your LAD hasn't risen, your body is not good at recognising the embryo and that is where LIT is supposed to help.

 

[meggie10]

Hi Tweetiepie,
i know of several ladies now (mostly on the CARE website) who had neg lad and dq aplha matches who did not have lit (as George said intralipids would deal with the issues) and are now pregnant, one has just had a baby (she had had 4 mc's previous to this) then tried using steroids/intralipids/b6/b12/heparin etc....George at CARE seems to be just using intralipids these days and not really recommending lit anymore. Atleast Mr Gorgy does lit himself now so it's much easier than going to Greece if you did decide to do it.
Best wishes
XXX.

 

[Tweetiepie]

Claire - sorry to hear of your M/Cs.  You are right - the immune system must be activated much earlier.  I have also had strange symptoms around test time.    Its hard to know what the right thing is to do though.  I suppose the only thing that we would loose by doing LIT would be some money (well actually it is quiote a bit since it is quite expensive).  Thanks for your message 

Agate - thanks for your message... you have so much knowledge... it is frustrating isn't it.  At one point in the past I ended up reading so much about it all.  Lately I kind of stopped reading so much, and it is surprising how quickly you can get out of date with the new innovations (such as hidden c and the semen sensitivity test)... seems like new tests come out quite quickly and ideas change... 

Meggie - Thanks for your message.  Your message shows the other side of things.  It is good to know that George does not reccomend LIT anymore.  I suppose it is all to do with trial and errorr, since (I can imagine)  not many of the patients would be willing to be part of a study... people have to do what they believe in...

It is just that I have tried The Steroids, Intralipids Clexane, olic acid 5mg with B12 and B16 vits before and still have not had a successful pregnancy via IVF... Thats why I keep thinking maybe I need more...

But I must be honest, I think having spend a considerable amount of time thinking about it, i have a feeling that I have to go ahead and do the LIT.  Since if I do that, then if I do end up with a bfn then, at least I can say I did LIT, Intralipids and IVIG and the rest of the stuff (minues Humira - as no longer keen on that really - a personal choice) - and that I have done everything within my power to get there.

Its just mad how it is so hard for us to achieve our dream.  Through the years I have seen lots of felow FF'ers have their dream come true.  I am ever so happy for all of those ladies, but it is just very difficult to accept not getting there ourselves   

Hopefully these last attempts will get us there eventually. 

Good luck to all of you lovely ladies, i really do appreciate your messages and support!  As it would almost be impossible to make such decisions without your opinions!!!

     

Hugs

tweets xx

 

[agate]

if you are wanting to tick off everything have you done the greek chlamydia test?  info on the faq

 

[Tweetiepie]

Hi Agate

I have considered having this done.  We have always had our regular testing for Clamydia come back clear, and the ARGC have always found this sufficient. 

I have heard that there are a lot of false positives due to the fact that the test is carried out on a blood product.  EG - with other swabs great care is taken to do them once your AF is finished so as not to contaminate the sample with blood.

So I am not so sure as whether we should do this... Another test that needs to be weighed up in my mind as to do or not to do.

I need a little smiley here to animate me pulling my hair out lol    maybe we should request one from the moderators     

 

[Bluebell14]

Hi,

I have negative LAD and matching 1.4 dq alpha match, v high  NK cells i have been prescribed Humira, Paternal LIT, Intralipids,  prednisone clexane etc etc, im going to try  steroids and Intralipids  first if i still miscarry i will go 4 full immunes, it is essentially  your choice but if you have already tried without LIT and it failed i  would want to do what ever i could next time in the hope that it may  work x

 

[agate]

tweety:  the lab in greece use different reagents to the ones normally used for C in urine or in swabs - they aren't supposed to be invalidated by enzymes in blood - bear in mind that other pcr tests are commonly used on blood samples- its just a case of picking appropriate reagents - there are not supposed to be any false positives with the greek test - i can think of 2 ladies on the board who were found to have a chlamydia on the greek test but not on the ordinary tests which only test material from lower down the genital tract - they treated it and are pg.  it may not be the answer for you but it could be worth checking - antibiotics are very cheap compared to other tx's if the test does come back +?

