Also, for a quick fix ask about upping prednisone to 30mg, that can help w/NKs (not as much as IVIG but it's something).  Also add fish oil, that suppresses NKs as well.  Kwak okayed 4g/fish oil/day for me, even with the Lovenox & aspirin.  
<br/>
<br/>It'd be better of progesterone is higher.  Add oral prometrium, helps progesterone to some extent but also suppresses immune system.  Might want to consider PIO as well, it can't hurt (well, except for the needle kind of hurt).
<br/>
<br/>

What a ....................................

What a heartbreaking story. I had one son then had 4 consecutive losses, 1 at 12 weeks and 1 at 17 weeks. Great growth and heartbeats until babies' heartbeats just stopped. I went to Braverman and did Neupogen and just had my 2nd son in November. Our only immune issue was 5 HLA matches although my TNF did spike during pregnancy and was treated with pred. Ill never know for sure Neupogen was the magic answer but sounds like something different to try in your case, since everything else has failed.
<br/>
<br/>Emily
<br/>
<br/>--- In immunologysupport@yahoogroups.com, Catherine Berg wrote:
<br/>>
<br/>> Hi ladies,
<br/>>
<br/>> I am brand new to this group.  I have been reading people's stories, and the loss, sorrow, frustration you have all been through.  There aren't words...
<br/>>
<br/>> A brief history about myself:  I am extremely blessed to have an 8 1/2 year old son, a 6 1/2 year old son, and an almost 5 year old daughter.   Since I had my daughter, I have lost 6 babies.   My first loss was at 12 weeks, and then a boy at 16 weeks.  We waited about 6 months to try to conceive again, and conceived identical twin girls.  We were beyond thrilled and overjoyed to have 2 babies coming.  Everything looked 'perfect' at 13 weeks.  I was on 40 mgs. of lovenox, prednisone, and progesterone during this pregnancy.  I lost the first baby at 16 weeks.  My little Lucy made it to 20 weeks 5 days, but she sadly passed.  I had heard her heartbeat 2 days before she passed.  I delivered them both in the hospital.  The pain and sorrow leaving the hospital empty without my babies in my womb or in my arms was unbearable.
<br/>>
<br/>>
<br/>> After, I lost my twins, I heard of Dr. Kwak-Kim, and pursued going to her as soon as possible.  I was desperate for answers.  It doesn't make sense to me why I had 3 children. no problem, and now I can't carry a baby to term anymore.  I went to Dr. Kwak-Kim November 2011.   I was extremely impressed with her staff, and her as a doctor.  She is so kind and attentive, and extremely brilliant.  She found that I have poor blood flow to my uterus, as I have 4 genetic clotting disorders.  I am heterozygous for MTHFR, PAI-1, HPA-1, and homozygous for Factor XIII.    She also found I had Polcystic Ovaries.  She gave me a protocol of lovenox 30 mgs. twice a day, prednisone, baby aspirin, progesterone, vitamin e, vit. d.,  metformin, and folgard.  I also had a laperoscopy a couple months after seeing Dr. Kwak, where the Dr. removed stage-I endometriosis.  I was begging God this all would be my answer.  I got pregnant again March of 2012, on all the
<br/>> medication Dr. Kwak wanted me to be on, but I sadly lost our baby boy at 12 weeks.  
<br/>>
<br/>> We were told to wait 3 cycles, and do IVIG prior to conceiving.  However, we got pregnanton the third cycle.  I immediately flew to her office in Chicago, when I was 5 weeks pregnant and got IVIG.   I also went up to 40 mgs. of lovenox a day, and everything else, along with estradiol supplements.   I also switched the folgard to metanx,.  My blood flow was initially a little low.  I traveled to see her every other week for 14 weeks, and got IVIG every time I went.  The last time I saw the baby moving around was at 12 weeks 6 days.  The baby looked perfect, and the blood flow looked great.  The next week, two days after Christmas,  I went in for a local ultrasound, and the baby had passed.  We were so hopeful for this baby, and that we would be able to meet this precious child.  I really hoped that IVIG would be our missing piece to the puzzle.  I had a D&C the very next day.  I feel so, so hopeless.  My husband is ready to give up or at
<br/>> least take a long, long break.
<br/>>
<br/>> I write all this to see
<br/>> if anyone has had a similar circumstance where they had healthy children, and then had recurrent pregnancy loss?
<br/>> I had my follow up appointment with Dr. Kwak, and she said my cytokines were elevated at the very end of the pregnancy, and my thyroid was low.    I was put on synthroid at about 6 weeks pregnant, but my levels still weren't balanced.     
<br/>>
<br/>> I am wondering ifanyone can explain to me what cytokines are, and I am confused as to why they weren't' elevated when she first tested me a year ago.
<br/>> She was very kind, and positive about me trying again in 3 plus months, and told me I need IVIG, weekly, instead of bi-weekly. I would also need to have IVIG prior to conception.
<br/>>
<br/>> I really admire and respect Dr. Kwak-Kim and her practice, but I am wondering if I should be getting a second opinion.
<br/>> I see many of you have seen Dr. Braverman.  I realize that no doctor perfect, and they are all doing their very best in each situation, but I just feel so unclear about what my main issues are.
<br/>> It is so difficult that my babies make it to the very end of the first trimester, and into the second trimester, and then pass away.  
<br/>>
<br/>> I would be appreciate any advice or insights.  You are all so knowledgeable.  And thank you for reading my story.
<br/>>
<br/>> Thank you,
<br/>>
<br/>> Catherine   
<br/>>
<br/>

