Firstly I wanted to thank the moderators for setting up this area so we could discuss our various immune issues that are effecting our fertility.
I have high natural killer cells CD56 (blood) and CD57 (uterus). I've had 2 FET's on the bondi protocol with no success. Prednisolone and clexane. I just recently changed FS and I'm with Dr. Matthias now, apparantly the only Reproductive Immunologist in Australia. I will be put me on a more agressive treatment which is what I need. He has requested I have another endrometrium biopsy and hysteroscopy first to determine exactly how high my uterine nk cells are, it's sceduled to take place next Tuesday.
I have very poor egg quality also hense why I've been to Cape Town for donor eggs. We have 2 more frozen embryos so my DH and I are currently working out if we'll have 1 more attempt (and transfer 2) or 2 more attempts (transfer 1 at a time) which will of course be much more costly and scarey if I do all the pre treatment (for immune issues) and fly over to Cape Town only to find the final embryo doesn't survive the thaw, it's such a risk.
At this stage I'm in limbo. Waiting, waiting, waiting!! We'll know more once I have the biopsy and have an immune treatment protocol. I can't wait to get started. Once again I'm finding everyone around me are pregnant with their 2nd child. Of course I'm happy for them but it makes me even MORE determined to finally achieve success and provide a sibling for our beautiful darling boy.
I look forward to chatting more to everyone and hearing your stories.
Results 1 to 10 of 938
08-08-2012 07:55 #1
High Natural Killer Cells
The Following User Says Thank You to helenmac For This Useful Post:
09-08-2012 09:01 #2
Thanks Helen for your help to set up this little oasis just to ourselves! I finally feel I belong to something and finally feel there might be some hope for this TTC journey.
Its hard to decide whether to put 1 or 2 back and I hear your concerns, go with the flow, I think you will know it when the time comes. Best of luck Helen, will be keeping an eye on your cycle in September!
After 5 years on and off IVF since 2007, one m/c and countless cycles, my husband and I pretty much made peace with it and decided to get on with our lives. My last 1 stim cycle and 2 FET was with Dr. Sacks on his bondi protocle with no success. the only change he made with the protocel was to increase the dosage of Pred from 20mg to 25mg + clexane as usual. I just did another NK cell test, the CD59 came back still really high around 31%. Apart from that, we haven't found any other issues in the reproductive front.
After many years' gruelling experience on IVF, my DH and I decided that we no longer want to do a stim cycle, just to put the two frozen embies back in and that's it. We need to draw a line somewhere in the sand. We are going to Vanuatu for a holiday and plan to do a FET in Sept, it is this time that I have found your guys and consequently got to know Dr. M. Its not the first time I heard his name, but this time for some reason it really struck a chord. I made an appt with him on 30th Aug and can't wait to get the testing done and start the protocal.
Some information Festivalgirl shared was very helpful with regards to the test prior to protocal set up, the treatment, the cost. At least we can mentally prepare what's upcoming!
I hope this forum will provide us a place that we can share this experience as in the past I find this condition is a bit rare and not many people know about it. I truely hope with Dr. M's help, we will all have our dream fulfilled and we will have a few pre-Xmas pregnancy announcements! Good luck girls!
10-08-2012 06:34 #3
I don't know whether I can join here... I don't know if I have uterine NKcells or not but I do have immune issues which were causing me to miscarry frequently (4 times!) plus a couple of chemical pregnancies. I've done 2 ivf cycle and about 9 or so transfers...
After doing some online research I stumbled across Dr Matthias and decided to go and see him. He found some immune issues in my BT that no one ever mentioned before. He was of the thought that if we could get my body ovulating (PCOS) I could fall pregnant without ivf. Of course I was extremely skeptical but I'm getting married in September so I thought we'd give it a go until after the wedding. I did 3 cycle of first a single, then a double dose of Clomid which failed to make me ovulate. So he bumped it to a triple dose, and voila! I ovulated for the first time in a very long time. I started OPK and temping like a woman possessed. Fast forward a couple of cycles... I added preseed and fertileCM (I was also taking dexmethasone, megafol, aspirin) and I got my BFP! Words cannot explain how unbelievable that was (and still is).
