Hello,
i just wanted to know abot immunology tests? when is the right time for it.http://photosnag.com/img/3147/n09x0302vnsn/clear.gif
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Hello,
i just wanted to know abot immunology tests? when is the right time for it.http://photosnag.com/img/3147/n09x0302vnsn/clear.gif
Hi lalitearns,
For me after 4 transfers with never a hint of a BFP, I pressed my FS for these tests. I have heard that some FSs won't ask for these tests until up to 8 unsuccessful transfers. I think all my BTs cost approx $400, most I claimed back from Medicare
Hi everyone else,
I also wanted to post that my new FS gave me the results from an extra BT she requested. My last FS had requested a whole range of tests, see my earlier post in this thread, but had missed MTHFR for some reason, not sure if this was not requested just because of an error.
Anyway, lucky for me my new FS picked up that it was missing and my results showed positive for MTHFR. In the weirdest way I am over the moon as now I have something that could be contributing to my unexplained infertility.
From what I understand people with MTHFR factor don't produce folic acid, vitamin B6 and vitamin B12. Women with MTHFR factor can have early miscarriages and a lack of B6 and B12 directly affects rapidly reproducing cells... which is exactly what an embryo is. In fact, a lack of B6 and B12 causes rapidly reproducing cells to STOP reproducing. This is also linked to an increase in homocyctein levels and falls under the thrombophillia blood clotting disorder.
Some I am now on:
Low dose aspirin daily (100mg)
5mg folate daily
Mega dose of B6 and B12
Clexane injections daily from ET
I am yet to know if this will make the difference to me getting a BFP, will definitely post my results, but just wanted to stress how worth it it is to get all your tests done and make sure ALL of them are done. I don't want to think about what it would have meant if I didn't get this one result, (everything else tested normal), possibly endless more transfers.
Best of luck
Hi everyone, some news to report, the most exciting moment I've had last week was after my total of 15 vials of blood been taken, I was so reliefed I have left them behind to say the least. I was really nervous and didn't even had a good sleep the night before. Fasting is not helping my naucious either that morning.
FS appt went well and he has no problems of getting me tested for all the long list of things I brought along with me. I should be getting the result sometime this week. The only thing I haven't done is the endo biopsy. Because I have fibroids and he said the biopsy is a bit uncomfortable and he might as well get it done when I have my fibroids removed altogether.
Has anyone done the Endometrium/uterius biopsy (I assume they are the same things)?
Hope you are all doing well!
Hi Cuddlepie - as you know, I did the SIVF MC investigation program. I skipped on the endometrium/uterus biopsy (for really stupid reasons I won't go into), but I can tell you it is performed at approximately Day 26 of a 28 day cycle. It is done at this time as this is when the lining will have the highest concentration of NK cells, prior to the lining shedding for AF. The Program tracks your O (as not everyone O's on Day 14), then the biopsy is done approx 12 days after. HTH ;)
Woo hoo CP! Glad to hear. Seems you are a little ahead of me in your investigations. I look forward to hearing how you go.:
I am heading to Dr Sacks tomorrow and I have no idea what to expect but I am open to everything at the moment. I think I will go the biospy if it is offered and am interested in what others have experienced/found.
Hi ladies. I noticed the earlier posts on this thread are now almost 3 years old. Are there any Drs in Brisbane now doing this testing/treatment or is it just the same two Drs in Sydney doing it?
I would like to get this testing done before doing any more IVF cycles. If I need to go to Sydney, how long would I need to be down there? Do I just get a referral from my GP in Brisbane? How much would I expect the testing/consultation to cost? Would I need to continue to go down if I did need any sort of treatment? Can acupuncture help with any of these problems - is it worth trying that first?
I feel like I've hit a brick wall with our treatment. :wall: My FS seems reluctant to do any further testing and just wants to keep trying the same IVF protocol over and over again. I can't help but think that after 4 transfers (6 embryos; not to mention 6 IUIs and months of trying naturally) there must be some reason for us not getting pg. At the very least I'd like to rule this out...
Any advice would be greatly appreciated.
juniper76, sorry to hear your journey so far is not successful. I would definitely recommend to do further testing...I wish I could have done it earlier and now I have this compelling urge to tell everyone especially those who are put into this 'unexplained infertility' basket to get tests done early.
I am not sure if anyone in Brisbane does the immunological testings, hope someone will come to offer help soon. I am in Sydney. I know there are a lot of people who just fly in to see the two doctors mentioned here for consultation, phone consultation is also avaiable. My first consultation was around $180 (can't remember the exact figure but definitely under $200) and the blood test are all bulk bill so completely free. You will need to get a referal from your GP which should be quite easy and then just book the appt. The tests are done in St. George Hospital seperately and some tests are done during certain time of the cycle (ie. NK cells 7 days before AF) so there might be more than one trips, but a little bit of plan could minimize it I am sure.
