Thanks Lisa S. I guess I am not the only one in this situation. Not that I am
wishing for more to be wrong! But, it's hard to treat something when you don't
know what it is! I know we each have a difficult battle! I wish you much success
w/ yours! Janessa

	 -----Original Message-----
	 From: Lisa S [mailto:lstroyan@...]
	 Sent: Thu 4/1/2004 10:31 AM
	 To: immunologysupport@yahoogroups.com
	 Cc:
	 Subject: Re: [immunologysupport] anyone else w/ only NK/ TNFa/ MTHFR issues?


	 At 06:25 AM 4/1/2004, you wrote:
	 >I am just wondering if I am the only one around here who ONLY has
	 >high NK's (50:1 24) high TNFa (57.7) and MTHFR (homo). Still waiting
	 >on the Serotonin results, but I have been tested for absoultly
	 >everything else! Not positive for ANA, APA, DNA histones,Lupus,
	 >metobalic panal came back w/ everything in range...
	 >I have had 3 early m/c's and have found nothing other than NK related
	 >issues (besides the MTHFR) Does this prove that NKs and TNFa can doom
	 >a pgny or what!!!!??? Am I the only one like this??? Janessa

	 Hi Janessa,

	 I'm not exactly like you but fairly similar.  I had normal NKs, hetero
	 MTHFR, relatively low TNFa (23.8 cytokines), and borderline
	 antiphosphoethanolamine, one of the APAs. Everything else normal. So in
	 some sense I have even *less* issues than you...according to all docs but
	 DB everything is COMPLETELY NORMAL.  (My regular RE even said, see? your
	 numbers are normal - the implication being that I was on a wild goose chase
	 to see DB - I haven't shown him the pathology yet but I bet he'd poo-poo
	 that too).  But my pregnancy was *clearly* damaged by *both* the MTHFR/APA
	 (as shown by blood clots) and by the TNFa (shown by decidual necrosis -
	 severe, and fibrin deposition - ie scar tissue).

	 Since I was on some Lovenox, I *know* that there is something else going on
	 that is immunological....perhaps the immune issues make the MTHFR/APA worse
	 or something, or maybe it just wasn't sufficient.


	 Lisa S
	 mom to Alex 2/97
	 4 first-trimester miscarriages plus 4 chem pgs (early m/c)




	 **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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At 06:25 AM 4/1/2004, you wrote:
>I am just wondering if I am the only one around here who ONLY has
>high NK's (50:1 24) high TNFa (57.7) and MTHFR (homo). Still waiting
>on the Serotonin results, but I have been tested for absoultly
>everything else! Not positive for ANA, APA, DNA histones,Lupus,
>metobalic panal came back w/ everything in range...
>I have had 3 early m/c's and have found nothing other than NK related
>issues (besides the MTHFR) Does this prove that NKs and TNFa can doom
>a pgny or what!!!!??? Am I the only one like this??? Janessa

Hi Janessa,

I'm not exactly like you but fairly similar.  I had normal NKs, hetero
MTHFR, relatively low TNFa (23.8 cytokines), and borderline
antiphosphoethanolamine, one of the APAs. Everything else normal. So in
some sense I have even *less* issues than you...according to all docs but
DB everything is COMPLETELY NORMAL.  (My regular RE even said, see? your
numbers are normal - the implication being that I was on a wild goose chase
to see DB - I haven't shown him the pathology yet but I bet he'd poo-poo
that too).  But my pregnancy was *clearly* damaged by *both* the MTHFR/APA
(as shown by blood clots) and by the TNFa (shown by decidual necrosis -
severe, and fibrin deposition - ie scar tissue).

Since I was on some Lovenox, I *know* that there is something else going on
that is immunological....perhaps the immune issues make the MTHFR/APA worse
or something, or maybe it just wasn't sufficient.


