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Discussion Starter · #1 ·
:eek: :eek:
My husband and I have had 5 attempts (ICSI) over the last 2.5 years and still know joy. Recently we moved to the ARGC in London and had the fifth attempt which failed. But unlike in the past they didnt say 'oh lets try again'. They took loads of blood tests and a biopsy and we have since found that I have a huge amount of killer cells destroying every embryo that enters my body. My husbands DNA is to close to mine (1/200 couples have this problem) and all the attempts would never have come to anything. The reason I am posting is THERE IS A CURE. So anyone who keeps failing IVF make like to know that a Dr Beer in the USA has helped 68% of patients with immune problems to conceive- and a large proportion of these were natural conceptions. I hope this helps and encourages you not to give up. If anyone wants to chat please feel free to message me. I am just about to start my immune meds before a cycle in October.
Good luck everyone of you. Helenx ;D
 

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Helen,

Really am pleased that you have both found out what the problem has been it must be a relief for you both.

I just wanted to wish you both all the luck in the world.

Lainex
 

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Hi Helen,

I'm glad you have found a reason, even if it has taken 5 attempts to get to this point!!


We have unexplained IF and I've had two IUIs, and IVF and a FET, all negative. My consultant, I feel, is very up with new treatments and he now wants to refer me to St Mary's for a "barrage of blood tests" to test for the natural killer cells. Apparently there is a very fine line between recurrent miscarriage and unexplained IF and because we had no trouble with fertilisation in the IVF, he feels there could be another reason and it's worth investigating. We feel very lucky to have Mr Lower as we really feel that he knows what he's talking about and tries to keep up with all the latest information. Maybe more clinics should test people for nk cells, it could save a lot of time and money!

Good luck to you anyway Helen!

Love Jen xxxxx
 

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Hi Helen

i am really pleased that they have at a last found a reason for you. You must be very pleased! ;D


I have now had 3 failed IVF attempts all times with grade 1 embryos but no implantatiion. Before the last attempt I also had this NK test done and have been told I have elevated levels at 26. So for the previous cycle I had Prednisolone and Clexane infections to help with the NK level. Unfortunatly this cycle has again been negative. I am interested to know what your level is and what meds you have been prescribed. I have read a bit about this Remicade treatment which I have been told I do not need. I am however very concerned to read about the side effects etc. Have you been advised to have this? If so are you worried about it at all?

This NK test seems to be in the 'in thing' at the moment although it is fantastic for you as they seem to have a clear picture on what the problems are you have.

Lots of luck for your next cycle, look forward to hearing from you

Love Lou xxx
 

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Hi Helen

Strange isn't it when you get told there's a reason WHY it hasn't worked. You're chuffed there is a reason and confused as to why they dont test earlier for this!

My original NK test was within normal levels, however the clinic I'm at (same as Lou) have just started testing for activated NK cells (CD69 count) and it appears mine are very active so we went through our last 2 cycles thinking we were clear of NK and we werent, so all 5 of our cycles have theoretically been a waste, HOWEVER, they have been a learning curve ;) What makes me mad is that some clinics "poo poo" these tests and some of the girls have to fight for them...... :-\

Hopefully next time - you, Lou and myself (and lots of others!) will make it past the NK rubbish and get our long awaited positive!

Jen - I hope you get some answers from your tests, good luck.

Love Sue
xxxxxxxx
 

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Dear All

I was wandering is it possible to get the NK test done independently or do you have to go through a clinic. I too am unexplained and feel that if we could at least find part of the reason why I can't pregnant my mind would rest a bit easier.

love & ^Cuddle^

Camilla
 

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Hi camilla

How are you?

I was told I had to have it donw as i was unexplained before any further IVF at The Lister.

Love Lou xxxx
 

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Hi girls
Hope you don't mind me adding to this thread (I'm a bit of an internet-nerd at the moment - have to keep my brain on positive actions at moment and not negative bad thoughts...) I'm sure you've all already seen it, but the webpage http://repro-med.net/index.php written by Alan Beer MD makes very interesting reading. The immune system is soooo complicated, but I managed to keep up with some of it. I am not sure whether he is a genius or a charlatan, but his site is very informative.
It may help?
Really pleased for you Helen that they have found a reason - may your dreams soon come true ^Cuddle^
Good luck all ^thumbsup^
Jakex
 

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Hi Helen
i am so pleased they have found a reason for your treatment not working.

Does having these mean you cant carry full term or get pg at all ?

I wish you luck for your next go, lets hope it will be a BFP next time ;D
Take care

Love and hugs
Jo
x x x
 

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Hi

Jake - I found Dr Beer's web site quite interesting when I was doing some research after our NK tests/results.