Regarding treatment, Im sure there is way to work around the geographic problem as you are definitely not the first interstate patient Dr S had. At least take the first step to get the tests done so you know where you stand.
My FS said each Transfer is about 30% chance, fresh ones are higher, so anything more than 3 failed transfer, I'd think more to find out the problem rather than just single-minded repeat the same process. There is a 'numbers game' factor in there but you'd hate to waste so many perfect embyros then find out something can be fixed easily.
Good luck with whatever you decide and let us know how you go....
Hi Ladies,
Juniper, Cuddlepie pretty much gave you all the info about Dr S and testing for NK. I would suggest maybe doing a phone consult with him, then travel to Sydney for the testing. I too had my NK bw and endo biospy done at St George Hosp Kogarah. I can't remember what cycle day for the b/t (not sure if it mattered) but late in the cycle for NK biopsy.
I also wanted to add for the reference of others:
Dr Lynn Burmeister in Melb does NK testing (not sure which clinic, sorry)
There is a female FS in Darwin at Repromed who does NK testing & biopsy (don't know the name, sorry can't be more help).
HTH.
I went to Dr S and he is wonderful he recognised my immune system was causing our infertility and put me on a clexaine protocal and bingo I gave birth 8 mnths ago. he is a legend.
Juniper Dr S is one of his kind in this testing - I would suggest it's well worth a plane trip to Sydney. Give his rooms a call and see what you can manage? ;)
Hey Juniper,
I also found Dr S very helpful. if you call his rooms, his assistant will organise the appointment etc if you want to go. Even though the testing in Sydney is supposed to be the best, I ended up having the NK cell test in Melbourne with Dr Nick at Monash IVF, Lynne Bermister is at Monash IVF too. My levels was at 8, and 10 is the level where he starts to use a full prednisolone and clexhane treatment. As it stands I will do a short course of prednisolone, just 5 days, plus a few other things on a "Colorado Protocol".
What I really wanted to say was that the biopsy is no big deal, I thought it would be, but just like a pap smear, a little more uncomfortable. If you have had a few rounds of IVF though you get so used to people poking you up there that it really was not big deal. Also they wanted to do the test between day 21 and 26 of your cycle.
cheers and good luck
sam
I am have been diagnosed with NK. I did 2 failed IVF cycles and did some homework.I requested to be checked for NK and it's positive.
I want to go on to # 3 but need more info.I'm not satisfied that my IVF guy knows what this is and how to treat me.
I want to use Dr Matthias for a consultation but am not sure what to do.
Will he work with my IVF gy or can Dr Matthias refer me to someone he knows /respects this and will work with Dr M?
Help confused
Samandpoppy - did you have to not be trying to get pregnant ie not be on an ivf cycle before you could have the biopsy?
Hi Bridget
when i met with th efamous Dr S i needed to have th eBT and biopsy on CD 21 - 23 i guess it is best not to be in th emiddle of a cycle for this? and TDH why would you be if you are wanting to wait for results before trying again?
Hi Girls,
I have been recently diagnosed with NK cells. The 2 IVF cycles apparently didn't have a chance due to this mainly I think.
I have heard awesome things about Dr S and Dr Matthias. My FS here is absolutely resistant to working with another FS on my IVF. I'm very dissapointed as she is new and recognized NK cells . I like her but her reluctance to consult with wither dr S or Dr Matthias is leaving me upset.
She admits she has not treated more than a few patients with this but wants to try... I hate to be a creep about it but those 2 failures were sooo painful as all of you know all too well and many times more than my 2.
I just want a fair run at this and feel I'm with the wrong FS.
Can any of you PM me with the name of your FS who is comfortable working with a Dr S or Dr M ? I don't know what else to do. Hubby and I have been on the phone with receptionist after receptionist and have spent $$$ on phone consults only to find out they are not open to working in conjunction with Dr S or Dr M.
any city in OZ is fine. Have eggs will travel.
Thanks a million girls.
:Hug: Holymoly....its such a tough decision hun and being put in this predicment not by choice!
I don't know which city you are in but you can be under Dr S care regarding IVF cycles when NK issue being treated at the same time. He is with IVF Aust. You can google him. Hope all works out for you.
Holymoly, I used Dr Mathias and I fell pregnant 1st go after having 2 failed IVF and around 10 Failed FET. I credit him with this pregnancy... I am currently 17 1/2 weeks pregnant with twin boys:lol:!!!
Dr M, didn't really find anything majorly wrong with me but what he did find is that I have the full MTHFR gene, which was stopping implantation, hence the many M/C and chemical preg and failed transfers we were having. if I have one criticism about Dr M, is that because I am in Perth he didn't want anything to do with me FS (which was sort of fine) and when I fell pregnant I was having a major allergic reaction to the aspirin and the clexane was making me bleed and my ob tried to contact him on many occasions and he has never called him back which I find very disappointing. I am with a high risk ob and have decided to run with him on everything as he is totally up to speed with all the immune stuff.... hubby and I are very happy with our decision.
