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Infertility

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ERA/EMMA/ALICE Testing Thread 3

999 replies

Janefx40 · 02/01/2022 22:33

Hello all,

This is a continuation of the ERA/EMMA/ALICE Testing thread.

New posters are welcome. On here you will find a group of women who are either doing these tests or have done them already and are further on the journey

This is the friendliest and most supportive group so feel free to join and post

Xxx

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Janefx40 · 16/02/2022 20:20

Thanks everyone. Yes of course I need to wait for the results and follow the plan. I think I just needed someone else to tell me that. I make all these decisions on my own. MyDP is wonderful but he doesn't get involved at all. So there can be a lot whirring around my head and a lot of pressure to "get it right". Thank you for being my head. It's just a superstition and it doesn't mean I can't get pregnant another month!!!

@Gardenlady543 he did lots of immune tests - NK/ Cytokines etc. he doesn't think the Chicago ones are much good because he thinks the time it takes for the bloods to travel invalidates they results. He also did one test for thrombocilia - not all of them as we're not creating new embryos but just one that would change the treatment plan. He also tested my thyroid and prolactin as I don't think CRGH do that routinely. I think that was it! Lots of blood as @VenusStarr said.

I've always had raised cytokines in the past so I'm expecting to have to do 4 weeks of Humira but if they come back normal then we can start straight away.

Xxx

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Gardenlady543 · 16/02/2022 20:26

@Janefx40 my DH is the same, I'll explain everything to him and say what do you think and he'll reply "I'm not sure, what do you think?" A clairvoyant told me I'd have twins so I have it in my head that it won't work until I have a double, I did ask my specialists about that when I spoke to her and she said no to it!

That sounds like a good work up, when do you get the results?

Janefx40 · 16/02/2022 20:30

@Gardenlady543 I know at least 3 women who have had single embryo transfers and ended up with twins! So it could happen!!!

Results are in 2 weeks and he was super kind and gave me an earlier appointment to get the results as he's going away. He's going to come out of a Zoom conference to see me. I really liked him. I think there's something a bit exciting for him too about having only one shot (although he did say he wishes I'd come sooner!)

@Violette22 sorry - not ignoring your chat - it's just that I don't know anything about it. But I've ordered the strips now too! May as well check my acidity as well !!!

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Janefx40 · 16/02/2022 23:32

@Violette22 and yes that sounds like progesterone early enough. I'm not 100% sure what immune protocol my friend was on but I think steroids and IVIG. I can ask her if you like?

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SUMMERTIME02 · 17/02/2022 16:26

My EMMA & ALICE test came back with results that require me to take antibiotics (Metronidazole tablets) and probiotics (canesflor vaginal capsule).

Am i ok to start the two together? or should i complete antibiotics first and then take the probiotics? Has anyone else had these before?

Violette22 · 17/02/2022 16:34

Thanks @Gardenlady543 for the clarification regarding the ph levels and acid tablets:-). Stupid question; so do you think it is basically OK to insert the physioflor and acid tablets at the same time? I think I will start both of them tomorrow when my metrodinazole treatment ends, but I will ask my doctor's opinion.

@Janefx40 no need to apologize :) And yes, it would be interesting to know how your friend succeeded! Although, I think no one can say for 100% what it was that in the end gave her a succesfull pregnancy.

@VenusStarr I hope that sitagliptin will give you success

Violette22 · 17/02/2022 16:39

@SUMMERTIME02

My EMMA & ALICE test came back with results that require me to take antibiotics (Metronidazole tablets) and probiotics (canesflor vaginal capsule).

Am i ok to start the two together? or should i complete antibiotics first and then take the probiotics? Has anyone else had these before?

Hello @SUMMERTIME02!

I am from Finland so different country but I think the issues and treatments are quite similar :-).

