Immune/NK cells - pred thread 29

[StillTrying10000]

Starting a new thread as the last was full.

Hi ladies, sorry about any upset caused, this was not the intention and came from a genuine place as I just thought it would be of interest to those questioning his stats. I didn’t feel I could question them and have seen other posters worried about this too. As someone noted above, his methods are widely known to be very controversial and dismissed by many other leading drs. I didn’t want to post further details because of potential defamation issues. Apologies again. It obviously works for lots of people and maybe stats aren’t the right guidance at all as we are all so different with different histories. I only wanted to flag to anyone interested in wider views. I hope you all get the results you want very soon and best of luck to everyone

Ps it’s fertility experts in the industry discussing it, not journalism

@Stillhoping200 - how do you have this information from "fertility experts in the industry" if this was actually true they wouldn't be discussing it, an investigation would be kept confidential. Please only post information in here that you know is true, i don't believe a word you are saying.

I also don't believe that your comment was innocent, i think you are having a bad day and trying to drag others down with you which is wrong. Anyway i have said my point of view and won't say any more.

His clinic did just have a CQC inspection in May of this year and it was rated 'Good'. He clearly states the medication he uses on his website so there is full transparency around that.

As for whether it works, there is never a guarantee with anything when it comes to fertility. All we can do is try. Even with IVF the success rate is at best 30% for under 35 year olds and reduces every year after that. The fertility experts discussing him are also taking people's money knowing it probably won't work.

Hi everyone,
I started on the complex plan with Dr S in September 2021, having had 5 miscarriages all naturally conceived. Last BFP was July 2021. Since being on the plan we haven't been able to conceive at all and have ended up down the IVF route as we just didn't want to hang around. I've read a few of us are in the same boat of no longer conceiving while on the plan - I wonder if there is anything to this or just plain bad luck (as if we need more).

I'm currently in the TWW after a fresh transfer, we got 4 blastos but only 2 were any good, we decided to put one in the freezer as didn't want to increase mc risk any further with twins (as if twins is even a remote possibility!!) Haven't done PGS testing this round. Feel mixed about that decision. If we had lots of blastos I think we would go for it.

Just really hoping we get a chance to at least test out Dr S' plan soon - I had humira in Sep 2021 and he said it lasts a year so running out of time before having to do that again 🙄 and also on 25mg pred. Did intralipids before egg collection.

I keep reminding myself that his clinic does have a lot of success stories for people, every time I visit there are couples clearly happy from a scan. Then there are those of us that unfortunately it hasn't worked yet, for whatever reason. Remember we are on Mumsnet on this thread for a reason - the people who have successes don't tend to hang about here!

It is tough though having to put trust in a clinic where the drugs clearly state not suitable got pregnancy etc etc and the amount they charge is disgusting - agree we are being taken advantage of! Of course we would all say it is totally worth it if else ever get our baby but sometimes that feels like a big IF.

Anyway sorry I meant to try and bring some positivity but ended up rambling on - think we all feel similar in being quite anxious about the future and clinging onto hope. This thread is lovely to have support on through this shit journey ❤️

Hi @Amy00 that’s a bit worrying! The only thing we have going for is that we conceive almost every time. Does feel like it’s just one thing after another, we were hoping to not need ivf but time will tell. I agree that it’s only people still ongoing with their plans etc that are on this thread really so that does make me feel better. We are only prepared to try for so long really before giving up but it would feel like such a waste of money x

I've calmed down a bit now. I'm sorry a few of us were upset yesterday ❤️ I have experienced infertility before our losses, so my circumstances are probably different to those who have previously conceived quickly. Ultimately, my dh and I have made the decision to continue with the clinic, despite having had losses on the plan and we're trying to trust the process. I do find them responsive and I'm open to trying different approaches, my protocol has changed a lot since I first started at the clinic. Dr S has told us to have hope that we will get there and I've seen women on the same meds as me get their baby, so that keeps me going. The nhs are quite happy for us to continue losing healthy babies and not change a thing - as far as they're concerned, we've lost 6 babies for no reason, so no interventions have been offered.
Last time I was at clinic it was heaving. I had intralipids and 3 other women in there were all pregnant, so it does often feel like I'm on the outside, but connecting on here makes me feel less alone.

