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miriam

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Reg: Nov 12th 2008

Location: England

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Thursday, April 14th 2011, 10:56am

Please help me interpret Level II results

Hi girls

Had most of my level II test results back from Dr Gorgy and tried to interpret what they mean.
Please could you all take a look and see what you think.

All my thrombophilias (MTHFR, factor V, etc) are negative.

Karytyping is normal for both me and DH.

NK Assay:


50:1 10.7 All are within limits
25:1 8.1
12.5:1 5.6
IgG 12.5 50:1 10.1
IgG 12.5 25:1 7.8
IgG 6.25 50:1 6.6
IgG 6.25 25:1 4.9

But he has highlighted the 50:1 results. Also highlighted 50:1 w/intralipid result - 13.3

These results seem fine to me, so why are they highlighted?

%CD3 88.1 Slightly high (limits 60-85)
%CD19 9.8 within limits
%CD56 1.9 slightly below limits (2-12)
% of CD19+ cells,CD5+ 13.3 Slightly high (limits 5-10) - wrote gestoneTwo results are slightly high - should I be worried about this?


TH1:TH2 intracellular cytokine ratios:


TNF-a:IL-10 19.5 These are within limits
IFN-g:IL-10 12.5


HLA-DQ Alpha:


Husband 1.3, 1.3
Me - still awaiting results - TDL lost my blood sample and I am still waiting for them to send me a blood kit to retest- so I guess it's be another 3 weeks before I have this result


LAD:

1.8 Negative
T-cells IgM+ 6.0
T-cells IgG+ 8.1 highlighted
B-cells IgM+ 14.5
B-cells IgG+ 12.0 highlighted

I know these are low, but how relevant are LAD they becasue my NK cells and cytokine ratio seem ok? Also, I am not too keen to have LIT, which I know can help increase the levels, would intralipids also have the same effect? Have women with low LAD concieved and carried to term?

Also, I haven't yet recieved my DQ-alpha result. Do these low LADs suggest we will have a match?The only problem I can see are low LAD, (until I know
my DQ result) - Is this correct? What do you think Mr G will recommend and will intralipids work for low LAD?

Also, I have read about women having a uterine biopsy to check for NK cells in the womb. Why is
this needed and do you think I need one?

I have had 3 ICSI failures in the past two years - no implantation. We have been TTC for 9 years and have only had 2 conceptions in that time about 4 years apart
(both natural), but had very early m/cs.

Other than that, we have been classed as having "unexplained fertility", my dh sperm is fine,
but we did not seem to get any fertilisation from IVF, so had to have ICSI. I have a bicornuate uterus but was told this should not affect
ttc, and early pg.

I am at a loss now as to what to do next, do you think immune treatment would help me? Any feedback and suggestions
would greatly be appreciated.

Thank you.

Miriam
Me 30 DH 36
TTC 9 yrs
Bicornuate uterus
2 m/c at 5 wks-natural
3 failed ICSIs-all BFN
Level I immunology tests-normal
Level II tests with Dr G

ruthie

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Thursday, April 14th 2011, 5:45pm

NK Assay:

50:1 10.7 All are within limits
25:1 8.1
12.5:1 5.6
IgG 12.5 50:1 10.1
IgG 12.5 25:1 7.8
IgG 6.25 50:1 6.6
IgG 6.25 25:1 4.9

But he has highlighted the 50:1 results. Also highlighted 50:1 w/intralipid result - 13.3

These results seem fine to me, so why are they highlighted?


The results are fine, ideally they like the NK assay to be below 15% killing power. The only thing I can pick up is that neither IVIG or intralipids seem to do very much, in the testtube. Ideally you should see a reduction in killing power when they are mixed with IVIG and intralipids, and you don't particularly. This may not be an issue, as the killing power of your NK cells is normal, but he may have felt it worthy of mention. Also we don't know how well the activity of these drugs in a test tube correlates to activity in the body.

%CD3 88.1 Slightly high (limits 60-85)
%CD19 9.8 within limits
%CD56 1.9 slightly below limits (2-12)
% of CD19+ cells,CD5+ 13.3 Slightly high (limits 5-10) - wrote gestoneTwo results are slightly high - should I be worried about this?



I have always had v slight NK elevations, though v v slight and have been told that steroids alone will sort those out. Some of the NK cell lines can produce antibodies to HCG and progesterone, hence why he is suggesting gestone support. It's nothing to worry about, most IVF patients get progesterone anyway, it's just annoying when it's gestone as the injections hurt!


LAD:

1.8 Negative
T-cells IgM+ 6.0
T-cells IgG+ 8.1 highlighted
B-cells IgM+ 14.5
B-cells IgG+ 12.0 highlighted

I know these are low, but how relevant are LAD they becasue my NK cells and cytokine ratio seem ok? Also, I am not too keen to have LIT, which I know can help increase the levels, would intralipids also have the same effect? Have women with low LAD concieved and carried to term?

Also, I haven't yet recieved my DQ-alpha result. Do these low LADs suggest we will have a match?The only problem I can see are low LAD, (until I know
my DQ result) - Is this correct? What do you think Mr G will recommend and will intralipids work for low LAD?



