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Thread: Immunology Testing

  1. #109

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    Hi Holymoly



    Since ive been tested for Blood Test NK Cells = Total 9.5% i was not `given a steroid its considerd low is it true i may still have NK cells and i wont know until i have a endometrial biopsy can i have a gp refer me to public hospital in sydney for the endometrial biopsy or do i have to go back to my FS .
    The only thing found after so many vials of blood was prothombin gene and i was given clexane.
    Last edited by matilda2; July 4th, 2009 at 01:24 PM.

  2. #110

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    Hi Holymoly

    I couldn't PM you (I'm not very good at this) but I am really interested to know who the Melbourne doctors are who use IVIG. Could you PM me?

    I don't get the "its your age" thing yet but I'm sure that's going to start soon. I do get really irritated with having to say "I understand there are no guarantees, but....." before I ask anything.

    I am also really frustrated at the moment because my FS has no explanation or answers for me but refusesto try anything even slightly controversial. Surely what I want should have some influence in my treatment. I've said to her that I understand there is no evidence some treatments work and I understand there are risks but shouldn't it be my choice if I want to take those risks? Especially since she seems to have run out of better ideas.

  3. #111

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    Good Luck getting government approval for IVIG therapy. IVIG/Intragram is a very very exclusive rare and hard to source blood product and as we do not pay blood donors in this country not a lot is able to be made each year. It is actually excluded under the clinical guidelines for IVIG therapy to source IVIG for use inf female infertility so if people in Australia are doing this they are doing so against the guidelines.....

    I am not comfortable with that at all especially when I personally know so many people with imediately life threatening conditions who are denied access everyday many of them children. Good luck to you if you can get it but know that you will be breaching all the guidelines and rules in order to do so.....

    Melanie 39 Geoff 39
    4 beautiful angels: Jul '04, June '06, Sep '06, Nov '08 Forever Remembered in Mummy's Heart
    Too Many PGD/IVF cycles to remember.....TTC since Feb 2004
    Last edited by melbel; July 4th, 2009 at 02:14 PM.

  4. #112

    Arrow IVIG Method US & UK

    Intravenous immunoglobulin G (IVIg) is an intravenous drug given to women prior to conception through to the sixth month of pregnancy. Although it wont help all women, those who have experienced recurrent pregnancy loss due to autoimmune factors may find that IVIg is just what they need to maintain their pregnancy.

    Using donor blood that has been washed and processed, IVIg is made up of human-derived antibodies. These antibodies help to keep your immune system from recognizing an embryo or fetus as foreign and attacking it. More specifically, IVIg aids in minimizing the actions of natural killer (NK) cells. Amplified levels of NK cells can prevent an embryo from implanting as well as interfere with the proper development of the placenta, which in turn prevents the embryo from developing normally. All of these factors can result in a miscarriage.

    Precisely how IVIg works is not entirely clear. It is thought that the drug may block those antibodies that cause your body to reject a pregnancy. However, it is also speculated that IVIg may work by soaking up and defusing the harmful antibodies that can interfere with a pregnancy.

    Who is IVIg Intended For?
    In general, women who have elevated levels of natural killer cells resulting in recurrent miscarriages are thought to benefit the most from IVIg treatment. Yet, recent research has also shown a connection between increased natural killer cell activity and antiphospholipid antibodies (APA): it appears that those with APA are more likely to have elevated NK cells.[/SIZE][/FONT]

    Typically, women whose miscarriage problems were linked with APA were treated exclusively with heparin and aspirin. Because of the relationship between APA and NK cells, however, more fertility specialists are testing women affected by APA for NK cells as well. If there are elevated levels of NK cells, then these women will likely be treated with IVIg instead of the common treatments for APA.

    IVIG Infusion Therapy

    In general, IVIg therapy should be started from the first month of pregnancy and continue until the 28th week of pregnancy. However, there is some evidence to suggest that administering IVIg infusions even before pregnancy occurs may be beneficial in preventing miscarriage. IVIg therapy is often done monthly and doses can be given anywhere from one to three consecutive days.

    Because IVIg is administered intravenously, to receive this treatment, an IV catheter will be inserted into a vein in your hand or lower arm. This will allow the IVIg solution to slowly drip into the vein and enter your system. Although IVIg can be administered in your home under the supervision of a nurse, the very first time you receive treatment you will need to visit your fertility specialist. The first infusion is always done in a clinical setting under proper supervision in case you experience a severe reaction to the drug.

    In order to guard against unpleasant side effects, IVIg infusion must be done slowly. This means that one session can take several hours to complete. However, if you seem to be dealing with the treatment well with minimal side effects, it may be possible to complete treatment sessions sooner. Just how much IVIg a person should receive can vary as dosage is calculated according to your weight.

