To Jean

Massive congratulations on the birth of your daughter Julia :D and thanks for
giving us all renewed hoope.

Is it Ok if I share your story with others to help them too?

kindest regards

Jenny
--- In immunologysupport@yahoogroups.com, "jinaprivate" <sharksaddict@...>
wrote:
>
>
> I can't believe I am actually writing this - 4 years almost to the day
> of my first of 6 m/c we welcomed our "Beer Baby" daughter Julia into the
> world: October 30, 2009, 11:45 PM (almost a Halloween baby). This has
> been an incredible journey for us and involved 4 different OB's, 3 RE's,
> Dr Q in Nogales, a Rheumatologist, Gastroenterologist, Physical
> Therapist, Acupuncturist, 3 nutritionists, 2 Chiropractors, 1 grief
> counselor and the staff at the Beer Center and Medical Associates
> Infusion Centers, most notably Dr Stricker, Dr Trobough, Chris, Meena,
> Cindy and Carolyn. And don't forget the hundreds of vials of blood drawn
> sent to the Chicago, San Jose and my local labs (not to mention the
> 10-13 vials drawn by DH during each of our 3 Nogales trips for LIT plus
> a ton of other draws for LAD checks, infectious disease checks and every
> imaginable genetic screening). But we finally reached our goal and Julia
> has joined our family: me, DH and our 3 year old yellow lab. This would
> not have ever happened if not for the amazing company I work for and an
> extremely supportive boss who allowed me to change careers such that I
> could work part time, mostly from home, giving me the opportunity to
> search for answers via web research, posting on forums like this, and
> meeting with all the doctors and whatnot mentioned above for diagnosis
> and treatments. And of course I thank all of you on this board who have
> been so supportive and helpful - most notably Nancy B, Divetherapy,
> Terri, Cherylann, GC and Kelly K whose knowledge and experience kept me
> going during my darkest hours when I was losing faith that this could
> possibly work. It's interesting because it was not until we started to
> seriously accept adoption, donor eggs, surrogacy or fostering as ways to
> achieve our goal that we finally were met with success - via natural
> conception.   Here is a summary of my history followed by the treatments
> I did for this pregnancy:   Pre-Beer Center: 5 m/c over 2 years (Fall
> 2005-2007) - all natural cycles, ranging from 5w to 12w (baby died at
> 9w), with all m/c growth on u/s never matched conception date and I
> charted cycles. Treatments tried: baby aspirin, progesterone, clomid
> (with 2 pg). Always got pg within 1-2 months of trying.   Beer Center
> diagnosis (Fall 2007): high NK killing power, low LAD's, positiive ANA,
> MTHFR C hetero, PAI-1 4G homo Beer Center treatment plan: 2 double dose
> LIT in 11/07, preconception and BFP IVIG, dexamethasone, baby aspirin,
> Folgard, prenatal   Through online research, discovered I could be
> gluten intolerant or celiac - went on 2 week gluten free trial (not
> recommended - do the blood test while you are still eating gluten) and
> lifelong health issues vanished (constant nervous tummy, brain fog,
> seasonal allergies, catching every cold I came into contact with that
> led to a sinus infection). Went back on gluten to try to get official
> celiac diagnosis but results were inconclusive but remained gluten free
> from end of 2007 onward. I am convinced I am celiac and that my NK
> issues stem from a lifetime of untreated celiac. ANA went negative and
> stayed that way 4 months after going off gluten so I removed
> dexamethasone from my treatment plan. Also tried Wobenzym but it never
> affected my NK's.   Could not get pg from Jan 2008 - May (all while
> taking dex), stopped dex in May, LAD's went low in May so we did one
> more LIT booster in Nogales in June 2008. Got pg with #6 the following
> month (wasn't trying). First pg ever where u/s were measuring exactly as
> they should! Did IVIG at BFP and another 3 weeks later. Started Arixtra
> and calcium/vitamin D supplements at 7w due to positive APA's. Had
> weekly u/s but lost heartbeat at 10w u/s. Beer lab showed some NK
> activity at implantation site but it was not cause of m/c (in fact, the
> IVIG may have stopped an attack - otherwise we may have lost the pg much
> earlier). Karyotype showed cause was trisomy 21 (down syndrome). Was
> absolutely devastated and convinced it had taken too long for me to find
> my issues and that now that I was 40 my eggs were all bad. The only
> positives were that it looked like the immune treatments were preventing
> attack, and my LAD's remained high after the loss so no need for another
> LIT.   Tried one IVF cycle over the holidays 2008 simply so we could
> have the embryos checked. Did additional prep such that any extra
> embryos could be frozen and given to a surrogate but we only ended up
> with 3 embryos and only 1 was chromosomally normal - and the cycle
> failed. Cycle included preconception and post transfer IVIG, Arixtra,
> baby aspirin, metformin, folgard, prenatal, 2 courses of antibiotics,
> progesterone oil plus all the stim drugs.   Was preparing for next IVF
> cycle when we got pg naturally - lucky #7 - again not trying. Treatment
> included 6 IVIG's between 8w and 31w, Arixtra due to positive APA's
> (they only go positive when I'm pg), metformin for 1st trimester (I was
> still on it due to my IVF doc's treatment in preparation for the next
> cycle), baby aspirin, folgard, prenatal, calcium/D supplements. DH and I
> did our best to remain unattached with the attitude that each weekly doc
> appointment was a checkpoint and that only if we could get to the "good
> amnio results" checkpoint at 19w would we consider ourselves truly
> pregnant. Hardly told anyone about pg - not even our families until we
> got the news at 19w that her chromosomes were good. Started weekly non
> stress tests at 28 weeks, went to 2x week after my NK's flared at 30w.
> Damaged SI joint at 36 weeks and could not walk (did not know this was
> the case- just thought it was part of pg - so I continued to damage it
> until I delivered at 40w2d and was diagnosed in the hospital). Delivered
> Julia via c-section after she was not tolerating contractions (rapid
> heart decelerations when I was only 3-4 cm dilated). We are having a
> wonderful time getting to know her although it is a bit challenging that
> I can't walk - I am using a walker and doing exercises and following
> treatment from the hospital physical therapists and am starting to see
> some healing happen.   That's it. I know that was long but at least for
> me, reading peoples success stories really helped me mentally to believe
> these treatments are for real, and that if we put our minds to it, we
> can have the families we've dreamed of. My advice based on what I've
> learned is do not assume doctors know everything - if I had stuck with
> my first set of doctors I would still be getting the "keep trying"
> advice. You need to be  your own advocate and study up as much as you
> can and challenge your doctors diagnosis and treatments. Also, accept
> other possibilities to how to achieve your goal - as difficult as it may
> be when we're driven to believe that only a biological child will do. We
> opened our minds up to so many new things: traveling to a Mexico border
> town with $600 cash in our pockets, doing an IVF cycle, accepting donor
> eggs, adoption and surrogacy as next steps if we could not complete that
> 2nd IVF cycle that we never needed, etc.    I send my best to all of you
> and so hope you'll get the answers you need and complete  your journeys
> as soon as possible. This one took us 4 years - 2 years since finding
> the Beer Center.   Jean
>

