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  1. #191
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    Quote Originally Posted by bbhope View Post
    I haven't been on this thread for a while. I just saw the post by @Sue77. I can't just read and run. LB has a very good reputation. It is good of her to proactive in your case. There is another Dr (Dr Nick L) in Melbourne who can administer thing like intralipid. However, I don't know how far he goes about immune protocol. Do you remember what Dr LB has tested you? From the sound of it, your CD 57 is based on BT. ~17% is on the borderline, according to DrBeer's book. If i remember correctly, that's my BT level as well. Unfortunately, I don't know what did the trick for me because I pretty much threw everything in for my last two cycles. However, I didn't follow DrM protocol but my FS. That's because I know my main problem is slightly elevated ANA (1:80) and CD 57. I did a endo scratch (biopsy) with DrM. Since no one can interpret the result but him. I kinda just dismiss it. I reckon it isn't too high as compared to some ladies here. Your FS can do endo scratch for you and send for testing if you wish but if you already have decided to do the immune protocol, there is no reason to go through the pain with endo scratch.

    It is a difficult question to answer if an aggressive protocol is needed. All these immune protocols are trial and error. There is no guarantee that it will work the first time. I have known two ladies here, one with imbalance Nk cells and one with super high NK cell (higher than 17%) in blood. The former lady tried the standard immune protocol + intralipid. The later lady tried standard protocol only through her FS. Both resulted in a pregnancy and a live birth. It is a personal choice in the end. I didn't want to go down the aggressive path and thus followed my FS protocol (aka bondi protocol) with the addition of intralipid. It isn't much different than what DrM suggestion. To me, 20mg prednisolone has done enough damage to my long term health. I got full on side effect with it. Standard protocol includes predinsoline, clexane and high dose progesterone. Intralipid depends on the Dr.

    As for DrM script, you don't need to give it to LB. You can just get them from the pharmacy.
    Thank you so much for your reply bbhope.. It means a lot to me in making my decision.. I know it's a personal choice in the end but seeking opinion from experienced ladies like you makes so much difference.... If u don't mind , can you please tell me what were the side effects you got from the aggressive protocol? Thanks

  2. #192
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    Quote Originally Posted by BlondeinBrisvegas View Post
    Sorry to thread crash Girls, I sent @Sue77 over here to you Lovelies for your expert advice/opinions. Any help you can give her will be gratefully received as she's really confused and anxious as this is all new to her.

    Thanks so much Lovelies for your help, I so appreciate it to you all!!!
    Blondeinbrisvegas thank you so much for going the extra mile to help these ladies to offer me guidance. It's ha d to explain in words what you mean for ladies like us who are at such a confusing stage and a long journey of the IVF rollercoaster xx

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  4. #193
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    Quote Originally Posted by USHMM View Post
    HI, I can't answer your question about your blood work, but I too was with LB. In some respects, I had a wonderful experience with her. Over two cycles, I got 21 embryos to blast so lots in the freezer to work with. But, having said that, I then couldn't stay pregnant with PGD tested embryos. First I had a chemical and then a miscarriage. LB was stumped and, like you, also sent me to an immunologist. I did consult with him but I also consulted with a specialist in the US. It's a long story but at that point I had a *horrible* experience with LB and switched docs to NL. I don't think I was ever going to get pregnant if I stayed with her.

    LB won't do intralipids. If you want to go down that route, you can switch over to NL or maybe fly out to Sydney and simply do the intralipids with Dr M? As far as testing and aggressive immune protocols, NL is somewhere between Dr M and LB. He does less testing than Dr M (from what I can tell, not having been a Dr M patient), but is willing to try more/different drugs than LB.

    Of course all of this depends on your comfort level. I was at first hesitant to go beyond a low dose of pred and clexane but, as it turned out, that combo simply wasn't working for me. I'm now willing to do a higher dose of pred and intralipids and some other stuff, if necessary.
    USHHM.. Thanks for your answer... It gives me hope.. And yes I have also booked an appointment with Dr Nick Lolatgis for 23rd of sept.. But u know how heartbreaking it is when your pgd tested normal embies don't work ( specially when the embies with random chromosomal abnormalies have implanted previously). And I only. End up roughly two blasts per cycle which is not that much.. So basically we wasted 4. Embryos and don't want to waste my next 2.

    Does Dr Nick also seem rushed at times like LB? I am at that stage of my journey where nothing seems to work despite of everything being technically normal.

    Are u still with Dr Nick?
    Last edited by Sue77; 20-08-2015 at 23:07.

  5. #194
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    Quote Originally Posted by Scruffy View Post
    @Sue77 I wanted to jump in as well as I can hear the stress in your post... I was successful with Dr M after 6 failed PGD embryos. I experienced no side effects / complications from the drugs for me or DS. Also 22 weeks pregnant with number two (slightly more aggressive protocol). Basically Intralipids is egg and soy so very few side effects. I was also worried about the prednisolone but it doesn't cross the placenta so does not harm the baby, I just had mild insomnia and increased appetite!!

    Also not sure about NK cell levels as mine were tested in WA but my specialist here said my recent blood ones were not that high...

    Anyway tough decision but I went with Dr M as I kept thinking that these 'perfect' PGD embryos should be implanting. I definitely think he was the reason behind my success

    Good Luck
    thanks Scruffy and Congrats for your pregnancy and for your ds.. You give so much hope. I never thought that my pgd normal embies won't implant .. But herewe are. Finding new problems all the way...but hopefully will try and find a solution to them...

