I'm not sure if anyone would be keen to join a secret/totally private group on Facebook devoted to reproductive immunology support. I'm happy to create it if there is some interest. I am finding the BH threads so hard to keep up with these days.
I know there are pros and cons to both but I just thought I'd put the feelers out. I won't be at all offended if the idea gets shot down! I certainly don't want anyone without fb to feel left out, nor am I suggesting abandoning this thread.
I just had a look and you can create a secret group where only members see the group and the posts in it. It would be totally private and no one on your fb would know you were a part of it.
Let me know what you think and if a few of us are keen I'll set it up.
Results 131 to 140 of 941
28-05-2013 12:22 #131
28-05-2013 12:32 #132
Bella - sounds like a great idea. I am keen. We have one of these groups set up for grade 1 mums at school and you don't even need to accept individual people as friends first to be able to join. So yes it is completely confidential and separate from normal facebook. I guess we would still need to make sure that we post all the important immune related treatment protocols, pregnancies etc. on here so that the help we have all found on this thread continues to help others.
28-05-2013 12:33 #133
Apologies for the multiple posts girls but for some reason everytime I use my computer instead of the Ipad I am unable to use the return button. If anybody knows how to fix this please let me know.
28-05-2013 12:40 #134Senior Member
- Join Date
- Mar 2013
Bella I would be happy to join as well. I'm in a few secret groups and they are great agree that we all need to hang around here too so this support network continues for newbies!
28-05-2013 12:41 #135
B123 - Great follicle numbers. All the best with your EPU. Thanks again for letting us know about the webinar hosted by SRIM tonight. I just need to figure out what time it will be on here in Australia. Lissylou- I have had cramps will all my pregnancies, including my successful one with DS. Rest up and try to take it easy. I know it is easier said than done. Hoping you are feeling well following your Intralipid therapy yesterday Flowers, Good Luck for your blood test on Friday. Sending you lots of sticky vibes. Festivalgirl - I have been reading back over some of the earlier posts trying to make sense of some of my results. I think I noticed that you had high TH1/TH2 Intracellular Cytokine Ratios as well. I was just wondering if you had your LAD's (Leukocyte Antibody Detection Panel) tested as well and if so would you mind letting me know what they were. Just trying to compare my crazy body with others and check that I have been given a similar immune protocol as others. Hi to everyone else.
The Following User Says Thank You to Hope06 For This Useful Post:
28-05-2013 12:46 #136
Yes I totally agree with keeping this thread active, without it many of us would not have the knowledge we now have and it is so important to me (all of us, I'm sure) that as many new ladies as possible who need this immune treatment can easily find this info!
The Following User Says Thank You to Bella978 For This Useful Post:
28-05-2013 13:09 #137
i don't have facebook
but would totally understand if you wanted to start your own group over there....i'm a bit old school with technology and it won't let my husband & I join as a family together. we've held out til now as we individually are not really into being in touch with random people from our past and then if we become friends with people, and others see your name (that you have no interest in being in contact with) and friend request you have to reject them. it's just never appealed to be honest. maybe i will join one day, maybe even just to be a part of your group! i kinda don't want another thing to check in on though, like it would be doubling up, but then if you already have facebook you are already checking into it to begin with!...not sure how it would be better than catching up on here, but then i don't do facebook so wouldn't know the benefits! tell me what would be better about it if you like, so i can understand
28-05-2013 13:09 #138
Definately keen Bella - I can thank this thread for my BFP!!! I'd have never got this far without you ladies and dr M's protocol as most of our FS are not on the bandwagon with identifying immunology issues!!!! I do know its a combination of everything (fertility treatment and immunology protocols) to get this far and cant thank the bub hub forum and members enough!!!!
28-05-2013 13:10 #139
Ok ladies, an update from my phone consult with Dr M last night. On top of the immune issues that I posted yesterday, I also have extremely low LAD's. When I first looked at these I thought it was good that they were low but apparently not. Dr M explained that these results are obtained by mixing DH's blood with mine and then measuring the camouflaging proteins that are generated. Flowcytometry (negative). [T-Cells] IgM+ (8.2). [T-Cells] IgG+ (4.2). [B-Cells] IgM+ (2.6). [B-Cells] IgG+ (7.3). Dr M said that each of these levels need to be at least a minimum of 10 and ideally much higher to sustain a successful pregnancy. He explained that the camouflaging proteins generated to cover the embryo need to be at a high level in order to allow the immune system to recognise the embryo as a pregnancy and give it a free pass to reside in the uterus. Anything under 10 means that the embryo is able to be seen by the TH1/TH2 cells and therefore will be attacked by the body as the body recognises it as too similar to self. I hope I have explained that correctly. Dr M has recommended that to treat my immune issues I need to have IVIG - 7-10 days prior to transfer, Clexane - 60mg, commencing 2 weeks prior to cycling, Dexemethasone (not sure of dose yet), High level progesterone, Antibiotic treatment - 5 days prior to transfer (not sure of type yet) and ideally LIT treatment. He has suggested that I have a go at doing a cycle without the LIT treatment but if I don't get pregnant then will need to commence LIT treatment for some time prior to cycling again. I have had a look in the Dr Beer bible and am worried because he suggests that for my type of immune issues, LIT, IVIG and humara are a must and that these treatments should commence 17.4 weeks (I think) prior to conception. Anyway, I guess after seeing so much success on this thread with doing what DR M suggests, I guess I just need to go with what he has said and hope for the best. At the very least, we now have some concrete answers as to why we have not been able to have our second baby. Just would have saved a lot of heartache and money to figure this out sooner. Oh well, time to be positive now and move forward. Also, interestingly although many FS try and push people down the donor path when they get to our point, donor eggs do not overcome these immune issues as this has something to do with the fathers sperm being similar to the mothers code. We don't have DH's DQ alpha results back yet but I am almost certain they will be a match.
28-05-2013 13:15 #140
Oh and I forgot to mention that Dr M said we can get the LIT treatment done in Sydney, which is a huge relief as I don't even think you can get it in America. I was thinking we would have to fly to Mexico or something to get it. Ok, enough of my clogging the thread today, better get back to work
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