Immunology Testing

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

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.

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

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

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

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 :D
Danyelle

NK cell b/t is done during cycle 23-26 from memory and you don't need to fast. Its only two vials of blood so not too scary comparing to other immunological testings...

Uterine biopsy test is done during the smiliar cycle days and I am not sure how PCOS will affect the dates...good luck.

:

---

NK cell b/t is done during cycle 23-26 from memory and you don't need to fast. Its only two vials of blood so not too scary comparing to other immunological testings...

Uterine biopsy test is done during the smiliar cycle days and I am not sure how PCOS will affect the dates...good luck.

---

So, when you say CD23-26, is that really 9-12DPO? I don't usually O until CD16-18 so CD23-26 would be earlier in my LP than if I O'd CD14. Or is that what you're referring to when you say you don't know how PCOS will affect the dates? (Not that I have PCOS.)

I'm under the impression that it's the DPO that's important, not so much the actual cycle dates.

Having PCOS can have an impact. I have PCOS so severe that I do not have a cycle at all. We just had to test on a random day as it's a lot of effort to go through to force my body to ovulate just for a test. If you have PCOS and still have a predictable cycle, then you should be ok. Otherwise Dr S will just do what he did with me.

BW

Sorry I should have been clearer I guess, I assumed that everyone has 28 day cycles...;)

NK cells are most active a week prior to your next menstral cycle, so if you do have a regular cycle, work it back about a week, that is the range you are most likely to have your NK cells done. So if you don't O until CD 16-18, I would assume you have a cycle of 30-32, then it will be around CD 25-30. HIH.

Just realised I forgot to add one thing - If the biopsy is necessary and you have no cycle, then they will need to induce ovulation for it to happen. It's only the bloodtest that can be done randomly in the absence of a regular cycle.

BW

Ok, Now I'm really confused. :confused:

What does CD and DPO and HIH mean ? I know its abbreviated but its not on the list. Sorry for sounding stupid. :redface:

With PCOS my cycles can be anywhere from 29 days to 48 days, I am all over the place.
My last two FET cycles, I ovulated around day 28 & 30 (with the help of a trigger injection of Pregnyl) and The full cycle were 41 & 43 days. :rolleyes:

From what I understand the Biopsy and Blood tests are done 1 week prior to your next menstral cycle. Is that right ? Do they monitor you with blood test prior ? So you don't miss out. ?

So I don't need to fast for the NK cell b/t.
Do I need to fast if I'm having the immunological testings ??

Does my DH have to do any tests ?????????
With our FS he has done Sperm DNA Tunel Assey and analysis.

Thank you ladies for your wonderful advice.

CD = cycle day.
DPO = days past ovulation.
HIH = hope it helps.

You could probably ask them to track ovulation for you in order to have the tests at the right time, never hurts to ask but I've got no idea what they may decide to do. Don't you just hate the way the world assumes all women run like clockwork? :rolleyes:

As for the other immunoligical tests - I remember a scary number of vials (13 or so, I think) and it was fasting and could only be done on certain days. It goes through your regular pathology collection centre and I don't think it matters what part of your cycle you are in. It's been a while and the brain is a little foggy now. The NK cell test is done only through St George hospital.

BW

Thanks BW for your information.

Greatly appreciated.
♥
D

Hi Ladies, :hello:

I have some more questions.

1/ When you do the blood test for Immunology and for NK Cells. How long does it take to get the results. ????

2/ When you do the Uterine Biopsy test, how long does it take to get the results ?????

3/ Does DH have to do any tests ???????

Sorry to ask, its just that my cycles are sooo long that I want to try and get a fresh IVF in before the end of the year.

Thank you in advance.
♥
Danyelle

:help:

Can someone please answer the above questions for me.

thank you

:)

I recently did blood testing for NK cells in Sydney. I was sent to St George Hospital which has a pathology lab that specialises in this. It was bulk billed.

The blood testing takes place on a Tuesday or Thursday of each week and as other people have said should be done after cycle day 21 up to the start of your period as this is when NK cells rise. I think the date of testing is more crucial for biopsy rather than the blood test.

The results came through in a matter of days. I am a patient of IVF Australia and although not seeing Dr Sacks myself my case was run via him as the NK protocol is his.

Depending on the results of your blood test you may need to have the biopsy - it was explained to me a biopsy is only necessary if blood tests are borderline. As my levels were high (21%) there was no need for further testing.

