First of all, thanks "Admin" for starting a new (and appropriately named) thread.  A quick question though... is there a chance you could please put the thread on the main page with it's own title (Immunology Testing), rather than underneath "Pregnancy Loss"?  The reason being, there are many women who would benefit from this thread who have never even been pregnant because it's not just about miscarriage.. it's also about failed IVF and unexplained infertility, all due to immune issues.  My concern is that those who are still trying to conceive, may miss this thread altogether.
 

Hi Angel and Heather,

No, I haven't commenced IVF in conjunction with IVIg as yet.  I'm gearing up for it now, hoping to do ICSI next cycle, all being well.

It did take a few months for me to get all my results but that's because I had to wait a while before I could do the biopsy.  I think if I recall correctly Angel, you are waiting for Dr M to review the biopsy results you got from Dr S?  I can't say how long that will take but if you are willing to go for another biopsy, I would suggest you keep in touch with Gwyneth (in Dr M's office) and let her know what dates are likely to be in your luteal phase and ask nicely if she can possibly book you in.  I think it helps to just keep the communication going…

Having said all that, you may be lucky enough to find, once you’ve done the required blood testing here, that he does not require you to go to Sydney.  That would be the best case scenario.  He would then prescribe applicable drugs and post you the scripts.  Easy.  Then hopefully, you just conceive naturally!

The biggest issue for me and the reason things have taken a bit of time, was getting to Sydney during my luteal phase at a time Dr M was able to fit me into theatre.  He’s a pretty busy guy!  I’m so glad I did it though because without him and that biopsy, I would never have known about the uterine NK cells.

Yes, you can still do IVF in Perth and include a quick trip to Sydney for IVIg.  IVIg is not a ‘one off’, unless of course, you are successful with your IVF on the first try!  My (limited) understanding is that it lasts in your system for up to 30 days.  So, you have the treatment before your embryo transfer and you would commence any other prescribed drugs 2 or 3 weeks prior to ET as well.  You would need to do one treatment of IVIg for each ET.

I’m not sure what the antibiotics are for (probably just to make sure there are no nasties lurking at TVOA and ET), but I can confirm it is not for Group B Strep.  I was diagnosed with that not long ago by my clinic.  They get you to do a swab as a matter of course, on day 21 of the preceding cycle.  If there is anything there, that’s when they get you onto the antibiotics (i.e. pre stimulation).

I’ll share what I know so far, in terms of IVF with IVIg.  You would have your normal day 2 blood test and check FSH levels.  You also need to check your AMH and provide Dr Matthias with details of FSH and AMH before he will book you in for IVIg.  Ideally, the IVIg should happen somewhere in the range of days 5 to 7 of your cycle, but the catch is, it can only happen on a weekend (Sat or Sun) in Sydney, because that is the only time they can get beds available apparently.  Given we would need to be back in Perth for day 7 or 8 blood tests and scans for IVF, it makes sense that you would aim to be in Sydney on the weekend that falls within the first week of your stimulation cycle.  It’s all a bit stressful isn’t it.  If there is any way of perhaps doing a stimulation cycle and then an FET (and have IVIg for the FET cycle) that would be good.

Also, for your info, the biopsy/hysteroscopy is done by Dr M at Kareena Private Hospital, in Caringbah.  I flew in the evening prior, stayed overnight in Cronulla and took a taxi (10 - 15 min drive) the next morning to the hospital.  They asked me to be there in the morning to go through the pre-admission part and there was a fair bit of waiting around in the lounge.  Then I was shown to my (own) room with locker, told to undress, put on the gown and get into bed.  Then there was more waiting (watching tv, reading etc) until they wheeled me into theatre at 2.30.  It was all over by 3.30 and by 5.15 I was on my way to the airport to get on my flight home.  However, I do NOT recommend flying home the same night.  They were a little concerned about that, because I had just had a general anesthetic, but unfortunately, they didn’t tell me I would be having a general, until I got to the hospital!!  I had already booked the flights (on frequent flyer points) so I wasn’t about to miss the flight.  It all went well though and flying home was no issue, but I don’t think you should be planning to fly anywhere on the same day as your biopsy.  It’s a bit like having egg collection – you have to be collected by someone else and driven home.  So please don’t make any plans to leave Sydney the day of your biopsy.  If you don’t want to spend 2 nights in Sydney, then I suggest taking the ‘midnight horror’ to Sydney the night before your biopsy and having the biopsy the day you arrive.  Then stay the 1 night, after the biopsy.  However… if you want to have a shower in the morning (pre biopsy) that makes things a little difficult.  Anyway, I just thought I’d spell it all out because I had all these questions before I went, and things are always easier in hindsight.