    Side Effects of IVIg Treatment

    There are a variety of side effects associated with IVIg infusions. Typical side effects include:
    * Fever and chills
    * Nausea
    * Back pain
    * Headache
    * Skin irritation at the site of infusion
    * Occasionally, pain in arm during infusion

    Just how severely you will notice these side effects depends upon the amount of IVIg you receive and for how long. Generally, those receiving lower, shorter dosages report fewer side effects than those women who receive a three-day dose. In some cases, side effects can take a while to appear, causing a delayed reaction to occur 24 to 72 hours after treatment. Some women notice that they are better able to tolerate the IVIg therapy and experience fewer side effects as they continue with the treatment.

    Cost and Success
    IVIg therapy can greatly improve your chances of having a successful pregnancy after recurrent miscarriage. Some studies have shown a success rate as high as 80% with IVIg treatment. However, this type of fertility treatment does come with a hefty price tag.
    Last edited by dusty; July 4th, 2009 at 02:14 PM. Reason: simplified fonts

  5. #113

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    Which is all very true for the US and the UK...unfortunately i say again it is specifically excluded for use in female infertility in AUSTRALIA, primarily because we do not have anough IVIG to go around in this country due to the fact we have a monopoly by one manufacturing company (another story) and there are very strict criteria on who may access it..... If you can access IVIG therapy here good luck to you, just be aware it against all the criteria set down by the NBA (National Blood Authority). Also it is more than ten thousand dollars for each adult dose of IVIG so keep in mind the cost when thinking about these things.

    Dr Beer in his book Is my body baby friendly explains all these different therapies very well... I highly recommend it....

    By the way I have a 36% incidence of NK cells in my uterus according to the biopsy Dr. Sacks did and I am now 6 weeks pregnant (fingers crossed fora sticky one) using prednisone and clexane therapy after 6 yrs ttc and innumerable IVF/PGD cycles so it can happen..... fingers crossed for everyone....

    Melanie 39 Geoff 39
    4 beautiful angels: Jul '04, June '06, Sep '06, Nov '08 Forever Remembered in Mummy's Heart
    Too Many PGD/IVF cycles to remember.....TTC since Feb 2004
    Last edited by melbel; July 4th, 2009 at 01:42 PM.

  6. #114

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    Default IVIG specifics

    H Melbel,

    Sounds like you've been fortunate in the baby game.Hopefully you have not had to go through any IF treatments.I wouldn't wish it on a dog. Despite the nature of the beast at times where it can be to say the least unpleasant emotionally,humilitaing, invasive and really trying.
    If you'reone of the lucky ones who gets a baby out of it, nothing would make you take any of it back.
    That said ,to be put through all of that ad get no baby...10 times, 7 times ...twice.

    There are therapies in the UK...Dr Ndukwe has the #1 rate of success there. He used IVIG at first and has recently swithched to a non-human blood product called Intralipids. It is just as effective and has no side effects at all. For fun, look and see what you can find about him. He is not alone. The Beer center in SA (California) Los Gatos to be exact. EVERY NK bopsy done in Australia is sent there for analysis. They put it on a plane and get the results remotely. SIRM Las Vegas...All IVIG - Intralipid usere. All get results unparalleled here.

    Just for your information, IVIG is given to PG women who are in danger of a miscarry for certain conditions.Why would 15% of this country's supply of IVIG (which is made in the US not in Australia) goes to Obstetricians and OB care. How can it be dangerous and Illegal if an unborn baby is given this in utero? Check with the Austraalian blood service for confirmation of this.

    The government won't pay for it.You can get the treatment .It is not in short supply, they have plenty, just not here because it's expensive .If it were covered, they would have fully 1/3 of all IVF patients who don't concive after the 3 rd try who are more likely than not to be stuck with some immune/clotting issue and have to pay for it.Ay 3 K a treatment that would be very expensive.
    They are generous enough with the safety net.

    IVIG is not illegal. Please don't scare people. Dr Matthias and a few others who I have found are certified specialists and the therapy is administered in hospital in 3 hours or so by nurses.Is the Royal Melbourne infuson therapy unit doing something illegal by treating infertility patients who are there under medical supervision?

    anyone who would like info may e-mail me p.inkline.fever a t yah.ooo

    all one word [email protected] y------.com

  7. #115

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    HolyMoly,

    With all due respect I take extreme offence at your initial comments...did you even bother to read my last post.....or my signature?