I don't know much about LAD so can't help much here. LIT is the only treatment shown to have a benefit for low LAD levels. There is no evidence that intralipids do anything for anything (as in proper clinical trials).
However, the low LAD doesn't necessarily mean you will have a DQ alpha match, and depending on whether you have a match, and what the match is, he will base treatment on that.
I'm guessing, from what I know of Dr G, that he will recommend LIT, as he seems to use a lot of different treatments, but if you don't want to have it he can probably suggest an alternative.

Also, I have read about women having a uterine biopsy to check for NK cells in the womb. Why is
this needed and do you think I need one?


The NK cell biopsy is done to see what the levels are in utero. It's not known whether high NK blood levels are significant. Biopsies seem to be done less nowadays, as blood tests are less invasive and can be done frequently for monitoring, but whether one is better than the other isn't known.

The problem is that on entering into reproductive immunology testing, you are going into an unproven field. Most of your questions can't be answered definitively, because the knowledge simply isn't there, not in any of us laymen, and not even in the doctors you see. There are far far too many unknowns. What the docs can tell you is their opinion, and it's opinion worth having as the immune docs tend to be at the top of their fields, but the evidence isn't there to give you proof.

The problem you have is that a few things are borderline, so you're trying to interpret borderline, incomplete results. I would wait for your DQ alpha, and then see what Dr G says. He will be able to advise you best, and he will know why he highlighted things as he did them!

What I would say is that these aren't awful immune results by any means. There are lots of normal things, and that's good news. The abnormal things are borderline, and hopefully can be treated with fewer drugs than some ladies end up having, which would be nice!

Hope that helps, let me know if you need more info.

xxxxx

Maria72

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Thursday, April 14th 2011, 6:31pm

Ruthie's answer is just fab, so I'm not going to add any more, just that as she said they don't ok that bad.
babydust

miriam

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Location: England

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Friday, April 15th 2011, 1:54pm

Thanks for the info - it was really helpful.

I guess I'll have to wait for my DQ Alphas, then see what Dr G says.
Do you know how much he charges for LIT? I've looked on his website but they only have prices for IVIG and intralipids. Did you see Mr G as well?
Me 30 DH 36
TTC 9 yrs
Bicornuate uterus
2 m/c at 5 wks-natural
3 failed ICSIs-all BFN
Level I immunology tests-normal
Level II tests with Dr G

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Posts: 330

Reg: Feb 18th 2011

Location: Italy

Children: Our miracle baby is on it's way!

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Friday, April 15th 2011, 8:55pm

Hi Miriam,

As Maria has said, Ruthie has answered really well (as always). I was surprised that they had lost your blood sample for the DQ Alpha! How annoying that you have to do it again and wait for the results. Are you waiting for the result before going to see Dr G?

For your low LAD, I would say that Dr G will definately recommend LIT. He is very much an advocate for LIT and I think he is one of the only docs in the UK who does it. If your DQ Alpha result comes back as a match with your DH's then you will have to have donor blood for your LIT. They will find a donor who will have all the infection screenings before giving his blood. If you are not a match then you can use your DH's blood (which will obviously be better). Your DH will still have to have all the infection screenings. They will take the blood from him the day before your LIT - it has to be done there and done within the past 30 days (this is very strict as there are legal issues which mean that if it's not done then they have to cancel your treatment by law!). The blood would then be taken from your DH or donor at 8pm on the morning of treatment and then is administered to you at 1 or 2pm.

The costs with Dr G are about £260 for the blood screening tests and then £750 for each injection (but you will usually need 2 injections so double that price). So obviously it is very expensive!!

I'm with Dr G for immune treatment and also have low LAD. At the moment he has a waiting list for LIT anyway. So if you want to go on the waiting list, the receptionist will put you on it. But I know that you won't get an appointment until May or June now. I'm actually at the top of the waiting list!!

I have been trying to find some feedback from anyone who has had LIT on here and I started a thread asking for positive or negative feedback from anyone who's had it or is thinking of having it - but I had zero answers!!! It's a difficult treatment to decide on whether to have or not. I understand your reservations. If you ask Dr G for an alternative to LIT I'd be really interested to hear what he says (let me know-thanks). xx

AMH 8.4 (me=36). 6 cycles clomid. Immune issues.
1st IVF cycle April 11 - canx due to endo cyst.
2nd IVF cycle with immune meds May 11 :BFP: [zx076] seen 5wk5d, 8wk5d, 12wk
"There can be miracles when you believe"
My diary


Rii

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Saturday, April 16th 2011, 12:33am

Hi ladies,

Sorry this is so late. I had LIT with Dr. Gorgy twice. I was lucky me and my DH were not a match so we used his blood. I had LIT twice, 3 weeks apart and then go retest after 3 weeks and that is all i needed. My LAD changed from negative to positive. Unfortunately i have several immune issues. My last cycle was a BFN but it was my first immune cycle. If you have LAD negative Dr. G will recommend LIT for sure.

Postives: IT did help change my LAD results.