My name is Katina, and I have 2 healthy boys ages 6 and 8, and 5 angels. After
suffering my 5th loss, a stillbirth at 26 weeks on 9-19-09, my OB and RE decided
they needed to run the recurrent loss panel. It came back yesterday and I have
tested positive for these things. I was started on Metafolin yesterday and am
awaiting my CD 3 with the RE on monday to see if I'll start Lovenox now, or when
I get pregnant again, or if I need to do baby aspirin now. I'm just not sure
what she wants me to do. I just found this group from Dr Beers website and
wanted to say hello.

I will be in NOgales in 11/14 and I was wondering if any of you are going to be
there ...??

sue

Julia might have some that she's selling for a discount..at least she did a few
months ago.

Have you considered intralipids? I know the jury's still out on their use but it
would be worth trying if nothing else comes up.

Linda

--- In immunologysupport@yahoogroups.com, "swpea24" <swpea24@...> wrote:
>
> Hi everyone - I am sending this out once again as after talking with DH again
we so cannot afford to spend more money on IVIG as we are already paying for our
8th IVF end of month and are tapped out.  Does anyone have or know of someone
who has extra IVIG????  You would be doing a huge good deed and I would be
forever grateful.  Thanks in advance for your help!!
>
>
> --- In immunologysupport@yahoogroups.com, "swpea24" <swpea24@> wrote:
>
> My insurance company will not cover and and I am stressing!  I already have to
pay for another ivf after paying out of pocket over $60.0.  If anyone can share
with me I would be forever grateful!
>
> Thanks everyone!
>
> --- End forwarded message ---
>

Hello Everyone

A friend just sent me a link to a NEW giveaway offer, so I am sharing it with
the group!

Grab a ton of Free Hershey's in this Big Promotion

This offer is only available to USA residents

Click the link below to view this great freebie offer!

http://groups.google.com/group/collectingfreebies/web/hersheys-giveaway-usa

I hope this helps with your budgets!

Hi everyone - I am sending this out once again as after talking with DH again we
so cannot afford to spend more money on IVIG as we are already paying for our
8th IVF end of month and are tapped out.  Does anyone have or know of someone
who has extra IVIG????  You would be doing a huge good deed and I would be
forever grateful.  Thanks in advance for your help!!


--- In immunologysupport@yahoogroups.com, "swpea24" <swpea24@...> wrote:

My insurance company will not cover and and I am stressing!  I already have to
pay for another ivf after paying out of pocket over $60.0.  If anyone can share
with me I would be forever grateful!

Thanks everyone!

--- End forwarded message ---

Congrats!  Enjoy each precious moment you deserve it!