Lisa S
mom to Alex 2/97
4 first-trimester miscarriages plus 4 chem pgs (early m/c)

At 04:57 AM 4/1/2004, you wrote:
>Thanks Lisa, I did not know they messed up everywhere! I though it was
>just New Orleans! Geez! Janessa

Actually my lab wasn't Quest and honestly the mixup was as much my fault as
theirs.  But it is still frustrating!


Lisa

Thank God for small favors!!! One less thing to worry about! Janessa

	 -----Original Message-----
	 From: jennyeitel@... [mailto:jennyeitel@...]
	 Sent: Thu 4/1/2004 9:27 AM
	 To: immunologysupport@yahoogroups.com
	 Cc:
	 Subject: Re: [immunologysupport] fasting insulin is 4, is that ok?


	 That is awesome!!!!!!!!!!!!!!!!!!!!  has to be under 17!  Way to go girl JENNY

	 **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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We have decided to take a 4 month break from Humira since I have
been on it since August (Dr. Beer says that I will stay donregulated
during this time).  I have enough Humira for two months (4
injections) that I would like to get rid of to help pay for some of
my other medical costs.  I also have some Lovenox that one of my
friends wants to get rid of, she has decided to adopt.  If anyone is
interested in either the Humira or the Lovenox, you can email me at
crattyle@....  Hoping and praying that we all have success real
soon...LuAnne:)

Sue, you are very lucky to get the discount on the IVF! My last one cost me
10,000 and I have no IVF coverage either. Yes, NK's change and you do need to
retest every 3 wks.  Janessa

	 -----Original Message-----
	 From: Sue [mailto:sminogue@...]
	 Sent: Thu 4/1/2004 9:29 AM
	 To: immunologysupport@yahoogroups.com
	 Cc:
	 Subject: [immunologysupport] Thanks .....Re: BFN Fet 5th try 1st w/ IVIg


	 I see Dr. Coulam. I am only 1.5% above normal for nk's. What would
	 Humira do , I will look it up.  I am thinking hysterescopy. I always
	 have a nice thick lining. I have endo which should be contained to
	 my uterus since my tubes were cauterized. Do you think the endo is
	 STILL a factor even though it is in my uterus? It is Implantation
	 Failure. I did labs at Millenova. I just sent in a sample last night
	 to check my NK's Since they can change, right?

	 All IVF is out of pocket and so would be non-covered drugs. So I
	 have to look at things in a financial way. Like the hospital would
	 have charged 7K for the transfer(via Health ins), AH, and cryo but
	 they only charged me 2,500. That is a big discount. I don't know
	 many hospitals that do that.
	 I feel guilty spending so much time on IF. I am just confused!

	 Sue


	 --- In immunologysupport@yahoogroups.com, "Sue" <sminogue@o...>
	 wrote:
	 > Just wanted let you know it did not work again. Has to be my
	 uterus
	 > and has to do with the spotting I always have 5-7 days before AF.
	 I
	 > am tired of being my own DR. and self diagnosing. I wish there was
	 a
	 > DR. that could open me up fix me and then I could get PG all the
	 > time. It just S-cks!
	 >
	 > Thanks for letting me vent,
	 > Sue



	 **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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Hi Jenny! I sure hope you are right! I just think it's strange that I don't have
any other issues and still had 3 m/c! It proves to me that NK's and TNFa can do
enough damage to cause repeat m/c! I wish that it would prove it to these RE's!
I cant wait to start the Humira! I'm going to my family dr. and get a referal to
a rhumatist ( I have joint pain) and hopefully get the Humira covered, worth a
shot... but I am prepared to pay for it if I must! Take care! Janessa

	 -----Original Message-----
	 From: jennyeitel@... [mailto:jennyeitel@...]
	 Sent: Thu 4/1/2004 9:31 AM
	 To: immunologysupport@yahoogroups.com
	 Cc:
	 Subject: Re: [immunologysupport] anyone else w/ only NK/ TNFa/ MTHFR issues?


	 I have all that you have but not high NKS.  I think the Humira is the drug of
choice for you girl!  I thin it is working on me already!  I feel it and it will
help you!  JENNY

	 **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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I see Dr. Coulam. I am only 1.5% above normal for nk's. What would
Humira do , I will look it up.  I am thinking hysterescopy. I always
have a nice thick lining. I have endo which should be contained to
my uterus since my tubes were cauterized. Do you think the endo is
STILL a factor even though it is in my uterus? It is Implantation
Failure. I did labs at Millenova. I just sent in a sample last night
to check my NK's Since they can change, right?

All IVF is out of pocket and so would be non-covered drugs. So I
have to look at things in a financial way. Like the hospital would
have charged 7K for the transfer(via Health ins), AH, and cryo but
they only charged me 2,500. That is a big discount. I don't know
many hospitals that do that.
I feel guilty spending so much time on IF. I am just confused!

Sue


--- In immunologysupport@yahoogroups.com, "Sue" <sminogue@o...>
wrote:
> Just wanted let you know it did not work again. Has to be my
uterus
> and has to do with the spotting I always have 5-7 days before AF.
I
> am tired of being my own DR. and self diagnosing. I wish there was
a
> DR. that could open me up fix me and then I could get PG all the
> time. It just S-cks!
>
> Thanks for letting me vent,
> Sue

--- In immunologysupport@yahoogroups.com, Deborah525@a... wrote:
> I asked DB about Humira and he said it's recombinant DNA......I was
worried
> it was a human product like IVIg..but it's not.
>
> Deborah

Thanks, Deborah.

Marci

I forgot to add immune treatments...

LIT 11/03, 12/03 and going back 4/10. Folgard x2, Fish oil,
acupuncture. IVIg (still m/c)

Got some results back today, and just wondering if my fasting insulin
of 4 is good or not. On the Quest report it looks like it is in
range, but you know how that goes. What one place says is in range,
DB may say is out of range! Thanks! Janessa

I am just wondering if I am the only one around here who ONLY has
high NK's (50:1 24) high TNFa (57.7) and MTHFR (homo). Still waiting
on the Serotonin results, but I have been tested for absoultly
everything else! Not positive for ANA, APA, DNA histones,Lupus,
metobalic panal came back w/ everything in range...
I have had 3 early m/c's and have found nothing other than NK related
issues (besides the MTHFR) Does this prove that NKs and TNFa can doom
a pgny or what!!!!??? Am I the only one like this??? Janessa

Danielle- There might also be the difference between
cash price and insurance price.  I paid Colombia
around $1700 for 35g, but they billed my ins $3700!
(still waiting to see if it gets paid).  If you are
not using insurance be sure to ask the infusion
company for the cash price.  Also, Colombia can FedEx
directly to them if that helps.  However, there is
also the chance that they use this as a money-maker.
My REs office does this!  I fell for it the first
time, until I found thie  board and figured out how
much they were overcharging me!  Good luck!  Ellen
--- Danielle Rosso <counselor94@...> wrote:
> I have a question about IVIg infusion.  I spoke with
> a local home health care co. today and asked about
> the cost of an infusion.  I was told it wold be
> $4000.  I told her that sounded high to me.  She
> said that 10 g of IVIG was $1500.  I need 25 so the
> bulk fo the cost was the IVIg.  I asked about
> suppling my own IVIg.  She sadi she would need to
> check on that.  Any advice?  I thought I had read
> that I could get IVIg through Columbia.  Is that
> true?  How do I do that and how much is it?
> Thanks,
> Danielle
> PS  Will infusion centers let you bring the IVIg
> with you?
>
>
> ---------------------------------
> Do you Yahoo!?
> Yahoo! Small Business $15K Web Design Giveaway -
> Enter today


__________________________________
Do you Yahoo!?
Yahoo! Small Business $15K Web Design Giveaway
http://promotions.yahoo.com/design_giveaway/