I hope the above answers some of your questions.  It will all fall into place, I’m sure.

Best of luck next week Heather.  You’ll be fine!

Cheers for now

Hi Heather,

Just wanted to wish you all the best with your visit to Dr S. I am pretty sure it is this week.

Thinking of you,
Angel

Hi Heather,

Congrats on your successful trip to the big smoke and sorry to hear about the shingles!  No doubt you'll be fighting fit in no time.

Re biopsies, I have had both - one in Perth in the IVF doc's office - and it was as uncomfortable as you say, but we girls are tough, right?  And the other of course, was Dr M's biopsy under sedation - didn't mind that one a bit!

I am looking forward to finding out what tests Dr S did and what the results are.  It will be great if you wouldn't mind posting those and also his recommendations, once you have them.

Meanwhile, look after yourself and relax!

Hi Angel,

Don't worry... you'll be fine (in terms of your travel to Sydney).  I did it on my own too.  You're lucky though, getting a room for the night..... I literally walked out of the hospital 3 hours after my general and jumped on a plane and they let me do it!  They didn't tell me until I arrived in the hospital that morning, I'd be having a general!  If there is a "next time", I'll also inquire about staying overnight in the hospital - good thinking.

My invoice from Dr Matthias totalled $467.25, of which Medicare refunded $212.85.

I also received a statement (direct from HBF) for Kareena Private Hospital of $1860 in total, which was fully covered by HBF (I have top cover). 

HBF also sent me a second statement for Dr R Hancock (and I think he was the anaesthetist) in the sum of $367.18, of which HBF refunded $170.45.  Hope that helps.  If there was anything else, I've missed it so far.

I'm interested to hear what your biopsy results are so if you are happy to share when the time comes, please do so.  I've been trying to compare mine with the Beer book, but the results don't come in percentages, so it's a bit difficult.  Maybe between us, we can work it out.  I'm also in touch with a Sydney girl who has just had the biopsy done and waiting on her results so that will help too.

Don't worry, you won't feel a thing.  Have a nice sleep and safe travelling!

Gosh Angel, that IS a bit dodgy, isn't it!  That really surprises me, to say the least.  I certainly didn't go handing over cash to anybody at any time and all the paperwork came after the event, in the mail. 

I'm booked in for IVIg next weekend (Sunday) - haven't organised the flight yet though, because I need to wait for day 2 blood results to ensure my FSH is low enough to go ahead with an ICSI cycle - it's been a bit up and down lately (sigh).  I've been on the pill for the last 4 weeks, so hopefully that will help and all will go smoothly.  Certainly makes for stressful times though, having to book everything at the last minute!

I'm busily juicing and drinking wheatgrass every day, to help out in the FSH deparment, and taking melatonin too (among a million other things!)  I must say though, I've really noticed an overall improvement in my health since I started on the wheatgrass. 

Chat soon x

Hi Heather,

Congrats!  It's not great news is it, but at least it's good to actually know what the problem is!  Those damn NK cells !!!

Unfortunately I can't compare mine to yours because the lab Dr M uses, doesn't work in percentages.  It's more of a "per high power field" thing where my CD56 were 55 to 136 (with 136 being the tell all number) and my CD57 were 2 to 8, with 8 being the tell all number.  Dr M put it this way "You definitely have immune issues and need treatment.  You have some high NK cells, CD56, and CD57 is also high, but not as much as CD56".  That's about all I can tell you unfortunately.  Although, when I quizzed him on it again last week, trying to get some kind of % number out of him, he said "you are at the top end for NK cell activity".  So I guess that sums it up and that's why I'm having IVIg therapy.