--- In immunologysupport@yahoogroups.com, "jinaprivate" <sharksaddict@...>
wrote:
>
>
> I can't believe I am actually writing this - 4 years almost to the day
> of my first of 6 m/c we welcomed our "Beer Baby" daughter Julia into the
> world: October 30, 2009, 11:45 PM (almost a Halloween baby). This has
> been an incredible journey for us and involved 4 different OB's, 3 RE's,
> Dr Q in Nogales, a Rheumatologist, Gastroenterologist, Physical
> Therapist, Acupuncturist, 3 nutritionists, 2 Chiropractors, 1 grief
> counselor and the staff at the Beer Center and Medical Associates
> Infusion Centers, most notably Dr Stricker, Dr Trobough, Chris, Meena,
> Cindy and Carolyn. And don't forget the hundreds of vials of blood drawn
> sent to the Chicago, San Jose and my local labs (not to mention the
> 10-13 vials drawn by DH during each of our 3 Nogales trips for LIT plus
> a ton of other draws for LAD checks, infectious disease checks and every
> imaginable genetic screening). But we finally reached our goal and Julia
> has joined our family: me, DH and our 3 year old yellow lab. This would
> not have ever happened if not for the amazing company I work for and an
> extremely supportive boss who allowed me to change careers such that I
> could work part time, mostly from home, giving me the opportunity to
> search for answers via web research, posting on forums like this, and
> meeting with all the doctors and whatnot mentioned above for diagnosis
> and treatments. And of course I thank all of you on this board who have
> been so supportive and helpful - most notably Nancy B, Divetherapy,
> Terri, Cherylann, GC and Kelly K whose knowledge and experience kept me
> going during my darkest hours when I was losing faith that this could
> possibly work. It's interesting because it was not until we started to
> seriously accept adoption, donor eggs, surrogacy or fostering as ways to
> achieve our goal that we finally were met with success - via natural
> conception.   Here is a summary of my history followed by the treatments
> I did for this pregnancy:   Pre-Beer Center: 5 m/c over 2 years (Fall
> 2005-2007) - all natural cycles, ranging from 5w to 12w (baby died at
> 9w), with all m/c growth on u/s never matched conception date and I
> charted cycles. Treatments tried: baby aspirin, progesterone, clomid
> (with 2 pg). Always got pg within 1-2 months of trying.   Beer Center
> diagnosis (Fall 2007): high NK killing power, low LAD's, positiive ANA,
> MTHFR C hetero, PAI-1 4G homo Beer Center treatment plan: 2 double dose
> LIT in 11/07, preconception and BFP IVIG, dexamethasone, baby aspirin,
> Folgard, prenatal   Through online research, discovered I could be
> gluten intolerant or celiac - went on 2 week gluten free trial (not
> recommended - do the blood test while you are still eating gluten) and
> lifelong health issues vanished (constant nervous tummy, brain fog,
> seasonal allergies, catching every cold I came into contact with that
> led to a sinus infection). Went back on gluten to try to get official
> celiac diagnosis but results were inconclusive but remained gluten free
> from end of 2007 onward. I am convinced I am celiac and that my NK
> issues stem from a lifetime of untreated celiac. ANA went negative and
> stayed that way 4 months after going off gluten so I removed
> dexamethasone from my treatment plan. Also tried Wobenzym but it never
> affected my NK's.   Could not get pg from Jan 2008 - May (all while
> taking dex), stopped dex in May, LAD's went low in May so we did one
> more LIT booster in Nogales in June 2008. Got pg with #6 the following
> month (wasn't trying). First pg ever where u/s were measuring exactly as
> they should! Did IVIG at BFP and another 3 weeks later. Started Arixtra
> and calcium/vitamin D supplements at 7w due to positive APA's. Had
> weekly u/s but lost heartbeat at 10w u/s. Beer lab showed some NK
> activity at implantation site but it was not cause of m/c (in fact, the
> IVIG may have stopped an attack - otherwise we may have lost the pg much
> earlier). Karyotype showed cause was trisomy 21 (down syndrome). Was
> absolutely devastated and convinced it had taken too long for me to find
> my issues and that now that I was 40 my eggs were all bad. The only
> positives were that it looked like the immune treatments were preventing
> attack, and my LAD's remained high after the loss so no need for another
> LIT.   Tried one IVF cycle over the holidays 2008 simply so we could
> have the embryos checked. Did additional prep such that any extra
> embryos could be frozen and given to a surrogate but we only ended up
> with 3 embryos and only 1 was chromosomally normal - and the cycle
> failed. Cycle included preconception and post transfer IVIG, Arixtra,
> baby aspirin, metformin, folgard, prenatal, 2 courses of antibiotics,
> progesterone oil plus all the stim drugs.   Was preparing for next IVF
> cycle when we got pg naturally - lucky #7 - again not trying. Treatment
> included 6 IVIG's between 8w and 31w, Arixtra due to positive APA's
> (they only go positive when I'm pg), metformin for 1st trimester (I was
> still on it due to my IVF doc's treatment in preparation for the next
> cycle), baby aspirin, folgard, prenatal, calcium/D supplements. DH and I
> did our best to remain unattached with the attitude that each weekly doc
> appointment was a checkpoint and that only if we could get to the "good
> amnio results" checkpoint at 19w would we consider ourselves truly
> pregnant. Hardly told anyone about pg - not even our families until we
> got the news at 19w that her chromosomes were good. Started weekly non
> stress tests at 28 weeks, went to 2x week after my NK's flared at 30w.
> Damaged SI joint at 36 weeks and could not walk (did not know this was
> the case- just thought it was part of pg - so I continued to damage it
> until I delivered at 40w2d and was diagnosed in the hospital). Delivered
> Julia via c-section after she was not tolerating contractions (rapid
> heart decelerations when I was only 3-4 cm dilated). We are having a
> wonderful time getting to know her although it is a bit challenging that
> I can't walk - I am using a walker and doing exercises and following
> treatment from the hospital physical therapists and am starting to see
> some healing happen.   That's it. I know that was long but at least for
> me, reading peoples success stories really helped me mentally to believe
> these treatments are for real, and that if we put our minds to it, we
> can have the families we've dreamed of. My advice based on what I've
> learned is do not assume doctors know everything - if I had stuck with
> my first set of doctors I would still be getting the "keep trying"
> advice. You need to be  your own advocate and study up as much as you
> can and challenge your doctors diagnosis and treatments. Also, accept
> other possibilities to how to achieve your goal - as difficult as it may
> be when we're driven to believe that only a biological child will do. We
> opened our minds up to so many new things: traveling to a Mexico border
> town with $600 cash in our pockets, doing an IVF cycle, accepting donor
> eggs, adoption and surrogacy as next steps if we could not complete that
> 2nd IVF cycle that we never needed, etc.    I send my best to all of you
> and so hope you'll get the answers you need and complete  your journeys
> as soon as possible. This one took us 4 years - 2 years since finding
> the Beer Center.   Jean
>

Hi there!