I got the same treatment plan than you last week after finding out I have 0 % lactobacillus and 77 % gardnerella. My treatment was to take first the metronidazole for one week and after that the probiotics (lactobacillus crispatus). @Gardenlady543 (The specialist in Vagina Microflora ;)) has provided some other useful information about the treatment on this and the previous page.

May I ask what your percentages of different bacteria were?

Violette22 · 17/02/2022 16:45

Edit to my previous: not excactly the same treatment plan, you have a different probiotic.

SUMMERTIME02 · 17/02/2022 17:30

i'm still waiting for my results in terms of what the percentages are, i was just told to take this in the meantime with very little extra explanation other than it was needed. :/

Violette22 · 17/02/2022 17:49

@SUMMERTIME02 it really sounds like you didnt get enough info about the treatment, I am sorry about that. Are you able to call the place where you are being treated?

Janefx40 · 18/02/2022 09:18

@Gardenlady543 I bought some of those vaginal PH strips. With my Flora I'm aware that although it was only slightly low, I had been on a very healthy sugar free diet and am definitely off the wagon! So was concerned it was on the way to getting worse. The first test showed slightly raised PH but the instructions said to test again in a few hours and I think that was normal. Do you think I need to take action?

ERA/EMMA/ALICE Testing Thread 3
ERA/EMMA/ALICE Testing Thread 3
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Littledream · 18/02/2022 09:19

Hello all.

New here. I was sent in this thread to read after my ALICE EMMA results. I'm 40, just 41. TTC with ivf for 3 years. 1 MMC and 1 pregnancy to 18 weeks, which had a fatal fetal abnormality, so devastating. No implantation since. Despite 3 euploid transfers. So I now seem to have an implantation issue. ERA normal. Alice and Emma say ultralow biome, but no bad bacteria, take probiotics vaginally. Strangely the Igenomix report didn't give a lactobacillus %, I presume because so low. I probably won't repeat it just will take canesflor now regularly. Maybe a 2 week course and then maybe 3 a week?

I have had hysteroscopy, normal. Getting laparoscopy next month just in case of silent endometriosis.

Have had 3000 euro worth of bloods at a London clinic. Did not find the advice after very good( advised LIT)so have had a second opinion with another specialist, who said not LIT in my case! Have raised NK cells and cytokines. Plan is to take hydroycloroquine and 8 weeks and reassess. If lowered maybe then steroids and intralipids for a transfer. I've been told I definitely point to an immune problem. Possibly triggered by retained placenta after my induced delivery at 18 weeks.

Lovely to find this group. I've found it so helpful. Took me hours to read all the posts.

We have only one euploid embryo left.

I have a medical background, I used to be a GP. But when you get to the immune investigation stage of implantation failure, you are really not in the science field. I am at the desperate what else can I try stage.

Keep strong ladies x

Gardenlady543 · 18/02/2022 13:27

Hi @Littledream welcome! I'm sure you have been completely consumed by all this as I have. I'm a doctor but nothing to do with fertility medicine, although I feel I'm pretty well equipped for a change in specialty with the amount of reading I've done! It sounds like you have a really good plan in place: you've done imaging, you've done the ERA/EMMA/ALICE, sounds like you've had all the blood tests, and have a lap being set up. Do you have the report from the EMMA ALICE? All the UK reports I've seen provide a pie chart. However the in the USA they get a list of all the various types of bacteria with four different types of lactobacillus listed and they provide the amount of each found. I don't feel this is not particularly helpful though because the research on the microbiome usually classifies a participant as normal if they have more than 80% or 90% lactobacillus so the overall percentage is quite useful to know. It sounds like you don't have any dsybiotic bacteria but you need more lactobacillus, @seven201 was in this position I believe. You might want to try and get hold of florafemme, It's expensive and comes from the USA but it has more beneficial bacteria then all other products on the market, it also has strains of bifidobacterium as well as lactobacillus, some studies have found that bifidobacterium which is also a acid producing bacteria may be just as good as lactobacillus. I did wonder if perhaps I had an issue with getting colonization with lactobacillus. There were some research articles that found people can have lactobacillus pages which basically kill off all lactobacillus and prevent a good microbiome forming.