I was treated with prednisolone (a steroid) from retrieval and clexane and asprin from transfer. Unfortunately this cycle didn't work so I am currently seeking info on adding intralipids into the next round. It seems in America intralipid transfusions have now replaced iVIG as the treatment of choice.

To add further confusion it seems Doctors around the world are split on NK cells with many not believing they are a factor in implantation problems.

Good luck! And please pass on any info my way too.

Hi Constance2

Sorry I took so long, I've been away.

I did really get a lot out of Dr Sher's free consult.He is awesome.I too don't look forward to the disruption of leaving OZ for treatment. So I went on to actually struggle through getting intralipids here.

After quite a journey, I am (I believe) the first woman in Australia ever to have an Intralipid infusion. E-mail me at the address in one of my posts and i will happily provide you with the name of the specialist in Melbourne. It was a smooth and side effect free experience.It was no where near the $ 5000 cost of IVIG it is NOT a blood product and as anyone who is watching the rest of the world battle NK activity knows...quite effective. You will have to be a cash payer but the IVIG is the same. Nothing is medicare refundable but in the long run, if you do 2 or 3 cycles with intralipid and pay for the infusion, It's a lot cheaper than 6 or 7 or more IVF cycles both financially and in dissapointment and heart breaking BFN results.
So girls, if prednisolone has been a bad drug for you and you're looking to se what the rest of the world knows...look into it as an option for you.
A scientist friend of mine said it (intralipid infusion) acts as a 'lure" for the killer cells..They're so distracted by the infusion that they leave your embryo alone to live and grow.
It is not guaranteed but if you do your research you will see how amazingly it works without the hideous side effects of prednisolone family drugs. Startling good success rates.

The specialist is great too.Bright, did the homework and was really spot on with why and how it's used.I can not say enough good things about this doctor.She is not an IVF doctor but has a good grasp of the intralipid role in knocking down the NK activity.


I AM OVER THE MOON KNOWING i FINALLY HAVE A GHOST OF A CHANCE AT MY SHORTLY UPCOMING TRANSFER...

Hugs to all struggling with this unpleasant NK stuff. There is hope in Australia .

Holymoly ( exactly how I feel but in a good way now) :D

Hi holymoly
Thanks for the response.

Great news about the intralipids. Defintely sounds like a step in the right direction. How long before the transfer did you have it done.

I would love to email you but cannot find your email address.
Let me try again.
Constance

Hi Constance,

The big ones say it's best to have the infusion 7-10 days before transfer/ovulation.There are a few who say 5-10 days before. I did mine 6 days before.

It's safe to have an infusion monthly after a BFP and is a good idea till 20 weks,At that point the baby s strong enough to be safe from the killers.They're bullies picking on small ones...

Dr Carolyn Coulam who is the pioneer in this field (was the dirctor for Intralipid infusion at SIRM-Dr Sher's clinics) says the intralipids have a 28 day half life of working so really could be twice 28 days protction but she said to do another infusion ASAP after a BFP then have blood checked to see at what level thy are and usually do 2monthly infusions more up to 20 weeks.So that's 4 total 1 at 7-10 days before transfer/ovulation-2 nd ASAP a BFP- 3 month later-4 one month after that. Voila 20 weeks -safety zone.


pinklinefever at yahoo dot com

Really happy to help. I just noticed you've had 20 cycles ! You must be a very strong person. I was a mess after 2 ! Good thing I was so upset or I never would have gottten here.
Hopefully this will be a good thing for you.I do know one thing...it can't hurt.
Hugs 2 U C2

Hi holymoly

Thank you so much for the information, I will definetely email you for further details.

You are right it does not hurt so I will be pursuing this. I am surprised you are not on the steroids, normally they suggest staying on them.
Yes 20 cycles I dont know life without ivf. It has been 7 years of constant cycles.

I guess I foolishly kept thinking maybe the next one. Since no one ever found anything wrong with us.

I will email you with further questions anbout your doctor.
thanks again.
constance

Hi C2,

Hi C2,

I don't think 20 cycles is foolish at all..hope is necessary in the IVF game.It sounds like you have a doctor you like and have naturally gone along with medical advice as anyone would have.

How you're still sane is amazing to me. You must be a special person.

The esteemed Dr Sachs who has worked miracles for a LOT of women uses steroids mainly I hear .It has worked for man many women .I have heard many nice things about him and bellieve them all.In fact I had an appointment with him thinking if anyone was using Intralipids in Australia it would be him. I asked his nurse and heard about the prednisolone. I had to cancel.I felt it was pointless to spend all of that money and not to be able to folow his advice was dumb.