We have had 4 unknown losses because of no heartbeat until 10 week, RE did tons
of tests but all came back as negative, we are trying to find out a doctor who
can help us. We think there might be some immune related issues and need a
doctor who can help us. We read about Dr Beer and came to this group from there.
We have read about a lot on IVIG and use G-CSF to prevent embryo demise in early
pregnancy.

Does anyone know any doctor in CT,Danbury area who can help us finding the cause
of our problem? Any help would be appreciated.

-Thanks

Joann,

Who wrote this? They say that they are currently offering part of the treatment
outlined there at no charge...

Interesting.

Linda

--- In immunologysupport@yahoogroups.com, Joe Fuge <jodijoey@...> wrote:
>
>
> Some things to consider Amy.....
> Yours,
>  
> JoAnn
>
> Phosphodiesterase Inhibitors
>
> The phosphodiesterases are responsible for enzymatic degradation of molecules
within the cells involved in generating energy for the cell to function. They
have anti-inflammatory effects. Two phosphodiesterase inhibitors�"Sildenfil
(Viagra) and Pentoxiphylline (Trental) have been shown to increase blood flow to
the uterus. Viagra in the form of vaginal suppositories given in the dosage of
25 mg four times a day has been shown to increase uterine blood flow as well as
thickness of the uterine lining. Significant improvement of the thickness of the
uterine lining in about 70% of women treated. Successful pregnancy resulted in
42% of women who had previously experienced repeated IVF failures and who
responded to the Viagra. Similar results were obtained when Trental was used in
400mg twice a day doses alone with vitamin E to treat women experiencing
implantation failure associated with thin endometrium and elevated uterine NK
cells. Animal studies have
>  demonstrated that pentoxifylline prevents miscarriages in abortion-prone
mice. Efficacy of pentoxifylline for treatment of recurrent pregnancy loss in
human beings remains to be established.
>  
> In a small group of women with recurrent miscarriage, (<5%) who fail to show a
cause for their miscarriages, we have been able to diagnose the onset of
eosinophillia once they are pregnant. We have noted that miscarriage occurred
about two weeks after the eosinophils showed up. We have been able to keep this
group of patients pregnant with pulsed steroids and serial blood smears to
follow the level of eosinophils. Eosinophils are a special type of white blood
cell that is supposed to increase in situations such as asthma, allergies,
parasites, or rejection of a transplanted organ.
> In a large group of women who were previously diagnosed with “unexplained
infertility” or “unexplained recurrent pregnancy loss”, our work with area
hematologists has shown an association between pregnancy loss, infertility and
certain coagulation/clotting disorders. Empirical treatment for these
coagulation disorders has been offered to our patients through the use of
aspirin, heparin, and prednisone. While caution is indicated, we feel there are
great benefits associated with this treatment.
>  
> Biological Response Modifiers   
>
> The most cutting edge research is currently being done on “natural killer
cells” in the uterus. These natural killer cells produce cell signals that can
disrupt the conditions necessary for the embryo to adequately implant in the
uterus resulting in miscarriage. If this condition exists, the current treatment
option is IVIG (intravenous immunoglobulin) therapy. Prior to IVIG, white blood
cell (WBC) immunizations were used to improve the outcomes of women who
experienced recurrent miscarriage. This approach eventually spread to include
treatment of the couple with unexplained infertility. The concept of this
treatment modality, not universally adopted by the experts, has been debated for
several years. A search of the literature reveals articles that are both pro and