Negative: Sorry you don't want to hear this but i wish someone told me, it is the worst pain i have ever experienced. It does not last long maybe a two minutes on each arm but it feels like a burning stinging sharp needle....not anything like a simple injection. But he will repeat it on your arm several times. The only side effect i had was a minor rash for about two weeks.

I will post a very good link from fertility friends that explains immune issues and LIT in detail.

Immune FAQ - Continuously updated and added to.,IVF, IVF forums, infertility forum, infertility support forum, IVF SUPPORT FORUM, ICSI forum, DI forum, Egg share forum, infertility books,IVF Forums, infertility support forums, infertility books, Miscarriage forums, parenting after ivf forums, forums for fertility, forums for infertility, Online IVF support, Websites about IVF, IVF professional support, IVF moderated forums, IVF counsellor moderated forums, IVF forum, ICSI forum, IVF chat, ICSI chat, IUI forums, IUI chat, Surrogacy forums, forums for donor sperm, donor egg forums, egg sharing forums

Below is lots of info on LIT from the link above that i copied and pasted.

I hope this helps, if you have any other questions please PM anytime.

Good luck...xoxo


13.1 LAD test
13.1.1.1 What is the LAD (Lymphocyte Antibody Detection ) test?
LAD measures the level of anti-paternal blocking antibodies in your blood. A sample of serum from your blood is mixed with a sample of live white cells (T and B cells) from your partner (or sperm donor – if using known donor). Where antibodies are present in your blood they will bind to your partner’s white cells and the percentage which have been ‘tagged’ in this way can be measured using flow cytometry.

The LAD test cannot be performed with just the host mother’s blood – it needs to use the mother’s blood (regardless of whether she is using donor eggs or not) AND fresh blood from whoever is providing the sperm. If the sperm donor cannot provide blood, you can perform the LAD test with, say, the partner’s blood – but it may not be a meaningful result, because it won’t tell you whether the mother’s body is specifically hospitable to an embryo containing the sperm donor’s DNA or not.

The results are reported for IgG and IgM antibodies for both T and B cells as percentage. For RFU Chicago, if the average of the 4 measurements is above 30%, the overall result will be recorded as positive and if its lower than this, it will be recorded as negative.

IgM is usually seen as an ‘early antibody’ which reflects the body’s initial response to an antigen (foreign protein) whereas IgG takes over as a more ‘mature’ response to a particular antibody. This is presumably why IgG is seen as a more important measurement that IgM.

Dr Beer said that the B cell IgG measurement was more important than the other measurements. He said ladies should be aiming for B cells IgG to be over 30% and preferably over 50%. It is possible to have excellent B cell IgG measurements but still get a ‘negative’ overall result if, say, your T cell measurements are low.

In your body, NK cells as constantly on patrol against viruses and pre-cancerous cells. Viruses are recognised as being ‘foreign’ and ‘hostile’, pre-cancerous cells are recognised as being ‘self’ but ‘altered’. NK cells are programmed to attack both of these classes to protect the body from viruses and cancer.

As half the embryo’s DNA comes from the mother, the theory is that if the body cannot recognise the father’s DNA, it will treat the embryonic cells as ‘altered self’ and trigger an aggressive NK response which will increase NK numbers, NK activity and/or TNFalpha levels. High levels of anti-paternal antibodies should mean that the body recognises embryonic cells as ‘foreign’ but ‘benign’. Low levels of anti-paternal antibodies are associated with repeat miscarriages (which are believed to be the result of NK and TNFalpha responses to embryonic cells), and are also thought to be associated with repeated failed implantations.

Low LAD is usually treated with LIT (see below).

Example results:
Leukocyte Antibody Detection

Flowcytometry negative
(T-cells) IgM+ 12.2 % this is low – but probably the least important measurement
(T-cells) IgG+ 2.4 % this is low – but not quite as important as the B cell figures
(B-cells) IgM+ 12.9 % if you are part-way through a course of LIT, a high number here may eventually increase your B cells IgG+
(B-cells) IgG+ 11.1 % this is low


13.5 LIT
13.5.1 What is LIT (Lymphocyte Immune Therapy)?
LIT is an injection of washed white cells which is normally placed just into the skin on the inner arm in a series of pinprick jabs. The white cells usually come from blood freshly donated by your partner (or donor, see below). The aim of LIT is to stimulate your body to produce anti-paternal blocking antibodies (antibodies to cells from your partner) as measured on the LAD test (see above). Several studies found that women who had multiple miscarriages tended to have lower levels of anti-paternal blocking antibodies than women who had successfully carried a baby to term. This lead to the theory that antibodies to the father’s DNA were necessary to help the mother’s body recognise their embryo’s cells to give a protective response rather than an aggressive response.

