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  1. #41
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    Also, imagine of I had to keep cycling many more times at the 25mg fs had me on? Surely that's as much a risk as staying on it now? I say it's more of a risk to bub by not upping it, than risk to me by upping it

  2. #42
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    Quote Originally Posted by hummingbird1 View Post
    Can anyone tell me which specific blood tests u got that checked for immune issues as well as NK cells? Does anyone have a list of exactly what you were tested for?
    I'm also wondering if there are any symptoms of NK cells? Apart from recurrent miscarriage is there any other issues u had that made ur FS suspect u had NK cells?
    No symptoms for me except being pretty healthy lol! Apparently nk cells can fight off a lot of stuff
    My first fs (we are up to our 4th now) got nk cells tests done on my insistence after I did my own research after many failed cycles, and she threw in a heap of other tests I didn't even know about at the time like mthfr, thank god she did. That was 2 years ago, but started us on the immune journey.

    Tests I got done were a whole list of things I can't remember as I only remember the ones I have issues with : nk cells, mthfr genetic mutation. Then there are all types of antibody tests like - antisperm, antidna, ANA, antithyroid, and so many more. Celiac is another good thing to check, I've been gluten free for awhile, although I'm not celiac I'm pretty intolerant and it can effect fertility so I wanted to be on the safe side.

    You should be able to ask your fs or doc for a full immune panel, but if you are unsure of their knowledge on this the go to person is Dr Matthias in Sydney. You can phone consult if you are not local, like me. Then you don't have to research anything yourself, he will tell you exactly the tests you need done and will send you the forms for them.
    Otherwise you need to research the various tests yourself, either through dr beers book or website, or google can help!

    All the best, it's not easy, but I have found educating myself has been enormously helpful as you need to be your own best health advocate in this area of fertility as it's not all proven yet or believed by the wider medical community. And you have to be willing and ready to face a bit of opposition if you choose to try these treatments. However, I think the results on this thread alone speak for themselves - buggar waiting 10 years for research papers to be published I say (and so do a few docs I've spoken with)! I was at the end of my rope and willing to try anything, like most of the ladies here. Desperate times call for desperate measures! Real world success stories are what inspired me to keep pushing
    Last edited by lissyloulou; 24-05-2013 at 17:27.

  3. #43
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    A HUGE congratulations to you & your partner Lissyloulou, I was praying for you...another Dr M success! He is on a role, our lil miracle man
    In relation to my protocol I started on dexamethasone up until 8 weeks then I switched to Prednisolone 35mg, only started weaning off it @ 15 weeks & have been old to drop by 5mg each week until I get to 5mg then stay on that until further instructions or tests...usually I think he starts reducing it @ 12 weeks but because I had all the bleeding & threatened miscarriage he kept me on a bit longer...I have been taking 2 -3 caltrate plus tabs everyday to try & protect against the issues they say you could face later on but again like everything there are risks with certain meds...as long our bubs are safe that's all that matters.
    the feeling of realness has only just hit me @ 17 weeks & that's because I am staring to get a belly LOL...I had NO symptons whatsoever so I kept wondering at times if I truely was pregnant it was only the scans that I was having that let me see that there was an actual baby inside me. Saying that nothing can beat the first time you hear the heart beat - now that is a true tearjerker, especially after years if trying...I'm really looking forward to hearing more successes on this thread!
    All the best Crofty hoping your next!

    Welcome to Hummingbird & yellowbird

    Kiwi
    Me 35 DH 33

    Trying since 2009
    4 IVF cycles: 4 chemicals, 3 BFN
    Cycle #5
    Lucky transfer # 8: Feb 2013
    PGD + 1st go under Dr M's protocol with Intralipids and finally my BFP Due Oct 2013
    Last edited by kiwi77; 24-05-2013 at 19:42.

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    lissyloulou  (24-05-2013)

  5. #44
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    Congrats Lissylou! What a way to spend your anniversary . I hope you savour the moment 😉

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    lissyloulou  (24-05-2013)

  7. #45
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    Lissy congrats! I'm so pleased for you and dr m can chalk up yet another success. What a legend!

    I upped pred to 35mg when I got bfp and stayed on it for weeks and weeks. I weaned completely by about 26 wks. FS told me he didn't like it, went through risks etc but I didn't care. Have complete trust in dr m's treatment. I think I began weaning by 5mg/ week around 16wks but stayed at a certain dose (will have I check diary) for about 3 weeks in the middle of weaning.

    One thing no one told me- the pred messes with your blood sugar levels so try and do your GTT after you've completely weaned.

