ERA EMMA ALICE testing thread #6

[Gardenlady543]

@Janefx40 @birdbybird @seven201 @Gardenlady543 @patientpatient @MyEasterEggs @thislittlebird @Yuliaaa @Violette22 @2021ivfagain @OrangeBengal @Enfys23 @Loz2467 @DEIVF @Hopeful199 @ER12 @greendress789 @Douchas12111 @Lori2022 @AdviceForJane @Anonbaby @Molls87 @ChickenT2b @GoldenElephant @IVF22 @StillTrying10000 @warrior101 @whatcangowrong @Yaynayokay

Oh yes it really has happened we are onto thread #6.

All are welcome to join us, we started out as people interested in ERA EMMA ALICE but we seem to have had every test available between us.

So if you want to know about the microbiome, reproductive immunology or you just feel your case is complicated and what like minded people to talk to about it you've come to the right place

@Janefx40 maybe I'll actually do it one day and we can find out . I think it's lovely we can share our mad moments!

I've got an appt with mr Lower on 4th Jan, so I'm glad I don't have to wait long for that. It's on a train strike day so no doubt I will get horrendously lost trying to drive to Harley Street!

@seven201 Remind me to tell you where to park to avoid congestion charge! If you don't already know that is. I spent about 2 years driving to that area x

It's 5am and I am up testing, the tests don't photograph well but I think they at least indicate I'm not imagining it. This is 6dp5dt is it ok that the line is faint still?

Congratulations on your BFP @Gardenlady543! Stay sticky! I know it’s an anxious time but try not to drive yourself mad with testing because it’s normal for some to have very light lines at this stage due to slightly later implantation. After 8 pregnancies I’ve seen a lot of threads and tests and this is stronger than yesterday which means it’s moving in the right direction. It can go from being a squinter to much darker within a matter of days. When I was testing I did it every two days for a week until I got a dye stealer then relied on bloods. Only test once a day max with FMU if you can as if you test later with diluted urine you’ll only worry yourself. I truly hope this is it for you 🤞🏻

Thanks @Janefx40 I’m pleased it was caught early and am feeling a lot better about things today. Relieved I asked for the tests at my scan on Friday. It was for peace of mind more than anything else 💛

@Gardenlady543 I see it!!! I can’t advise much more but for 6 dpt I wouldn’t of thought you’d be seeing much more!

I start my norethisterone today. Such mixed emotions I know it’s only a tablet but it’s the start of my IVF journey with secondary infertility that I just didn’t really expect to go through. Not that anyone expects to struggle with any kind of infertility!

@Loz2467 I started my IVF journey after secondary infertility and recurrent miscarriage this time last year. Wishing you all the best with your cycle!

@Gardenlady543 cautious congrats to you! Absolutely everything crossed for continuing line progression this week. Out of interest, what did you do differently this time round?

@Loz2467 may it be a quick IVF journey for you. Brace yourself for the emotional rollercoaster that goes along with it.

I cannot wait to start, still waiting on 1st period after loss.

@Gardenlady543 oh my goodness!!!! You have a BFP!!!!!!! I really wouldn't read anything to it being a light line, it's still very early days. You've never got this far before. This is massive!!!!

Thanks @CailinInUK lol omg I did everything:
-Underactive thyroid diagnosed early this year and has been in range for some time now.