The cells that are expected to be responsible for the aggressive response are NK cells, particularly uterine NK cells. Everyone has a population of NK cells in their body which are ready to deal with cancerous cells and viruses. The problem for trying to conceive and carry a baby to term arise when these cells are too aggressive or the body fails to identify embryonic cells as harmless. Dr Beer’s theory was that repeated exposure to embryonic cells (by failed implantation or failed pregnancy) when anti-paternal antibodies are low was likely to lead to increasing NK cell activation and higher levels of TNFa both of which make the conditions for an embryo to implant and grow into a healthy baby very difficult. The aim of LIT is to expose the mother’s immune system to the father’s DQa markers (using injections of white cells from him or from a donor) in a way that is less likely to be treated as a threat by the mother’s immune system, to prompt her body into increasing her anti-paternal antibody level, so that the next time an embryo is introduced, it is recognised and protected rather than attacked.

13.5.2 Why is LIT controversial?
Any transfusion of blood products carries some risk (although, for paternal LIT, if you are having IVF with your partner’s sperm you will be exposed to a very similar risk during the IVF and resultant pregnancy because viruses can be transmitted via sperm and embryos). All doctors who perform LIT will insist that the partner (or other blood donor) is screened for infectious viruses e.g., HIV and Hepatitis etc.

Where you provide the donor, you can make sure that the screening tests are done, but where you pay a doctor to give you blood from an unknown donor, obviously you are taking it on trust that the doctor has chosen the donor from a low risk group (not a drug addict etc) and has carefully screened them by insisting on regular blood tests – bearing in mind that the incubation time for viruses like HIV is up to three months.

Whenever you have any treatment involving puncturing the skin, you are also taking it on trust that the doctor has adequate training and procedures to ensure their equipment is sterile. There is also a potential risk with any blood product of some very rare but serious side effects like graft versus host disease (but most LIT doctors say that these side effects are theoretical because they have not actually encountered them when doing LIT).

In the US, LIT was banned several years ago because of the risk of infection and because of a large study (the Ober study) that showed no benefit from giving LIT in reducing miscarriage rates. However, advocates of LIT including Dr Beer said that the Ober study was not done correctly, e.g., the blood was refrigerated before use, and women with untreated thrombophilias were included in the study. Other studies have shown a significant improvement in miscarriage rates for ladies who have LIT. Ladies who want LIT in the US now tend to travel to Nogales in Mexico to have their LIT treatment.

13.5.3 What are the alternatives to LIT?
You could decide to try other immune treatments first and only think about LIT if that doesn’t work, but its possible that you might need a greater number of IVIG/intralipid drips to try and manage any flares in your NKs or TNFa, and particularly if you have a DQa matching issue, you could find that further failed pregnancies sensitise your body more to produce more TNFa and a higher NKa.

You could stick to paternal LIT to minimise any infection risk to you.

13.5.4 Do I have to have LIT? Will I get pregnant/stay pregnant without it?
The total number of ladies having LIT around the world is still very small. Presumably, the number of ladies with low LAD numbers is fairly large, yet, we assume that a lot of them will get pregnant/stay pregnant. In the studies of multiple miscarriages, it has been shown that these ladies tend to have lower LAD numbers than ladies who stay pregnant, but it does not mean that ladies with low LAD will never pregnant. LIT is an option but its up to you whether you want to try that route. Its very possible you will be able to get pregnant and stay pregnant without it, but some studies (not all) have shown a very great improvement (a doubling of the chances of a live birth) in ladies who have paternal LIT.

13.5.5 Which immune doctors support LIT? Who doesn’t promote it? (see below for where you can have LIT performed)
Dr Gorgy at the Fertility and Gynaecology Academy in London currently recommends LIT to his patients who have low LAD and/or DQa matches.

Dr Armstrong at the Portland recommends LIT to his patients who have low LAD and multiple miscarriages.

Dr Ndukwe at Care in Nottingham will refer patients for LIT if they request it.

Dr Sher at SIRM in the US does not refer patients for LIT.

The Beer Centre in the US refer patients for LIT to Nogales (or Athens).

Penny at Serum in Athens recommends LIT but only to a particular group of patients - patients with low LAD who have had repeat miscarriage or who have immune issues and a low LAD despite previous pregnancy.

I don’t believe the ARGC recommend LIT.

I think very few IVF clinics in the UK are aware of or support LIT.

13.5.6 How do I decide whether to have paternal or donor LIT?
There is no simple answer but things to bear in mind are:
1) In studies, paternal LIT has been associated with higher success rates than random donor LIT.
2) If you have significant DQa matches with your partner, it is more likely (but not impossible) that your body might have a lesser response to paternal LIT, so donor LIT (especially pooled donor where you are given white cells from more than one donor mixed together) might provide more stimulation – but even so, paternal LIT might still be effective or even better than donor – you cannot know until you try LIT and then retest LAD.
3) Can the clinic provide you with a donor that is likely to give you the maximum benefit? If you have no DQa matches with your partner, then theoretically, your partner should be the best donor for you (and if you choose to have donor LIT in a no-match situation, you would probably want a donor who has the same DQa as your partner. Depending how unusual his DQa is, it might be hard to find an ideal donor. If you have a partial match, it is possible that the best donor for you would be someone who shares one of your partner’s numbers (the one that is different from yours), but not the one that matches you. If you have a significant match with your partner (e.g., (1.1, 1.1)you, (1.1,1.1)him or (1.1, 1.2)you, (1.1, 1.1)him or (1.1, 1.2), (1.1, 1.2) the ideal donor would probably be someone who has DQas which are anything other than yours and his. It is probably easier to find a donor who does not have a specific DQa rather than to find a donor who has it. So finding a donor in a total match situation is probably easier than trying to find a matched donor, just because the population of unmatched people will be higher than the population that matches.
4) Paternal LIT is theoretically safer because you won’t be exposed to any viruses that you aren’t being exposed to already through other fertility treatment with your partner. If you decide to have LIT when you are already pregnant, you might particularly want to stick with paternal LIT for safety.
5) In a sperm donor, double donor or embryo donation situation, having pooled donor LIT might be the best way of ‘hedging your bets’ as you are unlikely to know the DQa of the father.
6) Donor LIT is sometimes cheaper if the donor’s screening tests are included in the price, and your partner doesn’t have to travel with you for the LIT.
7) Not all clinics have access to blood donors for LIT.