hi all....have not posted in a while....just went thru our second donor cycle
<br/>and our donors eggs were graded fair....with that my hopes were once again shot
<br/>down.....this was going to be our last attempt as per my DH....this fertility
<br/>journey took its tole on us financially but more so emotionally.....this is our
<br/>first try after about 7 ivf attempts to get a bfp with immune protocol.....now
<br/>we hope we can sustain this preg with immune protocol...want to share in hopes
<br/>to give someone else hope and the strength to keep going.....i , like many
<br/>women onhere have struggled and fought tooth and nail for this.....fought for
<br/>all my ins coverage and meds to make this a possibilty for us...from getting
<br/>ivig covered and humira donated to us....its been a full time job to say the
<br/>least .....we did get our bfp this am and will go monday in hopes that it will
<br/>double....i know we have a long road ahead but we got took our first big step
<br/>today by getting the BFP... i feel i have alot of ammo on my side with the help
<br/>of the AEB center and you ladies..........last year i did LIT 3X so i don/t know
<br/>if that is helping me at this point....one month before this cycle i did two
<br/>shots of humira and two days before our transfer i did an ivig.....AEB center
<br/>said to wait til monday to test bloods and then decide if we need another IVIG
<br/>but i think i will just do IVIG on sunday to be cautious...anyone have any
<br/>suggestions or opinions on what they would do?....
<br/>i dont know if i could have come this far without the emotional support i got
<br/>EVERYDAY from the generous and caring women and men and scientists on this
<br/>board....you all gave me ideas, strength and hope....wishing everyone strength
<br/>and good luck and prayers to everyone that is still waiting...it can happen!
<br/>
<br/>
<br/>
<br/>

Apparently I tested negative for APA's, anti cardio lipins etc and so they dont
<br/>think I need some of these treatments. Also Dexamethasone crossed the placenta
<br/>after 13 weeks and so they are pulling me off it at 10 weeks.
<br/>国外孕后也吃地米，但在早期