• Diagnosed with immune issues including high peripheral NK cells and a complete Hla dqa1 match, I had LIT x4 and I'm on a full immune protocol
• Underwent open fibroid surgery for 2 small fibroids (1cm and 2cm) in late August, one fibroid has been there the whole time and I was told it wouldn't be an issue and a new one had occurred recently, but both were deemed submucosal by the lab, also checked for endo at the same time- no endo there.
• Lining was likely at its best because of the natural modified cycle vs previous medicated cycles including one where my estradiol was over 8000. These cycles are something I wanted to avoid, my lining was always described as patchy and not quite right, I know some specialists feel high estradiol is unhelpful and in addition I would vomit a lot with the high estradiol levels throughout the FET.
• Optimised the microbiome which has been a big issue in the past.
• Went extreme in relation to progesterone, I had 2 x ERAs performed in mock medicated FETS, the first showed I needed an extra 24 hours of progesterone and no need to repeat the second at the new time showed I still wasn't receptive and to add an extra 12 hours and they called me a slow responder. Progesterone has been an issue for me from the beginning, I was diagnosed with progesterone hypersensitivity and this seems to have been at its worse with utrogesan. We decided to ignore the ERA and go for standard transfer timing and the transfer ended up being at 126 hours vs the advised 156 hours. We did this because I wasn't convinced about the extra 1.5 being helpful and the lab said the test would need repeating given I had corrected my thyroid problem and had surgery. I wanted to make sure that I saturated the progesterone receptors this time though and use a variety of routes in case one didn't work for me, note my progesterone freak out the other day though, as my level did end up being very high at 145. I am on cyclogest 400mg rectal twice a day, PIO every other day and lubion twice a day the other alternate day, plus my follicle will be releasing progesterone.

@seven201 ah thankyou!!! I think I needed this level of excitement!! Since I have never seen anything ever on a test this is a big deal and I always felt like I would never be someone to say oh look a line but wait it's not dark. My urine levels must be pretty low as a wondfu that detects 10 is not showing anything visible on a photograph and the FRER line is very faint. But considering yesterdays FRER was pretty much non existent it has gone up. I have been looking at lots of people with similar lines at 6dp5dt post FET and they often would have chemicals but I don't know, it is still a big deal as hcg is only made after implantation has happened, this must mean I'm receptive and my lining is adequate to allow implantation, plus the complete HLA match I have seems to have destroyed an embryo before hcg was released in the past so I have got further. I hope the immunes can support the ongoing process as the other treatments I looked into like tacrolimus seems to get stopped at the time of a positive so wouldn't help me after this point. I am hoping that since the transfer was at about 3:30pm so pretty late in the day, that I could still be a late implanter still and the embryo hadn't yet restarted to hatch it so needed some time to get going, that it wouldn't be realistic to have expected implantation at the exact time of the transfer. It seems people either don't see anything until as late as 9dp5dt or they have a dark line by now. I guess all I can do is see how I get on with progression, but I am in a much better position vs 4dp5dt when I spent the whole day crying.

@Loz2467 this is a big deal for you too, I remember looking at IVF as something that would have a higher chance of working that what I was doing. This is inevitably why you are pursuing it, so onwards and upwards!

Oh my god @Gardenlady543 massive congratulations. You should be super proud of yourself, it was a lot of hard work!

@Gardenlady543 this is amazing news! I tried to look back at my tests but the earliest I have ever tested is 8dp5dt. It is very early so I wouldn't worry about darkness of lines just yet! I am tentatively excited for you.

@Loz2467 good luck. It's hard when you first get started but once you get into the main bit of treatment you'll just be swept along with it all x

@Gardenlady543 you’ve covered so many bases and been so kind with sharing information and responding to others, for the short time I’ve been on this thread. I hope this is your time.

For me the biggest challenge to date has been getting the euploid embryos that are also risk-free of the genetic condition we’re avoiding. But having just received my vag microbiome results, I need to pay attention to wider things to give any future embryo the best chance (2023- please let there be another embryo to transfer). I’ll attach the summary below. This is the first time I’ve got it tested and bear in mind the sample (dated 23 Nov) was three weeks after my late miscarriage. My biome looks really bad. I’ll schedule a follow-up call with Juno but wondered, for those experienced in this, what you would consider doing next. Do I get antibiotics first before adding the good bacteria? Ironically, I’ve not needed antibiotics for two decades and have had them twice in the last two months, once immediately following surgical management early Nov and once last week due to Strep throat. I’ve never had any symptoms down there, all was hunkydory, or so I thought…

@Gardenlady543 I really am over the moon for you. You've fought so hard to get your BFP! Did you cave and do another test this evening, or are you doing one in the morning?

