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  1. #271
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    Hi ladies. Where are these wonderful doctors you speak of?? I need to find a new clinic and fs that can help me with immune issues. All I know at this stage is I have high nk cells and the mthfr mutations.

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    Ceasar, most fs's dont have the knowledge for immune issues, thats why I went to the expert in this field, dr m. I'm in Adelaide and did phone consults. You can keep your fs and Dr M quite separate, I have. My fs knows I'm seeing him and I let him know what medications I'm on, but thats about it.

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    Hello Precious Heart,

    Thank you so much for your feedback and positive energy! God knows we need it right now. Dr Nick is obviously a genius but very down the line bordering negative but the fact is he is realistic I suppose.
    To be honest I really don't know how bad the genes are that my husband and I share because we asked no questions just walked out utterly devastated and heartbroken. We decided we would go down the path of adoption but that wasn't for us so we discussed going back to Dr Nick and have finally made that appointment.
    I trust him which is all that matters. I just hope so desperately it works. I hope so much that your Dr helps you have you baby also. People who don't have this struggle would never ever understand so we really all have to be there for each other. I can't offer much in the way of advice after all our failed cycles other than I know the pain of living with it and trying to get on with the day to day struggles of everyday life and saving so you can pay for your next round of IVF.
    Have you read "Is my body baby friendly" by Alan Beer? It's a book Dr Nick suggests we read and I only just ordered it tonight from The Book Depository as no book shops have it in stock.
    Would love feed back if you have.

    Thank you thank you again and good luck to you also xoxox

    Jo x

  4. #274
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    Hi Caesardust!

    We started seeing Dr Nick Lolatgis in Monash Fertility Centre in Melbourne. It takes a while to get into him but he is a leading Dr in the field of immunity and NK cell infertility.

    Good luck x

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    Caesardust  (17-09-2015)

  6. #275
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    Jojo, its a great book. Gives you great insight and understanding on all the immune issues out there and treatment required. Dr M was mentored by Dr Beers.

  7. #276
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    Quote Originally Posted by Jojosniss View Post
    Hello Precious Heart,

    Thank you so much for your feedback and positive energy! God knows we need it right now. Dr Nick is obviously a genius but very down the line bordering negative but the fact is he is realistic I suppose.
    To be honest I really don't know how bad the genes are that my husband and I share because we asked no questions just walked out utterly devastated and heartbroken. We decided we would go down the path of adoption but that wasn't for us so we discussed going back to Dr Nick and have finally made that appointment.
    I trust him which is all that matters. I just hope so desperately it works. I hope so much that your Dr helps you have you baby also. People who don't have this struggle would never ever understand so we really all have to be there for each other. I can't offer much in the way of advice after all our failed cycles other than I know the pain of living with it and trying to get on with the day to day struggles of everyday life and saving so you can pay for your next round of IVF.
    Have you read "Is my body baby friendly" by Alan Beer? It's a book Dr Nick suggests we read and I only just ordered it tonight from The Book Depository as no book shops have it in stock.
    Would love feed back if you have.

    Thank you thank you again and good luck to you also xoxox

    Jo x
    I'm reading that book at the moment. I'm having so many aha moments!

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    Miss Sagi  (17-09-2015)

  9. #277
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    Quote Originally Posted by Caesardust View Post
    I'm reading that book at the moment. I'm having so many aha moments!
    I really hope it helps me understand it all abit better. I have don't no research since our diagnoses just blocked really but we are really now so will get stuck in when it arrives

  10. #278
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    God would you look at all the spelling mistakes!! So sorry been a very longggggg day haha

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    Oh Charlie74 I know how you feel. So much so we took time off from it and I must say it has helped. Dr Nick has suggested to get the book maybe so he doesn't has to explain everything and he are armed with questions when we go. It's all so hard and very uncertain but the more information you have the better you will feel in my eyes anyway. Knowledge is Power. We don't have our appointment with Dr Nick until December and won't start treatment until next year sometime so it's like crumbs of information, sourcing and trying to understand. I know the anger you feel. I know the drop in the tummy when I think about it all but for some reason these are the cards we have been dealt and we have to find the strength to deal with it one day at a time. We deal with it by taking time out and as much as I just want to get on with it my husband is right for us we need the space to process each finding and reassess each option.
    I don't know if I have helped you at all. I really hope you find some peace and strength as you go through this process xo

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    Charlie74  (17-09-2015)

  13. #280
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    HI Everyone, I"m with Dr NL, though I don't have the HLA match issue. But I thought I would chime in here as Dr NL does treat with Neupogen. I'm on it right now, in fact. I did have to push the issue with him, as he preferred I don't use it. But he was more than fine prescribing it and I know from his nurse that a lot of other patients are on it too. Also, from my obsessive google reading, I know that Dr Braverman in the US treats HLA issues with Neupogen (LIT is illegal in the US).


    Quote Originally Posted by PreciousHeart View Post
    Hi Jojosniss, welcome! I've been around these traps for over 2 years now and also just consulted with Dr Nick a month ago and had the genetic test for the first time with him. God knows why Dr Matthias never tested me with this and I've been seeing him for 2 years I got Nick to call me with match results and then got his letter the other day. I showed my husband and said how devastated you would be if you were new in this game of immune issues by his abrupt letter. Basically it said, you have a match and the only way to have a baby is with donor sperm. Talk to you soon. That was it!!!

    We most fortunately already have a genetic child with no immune treatment at all so I wasn't too hurt but wow is he abrupt! You are both so young, you will get there. I'm going to be doing LIT with Dr Matthias as I am in Sydney and Dr M also said I should do neupogen and IVIG for the matches and NK cells in uterus. Nick suggested IVIG too but he doesn't treat with neupogen his nurse told me today, he is open to it though. So you might want to consult with Dr M too over the phone and send him your results?

    I must say I am disappointed with the "reading" of the matches - Dr M was looking at different matches on the same piece of paper to the ones that Nick had highlighted. Admittedly I highlighted the ones I took to Dr M, not knowing anything, but he never said I was wrong. Then Dr Nick sends me his copy with different numbers highlighted. WTF??? So I am totally confused and also at a loss with all this immune stuff. It seems most people are just guessing and it's very depressing to take such expensive and dangerous drugs on a guess. Anyway, I know that's the case for all of us and so many have had success.

    I really hope you are pregnant soon, at least you are with a good immune believing doc and a friend of mine said she overheard a nurse saying once that Nick could get a rock pregnant. So there you go!!! Good luck with it all


 

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