Marci, I guess you have to decide here.... it is a lot of trust to place in one
dr. especialy when you have other dr.s telling you that the Humira is bad. But,
I don't really see any other choices except to take the Humira and trust DB, or
don't take it and maybe try Nettleleaf or something like that. I personally am
going in w/ both feet w/ DB, what ever he says! I don't want to risk another m/c
and my RE can't offer any treatments except do another IVF w/ PGD.  Only you can
decide what you are willing to do and risk to have a successful pgcy. I am
concerned about the Humira and implantation too, but figure DB has a bigger
picture than we do and has brought many babies into this world who would not be
here except for him. And he actually has answers and treatments.... I plan to
follow him to the "T", but that's just me.  I'm sure you will make the right
decision for you. Take care! Janessa

	 -----Original Message-----
	 From: happyiguana2003 [mailto:happyiguana2003@...]
	 Sent: Wed 3/31/2004 1:15 PM
	 To: immunologysupport@yahoogroups.com
	 Cc:
	 Subject: [immunologysupport] Response from DB on tnfa and humira ??s


	 So DB wrote me back on my tnfa questions after initially telling me
	 I needed to do a phone consult (and I have one set up for Monday,
	 which we may still keep.)

	 I hope he doesn't mind me sharing these emails with you guys, but I
	 thought it might help others... In short, he said he would not
	 support coming off the humira prior to IVF or circa implantation
	 stage.  Can anyone tell me where to get the copy of the article he
	 mentions?

	 Thank you!
	 Marci

	 Long version:

	 Dear Dr. Beer,

	 I hope this note finds you well. We are starting to form a consensus
	 about our plan with our RE here in Philadelphia. However, he has
	 concerns about the use of anti-tnfa medication and would like to
	 understand the theory better.

	 DB:  He needs to call me.  I am the only doctor in the US patented
	 to use these medications for reproductive problems.

	 I read through your posts on the INCIID board about Enbrel and was
	 able to find a lot of info, but Amir and I also have a couple Humira
	 questions. I will keep this as short as possible.

	 DB:  Arrange a consultation with me if my short responses here are
	 not sufficient for you.

	 1. Where in the results from my pathology analysis and blood tests
	 is there evidence that I have NKUs? We don't see any NKU activity,
	 since pathology analysis says that there were no NK cells at
	 implantation site, that there were deficient number of intermediate
	 trophoblast but adequate invasion. Where are the NKUs, then?

	 DB:  NKU cause decidual necrosis and dense fibrin deposition even if
	 we do not see them in the tissue they are in the blood causing
	 damage.

	 It revealed:
	 · decidual necrosis near implantation site - focal moderate
	 · Decidual infiltrate, present, mild
	 · decidual inflammation - mild
	 · focal villous infarction, present   DB:  This is a category 2
	 problem of increased clotting.
	 · perivillous fibrin deposition - severe, multifocal dense

	 DB:  This is due to NK cell release of TNF alpha.

	 2. Which part of this pathology report tells you what caused our
	 baby girl to die at 20 weeks? How could repeat scarring at one site
	 cause this, since the scarring was not throughout the placenta?

	 DB:  The problem was mainly in the blood or we would have seen them
	 in the uterus.  There is was also a clotting problem that caused
	 villous infarction.

	 Could this have just been a freak infection? (I don't think so, but
	 I don't have your knowledge and eloquence)

	 DB: Not in my experience.  In my experience this was an immune
	 problem that caused the death of your child.

	 3.  Our RE specializes in implantation research at Penn, and he
	 believes TNFa is crucial for implantation to occur, and in addition
	 that it may help the fetus in ways yet unknown.  Can you help us
	 understand better your theory of the role of anti-tnfa agents in
	 helping with the NKU problem and sustaining the entire pregnancy?

	 DB:  He should read our paper recently published about this.