13.5.7 What is pooled donor LIT?
White cells from the blood of more than one donor at a time is called pooled donor LIT. Pooled donor LIT is sometimes referred to as double or triple donor.

13.5.8 How long does LIT last?
Dr Tsagaris says it usually lasts 6 to 9 months, which should be long enough to have 1 or 2 IVF cycles and to establish the pregnancy to the point at which LIT is no longer needed. However, many ladies decide to have their LAD retested if they get a positive pregnancy test so they can decide whether to have a ‘booster’ shot of LIT in early pregnancy.

13.5.9 I still don’t understand LIT or donor LIT?
You can try this analogy: Imagine you were a tiny bit allergic to peanuts but for some reason you wanted to make yourself more allergic. That is, you wanted to have more antibodies in your blood to peanuts (you want to have anti-paternal antibodies so that your body is ‘trained’ to recognise your partner’s DNA – so it can protect an embryo that carries it rather than attacking it).

Having a shot of LIT is like eating some peanuts to try to increase your peanut allergy by making peanut antibodies (anti-paternal antibodies). For some ladies, their body might ignore the peanuts (paternal LIT) and not react – it might be as though some of the peanuts are not even nuts, they just turn out to be peas (possibly, allele matches) and don’t increase their peanut antibodies (antipaternal antibodies). Those ladies might want to try eating a bag of walnuts (donor LIT) because nut allergies overlap so if you can increase your walnut antibodies, your peanut (antipaternal) antibodies will probably go up too. You are not interested in having walnut antibodies (because you don’t care about getting/staying pregnant with somebody else’s embryo), but if they make your peanut antibodies go up (antibodies to your partner’s cells) you’ll eat the walnuts. If you want to hedge your bets, you might try a bag of mixed nuts (pooled donor blood) to give you even more chance of finding a type of nut that elevates your peanut antibodies (antipaternal antibodies).

13.5.10 Would I still want LIT/LAD test if I am using egg donation?
Probably yes, if you are interested in having LIT. The immune risk arises from the match between the host mother and the embryo (so the host mother is still important). If your partner is going to be the embryo’s father, then it is just as important to have a blocking antibody response to his cells as if you were having own egg IVF.

13.5.11 Would I still want LIT/LAD test if I am using donor sperm?
It would be more difficult, but theoretically you could have it. Either you’d need to persuade the sperm donor to give his blood for the LAD test and for paternal LIT, or you could choose to have LIT with your partner as blood donor, or a third party donor, or pooled donor blood. However, if you had the LAD test, unless you have access to the sperm donor’s blood (or can find out his DQa and get a donor with the same DQa to stand in for him), you wouldn’t necessarily get meaningful measurements. You could test whether you have blocking antibodies to your partner (or your LIT donor)’s blood but you wouldn’t know for certain whether you have antibodies to the sperm donor’s blood (and he is the one who will be providing half the genetic material to the embryo – so its his cells that you would want your body to learn to recognise – because they represent half of the embryo’s markers). However, it is likely that if you have a good level of blocking antibodies to one person’s DQa, you also have a good level of antibodies capable of recognising other DQas.
ICSI 1-April 2010 BFN
ICSI 2-July 2010 BFN
ICSI 3-January 2011 Immune Cycle- BFN (Humira, LIT, Intralipids, IVIG, Clexane, Progesterone & Steroids)
ICSI 4- April 2011 Immune Cycle - Blessed with a :BFP:


Rii

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Children: Blessed with two miracles December 2011

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Saturday, April 16th 2011, 12:34am

13.5.16 Who can be a donor for LIT?
Theoretically, any healthy person (male or female, related or unrelated) can be a LIT donor but they must have the required screening tests and you would want to get their DQa tested to find out whether they would be likely to be a useful donor for you. For example, if you have been advised to try donor LIT because you have a lot of DQa matches with your partner, there would probably be little advantage in using a donor who had the same/very similar DQa as your partner (e.g., his sister), whereas if you are looking for a donor who has a similar DQa to your partner (say, because he can’t travel with you on the date you need LIT), his brother or sister, might be a good suggestion (because they might match him). Your parents, brother or sister probably would not be a good donor for you (as they would probably match you). Apparently, Dr Tsagaris does not permit one donor to give blood to two ladies at once (unless it’s a pooled mixture) because it needs too large a sample for one person to give. It might be possible to trade your partner’s blood with another lady’s partner who is having LIT on the same day if the DQas are advantageous to both of you and you are happy that the donor has been properly screened. As I understand it, it is this system that Dr Gorgy is using for donor LIT in London (i.e., he is finding couples whose partner’s have suitable DQa to ‘trade’ donor blood – as otherwise it may be difficult to find donors).