@Janefx40 These test look fine to me, I find it really difficult to interpret the exact pH, really you're looking at does this look Green [good] or does it look blue [bad]. When my microbiome was abnormal it was very very blue! Not at all green. Also you really have to read these as soon as you've taken them, they turn blue after drying, I did an experiment where I put the acid tablet on one of them and by the next day it was blue. There will be normal fluctuations in the vaginal pH throughout the menstrual cycle, I believe that it goes up slightly around the time of ovulation and also in the few days after your period. What are you really looking for is whether your pH is consistently above 6, as this will be the ideal conditions for dysbiotic bacteria to flourish. I think the body can cope with a brief time with a high pH as we know that it it will be raised during menstruation.

@Violette22 I don't feel that there should be an issue with using the acid tablet and the probiotic at the same time, I've done it. I found that it's best to get these inserted high up into the vagina right before you go to sleep, that will mean you have the longest period of time possible for it to do its job. I have tried spacing it out as well, so putting one in first thing in the morning but even if I'm just sitting down the contents come out fairly soon after.

@SUMMERTIME02 You definitely want to complete the antibiotic course before starting on the 10 days of vagina probiotics. The fetilysis treatment plan involves alternating between a daily vagina probiotic and clotrimazole pessary while on the antibiotic course. This is fine as well and in fact this is what I did in my recent course of treatment. You will however still need to complete at least 10 days of vagina probiotics after finishing the antibiotics.

So I finally received my immune kit, and unfortunately now I have another issue to deal with, I have taught my husband to take blood, he can manage a vile or two. My test requires nine vials though. In addition one of my samples and one of his samples need to be centrifuged, I don't happen to have a centrifuge lying around!! I managed to find one place fairly nearby that can take blood and centrifuge it but guess what, it's broken. They pointed me in the direction of a guy who I've spoken to who has a list of phlebotomist that he can send me, hopefully he sends it as my only alternative is find a way to get 9 vials of my blood and purchase my own centrifuge!

SUMMERTIME02 · 18/02/2022 13:44

@Gardenlady543 Thank you for the information! do you think it would be ok for me to take the last two probiotics while starting my meds for FET?
I spoke to my nurse today who said it is fine but im unsure because she also told me today to take the canesflor first and then the antibiotics, until i told her online says to do the other way around :/

Gardenlady543 · 18/02/2022 14:22

@SUMMERTIME02 Yea that's fine, are you going to go straight into the FET without repeating? If so then you may wish to continue with a daily vaginal probiotic during your transfer cycle until the date of the first scan if you’re successful, which is what this research protocol(https://bmjopen.bmj.com/content/10/10/e035866.abstract) intends to do in their participants.

SUMMERTIME02 · 18/02/2022 15:20

@Gardenlady543 yes, my clinic said they wont be repeating the tests and next step will be FET.
Thank you so much, you've been ever so helpful! x

Janefx40 · 18/02/2022 16:55

@Gardenlady543 thanks. I'm sorry you now have another issue to figure out! Medichecks have nurses they send to do bloods. I wonder if you can somehow find their list? It's about £50 but may not work anyway if they need a centrifuge. If you're in West Hertfordshire or nearby then I still have the number of the nurse who came to do my bloods!

@Littledream I'm so sorry for your losses and all you have been through. I've just started seeing Mr Shehata in Epsom. Waiting for results. I also only have 1 euploid left and I am nearly 45 now so this is our very last shot. Hope you find the advice you need on here xxx

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Gardenlady543 · 18/02/2022 17:14

@Janefx40 so I got the list through and called up the ones in my area and the cost is £150 per person (and me and my husband both need it) for the blood draw and centrifuge, clearly these people are charging a lot for centrifuging a sample. So I've bought a centrifuge off eBay for £66, no idea of how it will go but it's just for the LAD test that the doctor told me comes up abnormal in 3 out of 4 cases anyway. So I'll have a further delay now while I wait for it to arrive, it says to only send the samples off on a Monday and Tuesday. I am exhausted with all this!

