Right on, Rose. Thanks for writing this. It's important to know, because the toxins in the fish oils could in effect counter any benefit potentially derived from taking them in the first place!

AC

Farmed fish are full of so much other rubbish it does not bear thinking
about - you should never eat them either - if you like salmon then please
try to get organic or wild.  Some Scottish fish farm lakes have become so
extraordinarily polluted over time that NOTHING grows in them (these were
once crystal clear perfect unpolluted lakes - now you cannot see your hand
in front of your face in the water).  Fishing for prawns near the estuaries
downstream from some fish farms has been banned because of the incredibly
high levels of contaminants that have been measured in them.  It is a huge
scandal that this happens, but in Scotland (and I'm sure elsewhere) the
lobbying powers of the large landowners who own the lakes that house the
farms has meant that this problem is swept under carpet in political
circles.  I have an amazing book about this stuff which shows how totally
horrific the chemicals and hormones in farmed fish are - please be ware!

Deep sea fish are less likely to suffer this type of pollution (or any
other) because very deep waters are always less polluted.

Body oil v liver oil - the liver filters out the impurities, so it is
essential to choose a body oil product because the liver oil ones are, by
definition, more likely to have contaminants.

On quantity to take - it seems that most immmuno use of fish oil for NK
activity has been based on the Oxford Uni study (in group files) but please
note that the quantities in g's in that study (9) does not reflect the
actual quantities of EPA and DHA in a normal capsule.  The UK brand that I
take has approx double the quantity of most other (particularly US) brands.
So saying 2 g's per day can mean a hugely varying quantity of the essential
oils.  I take the quantities used in the Oxford Uni study which amounts to
between 2-3 g's per day of my brand.  I have some US capsules too, but I
need to take about 5 per day to get the same level of the Omega-3's.  BTW,
EPA is the good oil for immune systems, DHA is the good one for developing
fetuses.

Best to all, Rose

1st cycle,  iui with clomid, negative
second cycle, intended iui with injectibles, too many eggs, converted to ivf. 
positive, m/c
3rd, natural iui, negative
4th iui with gonal f, presently pg with twins.

mike
Original message attached.

I have read about the ways to reduce the side effects of IVIg (slow
infusion, drinking lots, benadryl, etc...) and understand that the
first infusion must be done in a hospital or clinical setting because
of allergic risk factors.

I am wondering if there is information about those who have suffered
from vaso-vagal responses in other settings and IVIg.  It is kind of
like a panic attack of the body where the heart is told to slow which
limits the blood flow to the brain and you pass out.  Mine is usually
combined with shallow breathing and convulsions with nausea upon
wakening.

In the past, I have suffered from this.  It has occurred when giving
blood for my immune testing or even when giving for a common TSH
test.  It also happened when doing a TB skin test.  There isn't a
true pattern although laying down seems to help.  I am not really an
anxious or panicky person but with my growing track record I am
concerned about the IVIg I may need to have.

Anyone with knowledge of this?

Thanks,
Niki

Dear Rose,

I am so happy to have a UK friend!  It is one thing to move but
moving to a another country when you have medical issues is even
harder.  Thank you for responding!

If you could give your recommendation on the following given the
circumstances at the London clinic and DB's plans for visiting, I
would really appreciate it.

If I sent him our information, including medical records, recent
immune testing results, and placenta slides, what would happen then?
I am guessing that he would review our information and do a
preliminary consult to discuss his opinion.  At this time he would
suggest further testing, if necessary.  We would arrange for the
testing and then do a follow up consult that would include the test
results and treatment recommendations.  ???

We were going to wait until we were actually in the UK to begin this
process but we may not be there until the end of August or
September.  I would actually like to get his initial response sooner
than that so we can make a plan before we actually move.

Would it be a good idea to send our information so it arrives before
his July visit given his 5 week schedule?

I know these are kind of specific questions but I think you can
provide some insight into the inner workings of the new clinic.

Also, any suggestions on how to find a ob/gyn in the Sheffield area
willing to work with immune patients and DB?