	 4. Specifically, we asked our RE whether we could ask you anything
	 that might help us better understand the humira treatment. He said
	 to ask how the TNFa, in the absence of abnormal leukocytes that are
	 histopathologic, affects the pro-inflammatory anti-inflammatory
	 process?

	 DB:  The NK cells in the blood are cd 56+ and have an offswitch that
	 is controlled and activated naturally during pregnancy.  These NK
	 cells can give rise to those that are CD3 CD4 positive and have no
	 offswitch and these are exactly the same as those that cause Lupus,
	 rheumatoid arthritis or Chrons disease.   These can be active in the
	 blood and also migrate to the implantation site.

	 5. I have 3 of the 11 symptoms of Lupus, and my rheumatologists are
	 concerned about Humira possibly pushing me over the edge to full-
	 blown Lupus.

	 DB:  I assure you that this is not my experience.  If you are
	 unwilling to use it because of concerns than I recommend that you
	 seek other options other than carrying your own baby.

	 They are particularly concerned as I seem to have very low NK
	 activity already and am prone to catching colds, illnesses. Will
	 different ANA results tell you anything clinically? They are also
	 concerned b/c they don't know how to monitor me on this drug b/c I
	 don't have the typical blood markers they use. What are your
	 thoughts, what can I tell them?

	 DB:  Have them talk to me about my experience. This needs to be
	 doctor to doctor.

	 6. How crucial is it that I be on humira during pregnancy (until 6
	 weeks) and why? Can I just take it pre-IVF? Is it to prevent the 4.1
	 from potentially activating the NKUs?

	 DB:  I know the protocol that works and I will not alter this for
	 you.




	 **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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Thanks Lisa, I did not know they messed up everywhere! I though it was just New
Orleans! Geez! Janessa

	 -----Original Message-----
	 From: Lisa Stroyan [mailto:lstroyan@...]
	 Sent: Wed 3/31/2004 6:41 PM
	 To: immunologysupport@yahoogroups.com
	 Cc:
	 Subject: Re: [immunologysupport] Quest lab vent!



	 >
	 >oh yeah, thanks for letting me get that all out!

	 Janessa, I totally understand.  I had to get some of mine re-drawn as well
	 and it's a pain to have to go back. Glad to hear you cleared it up!


	 Lisa




	 **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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Hang in there! The IVIg is in your system and now you can relax a bit... I'm
sure you will be just fine, if your still worried, maybe do more IVIg. I know of
one lady who did 40g every 3 wks (w/o testing) up to 6 mo. Janessa

	 -----Original Message-----
	 From: jmdittrich [mailto:melissa@...]
	 Sent: Wed 3/31/2004 5:52 PM
	 To: immunologysupport@yahoogroups.com
	 Cc:
	 Subject: [immunologysupport] Pregnancy update (NK flare)


	 Hey all,
	 I've been of the boards for a few days. I will be 20 weeks pregnant with my
twin boys
	 tomorrow. Some of you may remember that I had a slight NK flare 2-3 weeks ago
(50:1
	 was 18) but at the same time had had a cold and fingernail infection, so under
DB's advice
	 we elected to just recheck NK's after the infections were gone. Well, I
re-checked them last
	 week and got a call from DB's office on Monday- my NK 50:1 was now 39.7!!! It
has NEVER
	 been that high (and in Feb. my 50:1 was 6.5). Well, I have heard DB say that
women can
	 have an NK flare between 18-24 weeks, and it looks like I'm in one. I tried not
to panic,
	 and after several hours on the phone between DB's office and my home infusion
company I
	 finally got 25 gms of IVIG last night. So, I've decided NOT to worry, and I
will recheck my
	 NK's next week. My last u/s was 3 weeks ago (my Level 2) and everything looked
	 absolutely perfect. I have another u/s and OB visit scheduled for Monday. I've
had no
	 symptoms of an NK flare, but then again I never have so... anyway, I will let
you guys know
	 when I get my NK's retested. Scary!
	 Melissa D



	 **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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Thanks for asking them Jane! Have a  great time! Wish I could meet you all for
dinner. It would be nice all of us could get together! Maybe someday! Janessa

	 -----Original Message-----
	 From: Jane Reed [mailto:edreed@...]
	 Sent: Wed 3/31/2004 9:07 PM
	 To: immunologysupport@yahoogroups.com
	 Cc:
	 Subject: [immunologysupport] Kristina L, Jenny, Janessa, Karen, Marci...thanks!