Camilla - my gp (who is supportive) doesn't really know about NK and antibody testing so gp's may not be the best place to start. The Lister do seem to be quite good on these tests. You should ask your clinic. However, here are some web sites for info:

http://www.conceivingconcepts.com/medical/immune1.html#NK

http://www.inciid.org/newsletter/oct/coulam.html

Lots of Love
Sue
xxxxx
 

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Discussion Starter · #11 ·
Hi SueL, Lou and everyone else.
sorry Ive only just replied - couldnt remember where Id posted ::).
Thanks for your kind words and hope that my post might have help some of you look into the NK thing. My drugs are coming over from America as apparently we dont have them here. The first one is called Himera and I start injecting it on Wednesday. Also I am going to be taking a drug called IVIg (not sure if thats the actual name or drug type) will let you know when I get it.
Jo - if my drugs work then yes I can get preg. and carry full term - apparently Dr Beer says he will only need to assist me to week 12 then my body will naturally take over.
My levels are really high (62%) which is why he is so clear what the problem is. I would suggest anyone wanting info go to his site at retro-med.net. Hope this helps. Love Helenxxx
 

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Hi Hopeful

loads of luck this time. I know a couple of girls who have succeeded on Ivig and there is lots of info on the CARE bulletin boards if you are interested at http://www.care-ivf.com/support/bulletinboard.htm

I have had the killer cell tests done in Chicago and have raised levels but will find out exact details on the 24th Sept. I suspect I will be on the Ivig too. Apparantly the himera drug is extremely new for using in IVF although I thought this was used instead of IVig as it is an injection rather than an infusion. There is another discussion group focussing on just this issue at http://groups.yahoo.com/group/immunologysupport/ and if you go to Investigations and Immunology on FF we could have a lot more discussions in this area.

loads of luck with cycle and I will be interested to know how you get on.

love oonagh x
 

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Discussion Starter · #13 ·
Hi Oonagh,
Thanks for the tips and thoughts. I think I have spoken with you on Care (my sign in is Pins and Needles!). Ill try and let you know how I go although I tend to jump in and out of this site. Good luck with the 24th Sept.
Helenx
 

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Hopeful Helen

I have left you a message on CARE as I have finally clicked who you are ;)

hope everything is going o.k

love oonagh x
 

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can someone please give me some advice as i'm having a bad weekend!! after after 2 grade 1 4 cell embryos implanted in me i tested negative on wednesday- I am 27 and so was my egg donor so this was quite a shock as everything went so well. on wednesday i stopped the patches and pesseries and then on saturday i started to bleed heavily and had really bad cramps I am still bleeding and not feeling too good. I managed to speak to an emergency doctor who said it sounds like a miscarriage as i shouldnt be bleeding.But why have i done 2 tests and they have been negative.please help as on my previous ivf try i didnt bleed like this.
 

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Helen.

Good luck on your new cycle.

Unfortunatley for us we have been trying for 10 years, been told by our GP and local hospital that there was nothing wrong with either of us and to keep trying. When we asked about my immune system the Consultant told us it was a myth. Three IVF cycles later and at the age of fourty it seems we have come almost to the end, with my last cycle only producing three eggs on the maximum dose of Puregon. It makes me angry to think that we may have had a chance had the Consultant taken our question seriously (we have never been tested so it may not have been my immune system causing the problem - but now we'll never know) and had us tested. To all you ladies out there who still have the chance don't allow this to happen to you.
 

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annex

sorry you feel like you have come to the end of the road. I really feel saddened when I see people not give the same opportunities as others. I keep focusing on a 39 year old friend of mine who after eight failed cycles moved to CARE Nottingham and is now pregnant. She was found to have immune issues and also had chromosone screening - had one "normal" embryo put back and voila! It gives us all hope.

Loads of luck with what you decide to do next.

love oonagh x
 

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Has anyone had any experience of immune investigations in Leeds? I'm about to start my third IUI and am on the waiting list for IVF but really don't want to go through IVF without having investigated all possible causes.

I am totally against the current hospital trend that you only have immune investigations after x failed IVF attempts. I can't see the point in all that heartache and cost when an initial investigation (which I am willing to pay for privately) could prevent it.

I intend to ask my consultant about getting tests as so far we are unexplained. If necessay I will travel for these tests and Nottingham isn't that far away.

Hannah
 

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Hannah

As far as I am aware the only two places that do the full immune investigations in this country are Nottingham CARE and the ARGC (or is is ARCG!) in London. Either that or you can consult with Dr Beer directly. Going directly to him would probably be your best option as you haven't had IVF yet. He deals with lots of women who can't conceive because of immune problems but not necessarily after failed IVF.

loads of luck

love oonagh x
 

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Do you attend Dr Beer's clinic? How much does it cost? Whats this NK test?

I've been under NHS @ Ipswich for 5-6 yrs now and nothing other that 1 x IVF has been done in last 2 years???

Zoe x
 
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