Thanks again!
Niki

--- In immunologysupport@yahoogroups.com, "cunesca" <rosemac@m...>
wrote:
> Hi Niki
>
> I'm so sorry about your poor baby.  That must have been totally
> devastating for you.  I hope that your committed efforts to find
out
> why will pay dividends with your next pgcy.
>
> I'm in London and am a patient of Dr Beer's.  Feel free to ask any
> q's you like.  He is currently visiting roughly every 5 weeks for
> about a week of clinic, but it is early days for this new clinic so
we
> will have to see how it goes over the months.
>
> So far, my experience is very good.  I will see him next week to
> get the results of my placental pathology of my m/c from earlier
> this year.  If your hospital kept the pathology blocks (standard
> practice) of placental tissue after your son was born then I am
> sure DB would want to see them to help determine why this
> awful thing happened.
>
> I'll keep you up to date with things as they go on, but as I say,
> please feel free to ask away about London, DB, clinic etc...
>
> Love to you, Rose
>
>
> --- In immunologysupport@yahoogroups.com, "aizkraukle2"
> <nikih@c...> wrote:
> > I wanted to introduce myself as I have been lingering here for
> some
> > time trying to get a handle on my immunology test results.
> This
> > group is very active and experienced so I am hoping to get
> some
> > feedback.
> >
> > I am 32, DH 32.  We lost our first baby, son, at 26 weeks in Jan.
> 03
> > due to complications of a placental abruption.  He was born
> living
> > after an emergency c-setion but passed away two days later.
> We were
> > told that there was no apparent cause of the abruption and all
> should
> > be well next time.  We wanted a second opinion, however.  We
> live in
> > Latvia and although there are very good doctors and services
> here, we
> > felt assistance from specialists were in our best interest.
> >
> > We sought the help of Dr. Matzner and were able to visit him in
> CA.
> > Test results, April 03:
> >
> > Total T CD3+ lymphs  86 (range 59.4-84)
> > Total B CD19+  5 (6.4-22)
> > Helper/Inducer CD4+  67 (29-59)
> > Supp/Cytotoxic (CD8+) lymphs, Activated T (CD3), Total NK
> CD16+56,
> > Cytotoxic (CD5+) all normal range
> >
> > NK activation
> > 1:50 8.9 (borderline 8.5-10)
> > no stimulation with IL2
> > no suppression with IVIg
> >
> > Quantitative IgM  30 (42-250)
> > Quantitative IgG, IgA normal
> > IgG cardiolipin positive
> > All others negative
> >
> > T-cells with IgG  1.1 (negative <30)
> > B-cells with IgG  8 (negative <30)
> > lacks blocking antibodies
> >
> > MTHFR heterozygous
> >
> > DQ alpha  1.1, 3.0  DH 1.2, 3.0
> >
> > ATA, ANA normal
> >
> > Prior to pregnancy I was hypothyroid (Hashimoto's) and had
> treatment
> > yet during pregnancy my TSH started falling at about 16 weeks
> and has
> > continued to slowly do so to where I am just below the normal
> range.
> > Treatment has been adjusted but we haven't achieved a steady
> normal
> > range yet.
> >
> > Protocol:  IVIg, heparin, baby aspirin and prednisone prior to
> > ovulation
> >
> > I would appreciate any comments on my results.  Any thoughts
> on
> > vitamins etc...
> >
> > Also, we are moving to UK by the end of this summer (Sheffield
> > area).  We are considering becoming patients of Dr. Beer.
> Would
> > anyone in the UK be willing to correspond with us about their
> > experiences with immune issues in the UK as well as working
> with Dr.
> > Beer?
> >
> > I am sorry this is so long.  I thought it best to get it all out
> > there.
> >
> > Kind regards,
> > Niki

Dear Debbie

I'm not surprised you are worried, but really I doubt there is
anything of concern at all.  It is incredibly common to spot during
the first few weeks, and actually the fact that it is brownish is
good, it is generally of concern only when it is bright red.  That
said, I have had friends who spotted a great deal in the first few
weeks and gone on to be A-OK.  I agree with Jody though, call
the docs if for no other reason than to put your mind at rest.

Try to have a restful day if you can!  All the best, Rose


--- In immunologysupport@yahoogroups.com, "debcourt213"
<debcourt213@y...> wrote:
> In the last day everytime I go to the bathroom and wipe, the
toilet
> paper isn't totally clear. It is peachy brown like before you to
> start AF. It is not bright red whatsoever, but this is still scaring
> me.
> I didn't have an ultrasound using a vaginal probe, and I am not
on
> progesterone suppositories to cause irritation to the cervix, so
what
> could it be. I am on Prometrium capsules though. I am already
7
> weeks, so it is not implantation bleeding.
> My first ultrasound is on Tues., but in the meantime I am going
nuts!
> Has anyone heard of this and everything turn out okay?
>
> Thanks for your support,
> Debbie

Hi Niki

I'm so sorry about your poor baby.  That must have been totally
devastating for you.  I hope that your committed efforts to find out
why will pay dividends with your next pgcy.

I'm in London and am a patient of Dr Beer's.  Feel free to ask any
q's you like.  He is currently visiting roughly every 5 weeks for
about a week of clinic, but it is early days for this new clinic so we
will have to see how it goes over the months.

So far, my experience is very good.  I will see him next week to
get the results of my placental pathology of my m/c from earlier
this year.  If your hospital kept the pathology blocks (standard
practice) of placental tissue after your son was born then I am
sure DB would want to see them to help determine why this
awful thing happened.

I'll keep you up to date with things as they go on, but as I say,
please feel free to ask away about London, DB, clinic etc...

