Immune /natural killer cell treatment when ttc or pregnant (aka the 16th pred thread!)

[sunnyday01]

This is a thread for those diagnosed with high or very high natural killer cells and trying to concieve or are pregnant and taking steroids/intralipids etc

Newcomers very welcome

Hehe I just noticed your typo determined... The 'president' will be massively masking symptoms. Made me giggle :)

Hello
We are having a month off TTC.
Am on 25 days of doxycicline (antibiotics) as have tested positive for Greek infections last year and was told it never go away and antibiotics only suppress it. Also when I had my cytokines tested last year it was straight after doxy and it was quite ok but when I retested in May it was suddenly very high.
So am doing doxy + pred + intralipids every 4 weeks and will have the cytokines + thyroid antibodies retested in a couple of weeks. If they went down great and happy to TTC again.
If not fine as well as at least I will know 100% that I will need IVIGs. As pred +intralipids just don't work for me....
Have to say that am getting fed up with pred as am trying to lose weight and it is getting impossible last week or so...

Yes determined ur message made my chuckle. If obhama is behind this preg too maybe it will work!
Drtcc I know - it must ha ve been such a scare. You kinda forget what we are putting our bodies through in this pursuit of having a baby. And a scare like that prob puts it into reality. I'm so glad for u it wasn't though.
Yep I know I should stay postive, I'm so grateful I got a BFP first go and I should ten I could be having r a very diff week this week worrying why I didn't get a bFp. But I can't help and obsses over how well I'm feeling. I literally feel fine except feel tired but that's coz I wake up with the silly dex!
Determined-no I don't get a funny taste ! But I get hungry. Right now I'm so fat! My belly is half bloated half ive put on weight and I'm not very happy about that either!
Swnanny I hope ur results come back down on ur combo. Ivig is really strong stuff I've seen it work wonders for non fertility stuff with my very own eyes so if you need
It, hopefully it will work for ur NK cells etc. Will add u to list later!

Guys those of u who have sadly miscarried on cyclogest did u bleed while u were on it?

Ha ha...flipping predictive!! think that the force of the USA president is behind you every time you waver...

Yep, still bled whilst taking cyclogest...didn't really hold onto anything for me...

Thanks determined
Hope the stupid pred symtpms are better for u tmrw, at least it's just for a few days....the things we do!

I had no bleeding, went off it for a week and still had no bleeding, went back on for 5 days and still no bleeding, then went off it and started bleeding that day. So... The miscarriage happened when it was going to regardless of the cyclo I reckon.

Hi, sorry for not checking in much or contributing, work is crazy busy at the moment so I'm cream crackered when I get home!

Got my nhs Scan appt through today - 15th July - 13 days to go! By my dates I'll be 12 + 4, by previous scan dates will be 11 + 5 so will be interesting to see what they say. Just got to hope all is ok!

Drttc was it you who mentioned It all starts with an egg book? Sorry if I got you mixed up with someone else...
If it was you how do you find the it? I got it and read it all in one go... Happy to follow most of what she recommends as doing it anyway but how do you go about all the chemicals? Spent hours in Boots etc trying to find shampoo etc but find it difficult.
Really sorry for what you've been through recently, must have been quite scary...
Trying huge congratulations with your BFP, I know it is just the beginning of a very long journey but you are on so much medication I believe it will work for you...
If you feel like sharing what kind of patients were they? I presume their problems were caused by autoimmune issues? Mean the ones IVIGs worked well for? My sister is a neurologist and she swears by IVIGs and if she could prescribe it for me she would have done ages ago... I am actually not worried by my NKcells as they seem to be kind of in a normal range, it is my INF-g and thyroid antibodies which play havoc with my immunes...
Determined fingers crossed you results will show good improvement - are you having the whole NKcells panels+ cytokines retested?
Off to catch up with the thread properly...

Yes swmanny! It was neurology patients! They would come in with the inability to move their arms or feel their legs and after 3 sessions it was amazing what it did. So it really is powerful stuff. But obv u know all about the Neuro side. I've never seen it be used for anything else actually. The argc use it in ivf and obviously they have very high sucess rates so it must help fertility side too. Sorry ur struggling with ur weight, it really does make it harder with TTC worry and stress doesn't it. Maybe upping ur excercise but eating same?
Thanks for ur wishes. minor Break down tonight. Gonna listen to headspace and regroup and try be more postive tmrw :).
DH giving his frozen sperm
Sample again tmrw. They better not ring and say there's none there! Also got my intralipids hurrah!

Thanks drttc, sounds brave stopping and starting ur cyclogest! Enjoy not counting days :) have a nice white vino in the sun :)

Great new sunny, then ur out of trimester one. I can't imagine!

Sunny everything crossed for your next scan
Trying hope it is going to be good news about your DH sample tomorrow. Also hope the intralipids go in without any problems (have had quite a few already but still freak out when have them done, should have mine in next couple of days as well).
Actually I managed to lose quite a bit of weight in last 5months (went from BMI of 43 to 33 which is great but would like it to be just under 30 ideally - know that's not perfect but looks like I went straight from new born clothes to size 14/16 so was never slim so would be great to be back in size 14/16 again. Need to lose another 2 stone to be under BMI 30...) have been on those pesky steroids for 2 months now and only last week or so I have had enough...
Looks like we are looking at IVF in September if I am not properly pregnant by then and with my DH very low sperm count /motility it always feels like a miracle when there is that second (even though feint) line on HPT.
Hence me trying to get for under 30 to get the IVF a proper chance and if it doesn't work noone can blame it on my weight... maybe my old eggs get to be blamed but can't change that...
Yep, am not surprised it was neurology patients... exactly as my sister describes it - they can't move and after a course of 5 infusions they can walk!!!
The main problem I have is that some Dr want you to have 1 every 3 weeks from BFP through till week 20. Which at £2K per one is over £10k!!!! And we quite frankly can't afford it.. unless I could source it abroad where it's cheaper..

Here are my details to add to the list...

29 years old, ttc number 1 since sep 14.
Mmc at about 11 weeks dec 14
Mc at about 5.5 weeks feb 15
Mc at about 6.5 - 7 weeks may 15

High nk cells so the usual pred, cyclogest combo. Last mc I found out I was pregnant before results came back so didn't start pred until five weeks which was obviously too late. Might beg for heparin next time because recent research shows it can help a growing placenta and I have nothing to lose!

I guess we are ttc from now. Stupid 33 day cycle

Has anyone here ever had a referral on nhs? I still haven't heard anything but the GP says I should just wait.

trying it's so hard isn't it. I've never had many symptoms which was bad for me but then my mum had three healthy symptomless pregnancies so it is so individual.

Keeping fingers crossed for all those ttc and sunny waiting for your scan. And lovely to hear from rosa, still so happy for you!

Oh and I forgot intralipids, doh!

Swlondonnanny that's an amazing amount of weight well done! I'm sure u will get there with a bit more time! Bloddy hell that's exp!? I can imagine ur reluctance....which clinic does that? As u prob read ive done ivf and it wasn't as bad as I thought it would be. Main thing is doingg it with a clinic who support all this immunology stuff so you feel supported by the plan. I had an intralip pre transfer and it went fine so Hoping same again! It's such a lovely day could do with being outdoors though!
Will sort out list later when on main comp.
Snoopy, hope AF comes soon xxx
Happy Friday everyone. I hope the second half of this year brings us lots of sticky bfp, we all deserve it. Strong resilient women we all are!

Pa snoopy ive had a nhs appt. took a while to come through. U could always ring the Obs and gynae secretaries and check they have ur referall and ask how long the wait will be if it makes u feel better? They might give u the clexane actually as a lot of rm Consultants do even if no Clotting problems. Shehata gives to patients having ivf but not natural conceptiom I don't know why? sure there's a reason...

I'm actually on cd10. Had first af exactly 33 days since everything passed so my cycle was back on track straight away. Wasn't ttc last month though.

I might have to do that. It's been more than four weeks now.

Are you in your tww now hula?

BABY

Hopender- (38 yrs old) 7 miscarriages, one DS, pred, cycolgest, baby aspirin and intralipids. Baby boy born!

2nd trimester

Rosa (39yrs) - 3 MMC
(11.5, 6.5, 7.5). 6 months ttc on treatment. On complex programme for high NK, cytokines and thyroid antibodies (hydroxy, pred, intralipids)- had allergy to Humira. SO programme (16 Weeks)

1st trimester

Sunny (32 yrs)- high nk cells - hydroxy, pred intralipids - 3 mc (1 on treatment). (9weeks)

Tryingno1 (31 yrs old)- 3 mc. Ttc since April 2012. 5.5 weeks, 9 weeks, 6 weeks. Ivf bfp this time as low sperm. Also High nk cells, pa1 mutation. C4/m2 mutation. Hla dq match and low LAD. (Last ones done by ivf clinic) on dex, asprin, metformin,clexane,hydroxy and Intralipids every 4 weeks till 16weeks (5 plus 1)

TTC

Hula2 (39 years) - one DS (took 18mns with low amh but no other probs), one MC at 9wks, ttc no 2 19 mns (12mns since last mc), low amh, borderline cytokines, high nks, on complex nk plan (pred, intralipids). Humira completed. SO cycle 1.

Drttc- (28 yrs old) 4 MCS, 1 on treatment (6 wks, 4wks 2 days, 5.5 weeks, 6 wks), very high NKC on complex treatment plan: hydroxy 2x day, 25 mg pred from ovulation, add cyclogest on bfp & Intralipids every 4 wks until 16 wks.