 

[mickey111]

Hi Tweeteepie,
I would agree with Agate, its worth doing the C test. Both me and my husband have had the ordinary UK tests done for C, my DH via sementest, me the HVS and both came back negative (many times). However, when I sent my sample to Greece, it came back positive (10 to power 5, so moderate to high level, I cleared it in one go of AB's).  My Dh used to have a problem having to get up in the middle of the night to have a pee (he thought that was normal and part of getting older, he is only 42), since taking the AB's he hasn't got up once! So clearly it was trapped inside him too.  It's one of the cheapest things to set right and it might be what is causing all your losses. So I would certainly investigate, you can send the sample yourself and it will only cost you 90EUR. We are hoping to start cycling in Jan with Dr G and pray this will make the difference. Good luck whatever you decide. I know as time goes past it just gets harder, but keep believing in it. All the time, they are finding out more, there is hope and one day it will be you sending the BFP note!!! xxx

 

[Tweetiepie]

Mickey - looks like the C Test really paid for for you and your DH as it has cleared his little problem... I showed your message to my DH as he gets upin the night too... make sure he has a prostate (is the test called PSA Only a urine test) check just incase though... dh had the test and he is ok (touch wood!!).  Thanks for your advice!!!  Good luck. Hope we all get to send that BFP note soon   

Zoella - I have done everything really... and that is why I am stuck now, having done 4 injections of humira and IVIG.  The only thing I have never done is the Intralipids, The Hidden C test and the Ureaplasma and Mycoplasma for me and DH....

Agate & Mickey - If I get the Hidden C test done independently - won't Dr Gorgy mind prescribing me the meds Or does he insist that the test is done via him if he is to prescribe?

   

 

[agate]

tweetie: i don't THINK he would - but you'd definitely have to pay for a consult fee - otherwise, I THINK some ladies have made contact with pharmacies in greece who will supply the meds without a Px - but maybe if its + you would want a phone consult either with dr g or with peny at serum to discuss it anyway?

I think you can get your dh's semen tested for the same bugs if you want to - some dh's apparently prefer to do that rather than take all the antib's - there is a chat thread about the tests on the greece section

 

[Tweetiepie]

Thanks Agate   

I am completely modifying my message...

Dr Gorgy's secretary just told me over the phone that they cannot test for the hidden c for men... I asked her about the semen test that is £75 via tdl and she told me that this is only for Ureaplasma and Mycoplasma...

But - Agate, in your FAQ, you mention that you can have a PCR test for Chlamydia (and it also says this on the TDL site).

So just a little bit worried about what the secretary is telling me at Gorgys office.  I think this secretary is a different one to the usual lady.

Tweets x

 

[agate]

I don't think the £75 includes testing for other bugs and I am not sure if TDL do mycoplasma/ureaplasma PCR in semen - I think they probably do - but the test manual doesn't specifically say that they can test semen for it, only that they can do pcrs for mycoplasma and ureaplasma.  But they do do a combined semen culture for mycoplasma and ureaplasma - that won't be quite as sensitive as a pcr - and I don't know the price but I expect its probably quite a lot cheaper. 

 

[Tweetiepie]

Hello Agate

I have just called TDL and they do the PCR tests on all 3, Chlamydia £52.50, Mycoplasma £48 and Ureaplasma £48.

Do you think it would make sense to get all of them done if you had the opportunity to claim all of them on Bupa

If for example DH came back with negatives on all tests, would that mean that I would not have to bother with having the tests done, or do you think I should still have the test done??

I am going to try and figure out how to arrange the test myself independently... As I think for the woman, via Dr Gorgy, tthe test for Hidden C, Ureaplasma and Mycoplasma costs £400... which is quite a lot.

PS - Agate, you are so knowledgeable... very impressive indeed   Do you by any chance work in the medical field  Also I cannot see from your summary what stage you are with tx etc... would love to know in a nutshell   

 

[agate]

am not having tx at the mo - am breastfeeding baby 'K' for the forseeable future but hope to eventually try for 'baby L'. 

from what i can gather - C is more likely to stick around in women - we seem to be worse at clearing it than men - but mycop and ureap cause more problems in men - if you think he may have something symptomatic - a semen culture might be a better bet because although it is not as sensitive it should pick up any and all bugs there

most ladies just get the tests done on themselves and then get their partners to take the antibs just in case - and often only resort to testing their dhs if they refuse to take the antibs. yes i am sure i remember tdl being able to do semen pcr for C.

it is much cheaper to do the menstrual blood tests direct with locus - 90eu per bug (plus courier/post - post is v cheap, but less reliable and can take ages, but the samples don't go 'off' quickly) - then if positive see dr g at that point for the tx - i would make testing you the priority -but i guess its nice to have him tested if you can get it paid for just in case

 

[Tweetiepie]

Ohhhh well this must all for a very belated Congratulations        So can I ask what tx's and immune therapy got you to achieve your dream in the end 

The reason I looked into getting Dhs semen tested was because he is seeing a urologist at the moment for some bladder problems (just gettign up in the night) so thought, well, Bupa could cover it, so thats one plus point, and also, it may benefit him.  I think it was Mickey here on FF that mentioned that her Dhs problem got better once he took the meds....

I will have to ask if the urologist has already done the tests though... I would be dissapointed if I suddenly get the bill through to us though lol... then again it does count as an investigation..