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
Last edited by Samandpoppy; June 21st, 2009 at 09:18 PM.
: to add day of testing
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.
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.
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.
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?
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?
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?
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 - 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).
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.
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!!!
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.
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?
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
Last edited by matilda2; July 3rd, 2009 at 05:54 PM.
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.
!!!
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