con. My experience in this field supports the treatment of immunological factors
that interfere with reproduction in both unexplained infertility and recurrent
pregnancy loss.
> The blocking antibody model developed by Dr. Alan Beer has been the most
prominent theory and justification for doing WBC immunizations. It is my belief
that this theory is not a true description of what occurs. It has recently been
shown that elevated NK cells in the circulating blood will normalize after WBC
immunizations. This effect has been duplicated in women who experience recurrent
miscarriage following the use of a low dose of a biological response modifier in
the form of Killed Staphylococcus Preparation (KSP). It may be that WBC
immunizations act as a biological response modifier (BRM) causing a
normalization of “natural killer” cells. Encouraging research has been done
with the use of biological response modifiers. White cell immunization (PLI), a
potential biological response modifier, has been removed from general use by the
FDA and placed it under their umbrella of authority. This makes it available for
research institutions only. KSP,
>  another potential biological response modifier, is made in Japan, but not
licensed for use in the United States. For this reason we have considered using
a common biological response modifier (BRM) in the form of killed yeast and
yeast supernatant to see if clinical outcomes improve. The desired result is a
thicker endometrial lining, reduction in peripheral natural killer activity,
achievement of a clinical pregnancy, and delivery of a viable infant. We are
currently offering this treatment option to select patients at no charge.
> My theory regarding the use of biological response modifiers is based on the
current knowledge of programmed cell death, or, apotosis:
Corticotropin-releasing hormone induces the uterine cavity to produce molecular
prongs in response to hormones. There molecular prongs, called FAS ligands, bind
to a FAS receptor on mature white blood cells and cause them to die. Immature
white bloods cells, however, have not acquired FAS receptors and, therefore,
cannot be induced to die. This inability to control the number of white blood
cells in the uterus may account for the elevation in natural killer cells in the
uterine cavity and in the peripheral blood of women with recurrent pregnancy
loss and unexplained infertility. Biological response modifiers, such as PLI,
KSP, or, IVIG, may induce these immature white blood cells to acquire FAS
receptors allowing apotosis/cell death causing a decrease in natural killer
cells in the peripheral blood. If this theory is
>  correct, the uterine cavity is capable of making itself an immuno-privileged
site
>  
>  
>  
>  
>  
>
>
> --- On Sun, 11/8/09, Amy Sherlock <thiscrossiembrace@...> wrote:
>
>
> From: Amy Sherlock <thiscrossiembrace@...>
> Subject: Re: [immunologysupport] Re: Recent IVIG study
> To: immunologysupport@yahoogroups.com
> Date: Sunday, November 8, 2009, 9:12 PM
>
>
>  
>
>
>
>
>
> I'm not an AEB patient, I went to Dr Kwak-Kim.  I think she probably would
have started me on 40 mgs 1 x day, but I was already on it (after pleading with
my hematologist) when I had the ultrasound done.  That revealed no blood flow
to the endometrium, so she upped me to 40 mgs 2 x day.
> When my hematologist heard this, he insisted I go straight to 60 mgs 2 x day,
b/c as he's seen, 40 mgs 2 x day is no different than 40 mg 1 x day.  I am now
doing 60 mgs 2 x day as per my hematologist (Dr Waintraub at University of
Hackensack Medical, NJ).
>  
> HTH.
>
>
>
>
>
> From: swpea <swpea24@aol. com>
> To: immunologysupport@ yahoogroups. com
> Sent: Sun, November 8, 2009 8:01:30 PM
> Subject: [immunologysupport] Re: Recent IVIG study
>
>  
>
>
>
> hummmmm I have basically every clotting issue under the sky.... does AEB
prescribe 30 vs 40?  Can anyone chime in???  I am to take 30 1x day and with
positive pregnancy test 2xday.
>  
> Amy who is your doc??? 
>