Love to you, Rose


--- In immunologysupport@yahoogroups.com, "aizkraukle2"
<nikih@c...> wrote:
> I wanted to introduce myself as I have been lingering here for
some
> time trying to get a handle on my immunology test results.
This
> group is very active and experienced so I am hoping to get
some
> feedback.
>
> I am 32, DH 32.  We lost our first baby, son, at 26 weeks in Jan.
03
> due to complications of a placental abruption.  He was born
living
> after an emergency c-setion but passed away two days later.
We were
> told that there was no apparent cause of the abruption and all
should
> be well next time.  We wanted a second opinion, however.  We
live in
> Latvia and although there are very good doctors and services
here, we
> felt assistance from specialists were in our best interest.
>
> We sought the help of Dr. Matzner and were able to visit him in
CA.
> Test results, April 03:
>
> Total T CD3+ lymphs  86 (range 59.4-84)
> Total B CD19+  5 (6.4-22)
> Helper/Inducer CD4+  67 (29-59)
> Supp/Cytotoxic (CD8+) lymphs, Activated T (CD3), Total NK
CD16+56,
> Cytotoxic (CD5+) all normal range
>
> NK activation
> 1:50 8.9 (borderline 8.5-10)
> no stimulation with IL2
> no suppression with IVIg
>
> Quantitative IgM  30 (42-250)
> Quantitative IgG, IgA normal
> IgG cardiolipin positive
> All others negative
>
> T-cells with IgG  1.1 (negative <30)
> B-cells with IgG  8 (negative <30)
> lacks blocking antibodies
>
> MTHFR heterozygous
>
> DQ alpha  1.1, 3.0  DH 1.2, 3.0
>
> ATA, ANA normal
>
> Prior to pregnancy I was hypothyroid (Hashimoto's) and had
treatment
> yet during pregnancy my TSH started falling at about 16 weeks
and has
> continued to slowly do so to where I am just below the normal
range.
> Treatment has been adjusted but we haven't achieved a steady
normal
> range yet.
>
> Protocol:  IVIg, heparin, baby aspirin and prednisone prior to
> ovulation
>
> I would appreciate any comments on my results.  Any thoughts
on
> vitamins etc...
>
> Also, we are moving to UK by the end of this summer (Sheffield
> area).  We are considering becoming patients of Dr. Beer.
Would
> anyone in the UK be willing to correspond with us about their
> experiences with immune issues in the UK as well as working
with Dr.
> Beer?
>
> I am sorry this is so long.  I thought it best to get it all out
> there.
>
> Kind regards,
> Niki

Farmed fish are full of so much other rubbish it does not bear thinking
about - you should never eat them either - if you like salmon then please
try to get organic or wild.  Some Scottish fish farm lakes have become so
extraordinarily polluted over time that NOTHING grows in them (these were
once crystal clear perfect unpolluted lakes - now you cannot see your hand
in front of your face in the water).  Fishing for prawns near the estuaries
downstream from some fish farms has been banned because of the incredibly
high levels of contaminants that have been measured in them.  It is a huge
scandal that this happens, but in Scotland (and I'm sure elsewhere) the
lobbying powers of the large landowners who own the lakes that house the
farms has meant that this problem is swept under carpet in political
circles.  I have an amazing book about this stuff which shows how totally
horrific the chemicals and hormones in farmed fish are - please be ware!

Deep sea fish are less likely to suffer this type of pollution (or any
other) because very deep waters are always less polluted.

Body oil v liver oil - the liver filters out the impurities, so it is
essential to choose a body oil product because the liver oil ones are, by
definition, more likely to have contaminants.

On quantity to take - it seems that most immmuno use of fish oil for NK
activity has been based on the Oxford Uni study (in group files) but please
note that the quantities in g's in that study (9) does not reflect the
actual quantities of EPA and DHA in a normal capsule.  The UK brand that I
take has approx double the quantity of most other (particularly US) brands.
So saying 2 g's per day can mean a hugely varying quantity of the essential
oils.  I take the quantities used in the Oxford Uni study which amounts to
between 2-3 g's per day of my brand.  I have some US capsules too, but I
need to take about 5 per day to get the same level of the Omega-3's.  BTW,
EPA is the good oil for immune systems, DHA is the good one for developing
fetuses.

Best to all, Rose




Message: 21    Date: Sat, 21 Jun 2003 14:33:10 EDT    From: edcarie@...
Subject: Re: Debbie - Re: Fish Oil pills in Pregnancy?  Is it safe?  Kitty,
I think that farm raised don't get the Omega-3 levels that deep arctic fish
do and farm raised can have hormones added.  I am not really positive, but I
know you don't want farm raised (it has nothing to do with mercury or
metals). Carie   >  > Hi Carie, why not farm raised fish??? >  > What is it
that is so good about the deep arctic waters?  Isn't there a  > danger of
heavy metals there as well? > xoxo > Kitty >

Dear Mike,

Thank you so much for relating your thoughts and experience and for
reading through my emails so thoroughly.  You have brought up many
things that need addressing.  I need to make a chart or something
that will help me track all of the testing, treatments and related
questions.

Congratulations to you and your wife!  I can't imagine the
anticipation of the next few weeks (but hope to some day!) and wish
you both the best.

