NK Cell result back - Very high

[butterfly_warrior]

Cuddlepie, there is a book the lovely sushee sent me that I'd be sending along to you at the moment if I had the foggiest idea of where it actually is after the move. I'll keep an eye open for it - you are showing the same level of desperation as I was when sushee decided it was time to pass the book along to help someone else...

I will admit that prednisone is a nasty drug. I have a love-hate relationship with it, admittedly, but in many ways it's also not that bad. I've been on it continuously since May of 2007 and have to say that while it can mess with blood sugar levels and insulin, I had two full glucose tolerance tests while pregnant and they both showed blood sugar levels that were very much on the low side despite being on prednisone and having a high risk of developing gestational diabetes through my PCOS. I suspect I'm one of the lucky ones and others find it much harder to cope with the side effects (or I've adjusted), but I honestly don't think it's as bad as some people make out. My tune will change with my next dose reduction, however!

What's your gut tell you on this? I've seen too many Dr S success stories to be able to completely discount his theories. I know my immune system is seriously whacked out and attacking me, it's not hard to believe it's also attacking my babies.

I know this is something I've said to you before, but I will say it again. You are the only expert on your body. Each FS has their own little area of expertise and you've got to find the one that will fit you. Does your gut tell you it's the NK cells, the fibroid, or a little of both?

Unfortunately it's just not an exact enough science for anyone to know for sure... Do you still go to acupuncture? It would be interesting to know what they say. At a guess, Leah would still be on leave, but it would probably be worth getting an appointment with one of the others there to talk through things and see what they think - as people who will treat the body as a whole rather than focus on their one tiny little bit. Leah had some special herbs for me to take when my NK cells were discovered, so they may also have alternatives to the prednisone that could be helpful.

I hope some of my late night babble is helpful.

BW

[Sara69]

CP:

that it never can be easy....just saw in another members profile "It's not what you do that you regret, it's what you don't do". Think that says it all.

I think what you need to look at are how problematic are the side effects of NK cell treatment? What you say about insulin and diabetes is not good but it is something that can be dealt with with a controlled diet once you are pregnant? If this is the case I would go for the treatment.

I also think Dr Lok has a point when he is talking about the fibroid. I wonder with all these open questions if you could consider to go for a freeze all cycle this time and then with a good number of snowbubs in stock get the fibroid and biopsy dealt with you coudl then change over to Dr Sachs, to get NK cells dealt with. Can the fibroid and biopsy be doen at the same time?

You would then still have time for at least one more stim cycles this year before the changes to the Safety Net. Once it's all dealt with there is nothing else you can do than hope for the best and you've done everything you can - so much hope your wish comes true

Sara

[Baby Dreamtime]

Hi CP, that is a hard one. I am by no means an expert on prednisone and am in fact sort of self treating my self without a diagnosis, though as I mentioned in the past my FS is happy for me to continue to take it on very low doses whilst not cycling, and as per the colorado protocol whilst I am cycling. I can't argue with your current FSs reasoning, there will always be differing opinions, however I am of the very big opinion that if something isn't working, change it. You have given it your best shot so far and plenty of tries with a 'conservative' treatment. Your reasoning is sound in that NK cells is the only thing you have discovered that is not 'right'. There also seems to be real examples, of where prednisone treatment has helped women in the same circumstance.

If you were on your 1st or 2nd or even 3rd cycle, I would be telling you that you may be too early in the ivf game to worry that this might be the issue, but that is not the case. If it was me with the same diagnosis I would refuse to do another cycle without treatment. That is just my humble opinion. As BW said, it is your body, and you have the right to investigate all options. And there is no reason why you can't try a cycle with Dr S, it might only take one. This game is so hard on us and our emotions and I find myself always looking for the next good reason as to why a cycle might work. In this case I think you have a very good reason for it work.

I hope you can come to a decision you are happy with. I saw your post re your follies, that is the best news, so glad the increased dose looks like it will do the trick. Sending you my best wishes. xx

[Cuddlepie]

*Some Vent first* Why can't things be simple? Why universe putting one thing after another just to make this journey so difficult. Sometimes, I really don't see the light at the end of all these. *Vent finishes now let's get on with life*

BW, you are right, I am so very desperate atm. I don't have much knowledge of how immune system work, but my gut feeling is that mine could be overly protective, to the point that it can be harmful to the embyros. I am kind of person who hardly get sick or get flu (touch wood). I was very keen to treat it like you said regardless of what the research says, but I have to admit, one of the concerns of taking the drugs is 'I don't want my immune system shot to pieces. When you say your immune system is seriously whacked out, was it before Pred or as the result of taking that?

I also have a personal hurdle to get through regarding anything surgical. I guess that's one of the hidden reason I am trying everything I can to put Fibriod issue on the backburner. If you ask me now, I'd try everything to avoid invasive surgery into my body. This is where both DH and Dr. Lok can't understand, he said surgery can't kill you but drugs can (I know its a bit exaggerating but thats his point).

Last night I honestly think that I would like to send Dr.S an email to ask him if you can put me on the treatment plan while I am still cycling with SIVF. I don't know if he will agree but I will try. So my gut feeling is telling me to treat the NK cells, but I don't know whether its because of the fear of the surgery or its the right decision for my body.

I am seeing Leah next Saturday, I so missed her, mostly the talk, I've seen the other two but seems can't communicate on the same level with Leah. So I am keen to hear her opinion on this. Its great to know herbal can also treat this to some extent.