  6. #195
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    Quote Originally Posted by bbhope View Post
    To me, 20mg prednisolone has done enough damage to my long term health. I got full on side effect with it.
    @bbhope Hoping you could share the side effects & long term damage you've experienced with Pred? I'm on my first round at the moment & concerned with exactly this & can't find any info.

    Any others dealt with side effects & can share your experience?

  7. #196
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    @kiki1 & @Sue77: I must say that everyone is different. My body just doesn't seem to cope with long term use of steroid very well. Oral intake of steroid (such as prednisolone) increases the chance of birth defect such as clefts. However, just like all ladies here, we see the benefit outweigh risk. Keep in mind that there is no follow up study about the effect on the child life later down the track. The bondi protocol that i was on (similar to DrM) only suggests the max dose of 20mg. I consulted DrM for second opinion. He did want me to increase it to 25mg and maybe even more after BFP. I wasn't feeling comfortable about it because my ANA is only slightly elevated (1:80) as compared to most ladies here. Besides, I know it is all trial and error, no precise science. I used 20mg in the end and it was fine. 20mg is quite a high dose if you talk to any OB. I also weaned off it a lot earlier than those who follow DrM protocol. I was very glad about that because of the full on side effects.

    As for side effects, hunger, weight gain rapidly, migraine, anxiety (might not be related), stretch mark @8w (not having it in 3rd trimester), dry skin and the most significant one is impaired glucose level. You can say that some of them might be due to pregnancy but i didn't have them as often after i stopped prednisolone. Steroid is known to induce diabetes. My glucose level was all good just before my last round of IVF. When I had the BT at 10w, my glucose level was impaired. After I stopped and re-tested at 16w, it came down but it was still way above normal. No doubt. I am officially having GD and put on more drugs. I feel sorry for my baby. I know a lot of ladies here didn't get GD in the end. My body clearly didn't take it very well. Coincidence? If so, i am darn unlucky since none of my direct family got GD. It supposes to go away after the baby is out but who knows. OB isn't even sure about this by just reading my value. NOTE: i am not obese and don't have type I diabetes. It might be in the gene....

    In any case, I don't think the protocol i was on is as invasive as other. It is just the standard, predinisolone, clexane, high dose progesterone pessaries + intralipid. Intralipid is soy, bean etc so I don't think is invasive. I would say there are other more invasive protocols such as the use of Dex, IVIG, neupogen and LIT. You can have a read on the internet what they do. DrM suggested me to try neupogen next. I knew deep down that the first trial with intralipid wasn't a fair trial because the embie was likely abnormal. If the second trial fails, it might due to me having a polyp in the uterus. Good embie this time. I was ready to give intralipid the third go. I got lucky with the good embie. I personally wont' want to go down the neupogen path without another opinion. So ya, a lot of Drs out there are doing the trial and error rather than curing the source of the problem. It comes down to personal choice in the end. If i wasn't desperate, I would opt not to have intralipid at all but to stick with standard protocol. As i mentioned, i know a lady who didn't do it and did just fine with bondi protocol.

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  9. #197
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    Thanks @bbhope I am on standard Bondi Protocol atm. I've found increase appetite/hunger, weight gain & light sleep already but am happy to take those if it means a bub. I am slightly worried about the glucose/GD esp as I have a MASSIVE sweet tooth. Most worrying is the increase risk of cleft - although it's only very slightly increased I think/hope?
    I hope your body recovers, that GD is only temporarily mild & once bub is here you never look back at all this.
    Last edited by kiki1; 21-08-2015 at 12:35.

  10. #198
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    @kiki1: good luck with all of these. I don't have sweet tooth. It is just the way it is. Hopefully, it goes away.

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  12. #199
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    I do know the pain of having PGD embryos not work. I was so surprising and upsetting.

    No, Nick L isn't as rushed as Dr LB. Plus, unlike LB, he always calls me back within hours of me calling him whereas in all the time I was with LB she never called me back. Ever. He has never not returned a call... unlike Dr LB. That said, I actually never really wanted to switch from Dr LB. I always felt like I was in capable hands. But hte immune issues make it tricky with her, especially if you want to try intralipids.

    I'm still with Dr NL. I'm meeting with him next week to discuss my recent lap results--mild endo found and high uterine NK cells--and to map out a plan for my upcoming cycle.

    QUOTE=Sue77;8269915]USHHM.. Thanks for your answer... It gives me hope.. And yes I have also booked an appointment with Dr Nick Lolatgis for 23rd of sept.. But u know how heartbreaking it is when your pgd tested normal embies don't work ( specially when the embies with random chromosomal abnormalies have implanted previously). And I only. End up roughly two blasts per cycle which is not that much.. So basically we wasted 4. Embryos and don't want to waste my next 2.

    Does Dr Nick also seem rushed at times like LB? I am at that stage of my journey where nothing seems to work despite of everything being technically normal.

    Are u still with Dr Nick?[/QUOTE]

  13. #200
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    Hi Sue and all new girls

    just let you know I don't have any side effects when I was taking prednisone 25mg, then my cycle failed. Therefore I asked Dr M to change to Dex ( stronger one). Sue, don't keep thinking why the abnormal one implanted the tested one can't because lots of time the pregnancy will activate your NK and antibodies, that is why your blood test results are different with the one you did before, that's why the implantation is not happening to the perfect tested embryo now. Without any treatment, there will be very small chance for the implation. If you think, the treatment is too much, then you can start with small dosage, but you may have to suffer the pain from the failing cycle. At the end, IVF is not cheap as well, how many more cycles can you offered. I know lots of ladies chose to have more aggressive treatments than DR M suggested, because of the pain of failing cycles out weight the side effects from the drugs. I am one of them. Hope this will help you.

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