Jean,

A million congratulations to you and your DH. I think it is fabulous that you
wrote out your history to give others inspiration!!

You can see an osteopath to help with the SI joint issue. Hopefully they can
give you some relief!

Best,
Linda

--- In immunologysupport@yahoogroups.com, "jinaprivate" <sharksaddict@...>
wrote:
>
>
> I can't believe I am actually writing this - 4 years almost to the day
> of my first of 6 m/c we welcomed our "Beer Baby" daughter Julia into the
> world: October 30, 2009, 11:45 PM (almost a Halloween baby). This has
> been an incredible journey for us and involved 4 different OB's, 3 RE's,
> Dr Q in Nogales, a Rheumatologist, Gastroenterologist, Physical
> Therapist, Acupuncturist, 3 nutritionists, 2 Chiropractors, 1 grief
> counselor and the staff at the Beer Center and Medical Associates
> Infusion Centers, most notably Dr Stricker, Dr Trobough, Chris, Meena,
> Cindy and Carolyn. And don't forget the hundreds of vials of blood drawn
> sent to the Chicago, San Jose and my local labs (not to mention the
> 10-13 vials drawn by DH during each of our 3 Nogales trips for LIT plus
> a ton of other draws for LAD checks, infectious disease checks and every
> imaginable genetic screening). But we finally reached our goal and Julia
> has joined our family: me, DH and our 3 year old yellow lab. This would
> not have ever happened if not for the amazing company I work for and an
> extremely supportive boss who allowed me to change careers such that I
> could work part time, mostly from home, giving me the opportunity to
> search for answers via web research, posting on forums like this, and
> meeting with all the doctors and whatnot mentioned above for diagnosis
> and treatments. And of course I thank all of you on this board who have
> been so supportive and helpful - most notably Nancy B, Divetherapy,
> Terri, Cherylann, GC and Kelly K whose knowledge and experience kept me
> going during my darkest hours when I was losing faith that this could
> possibly work. It's interesting because it was not until we started to
> seriously accept adoption, donor eggs, surrogacy or fostering as ways to
> achieve our goal that we finally were met with success - via natural
> conception.   Here is a summary of my history followed by the treatments
> I did for this pregnancy:   Pre-Beer Center: 5 m/c over 2 years (Fall
> 2005-2007) - all natural cycles, ranging from 5w to 12w (baby died at
> 9w), with all m/c growth on u/s never matched conception date and I
> charted cycles. Treatments tried: baby aspirin, progesterone, clomid
> (with 2 pg). Always got pg within 1-2 months of trying.   Beer Center
> diagnosis (Fall 2007): high NK killing power, low LAD's, positiive ANA,
> MTHFR C hetero, PAI-1 4G homo Beer Center treatment plan: 2 double dose
> LIT in 11/07, preconception and BFP IVIG, dexamethasone, baby aspirin,
> Folgard, prenatal   Through online research, discovered I could be
> gluten intolerant or celiac - went on 2 week gluten free trial (not
> recommended - do the blood test while you are still eating gluten) and
> lifelong health issues vanished (constant nervous tummy, brain fog,
> seasonal allergies, catching every cold I came into contact with that
> led to a sinus infection). Went back on gluten to try to get official
> celiac diagnosis but results were inconclusive but remained gluten free
> from end of 2007 onward. I am convinced I am celiac and that my NK
> issues stem from a lifetime of untreated celiac. ANA went negative and
> stayed that way 4 months after going off gluten so I removed
> dexamethasone from my treatment plan. Also tried Wobenzym but it never
> affected my NK's.   Could not get pg from Jan 2008 - May (all while
> taking dex), stopped dex in May, LAD's went low in May so we did one
> more LIT booster in Nogales in June 2008. Got pg with #6 the following
