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Eeyore

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1

Thursday, July 17th 2008, 1:32pm

** IMMUNOLOGY CHATTER **

Hi ladies

It has been suggested (by Blondie :D ) that we have a new section for those girls going through immunology testing and the team think it's a great idea!

We thought that we would start with chatter thread for you all and if it is indeed a busy thread, we can then look at making a new sub-forum

So here you are!

x

gemmab

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Thursday, July 17th 2008, 1:38pm

good idea.x

ICSI 1 Apr 08-m/c 9.5.8
FETJul 08-BFN
ICSI 2 Dec 08 (ES) -I'm a mummy Kaynan arrived 19.8.09! :heart:
ICSI 3 Dec 10 (ES) -BFN
FET Mar 11- BFP- M/C ;(
ICSI 4 (ES) -:BFP: 1.7.11 Cobi arrived 09.03.12 [zx160]
Egg donation Aug 2012 BFN for recipient- gutted
Egg donation Dec 2012 Recipient :BFP:
Egg donation 27.05.2013- not great - please pray for the recipient :dust:




Peppa

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3

Thursday, July 17th 2008, 1:40pm

Great idea - i know where i can track down Blondie now :D
Good luck with your tests Blondie!




ICSI May 08 - BFP
Our beautiful baby girl was born February 2009
Jan 2010 natural BFP M/C 9 weeks
May 2011 - BFP
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4

Thursday, July 17th 2008, 2:33pm

Thanks Eeyore and Team :D I feel special having my own thread!

Hi Ladies :bye:

In the next few days I will provide some basic information on immune testing, who should consider having them, what tests they involve, what they mean etc etc and possible treatments so leave it with me and I will be right back.

I have just received all of my test results from the Alan Beer Centre (The Daddy of Immune Issues) in San Francisco and am quite shocked at the results :8o: We have yet to have our consultation to fully explain the results and possible treatment but it made me wonder how many other people may benefit from knowing about these tests and treatments.

We were part of the 50% of people who are given no reason for their infertility and all tests provided by the RCOG and given via NHS produced no results. We have been told time and time again to carry on trying, we were unlucky.

However determined people we are we do not give up and in our desperation and hope to receive answers we consider other tests / treatments / diets or supplements that may help us.

Immune issues and fertility has not quite made it big here in the UK (like the US) but it is available here in a few clinics and has been for a few years. It is helping many couples and individuals who had otherwise lost hope. Of the 50% of people who are never given a reason for their infertility 80% of these will uncover something with immune testing and there are treatments.

I hope that this section / thread helps others in their journey and in the meantime if anyone has any questions please use this thread and ask away. I am not a Doctor but I can tell you what I have learned from the experts!

Hope to chat to you all soon.

x
TTC naturally, five miscarriages 2006-2009, Immune issues

BLONDIE'S IMMUNOLOGY DIARY

This post has been edited 1 times, last edit by "Blondie" (Jul 17th 2008, 2:34pm)


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5

Friday, July 18th 2008, 8:12am

Hi, this is a great new thread.
I'm taking prednisolone this cycle as blood tests showed slightly raised nk cells, hoping it will make all the difference as it's my 5th ivf using grade 1 embies (though not blastocyst this time). They just never stick!

Just a question though, had e/t yesterday morning and since last night i've had really bad stomach ache, like af pains. Was wondering if this could be a side effect of the prednisolone, the leaflet does say 'gastric upsets' among a whole host of other horrible things.

Does anyone have any experience of taking this?
What, if any s/effects did you have?
DID IT WORK?

Thanks xx

gemmab

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6

Friday, July 18th 2008, 9:22am

Blondie- what sort of things do they test for?

I really know nothing about this.