Take care,
Niki



--- In immunologysupport@yahoogroups.com, Esquire727@M... wrote:
> First, I know of Dr. Salafia (we're in NY as well, and will deliver
at Mt. Sinai).  She's good, but NOT sufficently trained to look at
immune issues.  Get back your paraffan blocks or slides from her and
sent them to Dr. Beer.  I bet he sees much more than she.
>
> Your heparin dose should probably be 2x a day.  However, most on
this board take lovenox.  I don't know why (Jane can tell you), but
it is the preferred medicine.  You should be on a higher dose than
the standard 5000 units 2x a day.  If your dose is 7000 units 2x a
day, then you might be ok.  But again, DB prefers Lovenox.
>
> You might want to consider going to Nogales for LIT therapy.  It is
especially required if your body does not respond to IVIG (which you
probably also need).  I would also repeat your Nk assay somewhere
else (finch labs in chicago)....that non-responsive to ivig makes me
concerned.
>
> Finally, if the biopsy or slides reveal NKUs (killer cells that
take residence in the uterus, you may need enbrel or remicade).
Others on this board can tell you more about it (we have no
experiecne with it)
>
> My DW (Jodi had 3 losses, including one after a perfect IVF).  Our
first 2 pg, we got pg on the first month.  Then for some reason we
couldn't get pg, and did the ivf after 8 months and 2 failed IUIs.
>
> After all of this, we discovered DB and got on IVIG, dex, Lovenox,
BA, Folgard, Fish Oil, progesterone, etc.  Got pregnant 1st try on
IUI with twins.  Currently 35 weeks pregnant with b/g twins and
getting ready to run from Long Island to Mt. Sinai at any given
moment.  Dr. Jon Scher is our high risk ob/gyn, Dr. Beer is our RI,
and Dr. Davis of Cornell Medical is our RE.
>
>  Mike
>
>
> -------Original Message-------
> From: aizkraukle2 <nikih@c...>
> Sent: 06/22/03 12:45 PM
> To: immunologysupport@yahoogroups.com
> Subject: [immunologysupport] Re: New member (loss ment)
>
> >

Forgot to add,

we went to nogales for LIT at 10weeks of our pregnancy, due to low LAD and
matching DQ alpha at 4.1 (the worst one to match).

Mike
-------Original Message-------
From: aizkraukle2 <nikih@...>
Sent: 06/22/03 12:45 PM
To: immunologysupport@yahoogroups.com
Subject: [immunologysupport] Re: New member (loss ment)

>

First, I know of Dr. Salafia (we're in NY as well, and will deliver at Mt.
Sinai).  She's good, but NOT sufficently trained to look at immune issues.  Get
back your paraffan blocks or slides from her and sent them to Dr. Beer.  I bet
he sees much more than she.

Your heparin dose should probably be 2x a day.  However, most on this board take
lovenox.  I don't know why (Jane can tell you), but it is the preferred
medicine.  You should be on a higher dose than the standard 5000 units 2x a day.
If your dose is 7000 units 2x a day, then you might be ok.  But again, DB
prefers Lovenox.

You might want to consider going to Nogales for LIT therapy.  It is especially
required if your body does not respond to IVIG (which you probably also need). 
I would also repeat your Nk assay somewhere else (finch labs in chicago)....that
non-responsive to ivig makes me concerned.

Finally, if the biopsy or slides reveal NKUs (killer cells that take residence
in the uterus, you may need enbrel or remicade).  Others on this board can tell
you more about it (we have no experiecne with it)

My DW (Jodi had 3 losses, including one after a perfect IVF).  Our first 2 pg,
we got pg on the first month.  Then for some reason we couldn't get pg, and did
the ivf after 8 months and 2 failed IUIs.

After all of this, we discovered DB and got on IVIG, dex, Lovenox, BA, Folgard,
Fish Oil, progesterone, etc.  Got pregnant 1st try on IUI with twins.  Currently
35 weeks pregnant with b/g twins and getting ready to run from Long Island to
Mt. Sinai at any given moment.  Dr. Jon Scher is our high risk ob/gyn, Dr. Beer
is our RI, and Dr. Davis of Cornell Medical is our RE.

  Mike


-------Original Message-------
From: aizkraukle2 <nikih@...>
Sent: 06/22/03 12:45 PM
To: immunologysupport@yahoogroups.com
Subject: [immunologysupport] Re: New member (loss ment)

>

Dear Mike,

Thanks for replying.

Just to answer a couple of questions:

The testing that I listed is all that was done.  I have read where
other testing may be indicated and am trying to learn more about them.

We had Dr. Salafia look at our slides.  She didn't have much to look
at since the protocols are different in Latvia. However, she was able
to determine "chronic maternal malperfusion" and some tendencies
toward preeclampsia.  The sample was so small that she couldn't
determine the nature of the problem.  In speaking with Dr. Matzner,
they determined that immune issues were probable in our loss,
however, neither could relate the results directly to the abruption.

I was not taking anything except my thyroid medicine and prenatal
vitamins during pregnancy.  This was our first pregnancy and we
conceived the first month trying.  I had no problems with the
pregnancy...growth normal, u/s normal, so spotting, nothing.....until
the abruption.

The recommended protocol was:
ASA 81 mg, heparin 7500 U, and prednisone 5 mg all 5 days before
ovulation and IVIg 400mg/kg/day for two consecutive days 10 days
prior to ovulation.  Then testing and treatment accordingly
throughout.

I am also worried about the lack of NK suppression by the IVIg....but
don't know what to think about the lack of it stimulating either.

If you have a moment, a quick reminder of your experiences would be
great!

Thanks for your help,
Niki

--- In immunologysupport@yahoogroups.com, Esquire727@M... wrote:
> Not 100% sure about Matzer's testing, but let's give it a try.
>
> Your NK isn't bad, but I'm concerned about "Not supressed with
IVIG".  I think this means the nks were non-responsive to IVIG, which
isn't too good.  It means they are very strong.
>
> You have Hashimotos, which is a hint of other auto-immune
problems.  Further, you have a matching DQ Alpha at 3.0 (meaning you
are more prone to immune aggravation) and you lack blocking
antibodies (meaning the fetus can't protect itself against an attack).
>
> Did you test APAs, ANAs, Protein S, APC Resistence, etc.
>
> Placenta Abruption can be caused by little blood clots behind the
placenta.  You probably need Lovenox and BA.  Also, just because your
NKs were normal, doesn't mean they stay that way.
>
> Did you have a endo biopsy or have a doctor look at the slides from
the latest m/c?  That would be the most insightful thing you can do
at this point.
>
> I would contact Dr. Beer.  I am not a huge fan of Dr. Matzer (as
many on this board).  You definitely have something going on and need
to fine tune your testing and treatment.
>
> Mike
> -------Original Message-------
> From: aizkraukle2 <nikih@c...>
> Sent: 06/22/03 08:29 AM
> To: immunologysupport@yahoogroups.com
> Subject: [immunologysupport] New member (loss ment)
>
> >

Jane

I don't know if its in the wood work, but don't you think it's about time for DB
to write a book.   It would be so most easier for people to get some basic
knowledge w/out searching the internet high and low.  When Jodi had her first 2
m/c, I went to Barnes and Noble and bought every book on m/c.  I didn't even
think about immune issues until I reviewed Jodi's chart from our first RE and
saw she had high ATAs.  That put me the the immune trail.  I'm willing to bet
that there are thousands of people out there that NEVER get put on this trail.


Mike

Had to reread your post.  Completely missed the positive cardiolipids.  You are
at risk for clotting.  Could be related to abruption.

Did you take Heparin last pg?  You probably should switch to Lovenox (better
drug but more $$$).  You probably need a higher dose upon start of second
trimester.  Jodi (my dw) takes 40mg 2x a day (equavalent to 8,000 units of
heparin 2x a day.).

Mike
-------Original Message-------
From: aizkraukle2 <nikih@...>
Sent: 06/22/03 08:29 AM
To: immunologysupport@yahoogroups.com
Subject: [immunologysupport] New member (loss ment)

>

Not 100% sure about Matzer's testing, but let's give it a try.

Your NK isn't bad, but I'm concerned about "Not supressed with IVIG".  I think
this means the nks were non-responsive to IVIG, which isn't too good.  It means
they are very strong.

You have Hashimotos, which is a hint of other auto-immune problems.  Further,
you have a matching DQ Alpha at 3.0 (meaning you are more prone to immune
aggravation) and you lack blocking antibodies (meaning the fetus can't protect
itself against an attack).

Did you test APAs, ANAs, Protein S, APC Resistence, etc.

Placenta Abruption can be caused by little blood clots behind the placenta.  You
probably need Lovenox and BA.  Also, just because your NKs were normal, doesn't
mean they stay that way.

Did you have a endo biopsy or have a doctor look at the slides from the latest
m/c?  That would be the most insightful thing you can do at this point.

I would contact Dr. Beer.  I am not a huge fan of Dr. Matzer (as many on this
board).  You definitely have something going on and need to fine tune your
testing and treatment.

Mike
-------Original Message-------
From: aizkraukle2 <nikih@...>
Sent: 06/22/03 08:29 AM
To: immunologysupport@yahoogroups.com
Subject: [immunologysupport] New member (loss ment)

>

Deb.  I have heard that out of everyone that spots during 1st trimester, many
end up fine.  In other words, the spotting could be something COMPLETELY
UNRELATED to the well-being of the baby.  Unfortunately, w/out an u/s, there is
no way to tell.  My of our friends spotted the entire pregnancy!

More importantly, spotting alone is not a terrible cause for alarm.  It is when
you have spotting and cramping that trouble is brewing.

Try to calm down and get your u/s on Monday.  I'm hoping for you that it's
nothing.

Mike
-------Original Message-------
From: debcourt213 <debcourt213@...>
Sent: 06/22/03 09:02 AM
To: immunologysupport@yahoogroups.com
Subject: [immunologysupport] A little bit of spotting and freaking out...

>

In the last day everytime I go to the bathroom and wipe, the toilet
paper isn't totally clear. It is peachy brown like before you to
start AF. It is not bright red whatsoever, but this is still scaring
me.
I didn't have an ultrasound using a vaginal probe, and I am not on
progesterone suppositories to cause irritation to the cervix, so what
could it be. I am on Prometrium capsules though. I am already 7
weeks, so it is not implantation bleeding.
My first ultrasound is on Tues., but in the meantime I am going nuts!
Has anyone heard of this and everything turn out okay?

Thanks for your support,
Debbie

I wanted to introduce myself as I have been lingering here for some
time trying to get a handle on my immunology test results.  This
group is very active and experienced so I am hoping to get some
feedback.

I am 32, DH 32.  We lost our first baby, son, at 26 weeks in Jan. 03
due to complications of a placental abruption.  He was born living
after an emergency c-setion but passed away two days later.  We were
told that there was no apparent cause of the abruption and all should
be well next time.  We wanted a second opinion, however.  We live in
Latvia and although there are very good doctors and services here, we
felt assistance from specialists were in our best interest.

We sought the help of Dr. Matzner and were able to visit him in CA.
Test results, April 03:

Total T CD3+ lymphs  86 (range 59.4-84)
Total B CD19+  5 (6.4-22)
Helper/Inducer CD4+  67 (29-59)
Supp/Cytotoxic (CD8+) lymphs, Activated T (CD3), Total NK CD16+56,
Cytotoxic (CD5+) all normal range

NK activation
1:50 8.9 (borderline 8.5-10)
no stimulation with IL2
no suppression with IVIg

Quantitative IgM  30 (42-250)
Quantitative IgG, IgA normal
IgG cardiolipin positive
All others negative

T-cells with IgG  1.1 (negative <30)
B-cells with IgG  8 (negative <30)
lacks blocking antibodies

MTHFR heterozygous

DQ alpha  1.1, 3.0  DH 1.2, 3.0

ATA, ANA normal

Prior to pregnancy I was hypothyroid (Hashimoto's) and had treatment
yet during pregnancy my TSH started falling at about 16 weeks and has
continued to slowly do so to where I am just below the normal range.
Treatment has been adjusted but we haven't achieved a steady normal
range yet.

Protocol:  IVIg, heparin, baby aspirin and prednisone prior to
ovulation

I would appreciate any comments on my results.  Any thoughts on
vitamins etc...

Also, we are moving to UK by the end of this summer (Sheffield
area).  We are considering becoming patients of Dr. Beer.  Would
anyone in the UK be willing to correspond with us about their
experiences with immune issues in the UK as well as working with Dr.
Beer?

I am sorry this is so long.  I thought it best to get it all out
there.

Kind regards,
Niki

OK worked it out.... my email account name had been changed
without me knowing by my ISP so Yahoo did not recognise the
extn on it.

Love, Rose


--- In immunologysupport@yahoogroups.com, "cunesca"
<rosemac@m...> wrote:
> Am I being a total nut or ....?
>
> I thought I'd use email to post for once rather than writing
on-line,
> but the emails that I sent to
immunologysupport@yahoogroups
> etc do not appear to have come up.  It's been about 40 minutes
> now so I would have expected them to show in that time.  I
> clicked on the mail link that showed in the messages
> themselves to do so.  Am I doing something wrong?  Is there
> another way to post by email from the digests?
>
> Thank you anyone, Rose

The sizes sound fantastic!  As Niki said, poor Jodi must be ready to pop.
I'm so happy for you that it is all on schedule and I think we're all
looking forward to the 9th almost as much as you!!

BTW, things are moving ahead with my friend with the donor embies.  She was
extremely grateful for your input.  I'm not sure who she got to draw up the
contract, but she is very happy with how things are turning out.

Best to you, love Rose

Hi Dawn

Just wanted to say what a pair of great posts you made yesterday!  And also
to say that I miss your posts in general - so full of useful advice,
information and lots of sense.

Hope you are doing well, love, Rose

Well, that is good news that they are not off the charts which means that
your immune system made a good recovery post your loss.  However these ARE
higher than normal and as we know, anything above normal is not A-OK by DB!
The other side to this is that the risk is now known that your numbers could
flare in pgcy, so wherever you are now it will be important to monitor you
throughout.  Also, have you been taking any precautions, such as fish oil,
or had a course of antibi's?  These could bring numbers down.

The CD19+5 the indicators of antibodies to hormones.  Perhaps DB will want
to check that side further. I've added docs posted on this previously by
Jane for your info.

Wishing you well, Rose


Excerpts from the older version of Dr Beer's Antibodies to Hormones
and Neurotransmitters document (since been deleted)

-------------------

There are five categories of immune problems that can cause
miscarriages, infertility, implantation failures and chemical
pregnancies. Forty-five percent of women with infertility and
implantation failure or IV-ET failures are Category 5 patients. This
means that they have elevated CD 56+ cells that produce tumor
necrosis factor (a chemotherapy molecule) that either damages the
embryo, the trophoblast (placental cell) or the lining of the uterus
(decidua) shortly after the start of pregnancy. This condition has
two treatments:



• Lymphocyte immune therapy (LIT). This decreases the NK cells and
their killing power by 50% 0o and it lasts for 6 months. This works
and is the only therapy needed in 80% of the patients. (See A
consumer's for Lymphophocyte Immune Therapy.) The remainder need
Intravenous Immunoglobulin therapy IVIG (Venoglobulin S).

