Immune / natural killer cell treatment when ttc or pregnant (aka the 15th pred thread)

Lillies that's amaxing, Now u can chillax (a little!) xxx

Wow! That's amazing lillies! So so please for you xxx

I'm here! Sorry, been out literally all day. Just got in.
Well, I don't know if I ever been so surprised and speechless - they found a heartbeat!!!! It had grown and developed a heartbeat! I can't believe it. I really can't. In no way out of any woods yet but a good step today.
!!!!!!!!!!'!!!!!!!!!!!!!!!!!!!!
My dates to measurement dates are in no way matching but the doctor stressed in no way was I to be concerned about that as everything is so small plus I've a tilted uterus which was hard to get around plus the bean was lying awkwardly to measure. So trying to remember those words and not find something to worry about out of it.

Ok, off to catch up with today's posts......

Thanks so much for all your words xxx

That's wot we r here for. We are all on this shitty journey together...

I had a look at my results and the pred and intralipds seem to drop my nk cells by 40-50 percent. If only I could get preg to see if it works!

Ahh you guys are so lovely! Don't know what I would do without the board! I think it's just been the combo of everything Nd feeling ill all week I'm just not coping! I'll be back to it in when I get my energy levels back I'm sure.

Thanks for the extra info trying/drttc

Ah thanks hula, just started with a new acu as mine is on mat leave! Hope that helps. Also I have cut out gluten (had the odd slip up when on holiday/mc 4) and was advised to cut out diary by a nutritionist. I will deffo check out that book though so thank you!

Hope you guys are doing ok ?xxx

Determined - so sorry your results were worse. I can really imagine how you re feeling rock bottom but please don t lose hope. There s still stuff thats not fully understood and levels are said to change. Could there be anything else that could help outside of drugs ? Acu is good for LP defects. Also i read an interesting book on a doc that developed very debiltating MS who pretty much got back to normal func thru dietry change. Since our issues are thought to be a type of autoimmunity (as MS is an autoimmune dis) my acu lady suggested i read. Its basically loads of veg, organic meat/fish, no gluten or diary (paleo diet). The book is: Wahls Protocol, The : A Radical New Way to Treat All Chronic Autoimmune Conditions Using Paleo Principles. Its just a thought. Anyway sending a virtual hug, this journey really is so hard sometimes.

Sunny - sorry on the bfn. It never gets easier seeing that one line.

Lillies - hope you re ok. Thinking of you.

Hello!

Determined remind urself all this stuff Mr s does is very experimental and he's one of the few in uk to do it. No one realllyyyyyyyy knows, and the stats are on ur side that next time u will be ok even with no treatment...so although we want his expertise and his advice don't feel like it's all over (easy to say) as he doesn't know for sure as there's such minimal research in the area.

I don't know if that makes any sense!

Dr quenby only uses steriods. No intralipds etc. And she does a uterine scrape to diagnose high NK cells. A lot of women on the Rec Mis thread have had luck with her..(but in the past Mr s patients have as well!).the only other things she's does is clexane post 6 weeks and progesterone day 21-it's meant to help the uterus reject bad embryos or something. But again...it's all experimental!

Such a minefield all this!! I could have got some it wrong but yeah something like that!!

Just out of interest why Dr Q? Have you experience?

Ignore my typos ladies :( I swear I speak English!!

Ah just seem your latest post, sunny. Very interesting. Did you react well to the meds in the blood test?

Thanks, sunny! Ah so is your cytotoxic the number he circled? 30% is was I have circled on that page.... But I also think what counts is how much the meds can reduce it!

Determined, if the circles number is the cytotoxicity then a jump from 21 to 35% does seem quite a leap!! I'm not sure I'd pay to get retested with Dr S.... I'd try Dr Quenby if Dr S wasn't able to figure things out.

Sunny did you get retested? Just wondering why I am being retested and then Tri tested!?! I could pay for flippin ivig which the retest costs!!
Also I didn't get told about NK numbers on the phone so must be more of an issue with the cytotoxicity?!?

Hiya Drttc. I don't have mine, I will get them when I see him next but I checked my old ones (which were lower last May after 2 mcs (jan and April) . I have 21% circled in my note. All I know is now its gone to 35%. Like you I've investigated a lot!! I only wish I could fine something I could do to bring it down without steroids!?!?!

Sorry I do research for a living and so investigating is one of my annoying traits!

He said something along the same lines to me and I'm wondering how similar our results are! I'm looking at my results now....

NK Cell 50:1 was 30%
NK Cell 25:1 was 23%
NK Cell 12.5 was 17%

Then it has the responses to all the treatments... Do you want to compare? I've got 6 different rows:

IVIG 12.5: 18%
IVIG 6.25: 25%
prednisolone 10mg: 24%
prednisolone 5mg: 27%
intralipid 3mg: 23%
intralipid 1mg: 28%

He said ideally you want to get them to about 20% so that's why he said he'd combine pred and Intralipids for me... Apparently the IVIG treatment is very expensive!

Tbh I don't really understand it but it's to do with the test and the impact of the different meds on it. I.e how much pred reduces your cells to a normal level?! Only been 8 months and 2 very early mcs! Crazy isn't it and yes was on a combo (25mg pred) so they may tweak this and add others in ;(

Also, what was you pred dosage?

Determined, what is cytotoxicity? Is that the impact of NK cells? How long has it been since your first blood tests? I'm surprised they changed to the point you would need different treatment... Weren't you on a combo of drugs before as well (pred, cyclogest, and Intralipids)?

I know determined ur right too much info can be a bad thing! I hope they drop with the steriods and hope u have something fun planned soon to pick u up

No not allowed until I have more tests unless I don't go ahead and try my luck without! Not sure on 2nd op, not sure it's worth getting more info in my head!

Yes I do! So attractive!!

Sorry for bfn sunny x

:(
Sunny I was thinking quit facebook! I have and its made me so much better!!