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  1. #41
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    Quote Originally Posted by Lillac View Post
    Hi Rachel this is just a suggestion -
    The Endo biopsy I did in the cycle before my last transfer - it took 10 mins and easy procedure. It's supposed to aid implantation by injuring the Endo causing extra blood flow. Theres some research studies about how this helps embies to stick. My FS also sent the endo sample to get tested for NK cells and got negative result back within about 1 week.
    If you can wait another cycle before stimming again then this worth a try.

    I have heard great things about Matthias- there is a whole thread dedicated to him on BH. I also had an appt but cancelled when I fell preggo.
    I don't want to wait a cycle just in case it has nothing to do with NK cells. We would like to grab every opportunity we can and this will add to proving to us and to our FS that a basic cycle doesnt work with us. My FS doesn't know about my appt. with Dr Matthias yet but I will let him know (not really asking for his approval). Yes I have read great things about Dr M. so would really like him to perform it rather than my FS.

    I had an appt last year with Dr M. but cancelled cause I found out I was preggo's with the twins. Can't believe I am trying to see him again
    Last edited by Rachael3; 10-05-2013 at 05:32.

  2. #42
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    Hi Rachel,
    I too have followed your story for a long time and was heartbroken for you when your beautiful babies were lost. I'm so sorry I didn't say anything at the time, I was lurking on BH and not posting.
    Baby aspirin (if you require it) is taken from day 1 then you must stop it the day before EPU. ie. last one on trigger day, none day before EPU, then resume day after EPU. My new fs had me resume it from evening of EPU this cycle. To be honest I've been so desperate that I've taken baby aspirin even when not cycling to give me a chance. Many people take it for heart issues everyday for their whole life, I'm not advocating it for your situation, but I think as long as you are aware that it's a blood thinner so if anything happens to you like an accident where you go to hospital or cut yourself you need to tell people/doctor. But as i am on mega doses of clexane when cycling, a much stronger blood thinner, aspirin seemed mild to me. I have a major blood clotting genetic mutation (most severe strain of mthfr) so i figured it was worth the risk. I have even consulted a doc in the USA about my mthfr to make sure I am taking the right supps as I have the most severe form (homozygous c677t, which means 2 copies of c677t, on both DNA strands). All the people in my family have now been tested as it's genetic and an indicator for stroke, dementia, etc and you can take high doses of B vitamins to try to correct it's symptoms. My mutation means my body will not absorb normal folic acid, not even the megafol that lots of ladies take, it just gets trapped in my system. I have to take activated folic acid and ship it in from the US as I am missing the enzyme that breaks down normal folic acid therefore I need to introduce it to my body one step down the chain where I don't need the enzyme to break it down. I even had a many months break last year to make sure my body had adequate levels of folic acid for a baby as I was paranoid (while i skyped this mthfr expert in the US as not many docs in aust know much about it and some still think I'm crazy going to such lengths). But i am my own proof as being on all these high doses of supps has helped me get off antidepressants which i had needed for years (other issues associated with mthfr can be brain/mental issues) and i am so much healthier for it. I'm not over the line yet but believe I have only had 1 chem due to immune issues all along. Unfortunately I am now faced with egg quality issues after trying so long and putting good embryos back without the right immune therapy, but thankfully my current cycle is looking more hopeful now that I have a new fs and i too am a new dr M patient. I phone consult dr m from brisbane. I also have extremely high nk cells in uterus & blood. Sorry if this is all too much info, I don't talk much about mthfr as many docs have different opinions and i don't want to upset anyone, and lots of ladies have delivered healthy bubs on megafol, but I'm a bit of an info freak and once I had researched it I couldn't 'unknow' it if you know what I mean. I ship lots of supps from the USA as it's cheaper for mega doses, but all in all it costs me a fortune and I must rattle with all I take!
    If you think you have immunology issues pop on over to our thread in the Reproductive Immunology section (outside of this ivf section). The nk killer cells thread. Have a read back through it as there are ladies there with a wealth of info.
    Thankfully my fs works hand in hand with Dr M and if you're interested you can go back a few pages on the thread and read about my experience (warning - it's mammoth and I get major verbal diahhrea all the time lol).
    Best wishes to you finding out what you need, I'm no expert, just a lay person who reads an extraordinary amount and is a bit obsessive. I truly believe if I had not pushed really hard for testing I would be even further away than I am now from the right treatment protocol - which i realise may still need to be tweaked from seeing other ladies go through it. Immune treatment is tough compared to normal ivf, but my options of donors/surrogacy/adoption seem a hell of a lot tougher and while my own eggs are still in existence I will keep trying.
    Best to you x

  3. #43
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    Ps - a lot of people start on the bondi protocol before delving right into immune treatment and get over line with it, some without proof of nk cells yet as like you the proof is not there yet. It's clexane + prednislone. Clexane to thin blood (in my case a higher dose with mthfr as I can get little blood clots in uterus/around placenta which can hamper blood flow around embryo, but is also prescribed for nk cells alone), prednislone (steroids) to calm immune response. Perhaps no harm in asking your fs what he thinks about adding it while you wait for results to come back?
    Last edited by lissyloulou; 10-05-2013 at 07:57.