	 Kristina L, Jenny, Janessa, Karen, Marci...

	 Thanks so much for these great questions for Dr Beer!

	 I have added these onto my master question list for my meeting. Will
	 get back to the group with his responses, April 7th. I think getting
	 these issues sorted out will help everyone.

	 Anyone else with general interest questions, issues, concerns for Dr
	 Beer? Now is your chance to bring them up.

	 Jane



	 **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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Thanks GC!
I have been compiling a list of symptoms (after and during my last pg and m/c)
and questions for a few weeks now, good idea to create a complete list though.
What I have is all just a bunch of notes on scratch paper! With Quest, I was
kinda nice :-), but luckly I did not get the same woman I delt w/ at the
counter, for the draw! My dh asked why I didnt complain to higher above, I told
him that they really probably won't care so much since they have a corner on the
market here! At least there are about 10 or so locations here so it'll be a
while b4 I p**s them all off~!!! I just wish they would pay more attention! If
they make these mistakes we know about, what about the ones we dont know
about!!! Kinda scary when you think about the fact that they are doing HIV
tests!!! At least they only messed up my Serotonin! And really, out of all the
testing I've had done there, I guess 1 out of 20 or so is not so bad! Hope you
are doing good!!! And thanks for the advice! Janessa

	 -----Original Message-----
	 From: GC [mailto:ghunisec@...]
	 Sent: Wed 3/31/2004 2:29 PM
	 To: immunologysupport@yahoogroups.com
	 Cc:
	 Subject: Re: [immunologysupport] Janessa, re:Quest lab vent!


	 Janessa, I can totally relate.  I have had Quest do that on a few occasions
where I had to go back in to give more blood because they put it in the wrong
tube, or froze it when it should have been room temp, etc.  I figured I would
need these folks again so I tried to be a sport about it and just laugh. 
Sometimes, that's all you can do.  Good luck with that phone consult next week. 
Don't forget to write down as many questions as possible.  I know that I always
get that "white coat" syndrome and sometimes forget everything.  Fortunately my
dh is always there to ask everything I forgot.  Take care,
	 GC

	 Janessa <janessadawn@...> wrote:

		 Hey all! Just wanted to share a kinda funny story/vent about Quest
		 labs. I went to get the Serotonin test done, had avoided the
		 necessary foods and was all set to get the draw. Got it done with no
		 problem, so I thought! I got a call a few days later from Quest's
		 home office saying that my blood was not useable since it was not
		 frozen, I was told to go back to the same lab I got drawn at and do
		 it again. So, I had to wait 3 more days since I ate tomatoes and choc
		 almost immediately after the test! When I went in, the nurse that I
		 told this to said "Not me! I didnt mess up anything" Now, I was not
		 saying she messed it up, just that someone did at that lab. I had to
		 get the lady at the home office on the phone to explain to her. I
		 finally got my blood drawn again after a hour wait! One week passes
		 and I decide to call Chris at DBs and make sure they recieved the
		 test from Quest, well... they had not. I had to call client services
		 at Quest and finally got someone on the phone who said that DB's did
		 not request a fax but asked for mail instead, that is the reason for
		 delay. She goes on to read the address to me, ok but she said Los
		 Angeles!!! I say "no" Los Gatos, then she reads it back to me again
		 and says Los Galos, "no" I say... Los Gatos! I think the zip code
		 will get it there anyway, but I had her mail it again just in case.
		 Just a reminder to always follow up your labs and make sure results
		 are in! I have my 1st phone consult on April 6th and am running out
		 of time to get these tests done and re-done. Something to think
		 about! Janessa
		 oh yeah, thanks for letting me get that all out!