Good luck x
Cuddlepie and Bubwishes,
Thanks a million girls. Dr S and Dr M both are good options.I hav spoken with DrS 's rooms and thy are certainly terrific as far as being helpful.
I did have an odd experience with Dr M's office. The were less than really helpful but I feel compelled to persist.
Your success Bubwishes really gives me hope .I am very genuinely delighted for you. I Love hearing about a BFP from one of us who knows just how much we have had to go through to get there. I hope you are able to enjoy every minute of it.
Hubby and I have decided to do a phone consult with both as I have had the biopsy and bloodwork done already.
The plan by my current FS seems thrown together and not really inspring me to have hpe that she knows what she is doing. I did 2 cycls feeling like I was wasting my time and I should hav istened to my gut.This time I will .
What do you all think about bloodwork and scans ?
My first FS did one scan in the beginning to assess . The second and final one was done to to a follicle count. The second cycle, there was one scan only to do a follicle count.
I did one panel of bloods before cycle one and nothing during either cycle.
This seems odd to me.
Has anyone else done cycles where there is no bloodwork or scanning to check uterine wall thickness, E2 levels etc?
I as many of you, read others bloogs and have come to understand the scans and bloodwork check to make sure things are progessing and the emies are going to be placed back with care in the best nvironmnt possible ad to ensure there are no other issues that com up as a result of stims etc.
I questioned my new FS on this ad she acted like I was crazy and said she'd order bloods if I want.(?) If she doesn't normally do them, how is she going to know how to properly interpret the results and correct treatment as we go for optimal outcome?
Am I being overly protective as a result of the first FS who was an eye roler or is this something you all have done?
HolyMoly - what city are you in?
I am onto my 3rd FS, and you should never have to put up with anyone you are paying being condescending towards you (or anyone else for that matter).
Thank you for saying that. I am in Melbourne.
They just keep reminding you of your age and blaming you for trying even after they explain clearly the numbers of success.
I have had to begin every question with'I am not asking for miracles and do fullly understand there are no guarantees....' then your question or they immediately say stuff like, there are no guarantees...really irritating.
The first place actually had me on stims for 3 days when I called with a question...they asked if I was PG ! I didn't know they were supposed to call with the results, chem. , negative ,etc... What if I was a dope and was PG or had an ectopic and didn't know? They never bothered to follow up.No paperwork. Really disgraceful. I am so mad at myself for not cancelling there and then but I had my eyes on the prize and hoped it would work as I had begun my stims.
The new person is at the other big clinic here and not much better. I asked her if it mattered if the sheets from the embryologists were blank from clinic # 1. She said it means nothing !
Both transfers (fresh) have absolutely no marks on the lab worksheet except my name sticker with info. How is that not important? What if I do dramatically worse with her protocol ? She will have no idea of past history to make a future diagnosis. It was 2 months ago.
Sorry to rant but I'm so hurt that neither cycle had a chance and the new one seems like a dud also.
Did you get scans and bloods during your cycles? I had one scan to count follicles before OPU and no bloodwork after the first before everything.
I thought it was wierd but they were acting like I was a pest for asking them.
Holy Moly,
I think you should stop worrying about blood tests and scans. Each company does it differently and probably it is different for each person, different for the type of cycle, and between FS's. You need to find an FS who you are confident in.
I suggest you go see Dr Nick L. at Monash IVF. He tests for, knows about, is familiar with and will treat for NK cells. Go to see him, try both Richmond and Melbourne to get the first appointment you can as he is quite booked, it may take 6 weeks to get in so at least make the appointment now.
The other thing is that identifying NK cells doesn't mean that it will work first time you take the treatment for them. Hopefully it will, but it may take a while, so cool down a bit. My friend did the Colorado, not for NK cells and had to do it 7 times to get her second baby.
Wish you the luck
Thanks samandpoppy.
We are the same age and if you are saying to take it easier, I am sure you're right.
I just hate how they say 'at your age' at every visit then do everything under the sun to drag it out so I age more during the wait for the next appointment.
I guess you're right about the scans and bloods(dislike them anyway) but it was just hard knowing some doctors care if the lining is the right thickness and ready for an embryo and check hormone levels and adjust that so it's as welcoming as possible and the 2 I have seen just put em back and pray. If this works it'll be a miracle anyway.
Maybe my old auntie is right...I shold just relax and I'll fall PG...
Thanks for the good advicw
Hi
I have failed 2 ivf cyles and 1 iui age 40+ and im stuck at a crossroad and devastated about the last ivf attempt just finished yesterday with pregnancy blood test negative.