Have just read a book about a woman who had NK cells and that is the extent of my knowledge.x

ICSI 1 Apr 08-m/c 9.5.8
FETJul 08-BFN
ICSI 2 Dec 08 (ES) -I'm a mummy Kaynan arrived 19.8.09! :heart:
ICSI 3 Dec 10 (ES) -BFN
FET Mar 11- BFP- M/C ;(
ICSI 4 (ES) -:BFP: 1.7.11 Cobi arrived 09.03.12 [zx160]
Egg donation Aug 2012 BFN for recipient- gutted
Egg donation Dec 2012 Recipient :BFP:
Egg donation 27.05.2013- not great - please pray for the recipient :dust:




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Friday, July 18th 2008, 9:32am

Hello

Jess - I know with prednisalone and any steroids the list of side effects is extensive. I found when I have previously taken them they made me extremley bloated and I did in fact put on quite a bit of weight (probably due to the fact that my appetitie increased and I did eat more). So it could be the steroids. If you are worried you should give your consultant / nurse a call just to check it out.

Gemma B - I will work on something this weekend and post here next week showing what tests they cover other than NK Cells. It seems that most people only know of NK Cells. I had these tested over here over a year ago and was told that they were fine. However when I had the NK Assay test done (covers different types of NK Cells) it showed that mine were in fact raised and have an aggressive killing power.

x
TTC naturally, five miscarriages 2006-2009, Immune issues

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Friday, July 18th 2008, 9:37am

I took prednislone for six months a few years back (not for ttc but whilst i was waiting for a course of radiotherapy) and i put on weight too. Like Blondie, it gave me a huge appetite.




ICSI May 08 - BFP
Our beautiful baby girl was born February 2009
Jan 2010 natural BFP M/C 9 weeks
May 2011 - BFP
Baby boy born Jan 2012




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Friday, July 18th 2008, 9:56am

Thanks Michelle and Blondie.

Have spoken to the nurse now and she thinks the af type pain is prob due to the progynova i'm taking, apparently it can give af type pains to some people. She said i can take paracetamol.
I have only been on the prednisolone for 5 days but i have also been feeling hungrier than usual. I'm really going to have to watch what i eat or i'm going to be a bloater in 2 weeks time. Already feel fatter from the cyclogest!

Thanks again x

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10

Friday, July 18th 2008, 10:18am

That was my mistake with the prednisalone I just ate so much more, it does increase your appetite.

I am paying for it now mind you, I am having to exercise like mad trying to get it back off :D
TTC naturally, five miscarriages 2006-2009, Immune issues

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11

Friday, July 18th 2008, 10:25am

found this old thread this morning:

Immune Issues and Infertiltiy


me 38, DP 44, ttc since 2005
BFP May 07 - HB seen @ 8 wks but CRL only 7 weeks, m/c @ 9 wks
BFP Jan 08 -m/c @ 11 wks (D&C)
BFP Jun 08 - early loss
BFP Dec 08 - HB & CRL ok @ 8 wks, but sac too small, m/c @ 9 wks
BFP Apr 09 - Martha born 9th Jan 2010
BFP Feb 12 - Eliza born 13th Oct 2012

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12

Friday, July 18th 2008, 10:27am

Great Jen :D
TTC naturally, five miscarriages 2006-2009, Immune issues

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13

Sunday, July 20th 2008, 1:51pm

http://www.rcog.org.uk/index.asp?PageID=542

i have been looking into this alot and have read many, many books

i have posted this link,

i received the older paper in a info pack from care in nottingham

i have decided against immune testing as i feel im on steriods and clexane already and certainly do not feel ready for a 10k cycle of ivf just yet, never say never but i feel at this time, 2 or more cycles of ivf would be of more benefit to us over one highly expensive and contreversal cycle
TTC 12 years

2 early losses

lots of ops and tx

both tubes removed

5th fresh short protocol
:BFP:

Tyler May born 5/5/2010 by emergency c section. Tyler is our sunshine

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14

Sunday, July 20th 2008, 2:42pm

Hi Kar1, interesting reading! I've also read lots, as you do when you are desperate for answers.
Whats your next plan, if you don't mind me asking. If this, my 5th go, is bfn i'm not sure what we'll do next. We've spent so much money chasing our dream, but im just not ready to give up yet.

