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Thread: Immunology Testing

  1. #91

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    Jan 2009
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    Melbourne
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    Default

    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. Reason: to add day of testing

  2. #92

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    May 2009
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    Melbourne
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    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

  3. #93

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    Apr 2009
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    Melbourne
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    Samandpoppy - did you have to not be trying to get pregnant ie not be on an ivf cycle before you could have the biopsy?

  4. #94

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    Aug 2006
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    Melbourne
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    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?

  5. #95

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    May 2009
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    Melbourne
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    Default Dr Matthias Dr S help

    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.

  6. #96

    Default

    :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.

  7. #97

    Default

    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.

    Good luck x

  8. #98

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    May 2009
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    Melbourne
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    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?

  9. #99

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    Jan 2009
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    Melbourne
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    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).

  10. #100

    Join Date
    May 2009
    Location
    Melbourne
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    Default Monday Heyburn

    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.

  11. #101

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    Jan 2009
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    Melbourne
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    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

  12. #102

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    May 2009
    Location
    Melbourne
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    18

    Default Good advice

    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

  13. #103

    Default

    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
    Last edited by matilda2; July 3rd, 2009 at 05:54 PM.

  14. #104

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    May 2009
    Location
    Melbourne
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    18

    Default NK help in Melbourne

    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.

  15. #105

    Join Date
    May 2009
    Location
    Melbourne
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    18

    Default Nk therapy ala First World in Melbourne

    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

  16. #106

    Default Dr Mathias Sydney

    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.
    Last edited by matilda2; July 3rd, 2009 at 05:45 PM.

  17. #107

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    May 2009
    Location
    Melbourne
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    Default

    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 !

  18. #108

    Join Date
    May 2009
    Location
    Melbourne
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    18

    Default P.S.

    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.

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