I was on it many years ago for something unrlated. I had heart palpitations,serious intra ocular pressure and a few other hideous side effects.I see a lot of women are dong it tough on them but it has worked for them. I was told not to evr take them again if I could avoid it.I did not have a heart condition and do not now but passing out and being in an emergency department for a suspected heart attack was terrifying. I also now have to wear contacts as my vision was severely impared permanently .To go from perfect vision to needing a seeing eye dog if I am without contacts, not good. The weight gain and acne, anger, rage, just crap was not fun but when the really bad stuff kicked in I had to get off of them.
Up to 10 mg per day is fine over that and nothing doing here.Some doctors who prescribe intralipids use 10 mg of prednisolone and some leave it out completely. There is no study available that shows both being used.It would kind of be like turning all of the lights on in a room (intralipids) and still bringing a torch to read by just in case(steroids) out of habit.

Look forward to hearing from you.
:D

Hi Everyone,

I am very excited to have found you all here in Aus.

HolyMoly I have just emailed you to find out about your research so far, and am really looking forward to hearing more.

Is a side effect of Intralipids weight gain? (I have enough weight on already!)

How much IVIG did you get for $5k? and Did your GP give you a referral? Who to?

Looking forward to hearing more

Eman

Hi HolyMoly,

I'm really interested to know who the Melbourne doctor is who does this??

I have secondary recurrent miscarriage and this is meant to be an effective treatment, but my doctors don't know anything about it. When I asked about it they gave me a response like I'd just said can I use Reiki and colour therapy. At the moment my only option is heparin, but I've read studies saying IvIG (or the synthetic form Intralipids) is more effective than heparin and aspirin. Are there any doctors in Melb who'd even consider it?

TT.

Hi HolyMoly,

I'm very interested in exploring intralipid treatment too. I will have a go at emailing you (just joined up so I could do this).

Cheers!

I may have just answered your e-mail . If that wasn't you, the direct address is
pink line fever at yahoo dot .... al one word.

I'll tell you what I know and that should get you where you're going.
There are actually now 2 providers that I have personally used in the Melbourne Metro area.

The second one is a colleague of the first awesome specialist and was as great to work with.

Both do Intrlipids now. They both previously used IVIG to treat for other things so are quite up to date as far as immune issues...not so much in the IVF /infertility world but are both up to it now.:clap:
I was the first for both and it was easy peasy...no problems for me at all so should be a breeze for you if you need it.

Thanks Holymoly - yes, just to clarify, I was the one who emailed you. Good to talk to you tonight - I appreciate your help.

Hi there,
I just wanted to bump this thread. I'm not sure if anyone out there still reads this one, but I've just flicked though Dr Alan Beer's "Is your Body Baby-Friendly?" and was so interested to read about all this complex immunology stuff, and sort of don't know where to begin.
Does anyone know where to get a standard immunology work up?
I'm also specifically interested in the treatments involving "anti-TNF agents" (because I have endo, and poor eggs, and apparently this treatment sort of "heals" eggs within around 18 weeks, pages 116-118 if you've got the book).
Can anyone recommend an FS in Melbourne who's open to these ideas? Or are they (the ideas) dodgy?
Cheers,
WW

Hi Worrywart,
There is an old thread on BB where lots of us have listed the names/codes for the immunological tests (which include failure to implant). See here https://www.bellybelly.com.au/forums...g-implant.html
I hope this helps some, I think it is very worth while getting done, it made the difference to my protocol and lead to a BFP after 7 transfers.

Best of luck to you xx

Thanks so much Baby Dreamtime. I really appreciate it. It will help. Sometimes it's overwhelming, thinking that you need to know all this new stuff, and ask your FS about it, but really, knowledge can be powerful and if that's what makes the difference, the sooner I know, the better.
Glad to hear about your BFP too.
WW

Hi, I am not sure if anyone is still reading this thread, but I would really appreciate some information. I have a positive ANA test of 1:80, which was tested for something else. I know that this is a weak positive, but I am worried about the impact on TTC. Does anyone have some more information? Do you think this is reason to worry or not really, as it is only a weak positive.

Thanks for your answers in advance.

Hi,

My FS told me a low positive is not anything to worry about, only medium or high titre is worth treating. If you are really worried see an FS or take a low dose aspirin eg Cardiprin while TTC.

Thanks hopefulone! That makes me feel better. We are going to wait another month or two and if no luck see a FS. Fingers crossed we don't have to :crossfingers: