Thanks!
Gongrats on your pregnancy (both of them!)

Catharina

--- In immunologysupport@yahoogroups.com, jennyeitel@a... wrote:
> I had the spotting too and I am pg now so I would follow what he
says and
> also stop the humira and get IVIG.  it will help, JENNY

Hi Carol,

Welcome to the group! If you can get IVIG for $40 a gram infused at
$45 an hour you are getting a good deal!

Below I have added our IVIG resource file, and as you can your prices
are in line with the best.

Best of luck with your IVIG infusion.

Jane

*****************

Where to buy IVIG?

Patient recommended IVIG** pharmacies.

Information gathered from Immunologysupport group discussions

http://groups.yahoo.com/group/immunologysupport/

**Note: Gammunex is Dr. Beer's preferred IVIG brand as of 5/31/04



Updated 5/31/04



1) Columbia Pharmacy* (Recommended)

Gammaguard for $52 per gram if insurance does not pay. Higher prices
if insurance pays
2929 South Ellis Avenue, Chicago, 60616
ph(312) 791-3334. fax (312) 791 3391
* Does not ship outside of the US

2) Accredo (many locations) Comments: "For those paying out of
pocket, Accredo actually matches Columbia's price of $50/gram for
Gammagard. I pay $1250 for the drug and $45/hour for the nursing
services." (Accredo suggested by Chris Sanow)
http://www.accredohealth.net/ati/ivig/ivig_map.html

3) Apothecary in Phoenix
(602-252-6120), Gammagard for $58 per gram. Other brands $55g?
http://theapothecaryshop.com/about.html


4) Partners in Care
Gammagard for $59 per gram
http://partnerincare.com


5) MDR Encino Pharmacy
$58 per gram for "Veno"
http://www.mdrusa.com/services.html
Email info@... or fax 818-788-0607

6) Freedom Drug
Cost: $65 per gram
http://www.freedomdrug.com/

7) Damer & Cartwright
http://www.rxdamer.com


8) International Pharmacy (located in the UK)
ph 011- 44- 208 –381- 1911.
£766 for 25g which includes courier charge
$500 for 10g bottle Octogam
Email: ipo@...
Ask for Howard Turner or Chris

9) Pharmacy city hospital (located in the UK)
0115 962 7673
Ask for Rosemary

10) Blood Diagnostic
www.ivig.com $49 per gram.
110 Centrum Dr.
Irmo, SC 29063
Phone: (800) 948-9834 Fax: (803) 781-3349

11) Healthcare@Home (Located in the UK)
£1250 for a 25gm infusion

12) IVP Pharmacy in Frisco
(800) 424-9002

13) Parks Infusion (possibly?)
214-866-2700 "good price"

14) Florida Infusion
http://www.floridainfusion.com/html/ivig.asp


Other helpful tips to get IVIG:

1. Avoid infertility and recurrent pregnancy loss codes, Use
autoimmune codes.

Blue Cross/Blue Shield accepted diagnosis codes for IVIG:

279 - Disorders involving the immune mechanism

279.06 - Common variable immunodeficiency Dysgammaglobulinemia
(acquired)

Other accepted IVIG diagnosis codes:

http://www.asco.org/ac/1,1003,_12-002393-00_18-00,00.asp?
state=AL&CAC_ArticleId=24430



2. Gammassist: Financial assistance program for patients using the
Gammagard brand of IVIG

http://www.immunedisease.com/NASApp/immune/display/gammassist?
GXHC_gx_session_id_=GXLiteSessionID-5056461475694660195&

3. Read "Insurance help" folder located in the group files.

http://health.groups.yahoo.com/group/immunologysupport/files/Insurance
%20help/

4. Join a research trial to get free IVIg treatment:

IVIG trials:
http://www.bcricwh.bc.ca/our_research/researchers/researcher_by_name/m
ary_stephenson.htm

http://www.haveababy.com/news/ivigstudy%2Dold.asp?site=<%=city%


--- In immunologysupport@yahoogroups.com, "acgirotto"
<acgirotto@y...> wrote:
> Hi. I'm new to this bb. A wonderful person from Network 54 told me
> about it today. I'm trying to find the least expensive place to
have
> an IVIG infusion in So. Ca (LA or Ventura County) and wonder if any
> of you have any advice.  I just found out today that my RE is now
> recommending it and I need to have my first infusion done by
> Tuesday. My clinic charges $350 for the first hour of infusion and
> $150 for each following hour, but I found a home infusion company,
> Accreda, that does it for $45 an hour and charges $40 a gram for
> Gammagard. Does that sound reasonable?
>
> Carol

----- Original Message -----

From: MM

To: immunologysupport@yahoogroups.com

Sent: Wednesday, June 30, 2004 12:33 PM

Subject: [immunologysupport] Re: Cherylann: quick update on the twins!

Cherylann,
It so good to know that I can have what you have.  Thanks for the
update.

miz
--- In immunologysupport@yahoogroups.com, "Marci"
<happyiguana2003@y...> wrote:
> Hi Cherylann,
> I swear I just can't get enough of your updates on your babies.
> Thanks for posting this. I loved reading how everyone is doing and
> I'm so glad for you!
>
> Marci
>
> --- In immunologysupport@yahoogroups.com, "Cherylann Foster"
> <f.cherylann@v...> wrote:
> > BlankHi all. I just thought I would give you all a quick update
on
> the boys! It is official I am growing a air of giants!
> > I brought them to the Dr. yesterday and at 14.5 weeks they weigh
> Shane- 14.8 and Sean 15.13! I asked him when I could start feeding
> them a little food and he said not yet they are already so huge he
> doesn't want them to get too big. I said you mean they are as big
as
> a normal 3 1/2 month old? He said they are BIGGER!
> > They are really pretty healthy except for some constipation not
> relieved by lactulose(a concentrated sweet type medicine) so he
has
> they  now on miralax.Poor things Sunday were in agony!Stool was
stuck
> in there, man the things you never knew you would go thru! It was
so
> horrible watching Shane's little face in so much pain! I had tried
> everything from rubbing the tummy to rectal stimulation. Anyway
this
> should take care of it.
> > They are laughing and cooing away. they actually laugh more in
> their sleep than when they are awake which is kind of funny, they
> smile tons tho and always have a wonderful big smile for mommy
which
> melts my heart and makes all the horrible stuff in the past 4
years I
> went thru to get them all worth it.They are going to be a couple
of
> charmers tho and I am going to have to be careful because one look
> from them and I am a goner! They will be getting away with murder
if
> I am not



**Information in this group not to substitute for medical advice. Please consult with your physician before undergoing any form of medical treatment**

----- Original Message -----

From: Christine Sherratt

To: immunologysupport@yahoogroups.com

Sent: Wednesday, June 30, 2004 4:10 PM

Subject: [immunologysupport] TO Cheryl ...Re: quick update on the twins!

Cheryl,

Thanks for your warm story/update on your special boys.  It made me
cry.  I am new on this journey and Jane is right, we do need these
to keep us going--the world often tries to tell me to stop having
hope; stop trying, but thanks so so much.  You are an inspiration.

jana

--- In immunologysupport@yahoogroups.com, "Jane Reed" <edreed@p...>
wrote:
> Cheryl,
>
> It melts my heart to read your update Your story is really what
this
> journey is all about... Your dream is "it" and YOU have it!
Holding
> two dearest sweetest boys and all the past misery seems to melt
away.
> I read your post and I know if you can do this ( with your immune
> problems, health problems, doctor problems, health problems,
distance
> problems), anybody can do this, and I know there is light at the
end
> of for every single one of us. Be it IVF or Humira or donor eggs
or
> adoption we can all have a baby to have to hold *you* are the
living
> inspiration to us all.
>
> I hope we get some updated pictures soon.  I cannot wait to see
these
> big growing boys of yours. I remember the pictures you shared a
year
> ago when they were just little "dots" little blastocysts. Weird
isn't
> it. Now these "dots" are human beings!!
>
> Keep posting and keep sharing your updates. We need more of "the
> other side of the tunnel" so to speak. We all, need a reason to
keep
> up all these shots and tests and retests and flares and negative
> pregnancy tests...a goal to strive for. 
>
> Thanks Cheryl. Your story is our posterchild!
>
> Jane
>
> --- In immunologysupport@yahoogroups.com, "Cherylann Foster"
> <f.cherylann@v...> wrote:
> > BlankHi all. I just thought I would give you all a quick update
on
> the boys! It is official I am growing a air of giants!
> > I brought them to the Dr. yesterday and at 14.5 weeks they weigh
> Shane- 14.8 and Sean 15.13! I asked him when I could start feeding
> them a little food and he said not yet they are already so huge he
> doesn't want them to get too big. I said you mean they are as big
as
> a normal 3 1/2 month old? He said they are BIGGER!
> > They are really pretty healthy except for some constipation not
> relieved by lactulose(a concentrated sweet type medicine) so he
has
> they  now on miralax.Poor things Sunday were in agony!Stool was
stuck
> in there, man the things you never knew you would go thru! It was
so
> horrible watching Shane's little face in so much pain! I had tried
> everything from rubbing the tummy to rectal stimulation. Anyway
this
> should take care of it.
> > They are laughing and cooing away. they actually laugh more in
> their sleep than when they are awake which is kind of funny, they
> smile tons tho and always have a wonderful big smile for mommy
which
> melts my heart and makes all the horrible stuff in the past 4
years I
> went thru to get them all worth it.They are going to be a couple
of
> charmers tho and I am going to have to be careful because one look
> from them and I am a goner! They will be getting away with murder
if
> I am not careful!
> > The physical therapists came out from early intervention because
> they saw them in the class I bring them too every week and thought
> their little necks were tight.The both tend to sleep and look
towards
> the left alot. So they came and worked on them, man I tell you
that
> was Monday. Monday night was a horror show, they were so sore
after
> that!Whimpering, oh it was tough!Other than that they are doing
> well.They capture everyone's heart who sees them, and mommy is so
n
> love with them , I never thought it was possible to love anyone or
> anything this much!They even love my off key singing with my
cracking
> voice at 3 in the morning, now what's not to love about that?
> > Cherylann Foster-Proud mommy to two Beer Baby Boy twins-Sean and
> Shane- 03/09/2004



**Information in this group not to substitute for medical advice. Please consult with your physician before undergoing any form of medical treatment**

----- Original Message -----

From: Jane Reed

To: immunologysupport@yahoogroups.com

Sent: Wednesday, June 30, 2004 4:03 PM

Subject: [immunologysupport] Cheryl ...Re: quick update on the twins!

Cheryl,

It melts my heart to read your update Your story is really what this
journey is all about... Your dream is "it" and YOU have it! Holding
two dearest sweetest boys and all the past misery seems to melt away.
I read your post and I know if you can do this ( with your immune
problems, health problems, doctor problems, health problems, distance
problems), anybody can do this, and I know there is light at the end
of for every single one of us. Be it IVF or Humira or donor eggs or
adoption we can all have a baby to have to hold *you* are the living
inspiration to us all.

I hope we get some updated pictures soon.  I cannot wait to see these
big growing boys of yours. I remember the pictures you shared a year
ago when they were just little "dots" little blastocysts. Weird isn't
it. Now these "dots" are human beings!!

Keep posting and keep sharing your updates. We need more of "the
other side of the tunnel" so to speak. We all, need a reason to keep
up all these shots and tests and retests and flares and negative
pregnancy tests...a goal to strive for. 

Thanks Cheryl. Your story is our posterchild!

Jane

--- In immunologysupport@yahoogroups.com, "Cherylann Foster"
<f.cherylann@v...> wrote:
> BlankHi all. I just thought I would give you all a quick update on
the boys! It is official I am growing a air of giants!
> I brought them to the Dr. yesterday and at 14.5 weeks they weigh
Shane- 14.8 and Sean 15.13! I asked him when I could start feeding
them a little food and he said not yet they are already so huge he
doesn't want them to get too big. I said you mean they are as big as
a normal 3 1/2 month old? He said they are BIGGER!
> They are really pretty healthy except for some constipation not
relieved by lactulose(a concentrated sweet type medicine) so he has
they  now on miralax.Poor things Sunday were in agony!Stool was stuck
in there, man the things you never knew you would go thru! It was so
horrible watching Shane's little face in so much pain! I had tried
everything from rubbing the tummy to rectal stimulation. Anyway this
should take care of it.
> They are laughing and cooing away. they actually laugh more in
their sleep than when they are awake which is kind of funny, they
smile tons tho and always have a wonderful big smile for mommy which
melts my heart and makes all the horrible stuff in the past 4 years I
went thru to get them all worth it.They are going to be a couple of
charmers tho and I am going to have to be careful because one look
from them and I am a goner! They will be getting away with murder if
I am not careful!
> The physical therapists came out from early intervention because
they saw them in the class I bring them too every week and thought
their little necks were tight.The both tend to sleep and look towards
the left alot. So they came and worked on them, man I tell you that
was Monday. Monday night was a horror show, they were so sore after
that!Whimpering, oh it was tough!Other than that they are doing
well.They capture everyone's heart who sees them, and mommy is so n
love with them , I never thought it was possible to love anyone or
anything this much!They even love my off key singing with my cracking
voice at 3 in the morning, now what's not to love about that?
> Cherylann Foster-Proud mommy to two Beer Baby Boy twins-Sean and
Shane- 03/09/2004



**Information in this group not to substitute for medical advice. Please consult with your physician before undergoing any form of medical treatment**

----- Original Message -----

From: Pookie Martin

To: immunologysupport@yahoogroups.com

Sent: Wednesday, June 30, 2004 12:07 PM

Subject: [immunologysupport] Cherylann re: twins' necks/heads

Hi Cherylann,

Congratulations on your twins!  I am glad they are growing to be big and strong.

Something in your post caught my eye – you mentioned that the boys’ necks are tight, and they favor the left side of the their heads.  The neck tightness may be a condition called torticollis; my DD doesn’t have it so I’m not too familiar with it, all I know is that it’s a tightness in the neck muscles that is usually resolved with physical therapy.  The tightness causes them to favor one side of the head, which is what I do know about.  That can lead to a condition called plagiocephaly (“parallelogram head”) which my DD does have.  She was a preemie, born at 34 1/2 weeks, and developed a moderate case of plagio by favoring the right side of her head.  She has been in a corrective helmet since 7 months old; her first birthday was yesterday.  It’s not the worst thing in the world, Truly doesn’t mind it. But she’s just so darn cute without the helmet, I wish her treatment would hurry up and end.  She probably has 2 more months in the helmet.

Anyway, the thing about plagio is that you can circumvent a lot of the effects by repositioning the baby’s head.  For more information on torticollis and plagio, there’s a great Yahoo group:

<*> To visit your group on the web, go to:
     http://groups.yahoo.com/group/Plagiocephaly/


For examples of plagio and other head-shape issues, go to www.cranialtech.com.  My daughter’s helmet is not from there, but the CT bands are v. popular.  The site also shows examples of the different head-shape issues. The photos are really extreme — my DD’s head shape was nowhere near the plagio example — but it gives you an idea of what can happen.  

One other thing – you may need to be proactive about getting your ped to pay attention to the plagio if your boys  get it.  My ped said, “oh, don’t worry, her head will correct itself,” which of course it did not.  When she was 6 months old I got a referral to see a pediatric craniofacial surgeon, who confirmed that  she had moderate positional plagio and recommended the helmet.  She had it a month later. I wish I could’ve had her in a helmet a couple of months earlier — the orthotist says that 4-5 months is the ideal time, although kids can wear a helmet up to 2 years.  Anyway, you might want to get the boys checked out soon.

Best regards,
Pookie


**Information in this group not to substitute for medical advice. Please consult with your physician before undergoing any form of medical treatment**

At 08:44 PM 6/30/2004, you wrote:
>Does anyone know how one goes about getting Humira. How do I get
>insurance to cover it? I have a prescription for it. Do I take it to
>a regular pharmacy? Do they call the insurance for coverage like they
>do for normal prescriptions?

Your best bet is to call Columbia pharmacy (# in the files) and ask them
what to do for your insurance. Talk with Ed or Dennis - not just whoever
answers the phone.

>What is the category it is classified
>under? I have Blue Cross PPO. Does anyone else deal with Blue Cross
>PPO? Shld I just buy it as a regular medicine and send a claim later
>to the insurance company?

No, I wouldn't....very risky.

>Also, for Folgard, is generic OK or shld it be prescription brand?

There is currently no generic version of Folgard, as of last month anyway.
Drugstore.com has it for fairly cheap, you mail or FAX in your prescription.


Lisa S

At 11:45 AM 6/30/2004, you wrote:
>No, I meant OPK. Recent studies have shown that LH and the hCG
>produced in the first week of pregnancy are so similar in structure
>that an OPK can effectively detect pregnancy before most HPTs.

COOL!!!  I think I will test out that theory.  I have some cheap (but
supposedly very accurate OPKs left, and DB told me to start testing really
early, I think I'll test with one of each.

Do you know, will there be any line at all if it is negative? Does it have
to be as dark as the reference line?


Lisa

--- In immunologysupport@yahoogroups.com, "sangeetha" <kollurus@y...>
wrote:
> OPK - Ovulation Predictor Kit
> HPT - Home Pregnancy Test
>
> You may want to look up the dictionary of acronyms/terms in the
Files
> section of this support group as there are many terms in there that
> might help.
>
> Sangeetha.
>
> --- In immunologysupport@yahoogroups.com, "Christiane Marshall"
> <enochacres@l...> wrote:
> > Loran: Sorry for my ignorance.  What's an opk and an Hpt? Thanks!
> Christiane
> > --
> > _______________________________________________
> > Find what you are looking for with the Lycos Yellow Pages
> >
>
http://r.lycos.com/r/yp_emailfooter/http://yellowpages.lycos.com/defau
> lt.asp?SRC=lycos10

Hi. I'm new to this bb. A wonderful person from Network 54 told me
about it today. I'm trying to find the least expensive place to have
an IVIG infusion in So. Ca (LA or Ventura County) and wonder if any
of you have any advice.  I just found out today that my RE is now
recommending it and I need to have my first infusion done by
Tuesday. My clinic charges $350 for the first hour of infusion and
$150 for each following hour, but I found a home infusion company,
Accreda, that does it for $45 an hour and charges $40 a gram for
Gammagard. Does that sound reasonable?

Carol

Hi Ellen,
I had heard it's a good thing and very normal. Though most women
don't feel it b/c they aren't analyzing every little thing the way we
all do!

Good luck!

Marci

--- In immunologysupport@yahoogroups.com, "wnt2bamom2001"
<wnt2bamom2001@y...> wrote:
> Is mild cramping around implantation time a good thing or a bad
thing?
> or maybe I am over-imagining every little feeling.
> Thanks,
> Ellen

OPK - Ovulation Predictor Kit
HPT - Home Pregnancy Test

You may want to look up the dictionary of acronyms/terms in the Files
section of this support group as there are many terms in there that
might help.

Sangeetha.

--- In immunologysupport@yahoogroups.com, "Christiane Marshall"
<enochacres@l...> wrote:
> Loran: Sorry for my ignorance.  What's an opk and an Hpt? Thanks!
Christiane
> --
> _______________________________________________
> Find what you are looking for with the Lycos Yellow Pages
>
http://r.lycos.com/r/yp_emailfooter/http://yellowpages.lycos.com/defau
lt.asp?SRC=lycos10

Does anyone know how one goes about getting Humira. How do I get
insurance to cover it? I have a prescription for it. Do I take it to
a regular pharmacy? Do they call the insurance for coverage like they
do for normal prescriptions? What is the category it is classified
under? I have Blue Cross PPO. Does anyone else deal with Blue Cross
PPO? Shld I just buy it as a regular medicine and send a claim later
to the insurance company? Shld I call insurance and ask if it is
covered? Same questions for Lovenox except that Lovenox is needed for
so much more longer time vs. Humira is only once in two weeks.

Also, for Folgard, is generic OK or shld it be prescription brand?

Thanks,
sangeetha.

Jane, Janessa, and Happy Iguana,

Thanks for your support in letting me vent and providing some very
valuable answers to my email below. I wanted to write earlier and say
thanks, but was too sick with the flu. I did start typing an email
and lost it all!!

I decided to go for the Donor plus Paternal LIT even tho' Chris
discouraged it due to her various reasons. I did find a LIT donor for
July 11th and will be going there.

Does anyone else find inconsistencies in what Chris sometimes says?
However, I still prefer talking to her than Meena. I wish he would
get some real asst doctors who can answer our questions acc to his
thought process.

I got my protocol letter. I guess I'm officially on the treatment
plan course now. Excited and scared...!

Yes - I did get the patient book - however it costed me $21 not $40
like u'd mentioned Marci.

Thanks again. Appreciate all your help in supporting me - I think it
was the hormones and depression. It was PMS and also the fact that I
was turning 32 and still childless when I had kind of hoped 10 yrs
ago when I got married it would never be this much of a challenge and
had planned on having my kids et al done by 30. Also, seeing all my
friends with their second kids doesn't help. It's like baby fever in
the air. I am the only one in my circle of friends w/o a kid - so
much for assumptions abt being done with kids by 30!!

So thanks for listening.

Sangeetha.

--- In immunologysupport@yahoogroups.com, "sangeetha" <kollurus@y...>
wrote:
> someone pls help with sorting this out:
>
> I consulted with DB on 11th, thought I understood absolutely
> everything he said for my protocol, one of which is doing LIT with
> Paternal PLUS Donor. He said single dose first during the
> conversation, then towards the end, when i summarized - DH asked
abt
> the dose again and he said double dose. And i said "but u just said
> single dose" (i had this on tape too!) - so he said double. so i
> asked him do u mean single of paternal and single of donor - he
said
> Yes - in each arm. he says start humira AT THE SAME TIME of LIT and
> test after 30 days so i am all happy and look for donors on this
> group and one kind person on this group offered for june 26th. then
i
> call chris and she completely threw me off base that we finally
> argued. I was soooo confused by what she said,
>
> 1. she says DB never orders donor and doesn't know why he ordered
it
> for me.
>
> 2. she thinks i can just do paternal (well - i can't make the
> decision here, i follow what he says is what i told her!)
>
> 3. she thinks 85% of the people go back for the 2nd LIT, so i
> definitely will need a 2nd time and a 3rd time after 3 wks each
> (that's not what DB said at all - he said NOTHING abt 2nd or 3rd
> esplly not after the timeframe of 3 wks!)
>
> 4. She says i need to have the same donor each time!! I had no idea
> abt this - that's an assumption DB made that i would know. I can't
> have someone commit to travel plans like that.
>
> 5. she says every time i send my blood to finch to test the LAD's
the
> donor needs to send her blood too to finch the same day and i have
to
> pay for fedex (which i have absolutely NO problem - but how can i
> impose on my donor or even assume i knew this??!!)
>
> 6. she confused me by saying they NEVER do single and so when he
> wrote double he meant double of Paternal AND double of donor (that
> adds to 4 i reminded her and she said Yes!).
>
> 7. All this freaked me out and i said sarcastically - shldn't i be
> told all this at the consult when i drive that far, wait 3 months,
> pay out of pocket for consult (that too above avg fees) and she
said
> when a person checks out, this shld be told, but dhristi (the girl
> there that week) doesn't know anything - leave alone the difference
> between paternal and donor (why do they have her helping there then
> and checking out patients???!) and i was so frustrated and
said "what
> do u want me to do" - she says follow what DB said! I said but u
just
> opposed everything he said - she said " i wasn't part of the
consult,
> he dint take down notes on ur file and therefore i am coming across
> stupid to u on the phone" - i wanted to say - i don't care whether
u
> sound stupid or not, it's not a question of pride - it's my life
and
> all of u at the dr's office need to stick to the same story! of
> course i didnt say that. but I AM VERY ANGRY abt this conflicting
> opinions - what do i do? And then i finally ask her "is there
> anything i need to know abt humira" and she says yeah - do the TB
> skin test - i said "whaaat test" and she  says " he always forgets
to
> write that on the prescription!! if it's negative, start humira, if
> not can't start humira (then when does one start humira) - the
point
> being why didnt HE TELL ME ALL THIS!! i don't pay top dollar to
> figure out all this on my own thru divine powers or magic
knowlege!!
>
> then she says start humira a week after LIT - he said start humira
> and LIT at the same time!! i just read on this board that it's not
a
> good idea to start these two at the same time.
>
> then she says it takes 6 wks for LIT's effect to ttc. but DB said
> after 30 days of LIT and 2 doses of humira (4 wks), then do the
tests
> to see the numbers, if ok, then ttc. so that's another conflict.
> What's going on here - does everybody go thru this after his
consult
> and difference in stories? Why pay so much if I end up so confused
by
> his staff and his protocol?? UGggggggggggggghhhh. now i need to
find
> a donor i can tag along each time and so that person obviously will
> not be part of this group meaning i have to find a person and have
> them test DQ alphas and infectious diseases testing!
>
> oh well - now i feel better. thanks for listening - i was so
agitated
> and keyed up abt this all day, i couldn't work. i felt like going
and
> quitting my job so that i could concentrate on this stuff - but
> again, where does the green stuff come from to pay for all this!!!
> sigh!! why do people suffer thru all this for babies and then
others
> who do all kinds of things to the kids they have?!
>
> any idea how much humira and lovenox costs? how do i go abt trying
to
> see if insurance covers it and what is the category u quote? is
> humira taken for the same reason that lovenox is taken?
>
> thanks so much - sorry for the long email.
>
> sangeetha.

It was  very important for me to read this bit of information. I
liked to think that, with some exceptions, most eggs do not implant
because of the immune issues/hormonal imbalances that we accumulate
with age, rather than chromosomal problems. Your information sure
points otherwise. You are lucky to be able to afford St. Barnabus and
PGD. These are out of my league. I am a Check patient, so I never
know why an IVF did not work: bad eggs, or immune issues.
Cortina



--- In immunologysupport@yahoogroups.com, "Maryann" <smilemtb@e...>
wrote:
> RE recommended PGD to me because I had a trisomy 2 m/c (my second
m/c) and
> my age was over 35 (36 at the time).  RE totally believes that it
is bad
> eggs for me...they do not believe in immune tx....in fact when I
mention it
> to them they just clam up.  Truthfully, I'd rather have it that way
compared
> to some of the responses the ladies on this board have gotten from
their RE
> when immune tx is mentioned.
>
> What is your pet theory?
>
> Over the 3 IVF's I've had, I had a total of 42 eggs, and only 3 were
> chromosomally normal (1 took and was ds, the second that was put
back with
> ds did not take and I'm now doing the 2ww on the 3rd).  Even with
an error
> rate for PGD, that is pretty damn bad.  And I have an excellent
FSH!!
> Fluctuates between 5 and 8.  Dr. Beer believes that my immune
system is
> responsible for damaging my eggs.  Can't imagine all the m/c I
would have
> had without PGD.  Dispite the controversey, I feel comfortable
taking this
> route.
>
> Maryann
> NJ
>
> Message: 4
>    Date: Wed, 30 Jun 2004 14:45:08 -0000
>    From: "cortina" <srglsv@y...>
> Subject: Maryann, question for you
>
> Maryann,
> I believe a compacting embie is very good. Congratulations on your
> smooth transfer!
> May I ask why you are using pgd? I know RE often blame failures
> on "bad eggs", and it is one explaination that I stubbornly refused
> to believe so far. I always liked to attribute IVF failure to immune
> issues, hormonal imbalances, and some bad eggs, of course. Your
story
> takes the wind out of my pet theory, but maybe I should start facing
> reality.
> Cortina

Thanks so much for sharing Cheryl!  : )

Maryann
NJ

Message: 3
    Date: Wed, 30 Jun 2004 05:10:57 -0400
    From: "Cherylann Foster" <f.cherylann@...>
Subject: quick update on the twins!

BlankHi all. I just thought I would give you all a quick update on the boys!
It is official I am growing a air of giants!
I brought them to the Dr. yesterday and at 14.5 weeks they weigh Shane- 14.8
and Sean 15.13! I asked him when I could start feeding them a little food
and he said not yet they are already so huge he doesn't want them to get too
big. I said you mean they are as big as a normal 3 1/2 month old? He said
they are BIGGER!
They are really pretty healthy except for some constipation not relieved by
lactulose(a concentrated sweet type medicine) so he has they  now on
miralax.Poor things Sunday were in agony!Stool was stuck in there, man the
things you never knew you would go thru! It was so horrible watching Shane's
little face in so much pain! I had tried everything from rubbing the tummy
to rectal stimulation. Anyway this should take care of it.
They are laughing and cooing away. they actually laugh more in their sleep
than when they are awake which is kind of funny, they smile tons tho and
always have a wonderful big smile for mommy which melts my heart and makes
all the horrible stuff in the past 4 years I went thru to get them all worth
it.They are going to be a couple of charmers tho and I am going to have to
be careful because one look from them and I am a goner! They will be getting
away with murder if I am not careful!
The physical therapists came out from early intervention because they saw
them in the class I bring them too every week and thought their little necks
were tight.The both tend to sleep and look towards the left alot. So they
came and worked on them, man I tell you that was Monday. Monday night was a
horror show, they were so sore after that!Whimpering, oh it was tough!Other
than that they are doing well.They capture everyone's heart who sees them,
and mommy is so n love with them , I never thought it was possible to love
anyone or anything this much!They even love my off key singing with my
cracking voice at 3 in the morning, now what's not to love about that?
Cherylann Foster-Proud mommy to two Beer Baby Boy twins-Sean and Shane-
03/09/2004



[This message contained attachments]

RE recommended PGD to me because I had a trisomy 2 m/c (my second m/c) and
my age was over 35 (36 at the time).  RE totally believes that it is bad
eggs for me...they do not believe in immune tx....in fact when I mention it
to them they just clam up.  Truthfully, I'd rather have it that way compared
to some of the responses the ladies on this board have gotten from their RE
when immune tx is mentioned.

What is your pet theory?

Over the 3 IVF's I've had, I had a total of 42 eggs, and only 3 were
chromosomally normal (1 took and was ds, the second that was put back with
ds did not take and I'm now doing the 2ww on the 3rd).  Even with an error
rate for PGD, that is pretty damn bad.  And I have an excellent FSH!!
Fluctuates between 5 and 8.  Dr. Beer believes that my immune system is
responsible for damaging my eggs.  Can't imagine all the m/c I would have
had without PGD.  Dispite the controversey, I feel comfortable taking this
route.

Maryann
NJ

Message: 4
    Date: Wed, 30 Jun 2004 14:45:08 -0000
    From: "cortina" <srglsv@...>
Subject: Maryann, question for you

Maryann,
I believe a compacting embie is very good. Congratulations on your
smooth transfer!
May I ask why you are using pgd? I know RE often blame failures
on "bad eggs", and it is one explaination that I stubbornly refused
to believe so far. I always liked to attribute IVF failure to immune
issues, hormonal imbalances, and some bad eggs, of course. Your story
takes the wind out of my pet theory, but maybe I should start facing
reality.
Cortina

I've had my 6th IVIG in 8 months.  Just wondering, how many ivig's are
too many?  Don't you suppose there might be another underlying problem
here that isn't being addressed?  I hope I have not contracted something
serious.   I hope keeping my immune system suppressed is NOT compromising
my long-term health.   Thank you for your thoughts.

________________________________________________________________
The best thing to hit the Internet in years - Juno SpeedBand!
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Hi Dawn,

I will definitely put Alison's article into the files section for all
of us to refer to.

I will add it to our files section under "Environment Disease and
Fertility"

http://health.groups.yahoo.com/group/immunologysupport/files/

Thanks for your interest.

Jane



--- In immunologysupport@yahoogroups.com, "Dawn" <mcmichael@i...>
wrote:
> I'm soooo glad to hear that there are highly educated individuals
> researching this.  I would love to read your article.  Could you
put
> it in the files section.  I certainly understand that further
> research and studies need to be done to get clear answers, but for
> me, I'm sick of being a ginnea pig.  Please keep us informed with
> any new info on this topic.
> Thanks, Dawn
>
>
> --- In immunologysupport@yahoogroups.com, "Alison Carlson"
> <alison_carlson@s...> wrote:
> > I have paid a fair bit of attention to this. I just wrote an
> article for the
> > next issue of Resolve's Family Building magazine on reproductive
> toxicants -
> > with a scientist and a doctor who heads Stanford's REI clinic.
> It's geared
> > toward helping IF patients think about the new science emerging.
> But this
> > new knowledge doesn't have a lot of certain or clear answers...It
> is good to
> > do what one can to reduce exposures, as a  precautionary
approach -
>  but
> > there's a long way to go before we know what levels of exposure
do
> what in
> > humans...
> >
> > Alison
> > ----- Original Message -----
> > From: "Dawn" <mcmichael@i...>
> > To: <immunologysupport@yahoogroups.com>
> > Sent: Tuesday, June 29, 2004 7:27 PM
> > Subject: [immunologysupport] Re: personal care products report +
> repro
> > toxicants
> >
> >
> > > Did anyone look at this?????  Reproductive toxics are
everywhere
> in
> > > your home.  They are so easy to replace, I don't understand why
> > > people wouldn't want to.
> > >
> > >
> > > --- In immunologysupport@yahoogroups.com, "Alison Carlson"
> > > <alison_carlson@s...> wrote:
> > > > Hello All,
> > > >
> > > > I wanted to point your attention to a report released
> yesterday by
> > > the Environmental Working Group titled "Skin Deep,"  which
> focuses
> > > on toxic chemicals (including reproductive toxicants) found in
> > > personal care products. You can find the report's executive
> summary
> > > at
> > >
> http://www.ewg.org/reports/skindeep/report/executive_summary.php .
> > > You may want to click on Pregnancy Concerns on the left side
> menu.
> > > >
> > > > Alison
> > >
> > >
> > >
> > >
> > > **Information in this group not to substitute for medical
> advice. Please
> > consult with your physician before undergoing any form of medical
> > treatment**
> > >
> > > Yahoo! Groups Links
> > >
> > >
> > >
> > >
> > >
> > >

Hi Christine,

Welcome to the group!

First of all, I am so sorry about this your miscarriage. Nothing can
take the pain away. But a loss on Lovenox baby aspirin, prednisone
and Prometrium only confirms to me what your problem is.  Your
protocol covered  every immune issue *except* the  "Biggy" the
category 5  NK/Th1Th2 issues. I feel certain have category 5 immune
issues that were left untreated and that Dr Beer can help you.

See:

http://repro-med.net/info/cat1-5.php#cat5

(Category 5 immune problems, overview)


Ladies with with a previous live birth followed by recurrent
miscarriages have category 5 issues with the highest incidence.
Treatment may involve LIT, IVIG in some cases Humira. But the good
news: these therapies *work*. See our success stories file:

http://health.groups.yahoo.com/group/immunologysupport/files/

If you had D&C with your last miscarriage, you can send the preserved
tissue into Dr Beer's lab for complete immune evaluation. This often
gives thge most answers for the least cost:

http://repro-med.net/tests/patho.php

  (Pathological evaluation of pregnancy tissue)

I would have some basic blood testing done. I am certain this will
find some answers for you:

NK Assay
http://repro-med.net/tests/nkassay.php

Cytokines
http://repro-med.net/tests/th1th2.php

plus LAD and DQ alpha testing

See our group files under "Recommended Immune Testing" for more
information about these tests.

Also, I would write Dr Beer himself, mention you are a member of this
Yahoo group, I am sure he will help you by email. He does not charge
for non registered patient emails and will surely give you guidance
about your case:

Beerdoc@...

Also look in our Collaborating doctor file to find a local doctor
that will work with you and Dr Beer long distance.

If you are wondering about what IVIG and LIT Humira involves, read
our in our group files "Immune treatments, what are they?"
I have added some articles below.

Please have hope. We will help you every step along the way. I am
certain there are answers for you and that Dr Beer can help you .

See related Dr Beer discussion board posts and articles I have added
below.

Jane

Link:

http://repro-med.net/papers/2ndabor.php

(Infertility and Miscarriages following a live born child)

Dr Beer discussion board posts:

************
I have a three year old
>son, and have also had
>4 miscarriages before 12 weeks.
I AM SO SORRY FOR YOU.
> One was before my
>son was born, and the
>last three have been within
>the past year. Each time
>I have gotten pregnant the
>first month, I just can't
>seem to keep the pregnancy.
THIS IS VERY TYPICAL OF WOMEN WHO:
1. SHARE DQ ALPHA 4.1 WITH THEIR SPOUSE
2. HAVE CATEGORY 5 IMMUNE PROBLEMS
3. REQUIRE LIT PATERNAL AND DONOR
4. HAVE NK CELLS IN THEIR BLOOD AND IN THEIR UTERUS
5. REQUIRE ENBREL THERAPY.
6. THEY ALSO HAVE THE HIGHEST TNF ALPHA LEVELS.
YOU NEED TO SPEAK TO ME AND SEND ME THE TISSUES FROM THE LOSSES
(PARAFFIN BLOCKS)
**************

Also do you suggest
>using the prednisone instead of
>IVIG until I get CVS

IF THERE ARE CATEGORY 3 IMMUNE PROBLEMS I USE PREDNISONE. IF THERE
ARE CATEGORY 5 IMMUNE PROBLEMS I USE THE LIT AND THE IVIG. PREDNISONE
DOES NOTHING FOR CATEGORY 5 IMMUNE ISSUES. IVIG REPLACES PREDNISONE
FOR CATEGORY 3 IMMUNE ISSUES.

>results of my next pregnancy.
> I saw on the
>IVF board that many drs.
>use this as an alternative
>and my insurance won't cover
>IVIG.

IT IS NOT AN ALTERNATIVE. IS IS A POOR, POOR SUBSTITUTE WHICH IN MY
MIND DOES NOT WORK FOR CATEGORY 5 IMMUNE PROBLEMS. IF YOU HAVE
ELEVATED CD 56+ CELLS AND CANNOT TAKE IVIG THEN I RECOMMEND
DEXAMETHASONE 1 MG DAILY. THIS DOES PREVENT CELL DIVISION OF NK CELLS
THAT CAN KILL

************

After two successful pregnancies, one blighted ovum, and one mc at
week 10 after having seen a heartbeat, I tested positive for elevated
APA, including ANA and anticardiolipin. I was referred to a
perinatologist, who recommended I wait two cycles, get pregnant, then
begin a baby aspirin each day, along with heparin. What are the odds
of such a pregnancy having a positive outcome, i.e., no mc, no
premature birth? Thanks for your time and info. Lisa

THE TREATMENT THAT IS THE MOST SUCCESSFUL FOR CATEGORY 2 IMMUNE
PROBLEMS IS ASPRIN 81 MG STARTED ON CYCLE DAY ONE AND HEPARIN 5,000
UNITS BY INJECTION TWICE DAILY STARTED ON DAY 6 OF THE CYCLE OF
CONCEPTION.

I TEST ALL WOMEN FOR CATEGORY 5 IMMUNE PROBLEMS IN ADDITION SINCE 50%
WITH ANTICARDIOLIPIN ANTIBODIES ALSO HAVE ACTIVATED NK CELLS IN THE
BLOOD OR IN THE UTERUS. I DO NOT WANT YOU TO LOSE ANOTHER PREGNANCY
JUST TO FIND OUT THAT THE ASPIRIN AND THE HEPARIN WERE NOT ENOUGH FOR
YOU.

*******************************


Immune Treatment Information

Information gathered from Immunologysupport group discussions

http://groups.yahoo.com/group/immunologysupport/

Updated 4/23/04

Contents

I. What is IVIg?

II. What is LIT (Lymphocyte Immune Therapy)?

III. What is Enbrel?

IV. What is Humira?

V. What is Remicade?

VI. What is Heparin (and Lovenox)?

VII. What is Prednisone (and Dexamethasone)?

VIII. What is Fish Oil?

I. What is IVIg?

(Taken from Dr Beer's old website document http://repro-
med.net/guides/ivig.html that has since been deleted)

IVIg (Intravenous Immunoglobulin G) is a preparation of human-derived
antibodies, made from pooled donor blood that is washed and
processed. IVIg works by modulating abnormal responses of the immune
system. in particular by decreasing the toxic activities of Natural
Killer (NK) cells. Elevated NK cells can damage the early cells of
the baby that will create the placenta, and can cause implantation
failure, miscarriage or intrauterine fetal growth retardation.

According to Dr. Alan Beer, IVIg was introduced in 1981, shortly
after the widespread utilization of another gammaglobulin called Rh
immunoglobulin ( RHOGam) had been proven save for use in pregnancy.
Dr. Beer has utilized IVIg routinely since 1981, for immune disorders
of pregnancy. He has always utilized the preparation that is prepared
from virus negative donors and then prepared and processed exactly
like RhoGam which is certified for use during pregnancy by the FDA.
This preparation, utilized since 1968, has had no viral transmission
history.

IVIg as originally prepared did not inactivate all viruses,
especially hepatitis C. This was true in 1978 (clinical studies) when
the first case of hepatitis B was seen following IVIg administration.
In 1986. there were 12 cases of hepatitis C reported. The next year
there were reports of hepatitis C in 4 additional patients additional
patients ans in 1988, 16 patients with hepatitis C were identified.
This was not seen in the preparations that Dr. Beer has utilized,
because they went through an extra step of solvent/detergent viral
inactivation. This process is now used in three preparations:
Venoglobulin 5, Polygam (American Red Cross) and Gammagard s/d
(Baxter).

What is clear, and what the consumer needs to know, is that IVIg
preparations that do not include a viral inactivation step can
transmit hepatitis C, and possibly other viruses. In addition to
this, all plasma donors who donate plasma for IVIg preparation are
hepatitis C antibody and antigen negative. "Solvent/detergent
treatment has effectively eliminated the transmission of all viruses
including Hepatitis viruses of all types known and unknown." In
addition to this, the IVIg is DNA fingerprinted in search for viruses
(viruses, viral peptides. viral DNA), known or unknown. IVIg also
contains antibodies against hepatitis A. B. and C. This is similar to
the gamma globulin shots given to a person who has been exposed to
decrease the risk.

In summary, solvent detergent treatment is l00 % effective in
eliminating viruses including HIV-1,HTLV-1,HBV,HCV and HIV-2. And, in
final summary, according to Dr. Beer, if one questions the safety of
IVIg. then the safety of Rh Immunoglobulin (Rhogam) for the use in
prevention of the Rh problem should also he questioned.

When is IVIG used?

IVIG is used to treat category 5 immune problem of :

Elevated NK Assay cytotoxicity (50:1 over 15%)
Elevated NK Assay numbers (CD56 over 12%)
Elevated TH1 TH2 TNFa/IL-10 ratios (over 30, sometimes over 20).
Elevated 19+5+ cells (CD19+5+ over 10%)
Low blocking antibodies (LAD IgG T cells or IgG B cells less than
30%), however LIT is the preferred treatment for this.
High titer ANA
Intrauterine growth retardation of immune etiology
Oligohydroamnios (low amniotic fluid) of immune etiology
Subchorionic hematoma with autoimmune abnormality
Replace steroid treatment in women experiencing bad steroid side
effects
Active autoimmune disease (such as Thyroiditis, SLE, Rheumatoid
arthritis)
Infertility of immune etiology


Approximate Cost: $1,500 (1,000 pounds UK) for one 25g dose + $300
infusion fee.

2 to 10 infusions often needed per pregnancy.

For more information about IVIG and what it is used to treat, see:

http://www.sharedjourney.com/articles/ivig.html

http://www.usmamed.com/02fertility/treatment2.htm

http://www.allergyasthmaimm.com/library/ivigsafe.htm

http://infusionsystems.net/article-ExpandingUseofIVIG.html

http://haveababy.com/news/articles/ivig.asp

http://www.inciid.org/ivig.html

http://repro-med.net/info/cat1-5.php#cat5

http://repro-med.net/papers/antibod.php





II. What is LIT (Lymphocyte Immune Therapy)?

(Taken from Dr Beer's old LIT document http://repro-
med.net/tests/litdoc.html that has since been deleted)

Lymphocytes (white blood cells) of two classes are isolated from the
male spouse. The two classes isolated from whole blood are the T
cells (CD-3) and the B cells (CD-19). The Consumer's Guide to the
Reproductive Immunophenotype further defines how these white blood
cells differ from others. Forty million lymphocytes are washed three
times and then concentrated into an immunization that is less than
0.6 cc. This concentrate of lymphocytes is then injected in the skin
of the woman (intradermally) just like an allergy skin test. It
usually requires 4 injections, two on each forearm. The injected
areas then become red, slightly swollen and itch just like a positive
skin test. One month later the process and the injections are
repeated. The second injection sites usually become less red, swollen
and itch less than the first ones. One month later blood is drawn
from the woman (serum) and blood is drawn from the man (lymphocytes).
A test called the lymphocyte antibody detection assay (or Crossmatch)
is done to determine if the immunizations have worked and the woman
has made blocking antibody to her spouse's T and B cells.

This test has two parts, 1) a microcytotoxicity assay and 2) a flow
cytometry assay. The first test (microcytotoxicity) becomes positive
in only 30% of women. If it does not become positive, this is not a
bad result. Women who remain negative in this assay become mothers
with the same frequency as women who become positive in this
microcytotoxicity assay. The proper response is for the woman to
become positive in the flow cytometry test. If the second part of the
test does not become positive, then booster immunizations are given
or donor lymphocytes are mixed with the husband's lymphocytes and the
immunizations are done again with donor plus paternal. It should be
noted here that there are two types of donors, and both types are
screened. Type I uses blood that has been frozen for a minimum of six
months. Type II uses fresh blood from the donor. Testing for the
leukocyte antibody detection assay (Crossmatch) is done one month
later.

When is LIT used?

LIT is used to treat category 1 Immune problems of:

Low blocking antibodies (LAD test IgG T cells or IgG B cells are
below 30%)
Elevated NK cytotoxicity (NK Assay 50:1 is above 15%)
Often used in combination with IVIG in patients who show poor
suppression on the NK Assay with IVIG in the test tube (50:1 over 15%
at 6.25mg/ml or 12.5 mg/ml)


Approximate cost: $300 per LIT done in Nogales, Mexico. $600 per
double dose LIT.

420 UK pounds for LIT done with Dr. Armstrong in London +120 UK
pounds for the initial consult cost.

Often 2 LIT doses are needed one month apart before conception.



For more information about LIT, see:

http://www.cemef.com.mx/serv05.htm

http://www.rialab.com/pages/ria3.html#pli

http://repro-med.net/info/cat1-5.php#cat1





III. What is Enbrel?

(Taken from the Reproductive Immunology patient's guide to Enbrel
treatment at
http://health.groups.yahoo.com/group/immunologysupport/files/)

Enbrel (etanercept) was developed for patients who have severe
rheumatoid arthritis. It was approved by the Federal Drug
Administration for use in these patients in November of 1998.
Enbrel's function is to bind with tumor necrosis factor alpha (TNFa),
which is secreted by activated Natural Killer (NK) cells. Patients
with rheumatoid arthritis have been found to have elevated levels of
TNFa in their joints. Enbrel binds to the TNFa, rendering it
biologically inactive, resulting in significant reduction of
inflammatory activity.

Enbrel is used with reproductive immunology patients who have been
found to have evidence of active NK cells residing in their uterine
lining (NKUs). Women who have active NK cells in their uterine lining
that are secreting TNFa are prone to a disordered lining development,
failed implantation, poor embryo development and/or pregnancy
failure . At the time of ovulation these women often have thin
endometriums, often only 7-8mm thick. A full week before menstruation
there is often evidence of stromal hemorrhages in the uterine lining
as well.

TNFa produced by the Natural Killer cells in the uterus damages the
embryo and it often fails to grow, divide, and implant. TNFa also
damages the blood vessels in zone three of the endometrium. This
often creates stromal hemorrhages and robs blood and nutrients from
the embryo. This also results in thinner than normal endometrium.


A cycle day-26 endometrial biopsy, or an analysis of the products of
conception following miscarriage, can confirm the presence of NK
cells in the uterus (NKUs). If confirmed, Enbrel is prescribed to
neutralize TNFa. Enbrel is used for a minimum of 30 days before
trying a cycle of conception. See: http://repro-
med.net/tests/endomet.php

When is Enbrel used?

Enbrel is used to treat Category 5 Immune issues of:

1. Elevated uterine resident NK cells (NKUS) in the endometrial
tissue, see:

http://repro-med.net/tests/endomet.php

2. Elevated TH1 TH2 TNFa/IL-10 ratios (over 30, sometimes over 20).

3. Poor suppression with IVIG in the test tube ( NK Assay 50:1 over
15% at 6.25mg/ml and/or 12.5 mg/ml)

4. Patients who have failed with IVIG and LIT

5. Repeated implantation failures or IVF failures

Approximate cost: 8 vials (one month's supply) $1,165

Enbrel should be started 30 days preconception and discontinued after
a fetal heartbeat is established.

For more information about Enbrel see:

"RI Patient's Guide to Enbrel use" in our group files under "Enbrel
Information":

http://health.groups.yahoo.com/group/immunologysupport/files/

Also see:

http://www.embrel.com/home.jsp?fvar=1



VI. What is Humira?



Humira (adalimumab) is a recombinant human lgGl monoclonal antibody
given as a subcutaneous injection given once or twice every two weeks
Humira works in a similar manner to Enbrel and Remicade, by blocking
TNF alpha (tumor necrosis factor alpha) that causes inflammation in
the body's tissues. By binding specifically to TNF-alpha, Humira
reduces the symptoms of Rheumatoid Arthritis and possibly reduces the
incidence of miscarriage and IVF failure.

When is Humira used?

Humira is used to treat Category 5 Immune issues of:

1. Elevated uterine resident NK cells (NKUS) in the endometrial
tissue,see:

http://repro-med.net/tests/endomet.php

2. Elevated TH1 TH2 TNFa/IL-10 ratios (over 30, sometimes over 20).

3. Poor suppression with IVIG in the test tube ( NK Assay 50:1 over
15% at 6.25mg/ml and/or 12.5 mg/ml)

4. Patients who have failed with IVIG and LIT

5. Repeated implantation failures or IVF failures

6. Patients who have failed cycles on or developed a bad reaction to
Enbrel or Remicade.

Approximate cost: $1,200 (800 UK pounds) for two 40mg Humira
subcutaneous injections (about one month's supply).

Humira usually taken one month preconception and discontinued after a
fetal heartbeat is established.



For more information about Humira, see "Humira information " in our
group files:

http://health.groups.yahoo.com/group/immunologysupport/files/

Also see: http://www.humira.com/hu/huStore/cgi-bin/indexnewc.htm



V. What is Remicade?


Remicade (Infliximab), the only drug approved for the treatment of
both rheumatoid arthritis and Crohn's disease and is available as an
intravenous product. Remicade in a manner similar to Humira and
Enbrel, and reduces inflammation in the body by controlling the
levels of TNF alpha which produces inflammation and contributes to
miscarriage and IVF failure.