I'm interested to hear more about the "Bondi" protocol, certainly in terms of the actual IVF part.  Given this will be your first time on immune therapy, it may well be enough, which would be great. 

The first time I used Prednisolone (4 years ago) along with Cardiprin, I got my BFP but it was just unfortunate that embryo had an extra set of chromosomes.  However, my understanding, since reading Dr Beer's book, is that is when I really got those NK cells kicking and each time since, that I have had an embryo in my uterus, they've only become stronger.  So, for the last 4 years, Prednisolone, Cardiprin and (sometimes) Clexane has not been enough for me.  I've used the Prednisolone with the higher dose around egg collection and transfer as well, but still didn't work for me.

Interestingly though, I've always used the Clexane after ET.  Dr M asked me to commence it at least 2 weeks prior to ET and the same applies to Dexamethasone (which he says is better for NK cells than Prednisolone).

Yes, I've heard the same re FET's being more successful, but in my case, when you only manage to get 1 or 2 embryos per stim cycle, it's not worth freezing them because if I did that and they didn't survive the thaw, I'd be devastated.  Better to get them in, fresh and fast!  It worked the first time anyway - now I just need to do it with a chromosomally normal embryo!

I take 1 Caltrate Plus tablet a day - it has 400iu Vit. D and 600mg calcium.  I got it at Woollies.  Mind you, I recently had a D injection too, because my levels were so low.

As far as the antibiotics go, I only know at this stage (till I speak to Dr M again) that I need to take them to 'cover egg collection and transfer'.  They are "Apo-Amoxycillin/Clavulanic Acid 500/125", one tablet twice daily until finished.  There are 10 tablets, so that's 5 days, so I'm guessing I'll start the day before collection, which should take me up to transfer as well (cause that's usually 2 days after collection for me).

Ok, more details please - what is a paleolithic diet?

The good news for me, is my day 2 FSH was 2 !!!  Not bad for 45 eh?  In fact, I think it's the best it's ever been.  I'm still wheatgrass juicing every day and I think that's doing all sorts of good things for me because I have suddenly realised my aching hips (bursitis) have gone too!   Actually, I finally worked out that the reason I got sudden onset of hot flushes along with lots of heat and itching and a completely screwed up menstrual cycle, was because I went to a new doctor who decided to "tweak" my thyroid medication.  My TSH went from a nice 1.2 to 0.01 almost immediately and that's when everything went wrong.  When I read up on symptoms of HYPER thyroidism (I'm usually hypo), it all made sense.  I had all those symptoms!  So I went to another doctor, got my medication changed back and my TSH has jumped up again.  So this other doctor thinks I was so affected by the whole thyroid situation, that in turn sent my FSH and LH through the roof and that's why it was so sudden.  Shock.  Horror!  I thought I was menopausal!!!  Nice to know things are getting back to normal and I won't have to go through those flushes again - not for some years yet I hope!

So yeah, I'm stoked that all is well and my FSH is so good and Sydney here I come.  Wish we didn't have to go all that way, it's all stressful enough without having to deal with that too. 

(Iolanda, is there any way we could approach someone here in Perth please, to help us in this regard?  Apparently it's not hard to get hold of the IVIg and Intralipid, but we do need someone to infuse it for us.  In the US, they have "infusion centres" and there are a few doctors/nurses over east who do it but all my efforts in Perth to find someone to help me have so far met with a dead end.  It would be so much easier than flying every time we need it.  If I'm lucky enough to conceive in this next transfer, as a result of the IVIg, I will no doubt require more IVIg infusions and that means more trips to Sydney - expensive and stressful!)

Have you girls been reading/participating in the reproductive immunology forum on Yahoo?  If not, I think it may be time.  You'll get a lot of interesting info from there and the girls are really nice and helpful.  Have a look:  http://health.groups.yahoo.com/group/immunologysupport/

Right, best be off. Have a good day and chat soon. x

Hi parent2b,

Thanks for your reply:-).