> month (wasn't trying). First pg ever where u/s were measuring exactly as
> they should! Did IVIG at BFP and another 3 weeks later. Started Arixtra
> and calcium/vitamin D supplements at 7w due to positive APA's. Had
> weekly u/s but lost heartbeat at 10w u/s. Beer lab showed some NK
> activity at implantation site but it was not cause of m/c (in fact, the
> IVIG may have stopped an attack - otherwise we may have lost the pg much
> earlier). Karyotype showed cause was trisomy 21 (down syndrome). Was
> absolutely devastated and convinced it had taken too long for me to find
> my issues and that now that I was 40 my eggs were all bad. The only
> positives were that it looked like the immune treatments were preventing
> attack, and my LAD's remained high after the loss so no need for another
> LIT.   Tried one IVF cycle over the holidays 2008 simply so we could
> have the embryos checked. Did additional prep such that any extra
> embryos could be frozen and given to a surrogate but we only ended up
> with 3 embryos and only 1 was chromosomally normal - and the cycle
> failed. Cycle included preconception and post transfer IVIG, Arixtra,
> baby aspirin, metformin, folgard, prenatal, 2 courses of antibiotics,
> progesterone oil plus all the stim drugs.   Was preparing for next IVF
> cycle when we got pg naturally - lucky #7 - again not trying. Treatment
> included 6 IVIG's between 8w and 31w, Arixtra due to positive APA's
> (they only go positive when I'm pg), metformin for 1st trimester (I was
> still on it due to my IVF doc's treatment in preparation for the next
> cycle), baby aspirin, folgard, prenatal, calcium/D supplements. DH and I
> did our best to remain unattached with the attitude that each weekly doc
> appointment was a checkpoint and that only if we could get to the "good
> amnio results" checkpoint at 19w would we consider ourselves truly
> pregnant. Hardly told anyone about pg - not even our families until we
> got the news at 19w that her chromosomes were good. Started weekly non
> stress tests at 28 weeks, went to 2x week after my NK's flared at 30w.
> Damaged SI joint at 36 weeks and could not walk (did not know this was
> the case- just thought it was part of pg - so I continued to damage it
> until I delivered at 40w2d and was diagnosed in the hospital). Delivered
> Julia via c-section after she was not tolerating contractions (rapid
> heart decelerations when I was only 3-4 cm dilated). We are having a
> wonderful time getting to know her although it is a bit challenging that
> I can't walk - I am using a walker and doing exercises and following
> treatment from the hospital physical therapists and am starting to see
> some healing happen.   That's it. I know that was long but at least for
> me, reading peoples success stories really helped me mentally to believe
> these treatments are for real, and that if we put our minds to it, we
> can have the families we've dreamed of. My advice based on what I've
> learned is do not assume doctors know everything - if I had stuck with
> my first set of doctors I would still be getting the "keep trying"
> advice. You need to be  your own advocate and study up as much as you
> can and challenge your doctors diagnosis and treatments. Also, accept
> other possibilities to how to achieve your goal - as difficult as it may
> be when we're driven to believe that only a biological child will do. We
> opened our minds up to so many new things: traveling to a Mexico border
> town with $600 cash in our pockets, doing an IVF cycle, accepting donor
> eggs, adoption and surrogacy as next steps if we could not complete that
> 2nd IVF cycle that we never needed, etc.    I send my best to all of you
> and so hope you'll get the answers you need and complete  your journeys
> as soon as possible. This one took us 4 years - 2 years since finding
> the Beer Center.   Jean
>

