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 😊

Hey @CailinInUK yes I have scan booked for 7 weeks so next week. So far things feel ok, anxious waves, nauseas waves and trouble sleeping. But I’m also feeling very lucky to have even got this far. Just trying to live in the present and not think too much about the future. Luckily we’re in NYC doing some festive holidaying this week so that’s been a major distraction- if not a bit tiring in parts.
Sorry I hope that’s not too insensitive to share my update.
I’m so glad to hear about your microbiome! Fantastic- you’re getting there!!

@CailinInUK that’s great the results came back normal. One more thing checked off the list. I think it’s a good idea to transfer in Feb if that’s when you can relax more and not have much one.

our transfer is now going to be delayed. My Emma/Alice came back and I’m still 0% good bacteria all bad. I’ve been prescribed a different antibiotic - clindamycin. I have taken amoxicillin for it already and I got my hands on some physioflor so I’ll use that afterwards. The advice is to repeat but i want to know what more they can do for it. Last time I did the test, got 0% repeated 3 months later and had 70% good bacteria and did a transfer that worked so if it’s not worked this time fine and I’ll take the physioflor and the new antiboitc but I want to know what treatment would be if I repeat and it’s still 0%. If there’s not much more they can do I don’t know if we should repeat which would be my 5th Emma/Alice albeit 2 before pregnancy and two after.

@Gardenlady543 how many rounds of antibiotics and probiotics did it take to clear yours up? I can’t remember! Any thoughts on repeating it again or just going ahead?

I have to go under sedation for the biopsy so it’s another consideration I have about all these repeats.

@Dochas12111 sorry to hear about that result.
Delays are really frustrating.

What bacteria were present? Was it strep and Staph again? The antibiotic I had for the UTI was broad spectrum and cleared strep and staph but spared the lactobacillus (unless it grew really quickly again...). Cephalexin. In the past, I tried Co-amoxiclav which didn't clear the strep for me.

You could try the Fertilysis microbiome test as that's not invasive and seems to cover more Bacteria too. It's a menstrual sample. I'll be doing one early Jan.

There are some herbal anti microbials that are meant to be effective against strep and staph, e.g. oil of oregano and garlic. From listening to Zoe and Healthpath podcasts, they do say that probiotic supplements are temporary and it's better to improve microbiome with diet, though I still use them! I would recommend the relevant episodes on these podcasts. (I'm making an assumption here that's there's a link between gut and endometrial microbiome but either way, there are all round health benefits by focussing on gut too...)

Sorry again about the result. :(

@Dochas12111 sorry to hear this, it's like what happened to me :( so the first one I had 0% and a mixture of bacteria so I took co amoxiclav. The next one was still 0% but this time mostly gardneralla, I'm guessing you have a similar bacteria this time to gardneralla? I went intensive with antibiotics so I'd recommend you do the same:

metronidazole 400mg three times a day for 14 days and clindamycin vaginal cream daily at the same time for the first 7 days. This is like detol for the vagina so it should clear stuff.

While on the antibiotics alternate daily between Clotrimazole 100mg Pessary or clotrimazole cream. And a vaginal probiotic.

Once you've done all that take a daily vaginal probiotic for two weeks.

Why don't you look into the fertilysis menstrual fluid microbiome test, less invasive and cheaper than EMMA ALICE.

I did:
EMMA ALICE - 0%
Antibiotics
Transfer - fail
EMMA ALICE - 0%
Antibiotics
Transfer - fail
Fertilysis test - good result

So I would advise against going straight into a transfer without checking the result first.

Ps where did you get physioflor from? I thought it's been discontinued.

@Gardenlady543 thanks for that information on that protocol. I’ll send to my consultant and see what he says. I actually have all strep bacteria. That’s it!

I found physioflor on some dodgy website! Took two months to arrive and had to pay customs but the packaging looks fine!

my consultant is very against the fertilitysis. Says it can give a false positive! I’m going to enjoy Christmas and then will arrange a meeting with my consultant to get a plan in place. I know I probably need to just re biopsy!

thanks for the info on the podcast @CailinInUK I’ll listen to them.

@Dochas12111 ah probably not worth the metronidazole, I would use vaginal clindamycin for 2 weeks if I were you. Hmm I can't see how there would be false positives they use the same technology as EMMA ALICE, looking for bacteria RNA. The only issue I can see is the menstrual fluid goes through the vagina so you may get some contamination. I used a menstrual cup to collect to try and avoid this.

Hi I just wanted to update to say the scan went well. Measuring on size and good heartbeat. I’m now 8 weeks.

if anyone would like to hear my protocol this time let me know and I’ll write it up. i definitely think the Laporscopy, steriods and acupuncture were the heroes in this story but actually I made a lot of changes so it’s hard to say exactly.

sending strength and positive energy for 2024.

@Gardenlady543 how are you getting on? Not long now? Xx

@Sar1010 Great news! we do have a pregnancy follow on to this thread if you wanted to join? ERA EMMA ALICE infertility graduates/pregnancies thread 2 www.mumsnet.com/Talk/pregnancy/4955543-era-emma-alice-infertility-graduatespregnancies-thread-2

I'm doing ok, c section is Friday.