Anyway, here I am nearly 11 weeks pregnant with a happy healthy bean growing away. I switched from the dexmethasone to prednisolone and still on megafol and aspirin, and also Clexane was added to the mix. Seems to be working a treat.
Anyway... Since obviously I'm not TTC I'm not sure if I can lurk here, but I have been through Dr M's treatment and if you want any further info please PM me! I will be hanging around to see you all get your BFPs!!
The Following User Says Thank You to nat84u For This Useful Post:
10-08-2012 10:14 #4Member
- Join Date
- Jun 2012
I'm not sure if I have NK cells either. I had my phone consult with Dr. M last week and he sent me a request form to have some bloods done, still waiting for results will probably take a couple of weeks.
I first read about Dr. M on BH and googled him and stored him in my favourites just incase! Then I read about him again in the other thread and thought I'd call. I'm really hoping he finds something in the blood tests. Earthgirl I have also come to terms with it and am trying to and get on with my life after coming to the conclusion that it's highly unlikely I will have another child. IVF has taken it's toll on everything in my life and I have decided it's nearly time to call it quits so Dr.M and his protocol is going to be my last chance.
Wishing everyone the best of luck and I look forward to reading your experiences with Dr.M.
10-08-2012 10:54 #5Member
- Join Date
- Aug 2011
Helen - thank you so much for your idea to set up our own spot in the forum. It is wonderful.
I am about to start my third stimulated cycle at Genea after a miscarriage and 2 chemical pregnancies (my last one in April 2012).
After the last cycle failed my FS did some more blood tests and I got a high ANA reading in a blood test 1:640.
This led me to Dr Matthias in Miranda to test for potential immune issues.
The good news is that I finally have an answer from Dr Matthias for unexplained infertility/miscarriage/chemical pregnancies. After doing blood tests with him (sent to the US) and also an endometrial biopsy - I have been diagnosed with very high natural killer cells (CD56 of 81%) and also very high TNF Alpha.
Dr Matthias says this is "not terrible" and can be treated with an immune protocol.
So, as I am over 40 and can't waste a minute, I have started on a treatment protocol already: prednisolone 25mg for 21 days prior to a stimulated cycle
Once I start my cycle later this month, I will also be on clexane (from my FS) and then IVIG with Dr Matthias. I will know more after my next appointment with him.
I have a girlfriend who is consulting with Dr Gleicher in New York and he convinced her to use 2 X day 3 embryos for her treatment with Dr Matthias and she is now pregnant with one baby. So I am considering doing that rather than waiting to see if I can produce a Day 5 embryo for a single transfer. So many decisions and such hope.
Wishing you all luck and at the very least an end to our long journey.
10-08-2012 14:34 #6
I'm thrilled to see this thread has taken off and of course everyone is welcome regardless if you have high nk cells or not. It's just so much easier to find all our threads/posts now that we have our very own section!!!
Earthpower - I was also with Dr. Sacks and had two FET's on the Bondi Protocol with no success. 1st BFN & 2nd was a chemical pregnancy and we increased the dosage on the 2nd attempt but it wasn't enough. That's when I decided that I'm not going to waste anymore embryos on his protocol and I'd always remembered Dr. Matthias from many different forums so something told me that we should change to him. Sounds like the same with you! I look forward to hearing about your apointment on the 30th. I expect Dr. M will request blood tests and a biopsy which will be able to give a clearer picture.
What is CD59? Do you mean CD56 high nk cells in the blood? I haven't heard of CD59 before. Sounds like a good plan to have your holiday first and then your FET, keep in mind sometimes the testing & immune treatment takes a number for weeks prior to your FET so it could delay your plan for a Sept transfer. This is what is happening to me, my FET will more then likely be delayed until Oct due to my pre-immune treatment.
Nat - Of course you belong in here! You have been a great support for us immune girls! You've helped me feel it's definately the right way to go with Dr. Matthias. Although Dr. M's treatment can be extremely costly I know in my heart if I don't attempt his drug protocols then I'll live with regrets, always wondering...what if? I can then move forward with closure if the treatment fails but hopefully I'll be rewarded with a BFP!!! (that goes for all of us!!) Wonderful news you are 11 weeks now and bub's is thriving! All the best for your 12 scan.