Paleolithic or caveman (woman...) diet basically cuts out: dairy, sugar, all grains (ie: rice, corn, quinoa, wheat etc etc), legumes/pulses (ie: peanuts, lentils, chickpeas etc etc), potatoes.  My understanding is that it removes many of the things that often start off an allergic-type or immune reaction.  Makes sense that I would do better when on it.  It allows meat, fish, chicken, eggs, nuts (become a staple food), fruit, veges, certains seeds like pepitas, sesame, sunflower.
I found it very difficult to follow in the first week, as you feel like you are missing out on so much, but the benefits then started to become obvious.  I just google for more info and suggested meals.  I lost a couple of kgs but am already quite slim.  Therefore, I will be eating more avocados and bananas and other high calorie foods. 

Qu: to you buy the wheatgrass fresh and ready to juice?  Would the wheatgrass powders be as helpful, or maybe even the barleylife green powders.  I would like to do something in this line.  Thanks for any suggestions.

Just a thought - Churchill Health Centre on Nicholson Rd, Shenton Park - they do chelation therapy and other intravenous treatments.  You may want to give them a call and see whether they would be willing to do this.  Dr Clive Heath and Dr Craig Turner are very compassionate doctors and may well be supportive of helping people in need of this treatment.  Worth a try:-).

Speak soon,

Heather x

Hi Iolanda,

Thanks for trying.  There is certainly plenty of success out there when you start reading about experiences of other women;  i.e. the latest who comes to mind is a women with multiple miscarriage history.  Upon obtaining her most recent positive pregnancy result, she began to spot again (as per previous pregnancies) and her doctor gave her IVIg (3 times) until the bleeding stopped and her pregnancy is now progressing nicely (for the first time).

Flying to Sydney for IVIg therapy cost me $2250.  That doesn't include the hospital costs, the flights, taxis or anything else - purely the cost of the IVIG and the doctor.  However, I saw the doctor for 2 x 5 minutes over the period of 1 hour and yet I was on the drip from approx 3pm to 10pm.  They gave me a bag of saline initially (to hydrate me) and also, another half a bag of saline after the Ig infusion was over.

Other people I'm communicating with have had intralipid infusions (same doctor and hospital) in Sydney for $650.  Having said that, a girl I heard from this morning in Melbourne, was given a script for intralipid which she purchased from the Monash public hospital at a cost of $22 and then she paid $150 as an outpatient at the Monash Surgical Private Hospital.  So, $172 all up.  Very cheap, compared to $650 in Sydney.

I have ascertained everyone else going to Sydney for infusions, turns up at the hospital with their own pre-purchased Ig or Intralipid.  The Ig can be purchased from "Macropharma" at a cost of $840.

All we really need here in Perth therefore, is a nurse who can insert a canula (spelling??) and programme the drip machine.  Then it's just a case of sitting around for a few hours.  The time required would no doubt be the most annoying part for anyone who may be able to help us.  That is why the Sydney hospital only does infusions on the weekends (when beds are available).   

I find it quite annoying that the Perth doctors do not pay any attention to elevated uterine NK cells.  Firstly, they do not have procedures in place to even do the testing to ascertain NK activity and thus they have no interest in accepting it causes implantation issues.  Their standard response to a failed embryo transfer (with good quality embryos) is that you need egg donation.  That is just not true.  If they had taken more interest in the subject of autoimmunity and how it causes subfertility (especially 4.5 years ago when I first started asking for help in this area), I may have been able to have a successful pregnancy by now.  Instead, every embryo transfer I had just made my NK cells more powerful and now that I finally have the support I need (albeit in Sydney) I fear I may have no eggs left. 

I don't want other women going through 7 years of IVF as I have, wasting tens of thousands of dollars and precious eggs, continually being told the same thing - "you need egg donation"!  A few simple blood tests together with answers to some family health history questions, can determine 'the markers' which then determines whether more involved testing is required (as it was in my case).

I found it interesting that the Sydney RI said Intralipid has not been 'proven' as yet, but IVIg has.  He put me straight on IVIg because my NK cell activity is in the "top end".  I've noticed though that he starts younger women with less NK activity on Intralipid first.

My RI also said he would be happy to liaise with anyone I can find in Perth who would be happy to do the infusion for me, to save me the trip to Sydney.  It is likely, if I concieve, that I would need to have another infusion at 6 weeks and possibly again at 12 weeks.

I don't believe we need an immunologist do to this.  Just a nurse, or a doctor who is already familiar with infusions to some degree.