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    lissyloulou  (24-05-2013)

  9. #46
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    Great news!!!! So happy for you lissyloulou!

    i have started my stim protocoll... Getting very excited! Seeing the positive results in here really brings me hope! Thank you girls.

    i wanted to ask about the pregnyl (Hcg)? I have only used that before Egg Collection. Why are some of you useing it after transfer? What does it do? Would you recomment it?

    Good luck to all of you
    babydust

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    lissyloulou  (25-05-2013)

  11. #47
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    Thanks B123!!! I hope i'll be saying the same to you soon too!!

    I've used pregnyl in a big dose as my trigger for EPU (10,000 units), then as a booster on transfer date (1,500 units) and twice more in TWW.
    For me personally I asked to use it as I had read about others using it and probably asked same questions as you! I found out some docs use it for people that have a short cycle or a history of bleeding before the blood test at end of IVF cycle. That happened to me many times before I identified it (yeah I identified it, not my fs which was a bit of a p*ss off, but main thing was I got right treatment in the end). When I mentioned it to fs at the time (my 3rd one) that I always bled days before test and should I be taking pregnyl he said definately. So not only was I not on right immune protocol for many failed cycles, my body was also not giving the embryos a real chance of sticking as AF would always come way too early. Pregnyl helps fool your body into believing you are pregnant as it is fake pregnancy hormone, so it holds AF off i think. So ever since then I took pregnyl boosters and AF never came again before the blood test date, and only when I stopped all medication. But I've found you often have to wait a little longer for a true positive test to make sure it has cleared out of your system and it's the real hcg there. So this cycle they made me wait until 18dpo instead of 16dpo to blood test me.

    Hope that helps, there might be other reasons other people use it I'm not aware of too,
    All the best with your cycle!
    Last edited by lissyloulou; 25-05-2013 at 07:08.

  12. #48
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    Congratulations LissyLou! Amazing news, and so inspiring - our stories are very similar, I hope I'm next! Please keep us posted with your betas and progress. So great to see Dr M's protocol working for so many lovely ladies!

    Hello everyone - hope you are all going well in your immune testing/stimming/TTC journey. Sorry I have been a so slack with posting (work has been insane), but I have been following from afar and can't believe we're on to our second thread!

    AFM - today I am having IVIG at Hurstville, flying up from Melbourne and staying overnight. Finally I get to meet Dr M in person after the phone consults.

    I've started stimming - doing a flare cycle - and EPU is on track for next Friday. Looks like I've got 20-25 follicles coming along, which sounds like a lot but because we're doing PGD we have to get lots of eggs. Unfortunately last cycle only 8 of 22 fertilised eggs made it to Day 3 biopsy (which needs min 8 cells), and only 2 were chromosomally normal - we transferred both and got another chemical

    To date I'm on 20mg of prednisolone and 40 Clexane from Dr M, plus the IVIG this weekend. The prednisolone will be increased to 30mg post ET, and the clexane to 60.

    Hummingbird - most of us have been tested and shown to have either high levels or over-active NK cells - Dr M has tested them in my blood (tests sent to Chicago) and a previous biopsy has shown them in my uterus. I too am super healthy no immune issues in me but in my family there's MS plus a history of blood clotting issues. What triggered me on to immune issues was so many chemical pregnancies - Dr Beer's book categorizes the different levels of problems, NK cells are typically the most severe and need the most treatment with steriods, intrallipids and/or IVIG.

    Lots of baby dust to all
    Last edited by LiteFantastic; 25-05-2013 at 08:32.

  13. #49
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    Thanks LiteFantastic!! All the best with this cycle!
    it certainly helped my state of mind seeing others get over the line too.
    Dr M has actually asked me to get beta hcg & progesterone levels checked weekly until further notice, then said he will check my nk cells in blood again after we hear the heartbeat at first scan, hopefully all still going well then!

    Hummingbird, I forgot to mention I also did a uterine biopsy for nk cells, like LiteFantastic said. Nk cells can be measured with a blood test, but also need to be measured by a biopsy in the uterine tissue. I believe the intralipid/IVIG is more for the nk cells in blood and the steroids address more in the uterine tissue? I might be way off base, so someone please correct me, but that made sense to me as the intralipids flush through your veins?? But perhaps both treatments address nk cells in all areas it just depends on the severity that you have them what treatments levels are recommended
    Last edited by lissyloulou; 25-05-2013 at 10:47.

  14. #50
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    Thanks so much lissyloulou & litefantastic for the info I really appreciate it! And congratulations as well

    Does the NK cells blood test have to be sent to Chicago? Or can that be done here? Is the actual test called 'NK cells'? I can't find any info on it on the pathology sites. Thanks again


 

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