@Amy00 keeping everything crossed for you with this transfer xx

Hi everyone,
I hope you’re all doing ok. I was on here a while ago as taffeta but had trouble logging in with. @VenusStarr I think you have to do what feels right for you. We are all here in similar boats but each boat is one of different circumstances! I had a break from the plan as I stared to wonder if it was for for me for, together with the controversy over it and no success pregnancy wise on it compared to luck without it. But that was just my decision based on circumstances. If the numbers are correct we will all get there! @Amy00 best of luck with the transfer.
For those who’ve had a break, did you just do a month then go back to SO? Also does anyone find the progesterone pessaries really mess with your temps? Mine stayed high until AF came.
Hope everyone is keeping cool x

AF finally arrived today! I've never had a late period and this one was 7 days late!
I've decided to give SO a miss this cycle as I go away in about 4.5 weeks and I wouldn't want a positive just days before I fly, if it was a holiday fine but it's a business trip. Am I doing the right thing? 😬
Also ify next period is on time (day 26-27) it means I'll be away during the time I need to have a follicle scan so I'll probably have to miss that cycle too 🙄 I really don't know what to do. Had this stupid period arrived on time I would have been ok for august cycle to do SO.

@HoldingOn2Hope the same thing happened to me! I planned my holiday around my cycle and SO and then typically AF decided to arrive early so I have to miss next SO. x

Hello I'm new to this site. On first cycle of Shehatas treatment for High nk cells. I started pred 25mg on day of positive ovulation test, now I'm worried I started it too early and it may have prevented ovulation :( have seen people say they don't start it till bfp....

I'm glad you're not in limbo any more @HoldingOn2Hope but that's frustrating about missing a couple of months SO.

@Lemondrop01 I find that my temps aren't as consistent with progesterone. The month before I did SO, I had great post-ov temps but during the cycle, they were up and down.

@Dwizz welcome. I usually start pred at 2/3dpo - I temp though and rarely use opks now. When I've done SO, the clinic say to take pred 2 days after trigger.
I wouldn't worry too much though, my ivf clinic wants me on pred at the start of my cycle (I don't though as Dr S doesn't agree). So hopefully it won't have interfered with your ovulation.

@VenusStarr thankyou :) I realise I am so early on in the journey, it is so intimidating. Woke up feeling so anxious about it all! What does SO stand for?

Sorry @Dwizz it's superovulation. With letrozole. 🤞 for this cycle x

Hello everyone,

I think @HoldingOn2Hope and @VenusStarr may remember me? I had my little boy on Mr S's plan in May 2021 (Drugs for me: hydroxy, vits, ovulation intralipids, maintaining intralipids, cyclogest 200mg). Prior to this, I'd had a miscarriage at 20 weeks (unexplained), 12 and 10 (both chromosomal issues). I've recently gone back to the clinic to repeat my bloods so we can start TTC in August (but I think we've decided to push back until October).

I've dipped back in to the thread over the last 3 months and so wanted to post to offer some hope that things can go OK and also some confidence in Mr S. I'm not advocating for him per se but just wanted to post because I think it is important to have faith in what you're doing in TTC cos my goodness, sometimes that's all you can hold on to. I've also sent a friend to Mr S because she's had two mc back to back and is now concerned something else is going on and has exhausted all her NHS options.

I know historically this thread in its older incantations was very chatty with ppl that had successes on it which is why (in part) I went to Dr S. That and this article www.google.com/amp/s/amp.theguardian.com/society/2016/nov/12/can-mayonnaise-cure-infertility. If anyone is lurking and has some successes or insights (regardless of whose clinic you're at if any), maybe posting could be supportive right now? Just an idea 😊

Anyway, I hope you're all OK and sorry its taking such a long time for so many people. It took us over 3 and half years to have a baby and whilst I don't know if it was definitely Dr S's plan, the NHS alternative of keep trying although we don't know why you miscarried at 20 weeks was a completely unacceptable alternative and makes me so cross for us women. So sending love and strength to you all. Women are amazing ❤️

Katy

P.S. sorry for the essay 😅

Thank you for sharing your story @KtAgs , I'm not under Dr S's care but following another similar treatment plan under a different dr and I'm always grateful to hear of positive outcomes. I'm a little bit wary on this board about whether other people would prefer those who become pregnant to continue posting or not. I know since I joined this thread a few have become pregnant and stopped posting. On one hand it would be great to know how they're doing, but on the other hand I know other people being pregnant can evoke really difficult feelings for those who aren't but want to be. It really is a fine line, but hope is really all we have to hold on to at times!