Janefx40 · 18/02/2022 17:22

Hmmm I wonder if they all need to be Monday or Tuesday. Most NK/cytokine tests are analysed in Chicago so those usually need to be sent Monday to Thursday. Maybe the LADs go to Chicago too? Or are these going to Greece?

And does this mean you're going to have to get your DH to do 9 vials!! I have good veins but my best one gave up at Dr Shehata and the nurse had to switch for the last few vials. But that was about 20!

All sounds like a lot of stress anyway. Hope you get it sorted!

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Littledream · 18/02/2022 17:32

Hello girls.

@Gardenlady543, thanks so much. Have found that probiotic from US. Ordered already! That sounds like such a stress re the bloods. I just went to Dr Gorgy in London. Cost a fortune but they did all those bloods there. I can't imagine the stress of your husband taking your blood!
Best of luck. The stress if it all!

@Janefx40
I will send on my ALICE EMMA once I figure out how to do it!!! Maybe I need to log on to the PC.

@Janefx40 thanks so much. Oh I really know where you are Janet. We are also really on the last leg of this journey. Likely just this embryo. At most maybe an embryo adoption after if we can face that. But really and truly I feel this is the last year. Or so I feel now. The strain and life on hold is really unbearable the longer you go on isn't it? I'm praying for you for this embryo too. I hope you are happy with that doctor, is he an immune guy. Thinking of you. Believe me I am in the same place

Take care everyone, talk soon x

Gardenlady543 · 18/02/2022 17:34

@Janefx40 I think they do all of the tests at the lab in Greece. Yep my husband will have to take 9 vials of my blood 😐 . The last time he took 1 vial ok but he couldn't use the vacutainer system so did it with a butterfly needle and syringe. This time we will have to use the vacutainer. It is very easy to take blood but unfortunately my DH doesn't listen to what I'm telling him. It's like teaching a child, you go into a vein having felt where it is, not by where it looks like it is. When I was trying to teach him the first time he just pretended to feel and then stabbed me multiple times!

Janefx40 · 18/02/2022 18:08

Ha! You're very brave! No one untrained is coming near me with a needle!!! Hope you can get it all done soon. Xxx

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SUMMERTIME02 · 19/02/2022 14:21

i posted this in the probiotics related thread, but any advice would be much appreciated!

My Emma test showed i needed antibiotics and probiotics.

I am currently on:
Metronidazole 400mg. 1 tablet, twice a day, for 7 days.
Once above is completed I've been instructed to start Canesflor - one capsule each day for 6 days, then once capsule per week for 4 weeks.

What i want to know is, can i start Optibac while im taking antibiotics, and if so, do i need to stop taking this while im using canesflor and resume once thats completed? in case it doubles up?

Thanks

Gardenlady543 · 19/02/2022 14:55

@SUMMERTIME02 Ingenomix usually recommend 500mg of metronidazole twice a day, in the UK getting hold of 500mg can be tricky as it's usually prescribed in 400mg tablets. So you either need to be taking 500mg twice a day of 400mg three times a day.

The canesflor needs to be taken once daily for 10 days in a row, ignore what it says on the packet, if you want to go on and use one a week then that's absolutely fine but take the 10 day course initially.

Optibac is an oral probiotics with strains in it that have been found to improve the gynae microbiome, you can (and in my opinion should) take a daily probiotic with these strains in: with the antibiotic course, with the vaginal probiotic course and forevermore. Try to take it a couple of hours or more after you have taken the antibiotic and not at the same time.

Gardenlady543 · 19/02/2022 14:56

Typo: 500mg twice a day OR 400mg three times a day.