Enjoy your Sunday x

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15

Tuesday, July 29th 2008, 9:38am

here's another thread anyone chatting on here may find interesting:

Natural Killer Cells and IVIg therapy where?


me 38, DP 44, ttc since 2005
BFP May 07 - HB seen @ 8 wks but CRL only 7 weeks, m/c @ 9 wks
BFP Jan 08 -m/c @ 11 wks (D&C)
BFP Jun 08 - early loss
BFP Dec 08 - HB & CRL ok @ 8 wks, but sac too small, m/c @ 9 wks
BFP Apr 09 - Martha born 9th Jan 2010
BFP Feb 12 - Eliza born 13th Oct 2012

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16

Tuesday, July 29th 2008, 10:02am

Morning everyone :D

I have put together some information on some of the more in depth immune tests that are offered, I think Eeyore is working on it :D

I have my consultation this Friday, we have had our results for over two weeks and I have analysed them to the death, am convinced that I know what treatment they are going to suggest...its been in mind so much that every night for the last 4 nights I have dreamt about it...its doing my head in X( but we are nearly there...

You know its amazing what has come up, I will explain more after the consultation in case I have it wrong. But I thank God that these tests were available and we have some answers and possible treatments.

I only hope it won't cost the earth

x
TTC naturally, five miscarriages 2006-2009, Immune issues

BLONDIE'S IMMUNOLOGY DIARY

kar1

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17

Tuesday, July 29th 2008, 10:46am

good luck for your appointment hun

you thinking IVIG? i hear that it all works in precentages of what will bringing nk cell levels down
TTC 12 years

2 early losses

lots of ops and tx

both tubes removed

5th fresh short protocol
:BFP:

Tyler May born 5/5/2010 by emergency c section. Tyler is our sunshine

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18

Tuesday, July 29th 2008, 11:04am

Wishing you luck blondie - hope you get some answers x

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Tuesday, July 29th 2008, 11:52am

Thank you Jess blowkiss

Kar - Yes IVIG is the most expensive treatment, around £1200 a pop and the average person has 2 or 3 but you can never be sure of how many you will need as it will depend on what it does for your NK Levels, usually this is timed with IVF as well and we are trying naturally.... I am not sure whether we need this, I have high NK but they are not sky high and I am hoping that they will suggest another steroid other than prednisalone that I could try....I believe we will need for sure LIT and me and my husband are a match and this is supposed to deal with that...means we will probably have to travel to Athens as doctor over there follows Beer protocol...

Oh roll on Friday :D
TTC naturally, five miscarriages 2006-2009, Immune issues

BLONDIE'S IMMUNOLOGY DIARY

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20

Tuesday, July 29th 2008, 11:56am

dexamethasone isn;t that the steriod dr beer likes?
TTC 12 years

2 early losses

lots of ops and tx

both tubes removed

5th fresh short protocol
:BFP:

Tyler May born 5/5/2010 by emergency c section. Tyler is our sunshine

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21

Tuesday, July 29th 2008, 11:56am

ferring at home do IVIG hun, maybe its a little cheaper im not sure.
TTC 12 years

2 early losses

lots of ops and tx

both tubes removed

5th fresh short protocol
:BFP:

Tyler May born 5/5/2010 by emergency c section. Tyler is our sunshine

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22

Tuesday, July 29th 2008, 12:05pm

Will google Ferring at home, thank you.

Yes I think that is one of the steroids he suggests. I actually hope I wouldn't need to take them at all, I put on so much weight the last time, it wasn't a good experience.
TTC naturally, five miscarriages 2006-2009, Immune issues

BLONDIE'S IMMUNOLOGY DIARY

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Tuesday, July 29th 2008, 12:10pm

Good luck for Friday Blondie - i really hope it gives you some answers!




ICSI May 08 - BFP
Our beautiful baby girl was born February 2009
Jan 2010 natural BFP M/C 9 weeks
May 2011 - BFP
Baby boy born Jan 2012




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Tuesday, July 29th 2008, 1:43pm

Thanks Michelle :D
TTC naturally, five miscarriages 2006-2009, Immune issues

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kar1

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Thursday, July 31st 2008, 10:45pm

good luck with your appointment tomorrow

i have decided every though im am not a true believe to make an appointment to have a endo biospy for uNK cells
TTC 12 years

2 early losses

lots of ops and tx

both tubes removed

5th fresh short protocol
:BFP:

Tyler May born 5/5/2010 by emergency c section. Tyler is our sunshine

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26

Friday, August 1st 2008, 4:01pm

Thanks Kar - God I am feeling really anxious...need to call them in one hour...