I received a letter from the RM consultant at my local hospital this week saying they weren't able to perform genetic testing on the tissue from my latest MC in May, despite trying. It's disappointing but not a big surprise as it was such early gestation (4-5 weeks) and a natural MC. It sounds like there just wasn't anything there or it wasn't enough to be able to detect genetically. It's a bit of a bummer as it was my first MC on prednisolone and it would have been helpful to know if the embryo was chromosomally normal or not. It was much earlier than my other MCs though which I think points to it being more likely a chromosomal issue, so we're not seeing it as a treatment failure at this point. I'm currently in my TWW and feeling hopeful, anyway!

@Sezmarelda1 I'm sorry you didn't get a result from your recent miscarriage. Are you sticking to the same protocol?
I'm glad you're feeling hope 💕

Good to hear from you @KtAgs I do remember you. Have your results changed at all from when your first saw Dr S?
I've been looking at my results again this morning, it reads as though pred and intralipids are the most effective for me, so feeling a bit deflated that I was on them and hydroxy and still lost our girl. But you're right, I do feel comfortable with trying again with a new plan.

@HoldingOn2Hope how are you?

I've got a mid cycle scan with my ivf clinic tomorrow (day 10) and hopefully will have a FET plan. Not feeling that confident that my natural lining will be any good either. Feeling quite worn down with it all at the moment.

Lots of love all ❤️

Hi all

Can anyone give me a sample protocol for high NK cells and CD19? I have low LADS too but my doc is dismissive.

I also have homozygous mthfr c665t

Thanks

Good luck for your scan tomorrow @VenusStarr, positive thinking ❤

My treatment plan has had heparin and high dose folate added to it (it was "just" pred, progesterone and aspirin before).

Sorry you didn’t get a result from the testing @Sezmarelda1. The same thing happened after I lost my son at 16 weeks. In our case it was down to the quality of the sample taken and by the time they attempted testing he’d been cremated so there was nothing we could do. Very frustrating. But I think you’re right in that at such an early stage it’s likely chromosomal. Good luck in your TWW.

And good luck tomorrow @VenusStarr

@HoldingOn2Hope how frustrating with the timings of AF!! Typical isn't it. I've no idea about flying in early pregnancy - I think science days it's fine but given the issues we have all gone through it's probably better to give it a miss to be on the safe side?!

@Dwizz the clinic said to me start pred from positive ovulation test. But I tended to start it 1 DPO confirmed by temps so maybe 1-2 days after I got a positive LH test. I don't think it makes a huge difference so don't worry too much about exact timing!

@KtAgs aw thanks so much for dropping in your positive story! That's so lovely to hear you've been successful, and fingers crossed for your next one!!

@Sezmarelda1 ah that's tough not getting an answer but I would probably agree and put it down to chromosomal issue at that early stage. Fingers crossed for you this cycle!

@VenusStarr good luck for your scan tomorrow and you'll feel better with a plan in place - hopefully the lining will be good and juicy!

I've had some good news from the IVF transfer last week and got an early bfp. Feeling anxious about it of course and had some spotting and cramping yesterday which convinced me it was all over, but line is a bit stronger today and spotting seems to have stopped (touch wood). Next milestone is making it to OTD on Thursday. This is my first pregnancy on DrS' plan so feeing optimistic that it will make a difference. Time will tell!

I have everything crossed for you @Amy00 🙏Keep us updated!

@Conundrum12345 are you already taking folate rather than folic acid? I'm heterozygous for C665T and A1298C which is not as bad as having the homozygous mutation. I've seen mixed info about whether heparin is also helpful with MTHFR mutations.

Yep.

I'm not really sure what it means. Is it treatable?