I'm thinking of trying the cough syrup and nytol protocol you mentioned as I'll be having a month off letrazole, steroids etc, but would still like to try naturally I think. Do you have a link to what I need to take?

@CailinInUK sorry I don't know much about that kind of stuff but just wanted to say I feel for you. It's another blow to take. Hopefully it's just a case of the antibiotics causing it and your body hopefully would bounce back quickly with treatment. I think try and get the antibiotics and there won't be any harm in starting probiotics sooner. As I say though, I don't know much about it.

Thanks @OrangeBengal and @Janefx40 :)

@seven201 I haven't done any tests since this morning as I really wound myself up yesterday afternoon and it wasn't helpful. I hope there is a darker line there tomorrow.

I think the antihistamine protocol the people in the USA talk about is a combination of Loratidine, famotidine and diphenhydramine. I think it came about from fertility specialists adding this stuff in rather than a reproductive immunologist, but people who have talked about it say things like:
Loratidine 10mg in the morning
Famotidine- I’ve seen this as 10 mg at lunch or 20mg twice a day
Diphenhydramine (nytol) 50-75mg at night
Be careful as this stuff may make you drowsy.

It's the nytol that you get over the counter, the one on the shelf is herbal and different. I think you can get 25mg and 50mg and you should be able to get a generic version for cheaper than the brand. To be honest all I have done is take nytol 50mg every night and I was a bit worried about doing this in case it interfered with my protocol as I'm on quite a few immune meds and didn't know if I could push it too far. However, this stuff knocks me out at night and I decided that I would rather take something that I knows will help me sleep than have a lot of sleepless nights.

@CailinInUK oh that's really frustrating about the microbiome, it took me a while to get on top of mine and I felt like it was a losing battle for a good while, I was also oblivious to there being an issue. Will Juno advise about an antibiotic? you have anaerobic bacterial but you also have aerobic, when I had something like this I was put on co-amoxiclav which is a broad spectrum antibiotic but then what happened is the gardnerella which is anaerobic wasn't touched and just took over. So then I had to hit it with a regime of 2 antibiotics aimed at anaerobic bacteria to clear it. It's interesting because I also literally never need antibiotics, I know we've been talking about urinary infections here recently which are so common in women, I literally never get them and it's so rare for me to pick up any infection at all, which seems linked to my overactive immune system but then I don't understand why my uterine microbiome was so bad! You can take oral probiotics but I wouldn't start recolonizing with vaginal probiotics until you've cleared the bacteria. You may have seen that I have talked about alternating between a vaginal probiotic and antifungal when taking antibiotics though, but in my opinion the real recolonizing work happens once you've finished the antibiotics.

@CailinInUK it's a tricky one as antibiotics wipe out both good and bad bacteria and can end up putting everything out of balance so juno need to advise what would be best. Bearing in mind antibiotics affect all bacteria not sure if it would be better to do prebiotic etc after any antibiotics so you don't wipe them out too.

Just got mine back and my good bacteria is excellent (wasn't expecting that) but my yeasts are high....they have suggested 2 supplements which total £149 with one of which is essentially brewers yeast 🤷‍♀️ the other being 2 tablets 2-3times a day 🤯 when I wonder if using an antifungal like fluconazole and then ensuring my diet helps keep it in check after would work just as well. Got so many supplements for egg quality and this screening it's already over 300 as it is in past month. Anyone encountered yeast issues?

@kerrym87 you shouldn't use fluconazole if you are pregnant or about to get pregnant eg. close to a transfer, you have to use the clotrimazole pessaries instead in these cases. Thing is the fluconazole is pretty good and the pessaries sometimes don't dissolve at all inside me so don't do anything. After my operation I decided to take one fluconazole oral dose and a jelly pessary and used both. Just because the balance was offset and I was feeling a bit symptom like and just wanted it cleared. Otherwise the odd bit of clotrimazole cream if I start to feel like I might go in the direction of thrush seems to do the trick.