I have had immunology blood test plus the usual blood tests when i asked for them 12 vials on one day they even tested Nk cells but the only thing they found was prothrombin gene and was put on clexane with this last ivf icsi after egg collection the 2 weeks wait.
My 2 attempts at egg collection only few eggs collected none to freeze but were great all fertilised even going to blast with first ivf icsi doctor was thrilled when i had 5 day blast 100 cell... my problem is Implantation im sure of it sick sence but was not put on anything other than clexane.
Donor eggs dont want to go there husbands not willing and why would i have to go that route if the ferility specialist tells me my eggs embryo are good
quality.
IF IVF ICSI Assisted Hatching Fails you what then??????
ivf sucks
would welcome a reply from anyone Thanks
:bfn::help:
In Case anyone wants to know, I have found a specialist who uses and will give IVIG treatment for recurrent miscarriages due to high Nk activity.
They are used by 2 IVF specialiststs @ Melbourne IVF. Dr Matthias also sends his patients who live in Melbourne to them when they can't go back to see him.
The studies I have seen say that prednisolone /prednisone works very nearly as well as IVIG . The side effects with IVIG are much less. Some people report a headache and some other minor temporary side effects from IVIG. The prednisone drugs have much more of an inpact on things in general.
If it's a choice of no baby or side effects of prednisolone, I'll deal with side effects or anything else anything but it doesn't have to be that way.
Dr Beer and the highest rated s far as takehome babies in the UK both strictly use IVIG they occasionally use 5-10 mg of Prednisone in difficult cases where the NK clls are very eager to repopulate.At that small dosage for a wek or so ,not too bad.
The bad news is the IVIG is not covered .It's self pay.We choked at the price but when we think of the cost of 5 or 7 or more cycles of IVF with no chance of working and all that wasted effort and tears......seems like a bargain.
No one guarantees anything but the only guarantee I have is another failure for sure if this isn't done.
If anyone out there is suffering through NK he*^ and is reacting poorly to the prednisolone/prednisone treatment,there is another way.
The IVIG therapy/intralipid nfusion that is used widely in the UK and USA ,is available in Melbourne.
The pumpkin face, hair growth, racing heart, weight gain, acne,awful feeling in general does not have to be the only way to clear the decks of NK cells so you can have a fair run at having a baby.
It is fairly equal if not a teeny bit better than the prednisone family treatments but without the not so fun side effects .Some girls get none if any, if you are someone who does poorly on the prednisone,IvIG is what the rest of thw world uses.
It is not cheap,it is out of pocket only.Not covered. The failed IVF cycles add up as do the tears. It sseemed like a bargain for me.
IVF clinics here say it is Dangerous.That's not true. It is administered by a professional who assesses you and it is done in a hospital infusion therapy unit by actual medical people(nurses etc.)Side effects are nothing awful and temporary unike with prednisone. You do not need to be weaned off of it.
It's dangerous to their $$ . If they test and treat for this it will end the 5+++ cycles you have to endure. In the UK they test before treatment IVF . In the US same thing. They then address NK or Thyroid etc. Here they run you through as many cycles as they can before you go crazy and wind up here looking for answers..
If anyone wants to hear where in Melbourne and the names of the 2 IVF people at one of the big 2 here refer patients to the IVIG ...(they officially do not recognise it but I met 2 women who were there with referrals from them) e-mail me.
good luck girls
Hi Holymoly
So what doctor uses this method in sydney and what are the costs.
Im also Interested in seeing a Dr for implantation Failures.
So this treatment can you try to conceive naturally or do I have to Have another IVF Cycle.
Hi Matilda,
He is in Bankstown . I am not sure if his rooms phone number is allowed to be posted here.
His receptionist/nurse(?) can be a bit unusual. on minte fine...completely different the next week so don't be surprised...it's not you.
He is also listed under the Karina or Carina private hospital as a staff Obstetrician.
I have heard good things about him and he uses the IVIG treatment which is as far as I know as good as it gets...
Good luck !
I have heard Dr M has helped more thn a few women with 'unexplained' as their IF diagnosis do it naturally.
He also works with IVF clinics. As I was blathering on about, many don't accept this treatment so if you and he decide to go IVF, be sure to get a recommendaion from him of an IVF clinic that will be accepting of this. He trained with Dr Beer who was a serious global player in the IVF world so I am sorry he isn't with a clinic now in Australia.
I had quite a time of it looking for IVF who accept IVIG NK but finally found a few.
I am sure he will look at your information/md records and be able to say which he'd suggest you try.
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.
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.
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
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.
:wall:
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
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 --------@ y------.com
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
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.
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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.
Hi Holymoly, you wont be able to access the pm function until you are a BellyBelly member. :)
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
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?