  
<br/>Sue- are you hetero or homo for MTHFR?  
<br/>Have a look on MTHFR.net - the advice there is to stay away from folic acid completely and take the activated forms. If you are homo, also make sure you are on blood thinners.
<br/>
<br/>
<br/>Also vit b levels tests are interesting-  I think they can come back high, but that can mean that it isn't being absorbed properly and just sitting there- it's all a bit confusing.  Anyway there's alot of info on that website.
<br/>
<br/>
<br/>Re gluten- I was gf for only about 2 months, and i conceived naturally (after 8 ivf transfers, incl 5 chems) - now not to say that being gf clinched anything- I had my first immune treatment the previous month, which ended up a chem)
<br/>However I think between having that immune treatment and being on an antinflammatory diet, my immune system calmed enough to allow a (miracle) pregnancy the following month.
<br/>
<br/>
<br/>I personally would go gf anyway- we took my son off gluten (he has autism) and we noticed big changes within 3 days, even though it takes months to completely eliminate from the system)
<br/>
<br/>
<br/>Good luck- I know this journey is super hard emotionally and financially- it completely sux sometimes - people that just get preg don't know how lucky they are. But somehow you have to find the strength to keep going- and give immune therapy a chance to work.
<br/>Rach
<br/>
<br/>
<br/>Sent from my iPhone
<br/>
<br/>On 23 Jan 2013, at 22:46, "snookarama" <77snook.sue@...> wrote:
<br/>
<br/>
<br/>  
<br/>Hi Rach
<br/>
<br/>Thank you for the info.
<br/>
<br/>I tested positive for MTHRF, have high NK's, and similar DQ Alpha to my husband. We have a 6 year history of ttc, with 4 attempts at IVF (1 fresh and 3 FET's). We had 2 positives but early losses, and 2 chemicals. My last attempt was our first with immune treatment and bizarrely it produced our worst result yet!
<br/>
<br/>I am all set to try again with a slightly altered regime but adding in Neupogen too.
<br/>
<br/>I feel I cannot keep going with all this as the emotional, physical and financial strains are too much. Life has been on hold for so long, as I am sure many on here also feel.
<br/>
<br/>It is a shame gluten takes months to clear from your system, I don't have that time before we start. I will do it however as anything may help. Just hope it's not too late!
<br/>
<br/>Getting my Vit B levels checked next week.
<br/>
<br/>Sue
<br/>
<br/>--- In immunologysupport@yahoogroups.com, rachael wrote:
<br/>>
<br/>> Hi sue
<br/>> I'm not sure what immune issues you have?
<br/>> I can't really advise what you personally need, but I will share what I did.
<br/>>
<br/>> I had high nkc, so I would take 4 fish oil capsules a day which had a higher EPA to DHA component ( so total of 1600mg of EPA a day ) supposedly good at helping to reduce nkc.
<br/>> I also went gfcf as gluten and dairy are often the two biggest culprits for inflammation - they may not be for you. I just made sure my substitutes provided me with all the nutrients I need- you certainly don't need dairy to get all your calcium, but I topped up with a calcium supp anyway.
<br/>> It can take months to eliminate gluten from your system, but only a week to get dairy out.
<br/>> Can I ask why you are on high dose folic acid? Is that bcos u r low?
<br/>> Have you been tested for MTHFR?
<br/>> I take folinic acid and activated b vitamins which are absorbed easier for me as I have MTHFR.
<br/>> Good luck
<br/>> Rach
<br/>>
<br/>>
<br/>>
<br/>> Sent from my iPhone
<br/>>
<br/>> On 21 Jan 2013, at 05:54, "snookarama" <77snook.sue@...> wrote:
<br/>>
<br/>> > Hello
<br/>> >
<br/>> > Just a quick one....as I am sure some of you will be able to pass on your experience and knowledge (I am relatively new to all this).
<br/>> >
<br/>> > During immune treatment I am taking the following supplements:-
<br/>> >
<br/>> > High dose Folic Acid
<br/>> > A multivitamin tablet
<br/>> > Extra Vitamin D (my level on blood test was sufficient but only just)
<br/>> > Omega 3 fish oil capsules (once a day).
<br/>> >
<br/>> > However I have since learned my Omega 3 capsule is probably too low.
<br/>> >
<br/>> > How much Omega 3 fish oils should you be taking through treatment? Also how much of that should be EPA and DHA?
<br/>> >
<br/>> > I have also heard insufficient Vitamin B6 and B12 to be a problem for miscarriage. Do people have their level of this tested? Is this another supplement I should top up on?
<br/>> >
<br/>> > Finally I have never altered my diet before, only so far as to eat healthily and cut out caffeine and alcohol. I am considering going gluten-free for my next cycle, and see a lot of you do so I am obviously late to this one. I am certain I will do it, but am also interested to know if dairy free is considered essential as well? I am not certain I want to do both, and am also worried about becoming deficient in other nutrients if I change too much.
<br/>> >
<br/>> > Confused! Please advise...
<br/>> >
<br/>> > Sue
<br/>> >
<br/>

When I reach 10 weeks, they are pulling me off Dexamethasone by weaning me off
<br/>it.
<br/>
<br/>When I reach 13 weeks, they pull me off Lovenox.
<br/>
<br/>I think they stop Metformin too at 13 weeks and I just use insulin 4 times a day
<br/>as I have prediabetes/gestational always.
<br/>
<br/>So it will be interesting to see what changes happen. I will continue Baby
<br/>Aspirin, Synthroid etc and Ferralet 90 (for iron depleted people) throughout.
<br/>
<br/>Good luck, so happy for you!
<br/>

What I did, as it was holiday time, is I had it (IVIG) at AEB on Dec 13th, did
<br/>my FET on Dec 20th ... Got my positive beta on Dec 30th, it was kind of low, did
<br/>IVIG on 31st as AEB was closed on some days ...
<br/>
<br/>After that I tested and TNF was good, 22. I will retest NKs and cytokines on
<br/>Tues 29th, if not good, will maybe do another one. Yes it costs #$ 2835 and is a
<br/>pain!
<br/>
<br/>

Not at all...If I could remember. But I know I did intralipid infusion before ovulation...then started neupogen at about 6dpo. Then upon BFP I did another intralipid. Cont. w/ the neupogen until 12 wks (was prescribed to take it till 9 wks but had enough and felt more safe/comfortable continuing it.) Did about 3 more intralipids when my cytokines went up. Don't recall the dosage but it was 1 shot/day and it was based on my weight.
<br/>

...........