    And yes if you are willing to pay as a fully self funded private patient you can access IVIG here in Australia, maybe I did not make that distinction clear enough in my other post....you still have to be approved however so that you may order the drug and you cannot access domestic stocks as they are reserved for people who meet the criteria, as our domestic stocks currently do not meet the demand in this country. this means you will have to import your own IVIG from one of only two approved overseas manufacturers and (as I stated earlier for the benefit of others who may not be as aware of the costs), it will cost you in excess of $10,000 per treatment. Now depending on the treatment plan you are placed on you may require these as much as once a week or as little as once a month. For example Dr. Beer himself would recommend weekly treatments to begin with for the first three months preconception and then scaling back once conception is achieved, different doctors of course will use different protocols......I was merely placing all the facts there so that people who read this thread and are new to this stuff have all the information there to make an informed decision.

    Please do not try to teach me "how to suck eggs"...I have been at this immunology game for a longtime, more than thirty years in fact, and actually do know what I am talking about...

    Melanie 39 Geoff 39
    4 beautiful angels: Jul '04, June '06, Sep '06, Nov '08 Forever Remembered in Mummy's Heart
    Too Many PGD/IVF cycles to remember.....TTC since Feb 2004
    Last edited by melbel; July 4th, 2009 at 01:42 PM.

  8. #116

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    Ladies, please conduct yourselves with sensitivity and respect in this thread. This is in an area where people have all had their own struggles with infertility and BellyBelly provides this thread so we can be support one another in our quest to have children. I ask that you provide information if you wish to, and keep judgements and insensitive and flaming remarks out of the discussion. Please read the BellyBelly Guidelines found HERE, in particular numbers 2,3 and 6, before posting again.
    If you believe a post is breaching the guidelines then use the report button ! on the top right hand of the post to alert a moderator.

  9. #117

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    If anyone felt hurt by anything I added, I am apoligizing officially.

    Al I was hoping to do was make information about my treatment available. I have cried and waited and made phone calls and begged for information that was not easily avaiable .

    This all started as I sat there waiting for my 2 nd transfer.I met a very kind woman who touched me deeply. She has been with my IVF doctor for 11 cycles ! She is patiently waiting for her mracle. She told me her husband has had it nd if this one doesn't work ,they have to move on. This broke my heart.I actually sat there wishing for her that this one will work instead of me.She really deserved it.What she mst have been through.I felt lik a big baby crying a bit and feling sorry for myself after failure #1 ...This was for her # 12.
    She told me she was happy with doc.Me too she's awesome. She then said her protocol had not changed much if at all from the beginning..Our doctor did no additional testing etc. She just reassured her of her years in md school and her successes and that she shold be patient.She said she was sure it was her age...5 years younger than me. How sad.This lovely woman blamng herslf.

    It was then that I decided that I could not sit by passively and accept no further investigating.Not o.k. to deny any basic tests done to see if there's anything else... I did move on and found somone who listened and agreed to check for possible culprits.

    I absolutely respect whatever decision anyone makes with their plan. THIS is the right way for me. I need to give this all I have.
    If anyone wants to get the names and whatever else I have found locally,please e-mail me . I wish this information had been made available to me so I could weigh all sound and medically sound option.
    I am not abl to PM or anything else for some reason .My e-mail is in one of the above posts. Good luck everyone.

  10. #118

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    Hi Holymoly, you wont be able to access the pm function until you are a BellyBelly member.

  11. #119

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    I totally get where you are coming from holymoly. I guess i have been lucky in that I have always had a thirst for knowledge about my medical conditions and have always been one to ask bazillions of questions about every possible nano aspect of what was going on. I think this is because i have had a life threatening auto immune disease since I was nine and was raised by my parents to keep on top of the latest research and treatments etc (my dad was an industrial chemist so used to bring home scientific journals). So when we faced with the infertility "badge" many years ago I approached it the same way right off the bat and did soooooo much research, asked second and third and fourth opinions and found myself a FS who was open enough to listen to my views and give an honest, respectful opinion on them. I think also having that other auto immune condition and my knoweldge of the interactions between auto immune disorder twigged me as to the plausability of there being an auto immune connection earlier than maybe most people would have.

    I was very lucky to find a FS who was secure enough in himself to refer me to fly to sydney and consult and have tests with Dr. Sacks and then listened to the results and took on board Gavins recommendations for treatment....I feel very blessed in that and also the fact he was willing to try different protocols to get the best possible outcome.