I think there's no harm in you getting the test done...if anyone it will give you peace of mind :D
TTC naturally, five miscarriages 2006-2009, Immune issues

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27

Friday, August 1st 2008, 4:09pm

how long will the call be?

i will be having my biopsy in september
TTC 12 years

2 early losses

lots of ops and tx

both tubes removed

5th fresh short protocol
:BFP:

Tyler May born 5/5/2010 by emergency c section. Tyler is our sunshine

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28

Friday, August 1st 2008, 4:21pm

will look forward to reading about your results Blondie - good luck !


me 38, DP 44, ttc since 2005
BFP May 07 - HB seen @ 8 wks but CRL only 7 weeks, m/c @ 9 wks
BFP Jan 08 -m/c @ 11 wks (D&C)
BFP Jun 08 - early loss
BFP Dec 08 - HB & CRL ok @ 8 wks, but sac too small, m/c @ 9 wks
BFP Apr 09 - Martha born 9th Jan 2010
BFP Feb 12 - Eliza born 13th Oct 2012

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29

Saturday, August 2nd 2008, 12:16pm

blondie

how did it go?
TTC 12 years

2 early losses

lots of ops and tx

both tubes removed

5th fresh short protocol
:BFP:

Tyler May born 5/5/2010 by emergency c section. Tyler is our sunshine

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30

Saturday, August 2nd 2008, 8:55pm

Hi Blondie,
how are you, just wondering if you had any news?

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Sunday, August 3rd 2008, 11:51am

Hope the call went well Blondie.




ICSI May 08 - BFP
Our beautiful baby girl was born February 2009
Jan 2010 natural BFP M/C 9 weeks
May 2011 - BFP
Baby boy born Jan 2012




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32

Sunday, August 3rd 2008, 7:22pm

Hope the call went well too Blondie...have been keeping an eye on this thread...i find it very interesting indeed!!

2nd IVF :BFP:

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33

Monday, August 4th 2008, 5:53pm

Any news Blondie?? No pressure - :snigger: - but we're all really interested xxx


me 38, DP 44, ttc since 2005
BFP May 07 - HB seen @ 8 wks but CRL only 7 weeks, m/c @ 9 wks
BFP Jan 08 -m/c @ 11 wks (D&C)
BFP Jun 08 - early loss
BFP Dec 08 - HB & CRL ok @ 8 wks, but sac too small, m/c @ 9 wks
BFP Apr 09 - Martha born 9th Jan 2010
BFP Feb 12 - Eliza born 13th Oct 2012

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34

Tuesday, August 5th 2008, 8:39am

Morning Ladies :D

Have had a really busy weekend and had no time to go online. Then took yesterday off work and slept most of the day. Have been feeling so stressed and emotional think I needed it.

I will come back on in a couple of hours and tell the whole story :sadface: its not all sad but bit of a shock really.

xx
TTC naturally, five miscarriages 2006-2009, Immune issues

BLONDIE'S IMMUNOLOGY DIARY

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35

Tuesday, August 5th 2008, 9:38am

Oh Blondie, I'm sorry to hear this.
You take your time sweetheart......hoping we can help you in some way xx


me 38, DP 44, ttc since 2005
BFP May 07 - HB seen @ 8 wks but CRL only 7 weeks, m/c @ 9 wks
BFP Jan 08 -m/c @ 11 wks (D&C)
BFP Jun 08 - early loss
BFP Dec 08 - HB & CRL ok @ 8 wks, but sac too small, m/c @ 9 wks
BFP Apr 09 - Martha born 9th Jan 2010
BFP Feb 12 - Eliza born 13th Oct 2012

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36

Tuesday, August 5th 2008, 9:56am

hunni

i so hope they can treat what they have found
TTC 12 years

2 early losses

lots of ops and tx

both tubes removed

5th fresh short protocol
:BFP:

Tyler May born 5/5/2010 by emergency c section. Tyler is our sunshine

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Tuesday, August 5th 2008, 11:24am

Oh hunni, i really hope you are ok :hugs:




ICSI May 08 - BFP
Our beautiful baby girl was born February 2009
Jan 2010 natural BFP M/C 9 weeks
May 2011 - BFP
Baby boy born Jan 2012




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38

Tuesday, August 5th 2008, 7:43pm

Thinking of you hun, really hope you are ok x

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39

Tuesday, August 5th 2008, 7:47pm

for all you ladies who haven't seen it, Blondie has posted her results here:

Results of Immune Tests


me 38, DP 44, ttc since 2005
BFP May 07 - HB seen @ 8 wks but CRL only 7 weeks, m/c @ 9 wks
BFP Jan 08 -m/c @ 11 wks (D&C)
BFP Jun 08 - early loss
BFP Dec 08 - HB & CRL ok @ 8 wks, but sac too small, m/c @ 9 wks
BFP Apr 09 - Martha born 9th Jan 2010
BFP Feb 12 - Eliza born 13th Oct 2012

Posts: 2,644

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40

Saturday, August 9th 2008, 5:40pm

Hi Ladies

A little update on me, my and DH have been talking for the last week trying to sort out what we are going to do and when...its a lot of drugs and a lot of money but we are going to go ahead with what they are recommending us to do.

First step is the LIT, this is where they take a pint of blood from DH and do something with it in their labs, I believe take out his white blood cells and clean them, and then they inject them into me. This apparently should make my body respond to them and I then should make the antibodies you need to have when you are pregnant that protects the fetus...The only consultant that does that treatment here is Paul Armstrong at the Portland Hospital in London so we are going to see him for an initial consultation next Friday. Before we can have this treatment we have to yet more blood tests...I think they screen DH for HIV and other infectious diseases to make sure he can't give me any lergies :P

We will also have to get the second treatment which is two injections of a drug called Humira to help lower some nasty cells in my body that are too high, the same cells that are related to the autoimmune disease athritis...Hoping Paul Armstrong will give us a UK prescription (can't use the Alan Beer USA one here). I have had painful joints in my hands for the last few months (apparently this can be normal after a failed pregnancy as these cells flare up) so these injections should get rid of those as well as lowering these cells.

I will also start to take anti-depressants :sadface: apparently my levels are not totally out of range of normal but my serotonin is low and this will help bring them up. Serontonin helps the uterus become nice and thick so plays a part in implantation and miscarriage. Apparently I can stop them when I do conceive or if I choose to carry on, depends on how I feel. I may start taking them and feel alot more like my usual self as I have felt pretty low the last couple of months.

But beginning to feel a bit more positive now we are on a road as such :D just need to go and find a credit card with nice large limit and no interest to pay for oh perhaps 3 years!

xx
TTC naturally, five miscarriages 2006-2009, Immune issues

BLONDIE'S IMMUNOLOGY DIARY

gemmab

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41

Saturday, August 9th 2008, 6:28pm

Hi Blondie- glad things are moving on for you.

The tests you are having sound really interested.

Keep us posted about the procedures and the outcome.x

babydust

ICSI 1 Apr 08-m/c 9.5.8
FETJul 08-BFN
ICSI 2 Dec 08 (ES) -I'm a mummy Kaynan arrived 19.8.09! :heart:
ICSI 3 Dec 10 (ES) -BFN
FET Mar 11- BFP- M/C ;(
ICSI 4 (ES) -:BFP: 1.7.11 Cobi arrived 09.03.12 [zx160]
Egg donation Aug 2012 BFN for recipient- gutted
Egg donation Dec 2012 Recipient :BFP:
Egg donation 27.05.2013- not great - please pray for the recipient :dust:




kar1

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42

Saturday, August 9th 2008, 6:54pm

good for you deciding to go for it

yeah its expensive but hey if you get your baby, who will care about the money

good luck and i hope the portland can help you
TTC 12 years

2 early losses

lots of ops and tx

both tubes removed

5th fresh short protocol
:BFP:

Tyler May born 5/5/2010 by emergency c section. Tyler is our sunshine

Posts: 494

Reg: May 20th 2007

Location: London

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43

Saturday, August 9th 2008, 8:05pm

Wishing you lots of luck on your new journey x

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44

Tuesday, August 12th 2008, 11:37am

Thanks blowkiss

Will let you know how I get on with Paul Armstrong on Friday.

xx
TTC naturally, five miscarriages 2006-2009, Immune issues

BLONDIE'S IMMUNOLOGY DIARY

Lisey

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45

Sunday, August 24th 2008, 6:16pm

Hi

Hi there, I'm new here. I've got no idea how to work this site!!!
Can anyone tell me how to add immunology groups to my profile/ save it.

I have joined this site so I can talk to people in a similar situation, find out how they are progressing and help anyone if I can my sharing my experiences and information.

Please message me, im shy!
Lisey X

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46

Sunday, August 24th 2008, 6:35pm

Welcome to :FZ: Lisey

I am so very sorry for your losses.

To add this thread to your favourites, go to the top of this page, at the right hand side just under where it says >>Hello Lisey [Logout] it says Add Thread to Favourites click on that and its done. :smile:

I hope you like it on here, we have very friendly and supportive members that are sure to make your TTC journey that little bit easier, I hope you feel right at home with us all soon.

Here are some links that you may find useful.

There is an abbreviations section HERE so you know what we're all going on about.

There is a getting started on fertilityzone thread HERE this contains everything you need to know about getting started on FZ and a few guidelines too.

There is a how to search section HERE so you can get the maximum benefit for the forum.

If you have any questions about anything, just ask. :smile:

Wishing you all the luck in the world with your TTC journey, I hope you don't have to wait long to get your sticky BFP!!

blowkiss


Angel baby April 07, Angel baby December 07, DD1 August 09, DD2 March 11, DD3 October 13

Lisey

Newbie

Posts: 58

Reg: Aug 24th 2008

Location: Kent

Children: 11 babies in heaven

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47

Sunday, August 24th 2008, 7:53pm

Thanks

Oh,thanks so much for messaging me! That info was really useful.

So do I just click on reply to post a general message?
I was wondering if anyone on here has had Humira at the ARGC?
Or suffer from implantation failure?

Many thanks again
Lisey X

kar1

MEMBER

  • "kar1" is no longer a member of FZ

Posts: 12,831

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48

Sunday, August 24th 2008, 9:06pm

i am suffering implantion failure, why i do not know

ive tried clexane and steriod but nothing so i am now heading to liverpool for a uNK CELL endo biospy
TTC 12 years

2 early losses

lots of ops and tx

both tubes removed

5th fresh short protocol
:BFP:

Tyler May born 5/5/2010 by emergency c section. Tyler is our sunshine

Polly Pocket

GLOBAL MODERATOR

    United Kingdom

Posts: 15,304

Reg: Sep 24th 2006

Location: Up to my armpits in ironing

Children: Three gorgeous daughters!

Thanks: 99 / 90

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49

Sunday, August 24th 2008, 10:01pm

RE: Thanks

Quoted

Originally posted by Lisey
So do I just click on reply to post a general message?


Yes you can do, if you are in the thread you want to post in or you can scroll to the bottom of the page where you'll find the same box you type in.

xxx


Angel baby April 07, Angel baby December 07, DD1 August 09, DD2 March 11, DD3 October 13

Lisey

Newbie

Posts: 58

Reg: Aug 24th 2008

Location: Kent

Children: 11 babies in heaven

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50

Sunday, August 24th 2008, 10:18pm

Thanks PP!

Hi Kar1!! Sorry to hear that, it's so difficult to deal with isn't it?

They generally don't bother with the biopsy if you have raised NK cells
in your blood. Do you have to pay for the biopsy?

I had hugely raised NK & other cells and needed anti-TNF therapy called Humira.
You may need this too.

If you have uNK's have they said how they will treat this?

I believe the ARGC in London is the only place where they treat with Humira,
that's where i'm treated. The NHS do not support or recognise this treatment.
Lisey X




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