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    Rachael3  (10-05-2013)

  5. #44
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    Sorry if it seems irresponsible to others for me to say above things, I am obviously not a doctor, I just see how much you are hurting (and know what it's like to be desperate for info) and want to give you any info you might be able to ask your own doc about as you had mentioned feeling silly asking for things if you didn't know what they are for.
    Also if proven immune issues, or you just want further info there is a great book by the pioneer of immune issues in the USA you might be interested in - Dr Alan Beer, 'Is my body baby friendly'
    Last edited by lissyloulou; 10-05-2013 at 08:01.

  6. #45
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    Quote Originally Posted by lissyloulou View Post
    Hi Rachel,
    I too have followed your story for a long time and was heartbroken for you when your beautiful babies were lost. I'm so sorry I didn't say anything at the time, I was lurking on BH and not posting.
    Baby aspirin (if you require it) is taken from day 1 then you must stop it the day before EPU. ie. last one on trigger day, none day before EPU, then resume day after EPU. My new fs had me resume it from evening of EPU this cycle. To be honest I've been so desperate that I've taken baby aspirin even when not cycling to give me a chance. Many people take it for heart issues everyday for their whole life, I'm not advocating it for your situation, but I think as long as you are aware that it's a blood thinner so if anything happens to you like an accident where you go to hospital or cut yourself you need to tell people/doctor. But as i am on mega doses of clexane when cycling, a much stronger blood thinner, aspirin seemed mild to me. I have a major blood clotting genetic mutation (most severe strain of mthfr) so i figured it was worth the risk. I have even consulted a doc in the USA about my mthfr to make sure I am taking the right supps as I have the most severe form (homozygous c677t, which means 2 copies of c677t, on both DNA strands). All the people in my family have now been tested as it's genetic and an indicator for stroke, dementia, etc and you can take high doses of B vitamins to try to correct it's symptoms. My mutation means my body will not absorb normal folic acid, not even the megafol that lots of ladies take, it just gets trapped in my system. I have to take activated folic acid and ship it in from the US as I am missing the enzyme that breaks down normal folic acid therefore I need to introduce it to my body one step down the chain where I don't need the enzyme to break it down. I even had a many months break last year to make sure my body had adequate levels of folic acid for a baby as I was paranoid (while i skyped this mthfr expert in the US as not many docs in aust know much about it and some still think I'm crazy going to such lengths). But i am my own proof as being on all these high doses of supps has helped me get off antidepressants which i had needed for years (other issues associated with mthfr can be brain/mental issues) and i am so much healthier for it. I'm not over the line yet but believe I have only had 1 chem due to immune issues all along. Unfortunately I am now faced with egg quality issues after trying so long and putting good embryos back without the right immune therapy, but thankfully my current cycle is looking more hopeful now that I have a new fs and i too am a new dr M patient. I phone consult dr m from brisbane. I also have extremely high nk cells in uterus & blood. Sorry if this is all too much info, I don't talk much about mthfr as many docs have different opinions and i don't want to upset anyone, and lots of ladies have delivered healthy bubs on megafol, but I'm a bit of an info freak and once I had researched it I couldn't 'unknow' it if you know what I mean. I ship lots of supps from the USA as it's cheaper for mega doses, but all in all it costs me a fortune and I must rattle with all I take!
    If you think you have immunology issues pop on over to our thread in the Reproductive Immunology section (outside of this ivf section). The nk killer cells thread. Have a read back through it as there are ladies there with a wealth of info.
    Thankfully my fs works hand in hand with Dr M and if you're interested you can go back a few pages on the thread and read about my experience (warning - it's mammoth and I get major verbal diahhrea all the time lol).
    Best wishes to you finding out what you need, I'm no expert, just a lay person who reads an extraordinary amount and is a bit obsessive. I truly believe if I had not pushed really hard for testing I would be even further away than I am now from the right treatment protocol - which i realise may still need to be tweaked from seeing other ladies go through it. Immune treatment is tough compared to normal ivf, but my options of donors/surrogacy/adoption seem a hell of a lot tougher and while my own eggs are still in existence I will keep trying.
    Best to you x
    Wish I didn't have a story to follow but I'm sure we all feel like that at some point. Your journey sounds tough as well sorry to hear about your findings and hope it all works out. I now remember mentioning to my FS about Asprin and he said I didn't need it. I think b/w my two FS's and Ob they have done all tests and have been cleared including blood clotting disorders except for NK cells. You said to take Asprin if required. I'm not sure if I require it but I just want to try something different, wondering if that's reason enough or it will have an adverse effect? If if doesn't affect the qty and quality of my eggs then maybe I should try it for this cycle. I think it thins blood so there is better blood flow to the uterus?