    What I was trying to do by sharing my knowledge of IVIG therapy is just make sure that people were aware of all the issues surrounding it, especially its use here in australia at the moment. My personal view is that IVIG could be a very effective treatment for immune related fertility issues.....I personally could never afford it, not even I sold the house and lived in a caravan and I think that's what i wanted to make people aware of.....It is great to have hope in this frustrating, seemingly never ending tortuous journey to have a take home forever baby, but it is also important to be realistic about it all.
    I think that for people who can afford IVIG therapy they should go for it....if i had the money I would be thats for sure because the prednisone sure makes my other condition much harder to manage....it was never my intention to put people off it as a treatment option, just wanted to make sure all the facts for and against were put out there...

    And you are right.....it totally sucks that the information is not more readily available, I was just lucky enough to be able to access scientific journals etc which not everyone can do.......


    Melanie 39 Geoff 39
    4 beautiful angels: Jul '04, June '06, Sep '06, Nov '08 Forever Remembered in Mummy's Heart
    Too Many PGD/IVF cycles to remember.....TTC since Feb 2004
    Last edited by melbel; July 4th, 2009 at 06:05 PM.

  12. #120

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    Melbel and Holymoly - I just wanted to thank you both. Any information I can get and views from all directions are welcome. I'm the sort of person who likes get all the views and opinions and all the info and then make up my own mind so you have both helped me.

    It's all very interesting. Does anyone know of anyone who has used the alternative - Intralipid? in Aust?

  13. #121

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    My limited knowledge of intralipid is that it is an intravenous fat source that is used as either a caloric booster or to facilitate the dispersion in the body of other drugs, such as anaesthetics etc. I have not heard of it being used as a drug on its own type thing especially not for immune conditions or even know how it would be useful in immune issues. Would love to learn more though if you have some info......

    Melanie 39 Geoff 39
    4 beautiful angels: Jul '04, June '06, Sep '06, Nov '08 Forever Remembered in Mummy's Heart
    Too Many PGD/IVF cycles to remember.....TTC since Feb 2004
    Last edited by melbel; July 4th, 2009 at 06:23 PM.

  14. #122

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    Default Intralipids

    Intralipids are readily available here. The trick is to try whatever you can to get your doctor to agree and prescribe the treatment for you.

    I did a phone consult w/ Dr Sher of SIRM Las Vegas. He called my GP and my GP wrote the script for treatment.

    Dr S says it's as effective as IVIG and they almost exclusively use it instead if IVIG now except in cases where the patient has an allergy to eggs.
    It's only 10% of the cost of IVIG...
    You have it before the transfer and once a + go for another blood screen to see if the little devils are coming back in any threatening manner and have another if necessary.

    My Gp was very negative about the IVIG and had not much to say negative about the Intralipids as they give it to preemies and people who are too sick to eat/swallow often to keep them alive. A consult will get a phone call( to your GP or IVF FS) and SIRM will send data and explain all to them.
    The medical term for what it is used for here is 'parenteral nutrition"

    Same side effects as from IVIG (not much) . The side effects in both cases where they rarely if ever happen are due to the speed of the infusion going in.

  15. #123

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    Default Question for holymoly

    Hi Holymoly

    I noticed your reply and was hoping you can help me. I am currently in the process of sending my bloodwork to the US for testing with Dr Sher. (20 perfect ivf cycles plently of miscarriages and no baby) Unexplained infertility

    I noticed you to have spoken with Dr Sher and would like to confirm a couple of points. Unfortunately did not ask him during our consultation>

    The question I want to ask you is Dr Sher happy to treat patients in Australia ?(I dont fancy travelling to the us for treatment)
    By doing this does he speak to your doctor or at least send some sort of detailed plan?
    thanks
    Constance

  16. #124

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    Hi Ladies,

    After reading this thread my sister and I have made appointments to see Dr Sacks next month.

    I have a question that I would like to ask prior to the appointment.

    Q/ When doing the blood test, should you be treatment free that month.
    Or is it o.k to be doing an FET.

    Thank you in advance for any information.

    Danyelle

  17. #125

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    If she's having a biopsy, she will need to be treatment free. Even for the bloodtests, I'd suggest not doing a transfer until the results are known. Dr S suggests prednisone from ovulation/EPU when it is needed and if she's had a transfer that cycle and it turns out that she does have an NK cell problem, then she's pretty much just wasted a cycle.

    BW

  18. #126

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    Hi Ladies,

    May I Please ask just a couple more questions. Just so we understand everything before we go.

    1/ On what day of your cycle is all the blood test done ?
    Do you have to fast for the blood test ?


    2/ If a Uterine Biopsy is required on what day of your cycle is it done ?
    Does having PCOS affect the date for doing the test ?

    Thanks in advance for any information, its much appreciated
    Danyelle

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