Pretty sure it depends on the severity of your Dx.

I have NKs, 1 gene of MTHFR, and + for 3-5 APAs. I do 40 a day until BFP then 80
a day. I'm 5'10" and 165lbs.

Linda

--- In immunologysupport@yahoogroups.com, "swpea" <swpea24@...> wrote:
>
> hummmmm I have basically every clotting issue under the sky.... does AEB
> prescribe 30 vs 40?  Can anyone chime in???  I am to take 30 1x day and with
> positive pregnancy test 2xday.
>
>
>
> Amy who is your doc???
>

Amy,
I'm in Jersey City - I should probably make an appointment to see Dr. Waintraub.
Who scanned your uterus and found you had no blood flow to the endometrium? Kwak
Kim? What equipment/procedure did they do?
Thanks,
Linda


> ________________________________
> From: Amy Sherlock <thiscrossiembrace@...>
> To: immunologysupport@yahoogroups.com
> Sent: Sun, November 8, 2009 9:12:30 PM
> Subject: Re: [immunologysupport] Re: Recent IVIG study
>
>  
> I'm not an AEB patient, I went to Dr Kwak-Kim.  I think she probably would
have started me on 40 mgs 1 x day, but I was already on it (after pleading with
my hematologist) when I had the ultrasound done.  That revealed no blood flow
to the endometrium, so she upped me to 40 mgs 2 x day.
> When my hematologist heard this, he insisted I go straight to 60 mgs 2 x day,
b/c as he's seen, 40 mgs 2 x day is no different than 40 mg 1 x day.  I am now
doing 60 mgs 2 x day as per my hematologist (Dr Waintraub at University of
Hackensack Medical, NJ).
>
> HTH.
>
>
>
>
> ________________________________
> From: swpea <swpea24@aol. com>
> To: immunologysupport@ yahoogroups. com
> Sent: Sun, November 8, 2009 8:01:30 PM
> Subject: [immunologysupport] Re: Recent IVIG study
>
>  
> hummmmm I have basically every clotting issue under the sky.... does AEB
prescribe 30 vs 40?  Can anyone chime in???  I am to take 30 1x day and with
positive pregnancy test 2xday.
>  
> Amy who is your doc??? 
>