It would be great if you manage to have any success in getting any interest and/or assistance from any of the Perth IVF clinics.  I highly recommend they all read Dr Beer's book.  They could help so many more women and have much better success rates than they currently have.

Thanks for your time and interest.

Hi Heather,

So lovely to hear from you.  Hope the transfer went well yesterday. I am thinking and praying for you. It is late so I am just off to bed but I just wanted to wish you all the best over the next two weeks.

I wish I had some news for you. I have my phone consult to get my results next Thursday with Dr M. By then it will be over five weeks since I had my procedure - didn't realize it would have taken that long to get the results. However once I do I will be starting up my next round of IVF asap.

Trying to be patient!
Good night all. Heather I wish you all the luck in the world.
Angel xx

Hi Angel,

The waiting game is the one thing that gets to me, whether it is waiting for the next step with Doctors or the 2 week wait.

My transfer on Monday was text-book.  DH made it in to be with me, and we were hoping to see the little "shooting star" thingy on the ultra-sound during the embryo transfer, but they didn't get the angle quite right with the U/S. However, two were successfully transferred; the whole process was over with so quickly.  I had an acupucture treatment 2 hour afterwards which was very calming - fell asleep!
I did have some cramping-like action which was interesting, and a gurgly tummy feeling for a couple of days.  This could have been due to the increase in Pred dose to 15mg??

Anyway, yesterday, I had my progress bloods and had Prog of 86 and Estrogen of 362, which are good apparently.  Then we had friends over for dinner, and they brought a yummy sugar/wheat filled dessert!  I was slightly tempted and had a couple of greedy mouthfuls of that and ice-cream.  The problem being that I am absolutely shattered and FLAT today.  Not my normal self at all.  Not sure if it is my ME/CFS flaring up from the dessert, or maybe symptoms of implanting etc with all the hormones.  My basal temps are still high.

This next week is going to be so hard for me as I am more nervous than ever for the Preg Test.  Has the protocol worked?  Am I on high enough doses?  What foods should I be strictly avoiding so as to eliminate any unwelcome immune reactions?

On another note, Dr Matthias has sent me a Lymphocyte Surface markers pathology request to do in Perth.  I am actually going to hold off until after my preg test on Friday, just to see if a month on Pred/Clex has made a difference.  Also, if blessed with a BFP, then it would be interesting to see where the levels are sitting.
Will be thinking of you this Thursday with your Dr M appointment. All the best!

By the way, we have just started up a sister site based on the Yahoo Groups - Immunology Support group... especially for us Aussie girls who are aware of the Dr Beer protocols, but want to talk to people going through it in Oz.  I would love you to join us...only started inviting people last week so conversations should start up soon.  http://health.groups.yahoo.com/group/immunologysuppoz/
Of course, this is not intended to replace this site or others, just another forum to help each other:-).

Speak soon, and hugs to all.

Heather xx

Hi Angel,

We're looking forward to hearing from you.

To answer your question, I don't 'feel' any different, having had the IVIg (nor did I expect to) but then I don't feel bad to begin with.  I can't 'feel' the over active NK cells in my uterus - I just know now, that they are there and they are problem for our healthy embryos - at least, they have been in the past, but let's hope no longer!

Yes, it's very expensive.  I'm trying to find someone here in Perth who can help with infusions, now that I know I can purchase the immunoglobulin for $840.  Fortunately, intralipid is not so expensive.  Mind you, it's all still a drag to have to fly to Sydney just to have a drip stuck in your arm!  It's ridiculous to think we can't find anybody here to do this for us.  How hard can it be?

The good news is, if I get as far as a positive preg test followed up with heart beat detected during the scan, Dr M may even give me an intralipid treatment next time around, instead of IVIg (which would be a big help in the financial department).  I did further immunophenotyping testing a few days ago because it is almost 6 weeks since I had the IVIg.  Unfortunately my last ICSI cycle was cancelled - long story!  So I've just started again.  Dr M said the IVIg effect will last up to 3 months so that's why we did some more blood tests.  I guess he's happy enough with the result considering he's talking about the possibility of intralipid next time around.

Look forward to hearing from you soon. x