• IVIG. This medication is added to the test tubes in the NK assay to

determine if it decreases the natural killer cell cytotoxicity. (See A

Reproductive Immunology Patient's Guide to IVIG Treatment). A.good
result is a 50% reduction in the killing power. A bad result is no
reduction and 2% of the patients I see cannot be helped with IVIG and
they must consider surrogacy or adoption. The reduction in killing
power (cytotoxicity) of the NK cells in the test tube by IVIG is then
translated into a dose given to the patient preconception. See below.

I have learned that there are patients who require both IVIG and LIT
just by their history alone. These women fail pregnancy again even if
the NK cells are controlled in the tests if they receive only LIT.

These women have one or more of the following:

Those that have one live born child. Although this is a great
positive, it is a negative factor. 60% of first born children of
couples with secondary infertility or pregnancy losses are DQ alpha
4.1/4.1. Something about these numbers on the placenta tell the woman
that the pregnancy was a cancer and the NK cells are activated and
the uterus behaves like a "den of lions" subsequently.
Antithyroid antibodies or a history of thyroid abnormalities, either
overactive or underactive thyroid function. (See Thyroid Disorders
and and Reproductive Problems of Miscarriage, Implantation failure
and in Vitro Fertilization Failure)
Have an NK Assay that is not suppressed by IVIG.
Have antibodies to hormones or neurotransmitters.

Share DQ alpha 4.1 with their spouses.

Other women of Category 5 have activated and elevated CD 19+5+ cells.
These cells produce antibodies to the hormones FSH, HCG, estradiol
and progesterone. They also produce antibodies to neurotransmitters
which have an essential function in the follicle and the uterus
modeling them for ovulation and implantation. (See Biophysical
Profile)

The normal level of CD 19+5+ cells are 2-10%. Many women with this
problem of Category 5 have levels 30-80%.

This problem is diagnosed by either doing antibody levels from a
blood test to the hormones or skin testing the woman with the
hormones. (See Skin Test Protocol.) The antibodies to
neurotransmitters are more likely in women with a biophysical profile
score of 13 or below.

Neurotransrnitters are serotonin, endorphins and enkaphlins. they
function in many parts of our body especially the brain. Serotonin
controls the mood and keeps us happy and the endorphins and the
enkaphlins are natural opiates and pain relievers in your bodies.
They also function in the uterus. By day 13 or 14 of a normal 28 day
cycle the endorphins and the enkaphlins help prepare the uterine
lining into three zones, five layers and blood flow enters zone three
ready to nourish the embryo. Many women with elevated CD 19+5± cells
have antibodies to their own endorphins and enkaphlins and the lining
does not develop properly and behaves like Teflon when implantation
occurs.

Other women may make antibodies to their own serotonin. Serotonin is
necessary to prepare the uterine muscle for pregnancy. Some women
make antibodies to their own serotonin and this process is interfered
with. On the uterine biophysical profile one can see the uterus on day 13 or
14
contracting three times in two minutes. If this is not occurring then
the possibility is high that antibodies to serotonin exist.

There are often symptoms in women who have antibodies to serotonin
and neurotransmitters that I have learned about.



1. Fibromyalgia: achiness in the small joints and muscles usually in
the morning

2. Increasing depression that has no apparent reason Waking early in
the morning project oriented and unable to get back to sleep. I meet
many of you online at this time. You retreat to your computers and
find solace there.

3. Sweating at night especially over the chest and the breastbone.

4. Increasing PMS symptoms.

5. Increasing "bitchiness" for no apparent reasons.

6. Panic attacks including a feeling of not being able to handle the
work load that before was easy for you.

7. Bad uterine lining of less than 8 mm when tested on day 13 or 14.

8. Poor stimulation even with mega closes of Fertinex, Pergonal,
Gonal F or other drugs.

9. Hormone levels that crash in the middle of the cycle.

Yes the list is large! It is a list of complaints that many of you
have had. You hear your doctor tell you to relax, take a holiday, cut
clown your workload, try again. Comments like this really put the
problem squarely back on your shoulders and give you more guilt,
grief, anger and hopelessness. You do not have to take this.
Something is wrong if your score high on the above list!

Treatment

CD 56+ cells with killing power above 15%

Lymphocyte immune therapy x 2 separated by 4 weeks with testing for
the leukocyte antibody detection assay and the NK assay 4 weeks after
the

second LIT.

IVIG if the killing power is still over 15%. This is given in a
dosage of 25 grams on cycle day 6. 48 hours later an NK assay is
repeated to determine if the killing power is reduced to 15%. If not
another dose is given.

IVIG 25 grams--2 days of embryo transfer if IVF cycle

IVIG 25 grams with a positive pregnancy test. Testing must begin on
cycle day 23, 25, 27 and 29.

IVIG 25 grams every 3 weeks until 10 weeks of pregnancy or until the
NK Assay are lowered to 15% or below.

Elevated CD 19+5+ cells

If the skin test is positive to any of the hormones or there are
antibodies detected to neurotransmitters then the following treatment
is advocated:

• Lymphocyte immune therapy on two occasions with testing one month
after the second LIT.