How's everyone doing, any tests or cycles coming up?

@Gardenlady543 had down reg injection 29th, scan 12th.
@Sar1010 cautious congrats so far! What was different for you? I am having prostap, then meriofert 150ui then adding in 150 ui gonal f. Steroids made no difference to me and my immunology came back with no issues. I have had acupuncture for years now which helps with my pain and relaxation. As well as dietary changes and supplements 🤣

@Sar1010 , congratulations on your positive scan, I hope things continue in the right direction for you :). May I ask what dosage of steroids are you on and from which CD? Are you on any other immune-suppressants such as Intralipids or literally just the Pred? And were they prescribed to you due to elevated NKC or just on an empirical basis? Sorry for all the questions, I hope it's ok 😬

@Gardenlady543 you must be so thrilled to be this closed to the finishing line, I'll be thinking of you lots on Friday x
I'm just ovulating and doing timed intercourse so testing will be in a couple of weeks, not much else to report from me.

Hi All
happy new year, hope great news for everyone here!
@Sar1010 congrats,🙌
@Gardenlady543 exciting!!! Fingers crossed for u!
may I ask you pls for how long have you taken, estrogen, progesterone, prednisolone, aspirin, Clexane for?
should they be given for 12 weeks or for Clexane I heard thoughout pregnancy if confirmed?
thanks a lot!

@Mybabydream in my case Clexane/Arovi finished at 12 weeks alongside the 10mg pred, Lubion and Cyclogest. My nurse did suggest weaning off the Cyclogest for a few days, which I did and it was fine.

@Sar1010 congratulations!

It's great that people are progressing on, I hope Xmas was a good as could be for everyone.

@Mybabydream I did a modified natural FET so no estradiol.

Progesterone I came off PIO at 12 weeks and cyclogest at 14 weeks and then my level was low after coming off so I took 1 cyclogest a day until 28 weeks.

Inhixa I have stayed on the whole time and will continue until 6 weeks after the c section.

Aspirin I started with a positive test and stopped at 36 weeks.

Prednisolone, I weaned off at 12 weeks.

Infusions- IvIg and intralipids I finished at 31 weeks.

I've gone and pulled my back today, super frustrating I was just getting up from sitting on a gym ball and got the most intense sudden pain. It's high up and no other concerning signs so I've been advised just to keep an eye on it, super annoying though!

The very best of luck on Friday @Gardenlady543 hopefully your back will ease up soon. Typical timing!!

I am starting my antibiotic today and then will do an intensive course of Canesflor and pjysioflor. DH and I are not in agreement about a retest. He wonders what happens if we retest and it’s still 0 and doesn’t want to get stuck in a cycle of test antibiotics test antibiotic repeat. I am also fed up of doing the retests but worry if we transfer and it doesn’t work will we end up retesting then anyway or using our remaining embryos without rechecking which seems silly.

I said to DH if it is 0 again and there’s no further treatment then maybe I’ve just developed chronic endometris and it just may not work for us again.

I did ask my consultant about the vaginal clindmycin but he wasn’t keen!

congrats @Sar1010 fingers crossed all keeps going well.

@Mybabydream I took everything you listed until I was 12 weeks. I weaned off slowly so was probably nearly 14 weeks when I stopped everything completely. I wasn’t on clexane though.

Thanks @Dochas12111 :) back is still painful today :(
Why don't you test with one of those vaginal RNA tests and only move forward with a endometrial one when you get a normal one? This is an example invivohealthcare.com/products/testing/vaginal-ecologix/ I think this one you can only order through a Healthcare provider (I think the dietician Mel Brown does them). But there are others that people can order themselves. It took me 2 sets of antibiotics and 3 tests to get a good result.

Thanks @Gardenlady543 I’ll look into it. I have back issues but I’m not sure of what I could suggest as you’re pregnant . Maybe a hot bath with Epsom salts? That tends to help me along with stretches.

@Dochas12111 I don't have a bath installed, in the past I had a hot tub in my home but I stopped bathing in water because of the microbiome issues, I am looking forward to getting it set back up and doing it when I can after the c section though. I do have an inflatable bath in the attic I could get down but my worry is doing something to the microbiome so close to surgery :( I guess I just need to get through the next couple of days and hope that the reduced abdo weight will make things easier.

Thanks a lot @Gardenlady543 @Dochas12111

@Gardenlady543 May I ask for the inhixa what was the reason u were given it ? For me it was high high tnfalpha il10 41 and high IFNgIL10 21.4..

@Mybabydream I have the PAI1 mutation, C4M2 mutation (a test only done at the clinic I'm with) and MTHFR mutation. So these all mean I'm more prone to thrombosis, I also consistently have a raised fibrinogen.

@Gardenlady543 you could use a tens machine as it's safe for use in labour x

I just wanted to wish you good luck for tomorrow @Gardenlady543 x

Thinking of you @Gardenlady543 and sending so many good wishes/vibes and all!!! xx

@Gardenlady543 all the very best for tomorrow, I'll be thinking of you lots. So excited for you!

Thanks everyone she has arrived safely :)

@Gardenlady543 woohoooo congrats!!!! Very happy for you, enjoy every moment !!