ERA EMMA ALICE testing thread 9

[Gardenlady543]

@2021ivfagain @Enfys23 @clhiu @CailinInUK @Spin101 @Loz2467 @Mybabydream @Janefx40 @ChickenT2b @kerrym87 @Sar1010 @AM08 @thislittlebird @IVF22 @APSR
@Faithhopelove83 @KLM25 @VenusStarr
@BewilderedBee @Dochas12111 @seven201 @StillWishingHoping

We've maxed out the other one so here's thread 9 😊

@Dochas12111 please can you send me diet stuff too? I've had vey little advice despite doet really helping with pcos but not sure if I'm missing anything x

@thislittlebird you have such a good chance with your 4AA euploid, I hope this is the one for you.

I can’t quite believe it but just had the call from Embryology to say that our single embryo (5BB Day 5) is low risk and euploid, so transferable! Not bad for age 44! Now need to decide whether to do more collections or just transfer. I’ll also kick off my uterus/endometrium investigations with Bill Smith and Emma/Alice test.

Sorry I can’t read the full thread again ladies. @CailinInUK thats amazing news!!! Is this someone specialised that you’re seeing? I haven’t done the EMMA / ALICE OR ERA but I guess I will do if my transfers keep failing!

Im worried I’ve had too many antibiotics. I was on a course mid July for my infected lap stitches. Then I just took doxy 1 a day for the last 10 days (I think - lost track amongst working crazy hours). So I’ve just started the vaginal probiotics now. I have enough for 10 days but the box days to do 6. Shall I use up the 10? Just incase and to put the good bacteria back in?

I have my down Reg scan on Monday and I already feel anxious about seeing my adenomyosis :(

Hi ladies, just dropping by to say I’m so behind again but will have a read through to see how everyone is doing.
@Gardenlady543 how are things going for you?

My endo surgery is next week now so looking forward to resuming TTC/starting IVF soon. It’s been a much needed break in any case.

@Loz2467 Bill Smith was recommended to me for detailed ultrasound and general gynae checks by a friend who had a still birth. The company in London is
http://www.clinicaldiagnostics.co.uk/about-cds/

@Sar1010 has been. I have a phone consult with him tomorrow. I’ve no known reason to get checked out but just want to have some assessment before transfer. I might extend it to hysteroscopy and the like if deemed worth it.

I hope your scan on Monday goes ok. I know how hard it is to keep going after a late loss. Every hurdle or setback just reminds me how close we were to having a baby. Even good news like this morning is tinged with sadness as it’s a reminder that we were here before.

That’s a great bit of news @CailinInUK 😊

@kerrym87 is it Dr Gorgy you're under, when is the appointment to discuss?

@ChickenT2b All good with me 18 weeks now. How are you doing? Thinking of you with the op.

@CailinInUK low risk and euploid!!!! Woopoooooopp!!!!!!!! 🙌

@Loz2467 yes it's fine to do more vaginal probiotics I did daily in my FET.

Such good news @CailinInUK !! So pleased for you. I completely get you want to check everything is optimised before putting this one back.

@Dochas12111 thank you so much I will.

I definitely think PGTA is going to be considered for us now.

@kerrym87 hope you get a discussion about results ASAP.
@Dochas12111 hope you get your results soon.

Hope everyone else doing ok

@Gardenlady543 well we booked initial appt with Dr gorgy but ended up seeing Dr chawla each time. Still waiting for ema/alice result, hubby's fragmentation and c&s and I think some of the antibody tests. Don't really want to book appt until we have them all back so we have full picture. Bit frustrating that I sent them all my previous notes and asked admin to notify Dr chawla and gotgy bur when I went for ema/alice about a month later she hadn't looked at them at all. Thought they might have to inform any tests needed but hey ho.
@CailinInUK that's great! We've never tested so far as I'm 36 but never had enough of good quality to test anyway so well done!
@ChickenT2b good luck, I found after my laser removal my symptoms improved, hopefully improves your situation too

@kerrym87 I think you need to ensure the next appointment where you go through results and put a plan in place is with Dr Gorgy as I've heard the other doctor putting a plan in place and then Dr Gorgy doing a completely different plan. I know he was on leave in august but I think just the early part, he may be back now. I have a document with all my test results on all the bloods etc and he went through that. Things like any Ivf, pregnancies, losses etc you can tell him that when you speak to him. Just keep notes to the results of the tests.

@CailinInUK Yay, that’s great news! Really happy for you. I hope making the decision on next steps goes smoothly :)

@ChickenT2b hope your surgery goes well

@Enfys23 Hope you’re well

@kerrym87 I called Dr Gorgy’s office last week as I was considering getting some hormone monitoring done by him. The lady I spoke to didn’t mention anything about him being away so I assume he is back

Hi All @Gardenlady543

hope you have been all well !

I’ve been disconnected for a while after my bfn and while awaiting my NK cells results which finally arrived and are abnormal

my dr at care said that I would need to take intralipids , clexin and steroids
anyone has experience with that ? Another dr told me why not taking the meds they give when they do uterine transplant

I remember you were on immune meds too? Are you able to share what you are taking , your thoughts, side effects..

thanks

@Mybabydream

What do you mean by, "Another dr told me why not taking the meds they give when they do uterine transplant"

Care have a pretty minor immune protocol, and most people recommend seeing an RI for a personalized protocol rather than a generic immune protocol often called a "kitchen sink" protocol in USA.

I took prednisolone 25mg, intralipids, Inhixa but also did LIT, took hydroxychloroquine, low dose naltrexone. I saw my RI after my positive and had more LIT and IvIg.

@Gardenlady543 a friend of mine who is a gynaecologist in a different country said that they see very positive results when meds that are given usually for uterine transplant are given instead of intralipids

care didnt advise any RI follow up . Do you think it would be better? Who would you recommend?