• IVIG 25 grams on cycle day 6 month one.

• IVIG 25 grams on cycle dax' 6 month two

• IVIG 25 grams on cycle day 6 months three.

Begin cycle of conception:



• IVIG 25 grams cycle day 6

• IVIG 25 grams--2 day prior to ET

• IVIG 25 grams with a positive pregnancy test and every 3 weeks
until you are 10 weeks pregnancy.



-----------------------

Cat 5 Immune Problems document

Taken from : http://repro-med.net/info/cat5-3.php

Chapter 3: CD 19+5+ B Cells (2)
Problem

Normal numbers are 2 - 10%.. Women with problems have increases in
cell numbers above 10%. Produce antibodies to neurotransmitters, including
serotonin, endorphins and enkaphlans. These antibodies cause the ovaries to
be resistant to stimulation, cause a poor lining to develop, interfere with
the muscle development of the uterus, and prevent blood flow to the lining
of the uterus and muscle at the time of implantation. These antibodies can
cause depression, fibromyalgia, sleep disorders, increasing PMS symptoms and
night sweats.


----------------------

Excerpt from Dr Beer's thyroid document ( since been deleted)

----------------------------

The CD 19+ 5+ cells produce antibodies to a variety of hormones
including Estradiol. FSH, LH, Progesterone and HCG. It has recently
been shown that they are Also capable of producing antibodies to
Neurotransmnitters including

Endorphins. Enkaphlins and Serotonin. These neurotransmitters are
important in ovarian and uterine function. Women with antibodies to
these neurotransmitters often stimulate poorly during an ovulation
induction cycle. Suffer premature menopause and have poor uterine
lining responses and blood flow responses to the lining of the uterus
(endometrium) as the uterus models itself for successful implantation
and pregnancy.



Mary Ann wrote:

Well, here are my results (this is nine months after my stillbirth):



On the NK assay, everything was normal except:



CD19 - 12.7; normal 2-12

CD56 - 14.9; normal 2-12

CD19+,CD5+ - 14.9; normal 5-10

SCSA is a Sperm Chromatin something Assay.  It looks for DNA problems in
live sperm.  It is test that is only carried out by the company SCSA -
here's a link for you:

http://www.scsadiagnostics.com/

We had this done just recently when we were in the US - it is not overly
expensive to have done there, but prohibitively so to have a sample
transported from abroad to be tested by them.  MY DH's results were not
great, 26% DNA frag.  Over 30% they rate chances of conception/healthy
embryo low.  However, we did this more out curiosity for our doc than
because we believe in it, since I got pg just a few months before this.  It
is a totally different test to counts, swim-ups etc.

I did also want to respond to your stressed out vent the other day.  As
others have said, we all go through this, and I do understand your time
passing worries and that it doesn't make it easier to be told that you are
young still (although you really really are!).  But I did want to encourage
you to think more closely about what you might gain by seeing Dr Beer
himself.  You say that you are reasonably financially secure (at least that
was my interpretation) and I wonder whether you should not jump on a plane
to Los Gatos and go see the man for yourself.  You already said that phone
consult is pointless because you could not get anyone to treat you in
Australia, but I do wonder if that is absolutely the case, ie, the so-called
colab doc is being a bit of a jerk but perhaps there are other OB's or RE's
that might be receptive to DB's involvement and guidance that just don't
know anythign about it 'til you educate them.  I know, I know.  It is a
minefield, as docs must take full responsibility for the drugs they
prescribe, and you would be hard pressed to get drugs from DB from the US,
or Aussie docs to just follow his recomm's!  But I read Dawn's advice about
docs on this digest with real attention, and I just wonder whether you might
think of doing some interviewing yourself to find someone else to help you.

I am so happy that I am now seeing DB after months of telling myself that it
was unaffordable etc - it still is, but I can live with debt.  I cannot live
with thinking that I didn't do everything I could.

Lastly, your son has the most to gain from having happy healthy parents to
raise him than whether or not he has a sibling - of course you MUST do
everything you can to have another child as that is what you want, but try
not to lose sight of that.  Not that you are, I just wanted to point out
that life is a balance and there are always trade-offs.

I wish you sooooo well, love Rose

Am I being a total nut or ....?

I thought I'd use email to post for once rather than writing on-line,
but the emails that I sent to immunologysupport@yahoogroups
etc do not appear to have come up.  It's been about 40 minutes
now so I would have expected them to show in that time.  I
clicked on the mail link that showed in the messages
themselves to do so.  Am I doing something wrong?  Is there
another way to post by email from the digests?

Thank you anyone, Rose

Sorry, no chance!!!!  We deserve it more than anyone!!

Anyhow, if it makes you any happier, it's showering this morning
- boo hoo.  At least I still have the glow from yesterday's
sunbathing!

love,Rose


--- In immunologysupport@yahoogroups.com, NOLPOST@a...
wrote:
> Well, you must have stolen our sunshine.  Here in the
Northeast U.S.A. we
> have had about 80% rain & clouds since May.  Send it back!!!
>
> Missy