13.5.17 What screening tests does my partner (or donor) need?
The key tests (HIV, HTLV, Hep B, Hep C) are the same for all LIT providers, but they all have different requirements and their requirements have changed over time. It is best to get an up to date list from the provider or from someone who has just had their LIT. The 30 day rule for blood tests in the UK is a strict requirement. If you miss your LIT appointment through illness or some other reason and cannot have the LIT done before the blood tests expire, in the UK you will need to pay for all the infection tests again before you can have LIT (unless your GP will let you have them on the NHS). For Dr Gorgy and Clinicheck you are probably best to arrange the screening tests through them due to the 30 day rule and their own requirements.

This list is current as at Feb 2010 for Dr Tsagaris only (the comments have been added to help you – but they were not provided or checked by Dr Tsagaris):

1. HIV I+II - the virus that causes AIDS
2. CMV (IgM, IgG) = cytomegalovirus - a virus which can be hazardous if you are exposed to it for the first time at the start of/during pregnancy
3. EBV (IgM, IgG) = epstein barr virus - a virus which can be hazardous if you are exposed to it for the first time at the start of/during pregnancy, but its ok if your husband only has a past infection and not a current one as this is unlikely to be transmissible
4. HTLV = human T lymphocyte virus - a virus that can be like HIV
5. Anti-HAV (IgM+total) = antibodies to Hepatitis A - probably not so important as its normally transmitted by poor food hygiene and is rarely transmitted by blood products - past infection is very common, but not a problem for LIT
6. Anti-HCV = hepatitis C = a virus that can damage your liver
7. HBsAg = hepatitis B surface antigen = if positive it means active infection which would be transmissable to someone else through white blood cells (including LIT)
8. Anti-HBsAb = antibodies to hepatitis B surface antigen = if positive it either means you have been successfully vaccinated against Hep B, or you have previously had hepatitis B and recovered (this test might not be quite so useful as the other Hepatitis B tests for determining infection status)
9. Anti-HBcAb (IgM) antibodies to hepatitis B core = if positive it means you either have infectious hepatitis B now, or you have had it very recently (there is a similar test which measures total antibodies to hepatitis B core rather than only the IgM antibody - but that one only tells you that you've had hepatitis B in the past, rather than telling you how recent the infection was/is)
10. SGOT (AST) = liver function test - EBV and hepatitis can damage the liver
11. SGPT (ALT) = liver function test - EBV and hepatitis can damage the liver
12. GGT = liver function test - EBV and hepatitis can damage the liver
13. VDRL = syphilis test - other syphilis tests can substitute for this one
14. CBC = FBC = full blood count = general test of health - doesn't give you any specific information and can come up 'abnormal' for lots of different and trivial reasons e.g., recent flu, pregnancy, steroids

It may be worth seeing what test results you already have on your IVF file (if you are having LIT outside the UK), and whether you can get any of them through your GP to reduce the cost.

As at August 2010, the list of tests for paternal LIT with Dr Gorgy was:
- rubella (both partners)
- HIV
- Hep C
- Heb B (surface antigen & core antibody)
- Syphilis (VDRL)
- full blood count
- HTLV 1 & 2


13.5.18 Are the test requirements strict?
Where you are having paternal LIT, Dr Tsagaris expects you to get all these tests done and to let him know in advance if any of them show a problem. Where you are providing the donor, it is essentially your responsibility to determine that he/she is properly screened. Dr Tsagaris does glance at the test results when you have your first LIT, and its possible that he MIGHT still agree to treat you if some of the less critical tests are missing from your results (the HIV, HTLV, Hep B and Hep C tests are clearly essential) but he does rely on you to ensure your partner (or any known donor that you bring) is properly screened. If you are having third party donor LIT, then it is obviously his responsibility to ensure that the donor is properly screened.

Nogales are apparently strict on their test requirements. Dr Armstrong is very strict on test requirements and, presumably Dr Gorgy will be too as he needs to keep his UK licence. I understand Cliniccheck require you to do all your blood tests ‘in house’ with them.

For LIT at Serum its possible for your partner to have the screening tests the day before LIT for a fairly low fee (about 98 Euro).