When Remicade used?*

Remicade is used to treat Category 5 Immune issues of:

1. Elevated uterine resident NK cells (NKUS) in the endometrial, see:

2. Elevated TH1 TH2 TNFa/IL-10 ratios (over 30, sometimes over 20).

3. Poor suppression with IVIG in the test tube (NK Assay 50:1 over
15% at 6.25mg/ml and/or 12.5 mg/ml)

4. Patients who have failed with IVIG and LIT

5. Repeat implantation failures or IVF failures

6. Patients who have failed on Enbrel *

*Note: Lately Humira is usually preferred over Remicade because
Humira is easier to administer (injection rather than an infusion)
and is less likely to cause an allergic reaction. However there may
be situations where Remicade is still preferred.

Approximate cost: $1,950 (1,500 UK pounds) for one 300mg Remicade
infusion + $400 infusion fee.

Three 300mg infusions done in 6 weeks prior to conception (300mg
infusion done, then a second 300mg infusion done 2 weeks later, then
a third 300mg infusion done 4 weeks after that).

For more information about Remicade, see:

http://www.remicade-ra.com/a_remicade_for_ra/a1.html?ref=2309



VI. What is Heparin (and Lovenox or Clexane)?
Taken from:

http://www.rialab.com/pages/ria3.html#heparin



Heparin, an anticoagulant, is a purified preparation derived from
animal tissue. It is delivered as a subcutaneous (sq) injection and a
typical dose would be 5000 IU twice a day. Low molecular weight
heparins like Lovenox and Fragmin (and Clexane) are more purified
forms of heparin. The typical dose for Lovenox for Reproductive
Immunology patients is 30 mg sq once or twice a day. Low molecular
weight heparin preparations are the medication of choice for patients
who suffer Inherited Thrombophilias. Both drugs are significantly
more expensive than standard heparin.

Allergic reactions may include chills, fever, dermatitis, asthma and
anaphylactic shock. Before a therapeutic dose is administered, a
trial of 1000 IU would be prudent. Fortunately, allergy to heparin is
rare.

Because of heparin's blood "thinning" property the user is more
susceptible to bleeding (skin, nose, gastrointestinal tract, bladder,
etc.). Almost all patients experience some bruising at the site where
heparin is injected.

Long term heparin therapy has been associated with osteoporosis and
spontaneous fractures in patients who have received in excess of
15,000 units per day for more than six months. One study of 117
patients on long term heparin (up to 15 years) report no spontaneous
fracture when subjects received less that 10,000 units per day.
Although our protocol utilizes low dose heparinization,
supplementation (dietary) with calcium is recommended. Exercise and
sun tanning may also prevent osteoporosis.

Please note that the study group consisted of women who had severe
maternal disease necessitating high dose anticoagulant therapy.
Although heparin is the preferred anticoagulant during pregnancy it
is not risk free.

Heparin is not excreted in breast milk.

Relative contraindications to the use of heparin are active bleeding,
hemophilia, thrombocytopenia or other blood dyscrasia, endocarditis
or tuberculosis. Caution should be exercised when there is underlying
hypertension and liver kidney disease.

Routine platelet, hematocrit, APTT and antiphospholipid antibody
panel monitoring during heparinization is recommended.

When is Lovenox (or Clexane) used?

It is used to treat Category 2 Immune Problems caused by:

Acquired thrombophilia (clotting) problems caused by elevated
antiphospholipid antibodies (APA's)
Inherited Thrombophilia problems caused by Factor V Leiden mutation,
Prothrombin mutation, MTHFR mutations (C677T and/or A1298C
heterozygous or homozygous)


Approximate cost: $1,200 (900 UK pounds) a month for two 30mg
subcutaneous injections/day.

Injections are started CD 6 the cycle of conception and continued
throughout pregnancy and often 6 weeks postpartum.



For more information about heparin and the thrombophilias see:

http://www.ivf.com/immune.html

http://www.rialab.com/pages/ria3.html#heparin

http://www.lovenox.com/homeAction.do

http://www.aventispharmaindia.com/presskitsClexane.htm

http://repro-med.net/info/cat1-5.php#cat2

http://repro-med.net/papers/apa.php

http://repro-med.net/papers/antibod.php

http://repro-med.net/papers/thromb.php

http://repro-med.net/info/thromb.php





VII. What is Prednisone (and Dexamethasone)?
Taken from:

http://www.medicinenet.com/prednisone/article.htm

Prednisone is an oral, synthetic (man-made) corticosteroid used for
suppressing the immune system and inflammation. It has effects
similar to other corticosteroids such as triamcinolone (Kenacort),
methylprednisolone (Medrol), prednisolone (Prelone) and dexamethasone
(Decadron). These synthetic corticosteroids mimic the action of
cortisol (hydrocortisone), the naturally-occurring corticosteroid
produced in the body by the adrenal glands. Corticosteroids have many
effects on the body, but they most often are used for their potent
anti-inflammatory effects, particularly in those conditions in which
the immune system plays an important role. Such conditions include
arthritis, colitis, asthma, bronchitis, certain skin rashes, and
allergic or inflammatory conditions of the nose and eyes. Prednisone
is inactive in the body and, in order to be effective, first must be
converted to prednisolone by enzymes in the liver. Therefore,
prednisone may not work as effectively in people with liver disease
whose ability to convert prednisone to prednisolone is impaired

When is prednisone and dexamethasone used?

Prednisone and Dexamethasone are both used to treat Category 3 Immune
Problems of

1. Antinuclear antibodies (ANA) measuring 1:40 or above

homogeneous (antibody is to the ssDNA or dsDNA), nucleolar (antibody
is directed to the polynucleotides) or speckled (antibody is directed
against the histones)

2. Dexamethasone (not prednisone) also used to help prevent CD56+
cell division.



Approximate cost (prednisone): One hundred 5mg tablets (about one
month's supply) $15

Two 5 mg prednisone tablets taken once a day preconception. Dose
increased to 10 mg twice daily after a positive pregnancy test and
discontinued at about 10 weeks pregnant.

Note: 5mg prednisone approximately equivalent to 1 mg dexamethasone

For more information about corticosteroids and category 3 immune
problems, see:

http://repro-med.net/info/cat3.php

http://www.rialab.com/pages/ria3.html#pred





VIII. What is Fish Oil?


Fish oil is an Omega-3 fatty acid containing docosahexaenoic acid
(DHA), eicosapentaenoic acid (EPA). High ratio of omega-3 to omega-6
fatty acids has been shown to reduce the severity of many
inflammatory processes by helping to control the excess production of
TNF alpha.

.

Taken from:

http://vvv.com/healthnews/fishoils.html

There are good fats and there are bad fats. Artificially produced
trans-fatty acids are bad in any amount and saturated fats from
animal products should be kept to a minimum. The best fats or oils
rather, since they are liquid at room temperature, are those that
contain the essential fatty acids so named because without them we
die. Essential fatty acids are polyunsaturated and grouped into two
families, the omega-6 EFAs and the omega-3 EFAs.

Seemingly minor differences in their molecular structure make the two
EFA families act very differently in the body. While the metabolic
products of omega-6 acids promote inflammation, blood clotting, and
tumor growth, the omega-3 acids act entirely opposite. Although we do
need both omega-3s and omega-6s it is becoming increasingly clear
that an excess of omega-6 fatty acids can have dire consequences.
Many scientists believe that a major reason for the high incidence of
heart disease, hypertension, diabetes, obesity, premature aging, and
some forms of cancer is the profound imbalance between our intake of
omega-6 and omega-3 fatty acids. Our ancestors evolved on a diet with
a ratio of omega-6 to omega-3 of about 1:1. A massive change in
dietary habits over the last few centuries has changed this ratio to
something closer to 20:1.