@Mybabydream I'm under Dr Gorgy, he would likely recommend LIT and hydroxychloroquine. Your friend may be talking about drugs like tacrolimus, I think they give that with the th1/th2 issues and it doesn't sound like you've had that tested.

@Gardenlady543 actually I did and those are abnormal results
CD3 85.6 slightly above
TNF 41.8
InF 21.4

@Mybabydream I don't really understand them as in when they give treatment for it, I've attached my result with the normal ranges, I would speak to someone like Dr Gorgy to see what he thinks if I were you.

@Spin101 I'm just waiting for remaining tests results then I will be as first consultation was a major cockup where we booked with Dr gorgy, he was in theatre and although appt was on system it wasn't on his calendar 😕 Dr chawla ended up coming on zoom 25 mins late and she did my ema/alice. Will deffo book with Dr gorgy as he was so understanding about travel and seemed to think only one visit down there and he'd liaise and get everything done closer to me, Dr chawla just seemed to think, if you want us to do stuff you come here for everything, apart from a couple of scans and bloods. Even with a rail card and cheap hotels it still adds a lot and we want a clear plan as we don't have unlimited finances, especially if I end up needing IVIG or something.
@Gardenlady543 is low dose naltrexone still used once pregnant or just for stims/collection side? Im curious from another point of view as well in that some people with CFS/ME found it really helps although difficult for anyone to prescribe it.

@Gardenlady543 thank you! I’ll continue them. Also I know what you mean about Care and immunes. I was told if I paid the £450 for blood tests she would give them. Then didn’t! I had to beg again. She only said 10mg pred from day 7 and then up to 20mg on transfer day but I’m thinking it upping it sooner to be honest as it’s a given really with adeno. I’ve been speaking to that Greek dr down in London and he recommended intralipids but I’ve been told no at this point. I also have Inxia this time. He said key with adeno is reducing inflammation and then really high prog - over 100. So I’m going to up my cyclogest and I’m on lubion. I’m worried my adeno is so severe it isn’t going to work AGAIN. X

@kerrym87 I think it's mostly for implantation and to prevent miscarriages rather than collections, but if you have a chronic disease and it could benefit from it, then look into getting on it earlier. Ideally you need to be on it before conceiving anyway, I think I started it around February and did my transfer in May. I'm in a couple of fb groups including: Using LDN to conceive/ prevent miscarriages. People on there say they stay on it all pregnancy and just come off before the birth as it blocks opioids receptors and will stop analgesics working.

I get my from here:

dicksonchemist.co.uk/new/ldn-page/

They need evidence of a condition relevant and if relevant the prescription for it. So I sent in a clinic letter for my thyroid condition and my prescription for levothyroxine. Once they prescribe the first 3 months, I then just get in contact every 3 months and they add another 3 months to my account and post it out.

If you don't meet the criteria for their prescriber to prescribe it, I've heard this clinic can deal with it, www.burghwoodclinic.co.uk/ Dr Gorgy also said he would prescribe it for me.

There's not much evidence for it, there is a fertility doctor that has been using it for a while though: ldnresearchtrust.org/content/dr-phil-boyle-mb-bch-nui-micgp-mrcgp-cfcp

In my case it was one of the things I hadn't tried and I asked Dr Gorgy should I start it and his answer was "why not?".

@Loz2467 where abouts in the country are you, I go to a place called cherish in Birmingham for intralipids. Yes that's care's steroid regime, Dr Gorgy wanted me on 25mg from early on though and they were happy to prescribe more so I could do that, and I mean it did work.

@Gardenlady543 I’m in Manchester but I haven’t looked externally yet but I’m sure there would be somewhere? I don’t know how but I’ve tons of pred so I can’t definitely up my dose. The guy in London suggested 20mg from progesterone rather than on actual transfer day but I’m worried 10mg is low to start with and isn’t actually going to do much! I’ve never had NK cells tested but I believe it’s commonly needed in an endo / adeno protocol?

I can’t really do much else but my mind is awful at the minute.

ive done:

had the lap and hysto - no endo and the adenonyoma / fibroid isn’t in the cavity.

longer down Reg. Haven’t had a period since my withdrawl bleed in May.

added letrzole which reduces estrogen even further as it stops it from the tissue not just the ovaries like the down Reg.

took serrapeptase for inflammation.

added antibiotic and oral probiotic and just completing vaginal probiotic now.

steriods and blood thinner

lubion and prog - although I need to up this and try and get levels over 100. Think I was in the sixties last time. Can’t exactly remember.

is asprin good to add for blood flow?

then pre natal and vitamin d - same as last time.

@Loz2467 aspirin is debatable pre established pregnancy as it can affect implantation, you can add it in when pregnant though. Sound alike you've done a lot of things, I took prednisolone 25mg and Inhixa from CD8 and had intralipids between cd7-10.

@CailinInUK That’s really good news. Not always checking thread as I’ve been getting a lot of nausea and tiredness. Will you do more egg collections? You only need one to work. It’s good you’re doing emma, era, Alice and nk cells. My latest result on microbiome were all clear of bv, so I am just taking canesbalance every day with mostly canesflor but Flora Femme twice a week and every morning I use Vagibiom. I’m not going to stop probiotics. Also for reference, I started canesbalance 10 days after transfer.

@Gardenlady543 I did see on the thread a little bit of time ago where you were all discussing asprin. I took 75mg maybe for a week or so, so I’ll stop that. I haven’t taken it each night but I didn’t realise it could potentially affect implantation. I wonder if I should up pred or leave where I’m at. I know I can’t stay off google looking about adeno and worrying about the brown spotting etc - it makes me think my adeno must be relatively severe if getting a whole week of brown spotting. The estrogen must be sky high!