SeekingMiracles: (31)
4 mcs (sad) DEC'13 (5.5w), JUNE '14 (blighted ovum 7weeks), OCT '14 (Chem) JUNE '15 (9w).
High NK cells and ProThrombin gene variant.

Swlondonnanny 39, TTC no 1 (since dec 2010) multiple chemicals /miscarriages in week 5. TTC naturally. Have high uNK cell, normal blood NKcells but high activity, really high thyroid antibodies, borderline proteins C and S deficiency , borderline high TNFa.
On prednisolone, fragmin and intralipids from BFP

Snoopy (29) ttc number 1 since sep 14.
Mmc at about 11 weeks dec 14
Mc at about 5.5 weeks feb 15
Mc at about 6.5 - 7 weeks may 15
High nk cells so the usual pred, cyclogest combo.

WTTC

Determined123 (32)- awaiting (retest) results. 4mcs (2 on treatment).

Hi Snoopy, yep in the tww now (2dpo), just testing the trigger out, i ll be due to test on holiday so hoping i ll have plenty of distractions getting ready and being away that it goes by quickly. Good luck now you re back to ttc, hope you get a quick sticky bfp soon.

Swlondon nanny - hope it doesn t come to ivf for you. I ve read that book and it can be tricky to get 'good for you' toilettries from regular shops so i tend to get stuff online. I got a good trial pack of about six mini john masters organics shampoos and conditioners and they are the best i ve liked so far.

Trying - hope you re doing ok and your dhs sample is holding steady. Thanks for updating the list.

Hi Rosa, Determined, Sunny, Drttc and anyone else i ve forgotten. Hope you all have a good weekend.

Hi hula thanks for asking. Sample was exactly same, so 2 straws frozen. So 4 we have is enough for one ivf cycle maybe just. They suggest you give enough for 3-5 cycles as a lot Of sperm die. Anyways I'm really praying we never even need to use it, But glad there are still a few swimming around!

Have a great holiday

Oh hula I'm jealous of you going on holiday. I'm sat in an office on my own this weekend, next to a fan haha. Hope you enjoy it.

sw I need to stay away from books like that I think. I've already gone a bit overboard with the supplements this month and I still want to pick up some n-acetylcysteine because I read a study that said it increased chances of live full term birth by something ridiculous like 290%.

How are you doing trying. Those days keep ticking by.

I'm using my time alone to apply for another job. After coming back and reading all my emails I've realised we are sinking and sinking fast.

Hi ladies,
Sorry I've been AWOL.
Hope you have a lovely holiday Hula and come back with some good news!
Trying glad you've managed to get more sperm frozen. But hopefully you're not going to need it anyway.

Hi everyone else. Hope you're all ok. I'm so bloody busy, work and the house are taking up all my time!!

Hey snoopy how was looking for a new job? I hope it gives u some
Focus and makes u feel
Postive the for the future.

Seeking that's great, thats exactly what u need right now enjoy ur house and some rose in the sun. Before u know it a few months will have passed. I often feel "free" those months, I eat drink and go wherever as im not worried about maybe being near ovualtio. and what a glass of wine will do.(when clearly it doesn't nothing but I am
Mental!)

I'm ok, plodding along. No symptoms feel really well. Just praying no blood when go
To loo, so far nothing. But obv that doesn't relfect what's going on inside just temp reassures me.

Hope everyone having lovely sunny weekends. Xx

trying I've found an internal job to apply for, just finishing off the application now. I don't think I will get it. I don't know how to promote myself, after six years of ricocheting from call to call you start think everything is normal and don't recognise the hard work you've done.

During last pregnancy I only wore black knickers to try and keep a handle on the knicker checking anxiety. It did seem to help a bit.

seeking glad to hear you are doing well. It's nice sometimes to get off the 'ttc-miscarriage wheel'. Dh said he noticed I seemed to have given up all the things that used to make me happy so I made a conscious effort and finished book I was halfway through and stopped after first mc.

Good luck for it snoopy. U never know! I hope it comes good for u.

Good idea re the black pants! Except the progesterone leaves such an awful mess I need to wear a liner. I'm actually doing ok. What will be will be. I literally can't do anything else. I'm on every drug, I'm taking it easy but also trying to keep busy, I'm having my 5 a day plenty of wated and not getting stressed/rasing my bp (where possible). So it's out of my hands now. If it doesn't work, well then it doesn't but I can't have done anything else. And I justhave to wait another 7 longggggggg days for scan no 1!

Came across this really inspiring blog by someone with recurrent miscarriage (along with ivf)! Thought I'd share :)

miscarriagestomiracles.blogspot.co.uk/2015/06/sometimes-our-plans-change.html?m=1