Gretchen - Welcome to the thread. Are you just having the local BT's or blood's to be sent over to Chicago as well? Are you having the biopsy? Dr. M is our last shot as well so I know how you feel. There is extra presure cause it's so final but hopefully all our perserverence will pay off!
Festival girl - Hello again! Looking forward to seeing how you progess on Dr. M's protocol. Wishing you every success and we'll all be here to support and cheer you on!
April - Great that you have found this section. Fingers crossed this cycle is the ONE and that you achieve your BFP so you don't need further treatment with Dr. M but it's good that you lined up an apointment as back up, just in case.
AFM: In 3 days time I'll have my biopsy! I'm not really worried about it considering it's under a light general so I won't feel a thing. Can't wait to hear the results and then be able to move forward with a treatment plan
Last edited by helenmac; 10-08-2012 at 14:37.
11-08-2012 16:54 #7Junior Member
- Join Date
- Aug 2012
Hi, hoping I can join! I've actually had a bit of trouble finding others who are dealing with NK cell issues so very pleased to find this thread.
Bit about me - Been TTC for nearly 3 years, one confirmed MC and what I think could be 3 chemicals. Everything for us has come back above board except for borderline NK cells - my uterine biopsy results shows elevated CD56 and CD57 cells at 10dpo. Thankfully my FS has taken my results seriously and has asked that I also go for a blood test at Kogorah before starting my first IVF cycle - this is all happening over the next 10 or so days.
Anyway, nice to find a place to chat and hope we all have successful pregnancies soon.
11-08-2012 21:52 #8
Wow, so glad to see so many of us here after a long journey, seems Dr. M is the last resort for many of us. I wish I know him (or rather take the action) earlier and wouldn't be great to make immunological testing a compulsory before people embark on the endless IVF cycles ...
Satelite75, good luck with your upcoming test, I hope your FS will have a plan for you...
Helen, I think you are right its CD 56 (or on the test result it says Total NK cell) not CD59 and yes its just the blood test. So I have no idea what the uterine NK is like. We have to wait and see...Thanks for the heads-up regarding delayed cycle, from reading the other thread we had earlier, I figured that my plan will be delayed. But I rather wait when there is a proper plan than wasting my two LAST precious embryos for sure!!! I think if Im lucky I might be able to catch a mid OCT cycle, so we can be cycle buddies?! Now can't wait for the appt and I just want to get on with it and get the test done and get my protocol!
Festivalgirl, Im so glad you finally have found the reason, I say that's half of the battle won! Im 41 this year, so you are spring chicken and Im sure Dr. M's protocol will make a difference. From my years of the IVF experience, I think its worth consider 3 days embie given now you have the NK issue treated. I always feel the FS tend to over-play the quality of the embyros or the age or the quality of the egg when they are thrown into the unknown territory because no one can argue with them. I know it sounds a bit cynical but I have seen people got pregnant with a Day 2 embryo not looking particularly good while all my A grade Blastocysts were not implanting. Just food for thought and Im sure the decision will come to you... Best of luck for this cycle.
Gretchen, good luck with the test, I hope you find the answers you want it. It might be just the lucky last get us pregnant you never know. Do let us know how you go.
Nat, of course you are welcome here and your experience and contribution will be so much appreciated plus we seriously need some pregnancy vibes, so loads of them to us!
12-08-2012 17:17 #9
Hi girls, just been calculation my days and would like to know if it is hard to get an appointment to do biopsy and do you have to wait as I don't want to miss out on another month waiting. Also where do you go for blood test? can you just do it anytime of the month and do you need a booking? I heard all the good things about this first courier, do you have a choice with them or they are just nominated courier?
12-08-2012 17:31 #10
Sorry girls, I think Im just having a little crazy party in my head here. Have been searching to see if Uterine biopsy is a must test and find this comment in an UK forum " Some Dr. prefers to use the NK assay and the cytokines assay - and only adds the ubiopsy if your NK assay and cytokines assay don't reveal any problems requiring heavy immunosuppression (because otherwise he would be prescribing strong meds anyway, regardless of the biopsy so there is no obvious need to add an invasive test)."
For the girls who have already seen Dr. M, does he follow this logic or just do both tests regardless. Thanks guys!
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