13.5.19 How much does LIT cost?
I think it is £1500 for 2 shots of paternal (or donor if that is available) LIT with Dr Gorgy but blood tests are around £270 on top of this.
I think it is £2680 including blood tests for 2 shots of paternal LIT with Cliniccheck in London.
I think it is €1000 for 2 shots of paternal LIT with Dr Tsagaris in Athens – blood tests are around £400 but could potentially be cheaper if you have already done some of the tests as part of your IVF (e.g., Hepatitis B, C and HIV). As there are no time limits on the expiry of screening test results, you might be able to get your GP to do some/all of them.
I think it is €1200 for 2 shots of single donor LIT with Dr Tsagaris (no blood tests needed) and €1400 for pooled donor LIT.
I think it is something like €600 for 2 shots of paternal LIT with Serum in Athens.

13.5.20 How do I retest my LAD after LIT?
You would probably want to wait 3-5 weeks before retesting to give your body chance to show a reaction. Depending where you live, it may be cheaper to get you and your partner’s blood drawn and fedex it yourself to RFU Chicago (the blood test request forms and shipping instructions are on their website here http://rosalindfranklin.edu/DNN/home/CMS…11/Default.aspx

You need to send 1 yellow SST tube of your blood and 3 green lithium heparin tubes of your partner’s blood. Your partner’s blood has to be less than 48 hours when it gets to Chicago so you need to check with fedex about the timing of their pickups and coordinate with your GP or (private) hospital about getting the blood drawn.

You need to bear in mind that the blood needs to arrive in Chicago on a weekday during working hours and avoid any bank holidays in the UK or US.

It is probably easier to go through Dr Gorgy (or another consultant), and ask his clinic to organise the test for you by post or go to TDL on a mon-wed morning to get the blood drawn there. If you ask for a post pack – it will be posted to you and include the right tubes and a completed requisition form (you can double check by comparing the colours of the tube tops against the coloured ‘spots’ shown next to the tests on the requisition form in the pack – but normally TDL get that right). You need to take these to your GP/local hospital to get the blood drawn preferably on a Monday or Tuesday afternoon just in time to take it to the post office where you need to pay for special delivery next day by 9am service back to TDL. TDL will then Fedex it to Chicago in their daily Fedex run and fax the results back to Dr Gorgy/other consultant. If you are in any doubt about the timings, you should phone TDL pathology and speak to their Referrals Department to check with them the timing of their fedex run to RFU for that week.

The results are normally back within 2 working days of the blood arriving in Chicago.

You can also have your LAD retested in Athens if you are going to be there for treatment.


13.5.24 When should I have LIT?

Ideally you want to have it in advance of your fertility treatment so that you have time to have at least 2 shots of LIT, then a retest of your LAD 2-5 weeks after the 2nd shot to make sure your LAD has risen as expected, so that you can book another shot(s) of LIT if not. However, some ladies choose to have it much closer to their treatment and gamble that the LIT has worked well enough for the time being, and if not, retest LAD on BFP and then schedule another LIT asap if LAD is still low (and then retest again and have more LIT if necessary etc up until 18-22 weeks of pg). The main disadvantage of doing LIT close to/during your cycle/2ww is if you are going to be taking steroids as they may reduce the effectiveness of LIT meaning that more shots of it are required to get the same effect.
ICSI 1-April 2010 BFN
ICSI 2-July 2010 BFN
ICSI 3-January 2011 Immune Cycle- BFN (Humira, LIT, Intralipids, IVIG, Clexane, Progesterone & Steroids)
ICSI 4- April 2011 Immune Cycle - Blessed with a :BFP:


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Saturday, April 16th 2011, 10:16am

Wow, thanks Rii - that really does explain it all very well and gives all the info. xx

AMH 8.4 (me=36). 6 cycles clomid. Immune issues.
1st IVF cycle April 11 - canx due to endo cyst.
2nd IVF cycle with immune meds May 11 :BFP: [zx076] seen 5wk5d, 8wk5d, 12wk
"There can be miracles when you believe"
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Rii

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Saturday, April 16th 2011, 1:34pm

Ur welcome Fluffy..xoxo
ICSI 1-April 2010 BFN
ICSI 2-July 2010 BFN
ICSI 3-January 2011 Immune Cycle- BFN (Humira, LIT, Intralipids, IVIG, Clexane, Progesterone & Steroids)
ICSI 4- April 2011 Immune Cycle - Blessed with a :BFP:


miriam

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Saturday, April 16th 2011, 2:58pm

Thanks for all the feedback.

Fluffy: Yes I want to wait for the results before we see him, so that we have a full set of results.
About the LIT, why aren't more doctors using it if it has such good success rates? Do the doctors in the US, like Dr Sher, refer women to Mexico to have it? Otherwise, what alternative does he recommend?

lt will be useful to see how you get on with it, and whether it helps you. Please let me know how you get on.
Me 30 DH 36
TTC 9 yrs
Bicornuate uterus
2 m/c at 5 wks-natural
3 failed ICSIs-all BFN
Level I immunology tests-normal
Level II tests with Dr G

ruthie

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Saturday, April 16th 2011, 4:24pm

About the LIT, why aren't more doctors using it if it has such good success rates?