Sara, you know what, in order not to regret, I guess I just have to bite the bullet and get the surgery done. I wonder what else will pop up after that. What you suggested is exactly what I have in mind atm, maybe just do one more stim cycle given I am used to the lab and facility here, then get fibriod done, during the recovery time, I could seek treatment from Dr. Sack. I asked the same question to Dr. Lok, because biopsy has to be done in the D24-26 of the cycle, it might be hard to do it at the same time with the surgery.

BBT, I have learnt in the past that you can't just take the words straight from your FS' month, you need to digest, interpreted and then decide yourself. The dosage on FSH is a perfect example, I know if I didn't suggest, it won't be changed. So I am happy to see some progress and proves I made the right decision. I guess in this instance, I have more dealings with my FS and haven't with Dr.S. Although I've heard so many people raved about him, I have to admit I don't have enough confidence in him yet, after all, we only met twice and second time I was in shock with my result so didn't get the most of the consultation. Also he himself seems trying to cover himself and set the tune of the treatment in the first place, saying its still early days and no concrete research to prove it yet. I guess that adds a little more anxiety from my side. If the one who is treating you is not sure, how can you be fully convinced. But again, like Holly mentioned before, he could be just saying that because Im under another doctor's care.

Well, guys, I still don't know what to do yet, but I feel a little bit better, you don't know how much your posts helped me in a way. DH said just sleep on it, the decision hasn't arrived yet but I hope it will come when timing is right.

[Jodsan]

Cuddlepie - I just thought I would pop in here to let you know that I just got a faint BFP on my first cycle of Prednisone. I too had a feeling my immune system was being overactive and attacking potential babies. I dont think I would have got there without the prednisone to hold my immune system at bay. I personally think you should keep pursuing this angle. Trust your instincts.

[butterfly_warrior]

Cuddlepie, I'm on the prednisone in order to try to fix my incredibly whacked out immune system. I don't think we'll ever know why it went nuts, but it certainly wasn't from the prednisone. I hope the chat with Leah helps - hearing that she's back at work makes me want to find an excuse to go in for AP just so I can see her! Please let her know that me and Sam are doing really well and that I think of her often.

BW

[Cuddlepie]

BW, Yes, Leah is back to work only on Saturdays from 30th May...I will definitely let her know, Im sure she will be so happy to hear that you and Sam are doing so well. I saw the photos of her little boy a month ago, he is just gorgerous as well.

Jordon, I am rejoiced for you and thank you so much hun for popping in and letting me know this, that gives me hope. I hope the line gets darker and bring your longed-for-baby!

I have been reading Dr. Alan Beer's book "Is your body baby friendly?' over the weekend and it gaves me such an insight of how immue system works. I am now almost 100% sure that is my problem. I got achy legs and twinge and tingling after transfer like it described in the book. The feeling that 2 cycles ago 2 blastiecysts implanted might not be simple as my 'wishful thinking', it could have happend but then was killed off by my "midnight killers" (so I call NK cells now). Dr, Beer also said in the book "if you have 5 failed IVF cycles, the chances of autoimmune problem is 100% based on his patients stats."

I also felt better about my FS' attitude towards immune suppressive therapy, I am so not alone. In the book, it tells many many women's stories of being laughed at, rejected and pushed away by this theory. I guess now I feel that I not only have to pursue this to fulfil my own dream but feel a kind of responsibility to go through it and becoming another proof for other struggling women who fail to find any anwers. I don't want to (or any other women) wait for 16 IVF cycles or m/c (one lady's story) and then go down this path. All the risks of the penedisone seems acceptable now comparing to the anguish and soul-destroying experience of being failed by IVF again and again. I also remembered a few years back, a trusted psychic I see a lot did a reading for me and passed on what my angels said 'IVF is a waste of time for you'...how funny to think back on that....

To me, now the answer becomes clear but I just need the timing to be right. I will finish this cycle regardless and hoping to put some snowbubs in the bank, then I might pursue to go ahead with Hysteroscopy to fix the fibriod problem (sick of people using it as an execuse to be against me) and clear a potential obsticles even if I get pregnant. Then I am going to see Dr. Sacks and seriously seeking treatment.

I still have two minds whether to transfer or not this cycle, what's the point if I already knew its not going to work. But I will check with Leah if herbal can do some trick for this cycle and then decide.

I guess that's the plan for now. Feeling much better with an idea in mind. Knowledge do give you power...just off to post a thread about the risk for removing submucous firoids to get myself prepare.

Love to all xxx

[Sara69]

Cpie, so gald to hear you sounding so decisive and positive, It realy sounds to me like you've found the right way for you

Sara

[dusty]

I also felt better about my FS' attitude towards immune suppressive therapy, I am so not alone. In the book, it tells many many women's stories of being laughed at, rejected and pushed away by this theory. I guess now I feel that I not only have to pursue this to fulfil my own dream but feel a kind of responsibility to go through it and becoming another proof for other struggling women who fail to find any anwers. I don't want to (or any other women) wait for 16 IVF cycles or m/c (one lady's story) and then go down this path.

Good point CP. I have heard too many stories too of excessive cycles with no investigation and being told to just accept their lot. Thank goodness we can chat to each other and learn about what may be available or going on so we can at least try to do something about it - especially if our medical experts aren't raising the possibilities with us earlier rather than later.

Best of luck this cycle and with your journey with Dr S.
xx