@kerrym87 also those supplements sound ridiculously expensive and that's coming from me who is singlehanded propping up the whole probiotic industry! I would do some research first if I were you, to find out what's in them, if they will be any use and if so if you can get an alternative cheaper elsewhere. A number of companies seem to do tests and advise that you only take their supplements based on the results.

Thank you @Gardenlady543 I take it you're meant to take it from day after ovulation ish? A quick Google brings up worries about the drugs interacting so that could be why they're not taken at the same time of day. I might just do the nytol!

We'll day from staying away from the sticks!!! That's good will power you have there.

@Gardenlady543
Congratulations. You were so brave to test early. I usually wait until 14 days after transfer. You have worked so hard. Could you let me know if you will be taking vaginal probiotics at some point?

Also were your nk cells very high as mine in blood were only slightly high and yet I am on ivig as well as steroids. I’m starting to get scared about the financial costs.

@CailinInUK

I’m so sorry. I get gardnerella from time to time and once had initial signs of candida. It’s so frustrating. I found Invivo helpful and worked with Anna Firth. I’m finding the Royal Mail strikes a nightmare as I have been trying to organise another test with Home Diagnostics as they are quick.

You need a detailed plan. I’m on lots of vaginal probiotics and oral probiotics as well as garlic tablets at present but took canesbalance to prevent bv for 10 days. My ph went from 5 to 4.5.

I’m sure with the right probiotics but antibiotics first of all you will be on the right track.

Thanks @Gardenlady543 @2021ivfagain @kerrym87 @seven201

@Gardenlady543 Juno offer a 30 minute follow-up consultation so I’ll ask all the questions then including antibiotic advice. I think I’ll need to go to GP for prescription. I have private healthcare so might go that route? Was yours ‘as bad’ as mine and how long did it take to rectify? I wonder if the IV antibiotics taken a few weeks before would cause such damage or was it likely that dysbiotic before anyway - Do antibiotics deplete the good bacteria completely?! I too have had just one UTI in my life, when I was in my 20’s (long time ago!). I’ll continue taking my oral probiotics for now ( just started them recently, after the sample was taken), get the right antibiotics and then load up on the pros.
Hope you get a good rest tonight.

Where do people go in the UK for vaginal microbiome analysis? I’ve come across Screen Me but went with Juno because they do complete NGS testing. I ordered a follow up test for later on Black Friday when there was a discount! How sad!

@CailinInUK

I used Invivo for a microbiome vaginal analysis and it was very thorough. I was had a nutritionist, Anna Firth, who interpreted my results and put together a protocol.

@seven201 a fertility specialist says to do 25mg three times a day from the day the progesterone would start to the first scan. But I wouldn't take a sleeping pill during the day so maybe start after ovulation and just take it at night.

@2021ivfagain I decided not to restart I figure that the balance shouldn't go off hopefully and don't want to introduce anything into the vagina. I did do quite a lot before the transfer though stopping 2 days before.

@CailinInUK lol I had 0.00% lactobacillus twice so you can't get any worse than my result! Some antibiotics like metronidazole are felt to spare lactobacillus but vaginal clindamycin which is what I used with it, is like dettol it wipes out everything. Very good for a reset with intensive probiotic regime. You have probably seen I like to take balance active with the vaginal probiotics for the first 7 days.

Another night of waking up every hour before testing. The FRER I was hoping would be a lot brighter today, I can convince myself it is brighter but it's very subtle. But I have gone from a close to invisible line on a wondfu to visible though, so hopefully that's a good sign? It's 7dp5dt today most people's tests are a lot darker by now. Official test day is Tuesday (13dp5dt).