The problem is, like all immune stuff, that we can't say it has good success rates. There are conflicting results in the studies, and none of the studies I found were worth reading tbh. Clinical trials are tricky things, and to be able to rely on the results they have to be properly conducted. In pretty much the entire repro immune field there are very few studies full stop and of those that there are most have none of the characteristics doctors look for in a good clinical trial.
The reason more docs don't recommend it is simple - they don't believe it's relevant. It's the same reason that ARGC use Humira and CARE don't, and that Dr G uses LIT and ARGC don't, it all comes down to personal preference. There isn't the proof, yet, as to which approach is right or wrong, you pays your money and you takes your choice. Dr G believes it works so he recommends it, other docs don't so they don't.
With some treatments you might get it anyway, even if they think it prob doesn't do much. After all most immunies are given clexane, even if they have no clotting probs. But that's becuase clexane is v v safe. LIT does have potential risks, so docs need to be convinced of the benefits to suggest it.

Hope that makes sense.

xxxx

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Saturday, April 16th 2011, 6:25pm

Ruthie has explained that very well. I think the problem is that immunology treatments are still so new and untrialed (as Ruthie says) and in a way we are the guinea pigs! But I believe that in 5 - 10 years time when everyone will have heard of it and when all doctors will be using it if necessary then we will have been the trailblazers leading the way!! Only trouble is that I'm not sure how they are ever going to conducts good clinical trials.

I'm not sure about Dr Sher but I think that if you look at the immune pages on the US fertility forums you will find women who have gone to Mexico to have it.

I'm not sure either about alternatives to LIT but I guess the only alternative is not to have it and just hope that the other immune tx (which you might be prescribed) will be enough. I know, for example, that Chatterbox has low LAD but she didn't have LIT as her clinic doesn't do it and she is now pg!

I think another problem is that lots of women are scared of having LIT. From a safety point of view, I'm not concerned as I'm not a DQ alpha match with my DH and so can use his blood, and when you really think about it, why should that bother you. If you get pg then you will be mixing with his blood etc anyway (through the embryo).

I'll let you know how I get on and what happens. TBH though, we are in two minds about whether we will go ahead with it anyway. But then we have the added complication of both of us having to travel to London for the treatment (DH isn't sure if he can get time off work plus we then have added costs) and because we are so close to our cycle now it does seem more and more likely that we won't be able to do it for this time. I guess it boils down to thinking that if you don't have it and your cycle doesn't work then will you beat yourself up over not having it but then if you do have it and your cycle doesn't work how will you feel etc etc.

xxx

AMH 8.4 (me=36). 6 cycles clomid. Immune issues.
1st IVF cycle April 11 - canx due to endo cyst.
2nd IVF cycle with immune meds May 11 :BFP: [zx076] seen 5wk5d, 8wk5d, 12wk
"There can be miracles when you believe"
My diary


Maria72

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Saturday, April 16th 2011, 7:16pm

Yes fluffy, you are perfectly right. I didn't want to take humira, and still don't but then I thought what if I have another m/c? I'll only blame myself for not taking it! I too have been trying to find articles about immune tx and humira on pubmed, but there is not much there. I'm just closing my eyes and hoping for the best. What else can we do?

Maria72

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Saturday, April 16th 2011, 8:39pm

I have created a new section where we can chat about all our tx.
It's here: IMMUNOLOGY CHATTER

If you want to move your diary in the immunology section please ask and I will do so.
:xxx:

chatterbox

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Monday, April 18th 2011, 11:20am

Hi Miriam

I was LAD negative when tested prior to this IVF tx as well as having an aggressive DQ match with DH and a v. strong NK response. So you'd think a prime candidate for LIT?

However, CARE only prescribed Intralipids and steroids for this - as this is what was deemd to work. i.e. it was enough to lower my body's NK response. LIT was never mentioned. It has thankfully seemed to work...

:goodluck:

Me 40 DH 35 TTC 10yr
peritoneal mesothelioma, cystectomy 97 & 00
peritonectomy, lost both tubes & most of left ovary Aug 07


Dec 07 BFP b/ov m/c 9.6wk
July 08 BFN
Dec 08 BFP b/ov m/c 9.6wk

July 09 BFN
Nov 09 BFP 2 x sacs 1 b/o 1 no hrtbt m/c 9.2wk
May10 BFP at 8+4 m/mc @10wk scan ERPC

Found: High NK cells, DQ Alpha match, LAD neg & PAI-1 pos...

NOV 2010 - Immune IVF at CARE Manchester
:BFP: [zx076] :girl: born 25/8/11

OCT 2012 - Immune IVF at CARE Manchester
:BFP: [zx076] :boy: born 24/6/13

miriam

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Tuesday, April 19th 2011, 12:01pm

Hi Chatterbox

I'm so happy for you that your treatment seems to be working - so intralipids do seem to help with low LAD levels. I don't know yet if we are a DQ match, but my NKs are fine, so hopefully, intralipids and steroids alone may be enough for me too. That is if Mr G will prescribe them for me.

:goodluck:
Me 30 DH 36
TTC 9 yrs
Bicornuate uterus
2 m/c at 5 wks-natural
3 failed ICSIs-all BFN
Level I immunology tests-normal
Level II tests with Dr G




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