Taken from http://www.oilofpisces.com/generalhealtheffects.html

Researchers at Oxford University now report that fish oil
significantly decreases NK cell activity in healthy human subjects.
Their clinical trial involved 48 men and women aged 55 to 75 years.
The participants were randomized to receive one of six supplements
for 12 weeks. The supplements were all provided in the form of
capsules, three of which were to be taken with each meal. The nine
capsules (daily intake) contained either a total of 2 g alpha-
linolenic acid, 770 mg gamma-linolenic acid (from evening primrose
oil), 680 mg arachidonic acid, 720 mg docosahexaenoic acid (DHA), 720
mg eicosapentaenoic acid (EPA)+ 280 mg DHA (fish oil) or a placebo
(an 80:20 mix of palm and sunflower oils). All the participants had
blood samples taken four weeks before start of supplementation,
immediately before start of supplementation, and then every four
weeks during the trial as well as after a four-week washout period.
The researchers found no changes in killer cell activity except in
the group taking fish oil. Here they observed an average decline of
20 per cent after 8 weeks and 48 per cent after 12 weeks. The decline
was completely reversed after the washout period. The fact that no
decline was observed with pure DHA strongly suggests that EPA was
responsible



When is fish oil used? Fish oil is used as a supplementary treatment
(alongside IVIG, LIT and/or Humira, Enbrel ore Remicade) for Category
5 Immune Problems of:

1. Elevated NK Assay cytotoxicity (50:1 over 15%)

2. Elevated NK Assay numbers (CD56 over 12%)

3. Elevated TH1 TH2 TNFa/IL-10 ratios (over 30, sometimes over 20).

Approximate cost:

Pharmaceutical-grade fish oil:
120 capsules $50

Typical Store brand
300 capsules $7-15

About four 1gram fish oil capsules taken daily (but dose can vary
widely)

For more information about fish oil, see

"RI patients guide to taking fish oil" in our group files:

http://health.groups.yahoo.com/group/immunologysupport/files/

Also see:

http://www.oilofpisces.com/fishdata.html

http://abcnews.go.com/sections/community/DailyNews/chat_omegazone05080
2.html

http://www.inciid.org/transcripts/barry-sears060602.html



--- In immunologysupport@yahoogroups.com, "tiggercen"
<tiggercen@y...> wrote:
> Hi...I just had my third miscarriage a week ago and I've been
referred
> to Dr. Beer.  I was on Lovenox, baby aspirin and prednisone as well
as
> prometrium.  I am devestated and angry and really need some
support.
> I haven't heard back from the Dr. yet so I don't know for sure what
I
> have but I have been told by my perinatologist that it's probably in
> the ANA and antiphospholipid antibody realm.  I have one son (thank
> God) but my husband and I want four kids.  I'm a mess. Any
> encouragement would help.  Thanks!
> Christine

Loran: Sorry for my ignorance.  What's an opk and an Hpt? Thanks! Christiane
--
_______________________________________________
Find what you are looking for with the Lycos Yellow Pages
http://r.lycos.com/r/yp_emailfooter/http://yellowpages.lycos.com/default.asp?SRC\
=lycos10

I have had 4 and the reactions get easier----this is normal.  DB's
LIT article also explains that the reaction from the second LIT will
be less than the first one.

Debbie in Texas


--- In immunologysupport@yahoogroups.com, "missy81563"
<NOLPOST@a...> wrote:
> If anyone has had more than one LIT, could you tell me if the
> reaction changed?  My first had a severe reaction, my second
seemed
> to have almost none.  Does this mean anything?
>
> Thanks
>
> Missy

If anyone has had more than one LIT, could you tell me if the
reaction changed?  My first had a severe reaction, my second seemed
to have almost none.  Does this mean anything?

Thanks

Missy

LisaS,

Yes, I agree this Thrombophilia article posted by Dr Carter is a good
one for the files. I had already copied it and saved it ready to add
at my next update. I think we are reading each other's minds!

Thanks again.

Jane

--- In immunologysupport@yahoogroups.com, Lisa Stroyan
<lstroyan@p...> wrote:
> Beth, thanks for sharing this, I found it very interesting.  Does
anyone
> know if easy bruising as DC described is associated with recurrent
m/c?
>
>
>http://www.patientcarenp.com/be_core/content/journals/n/data/2004/051
5/n0504obgyn.html
> >
>
> Jane, this would be a good one to add to the files.
>
> >can be. Some hematologists even use IVIG for APS! I just think that
> >the immunology of IVIG as espoused by certain reproductive
> >immunologists is bogus. It just works through a completely
different
> >mechanism from NK cells, and I intend to prove it in my research.
You
> >see Beth, the current generation of practicing reproductive
> >immunologists, in their virtual obsession with the NK cell, have
> >overlooked a rather important cell type called the macrophage.
>
> This sounds like a bad attitude for any collaboration with Dr.
Beer.  Very sad!
>
>
> Lisa

Thanks for these additional articles, Avnee.

Yes, indeed, for many non-Reproductive Immunology patients, RA will
shift the TH1Th2 balance for to TH2 so the RA improves and the
pregnancy succeeds (this is what it the TH1 Th2 balance "supposed "
to do). However, after the pregnancy is over, Th1 predominace returns
and the RA will return and even get worse than before.

In my case, I do not have RA myself, but I certainly get some sort of
Fibromyalgia conditions that about kill every joint in my body post
partum. I can certainly vouch for the fact immune conditions can
worsen in post partum.

I actually do not believe the articles you sent contradict each
other. I actually think they agree.

Remember most Reproductive Immunology patients are not typical RA
patients. That's why so many of us need LIT, our bodies need "help"
recognizing what a pregnancy is. They go about the TH1 TH2 shift
process far more naturally than we do.

Thanks for sharing this. Another article that's relevant and
interesting to us.

Jane

--- In immunologysupport@yahoogroups.com, A T <a_l12345678@y...>
wrote:
>
> Having sent the last mail on RA and Pregnancy here is a driffernt
perspective and maybe one that makes more sence:
>
> "Only in certain rheumatic conditions, the connective tissue
disorders (CTDs), where there is an immune attack against the
patient's own tissues, is there reduced fertility. These diseases are
rare and include Systemic lupus erythematosus (SLE), and Scleroderma.
They vary in severity from mild to life threatening, and require
specialist care. They are considered high-risk pregnancies and
require close care and follow up. In the case of SLE, a higher
incidence of miscarriage, especially in the second third of
pregnancy, may be seen, largely association with a blood antibody
called the Antiphospholipid antibody. In fact about 20% of
pregnancies in SLE, terminate spontaneously. In addition, the
hormonal factors of pregnancy also aggravate the course of SLE, with
a tendency for flares of the disease and increased complications in
the pregnancy."
>
> There are however certain Rheumatic diseases that are affected
positively by pregnancy. Interestingly, in the most severe and
commonest type of arthritis affecting women of childbearing age,
Rheumatoid arthritis (RA), there is a tendency for pregnancy to
induce a remission of the disease for the duration of the pregnancy.
This will happen in about 80% of patients with RA who become
pregnant, and will likely start to improve within 12 weeks and then
progressively improve through the duration of the pregnancy. The only
problem is that after the pregnancy, the arthritis comes back, and
frequently with a vengeance. 33% will redevelop the arthritis by 1
month, and 98% by 4 months. There are in fact a significant
percentage of people who develop RA for the first time in the months
after a pregnancy. The reason for these phenomenon are not clear. The
answer is not simply estrogen or hormonal changes, but more likely
changes in the immune system induced by the pregnant state.
>
> http://www.arthritis.co.za/pregnancypage.html
>
> Alison Carlson <alison_carlson@s...> wrote:
> I have paid a fair bit of attention to this. I just wrote an
article for the
> next issue of Resolve's Family Building magazine on reproductive
toxicants -
> with a scientist and a doctor who heads Stanford's REI clinic. It's
geared
> toward helping IF patients think about the new science emerging.
But this
> new knowledge doesn't have a lot of certain or clear answers...It
is good to
> do what one can to reduce exposures, as a  precautionary approach -
but
> there's a long way to go before we know what levels of exposure do
what in
> humans...
>
> Alison
> ----- Original Message -----
> From: "Dawn" <mcmichael@i...>
> To: <immunologysupport@yahoogroups.com>
> Sent: Tuesday, June 29, 2004 7:27 PM
> Subject: [immunologysupport] Re: personal care products report +
repro
> toxicants
>
>
> > Did anyone look at this?????  Reproductive toxics are everywhere
in
> > your home.  They are so easy to replace, I don't understand why
> > people wouldn't want to.
> >
> >
> > --- In immunologysupport@yahoogroups.com, "Alison Carlson"
> > <alison_carlson@s...> wrote:
> > > Hello All,
> > >
> > > I wanted to point your attention to a report released yesterday
by
> > the Environmental Working Group titled "Skin Deep,"  which focuses
> > on toxic chemicals (including reproductive toxicants) found in
> > personal care products. You can find the report's executive
summary
> > at
> > http://www.ewg.org/reports/skindeep/report/executive_summary.php .
> > You may want to click on Pregnancy Concerns on the left side menu.
> > >
> > > Alison
> >
> >
> >
> >
> > **Information in this group not to substitute for medical advice.
Please
> consult with your physician before undergoing any form of medical
> treatment**
> >
> > Yahoo! Groups Links
> >
> >
> >
> >
> >
> >
>
>
>
>
> **Information in this group not to substitute for medical advice.
Please consult with your physician before undergoing any form of
medical treatment**
>
>
>
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