    Looking forward to meeting Dr M. Went to the office myself to hand in the forms
    Last edited by Rachael3; 10-05-2013 at 08:04.

  7. #46
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    Quote Originally Posted by lissyloulou View Post
    Sorry if it seems irresponsible to others for me to say above things, I am obviously not a doctor, I just see how much you are hurting and want to give you any info you might be able to ask your own doc about as you had mentioned feeling silly asking for things if you didn't know what they are for.
    Also if proven immune issues, or you just want further info there is a great book by the pioneer of immune issues in the USA you might be interested in - Dr Alan Beer, 'Is my body baby friendly'
    lissyloulou thanks so much for taking the time to hear and help me out. Thanks for explaining clexane and the steroid. I think that's what I will ask for first and if he is really against it try the Asprin. I wish I can help you but you seem pretty covered with information so all I can offer is my support. I agree with you re: doing all you can before considering donor eggs or adopting. So glad you have taken charge you're an insperation.
    Last edited by Rachael3; 10-05-2013 at 08:13.

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    lissyloulou  (10-05-2013)

  9. #47
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    Quote Originally Posted by Rachael3 View Post
    DH said I have been tested for blood clotting disorders and it came back negative (can't remember all the tests I've done). Interesting about your last comment, goes to show a 2nd embryo helps the other to implant.
    I should add. Both times I had a bfp I had a d&c just prior to cycling. This time they are doing a Scratch. Good luck

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    Rachael3  (10-05-2013)

  11. #48
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    I take baby aspirin after every transfer, can't hurt! It's over the counter and nothing says to avoid it so you don't even need your doctors permission.

    My sister also does the clexane and prednisolone even though she has never been shown to have NK cells or a clotting disorder, she just likes to cover her bases. I wouldn't ASK your FS, I would TELL him that you'll be adding this next cycle. Only catch with pedisolone is it might make you feel tired and bloated, and you have to wean yourself off the dose not just stop cold turkey.

  12. #49
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    My personal view is aspirin does no harm, just need to make sure you are off it for surgery ie. EPU and that the doc is aware. I even know people who haven't done ivf who took it after miscarriages and swore by it. I guess it's a personal call though on what you're comfortable with.

    Sorry I got way off track on the mthfr thing!! Oh well, maybe someone else will stumble across it if they need it one day. I feel a bit embarrassed for going on! Guess I needed to write it all down myself.

    I hope I didn't offend you saying I had followed your story. To be honest I've followed a lot of people's story's, as in from seeing them cycle, to a positive test, then onwards, and wished I was them as I've never had a positive test. I stopped posting on BH as i always felt so left behind and would live vicariously (not sure if right word) through reading about others when I had nothing of value to write. My only chemical I was bleeding before the test, had accepted it was over and no idea until days later, so never experienced a positive test.
    I really was so shocked and sad for you, I can't imagine the pain and only pray and hope you find a way to achieve your greatest desire to have children soon.

  13. #50
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    Quote Originally Posted by lissyloulou View Post
    My personal view is aspirin does no harm, just need to make sure you are off it for surgery ie. EPU and that the doc is aware. I even know people who haven't done ivf who took it after miscarriages and swore by it. I guess it's a personal call though on what you're comfortable with.

    Sorry I got way off track on the mthfr thing!! Oh well, maybe someone else will stumble across it if they need it one day. I feel a bit embarrassed for going on! Guess I needed to write it all down myself.

    I hope I didn't offend you saying I had followed your story. To be honest I've followed a lot of people's story's, as in from seeing them cycle, to a positive test, then onwards, and wished I was them as I've never had a positive test. I stopped posting on BH as i always felt so left behind and would live vicariously (not sure if right word) through reading about others when I had nothing of value to write. My only chemical I was bleeding before the test, had accepted it was over and no idea until days later, so never experienced a positive test.
    I really was so shocked and sad for you, I can't imagine the pain and only pray and hope you find a way to achieve your greatest desire to have children soon.
    No you didn't offend me. I read other people's stories and see there name come up but you don't think people follow yours. I don't join the month threads for the same reason but I don't mind sharing the result. Thanks for noting to advise FS re: Asprin I might have done it without his knowledge. It's important to share your experience so don't feel bad, we all have stories to tell...some of us have longer stories than others.

    Have you tried transferring 2? I really believe one helps the other.


 
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