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Thanks! It is very interesting! I will definately look into this. Janessa

	 -----Original Message-----
	 From: lora371 [mailto:lora371@...]
	 Sent: Wed 3/31/2004 9:59 PM
	 To: immunologysupport@yahoogroups.com
	 Cc:
	 Subject: [immunologysupport] If this could help one person, it's worth
posting...(long)


	 I've been researching in any spare time I have(I am running out of
	 time here :)) and wanted to share this, in case it could help someone.

	 From Dr. Toth's book, chapter 3, also on his website at
	 www.fertilitysolution.com. This is a great account about one of his
	 patients.



	 When Lynn and I first met informally in 1980, she was emboldened by
	 years of frustration to share with me her disastrous reproductive
	 history. It was a history she assumed was behind her, for she had
	 ceased to menstruate the year before, at age thirty-seven, and three
	 different specialists had told her she had suffered ovarian failure.
	 In short, she considered herself a victim of premature menopause.

	 Lynn's health troubles began in 1969, when she married Richard. Prior
	 to the marriage, Richard had been bothered by frequent episodes of
	 nonspecific urethritis, a common inflammation of the urinary tract
	 that, in hindsight, was probably not treated adequately. After the
	 marriage, Lynn also began to have similar problems:
	 lower-urinary-tract infections and vaginal irritations. She
	 immediately became pregnant but lost the baby after four months due to
	 a premature rupture of membranes. No fertility workup was performed;
	 her doctor simply urged the couple to try again. In 1970, they
	 conceived once more, but Lynn miscarried within a few weeks.

	 Following the failure of her second pregnancy, Lynn had her first
	 fertility workup, which resulted in a rather broad diagnosis of
	 luteal-phase defect-that is, a delayed development of the uterine
	 lining. She was given progesterone, a typical medication for this
	 condition, and was told her chances of bearing a child full term would
	 subsequently be much better.

	 The strategy appeared to work: in 1972, after an eight-month
	 pregnancy, Lynn gave premature birth to a boy. Recalling this
	 pregnancy for me, she mentioned that her baby was conceived while she
	 was on a short course of tetracycline for a skin problem. She
	 remembered going to Florida shortly afterward and being forced to
	 discontinue the tetracycline because it made her skin too sensitive to
	 the sun. This seemingly insignificant detail stuck in my mind.

	 In the hospital, during her recuperation from the delivery, Lynn
	 developed a serious infection in her uterus (endometritis). She was
	 treated with antibiotics (ampicillin and cephalothin) and then sent
	 home with the baby. Right after her next period, she became pregnant
	 again. However, since neither Richard nor Lynn wanted a second child
	 so soon, Lynn had an induced abortion.

	 A year later, Richard and Lynn conceived another child but lost it at
	 fifteen weeks. Fertility specialists attributed this particular
	 miscarriage to an incompetent cervix and advised her to get a stitch
	 in her cervix to improve her chances of holding a fetus full term. She
	 chose not to get the stitch. "There was no guarantee it would do any
	 good," she explained. "Plus it would mean having to remain in bed for
	 most of the pregnancy, which I didn't think I could manage." Instead,
	 she opted for a heavy regimen of fertility drugs, including clomiphene
	 and progesterone.

	 Over the next four years, from 1975 through 1979, Lynn had five more
	 miscarriages. The last two pregnancies (her tenth and eleventh) were
	 so short in duration that they could be detected only by biochemical
	 analysis. At this point, her doctor warned her she was failing to
	 ovulate and her menstruation was shrinking away. He prescribed
	 Pergonal, one of the most potent fertility drugs available. Four
	 months before we met, she had stopped taking Pergonal. She had not had
	 a period-or sexual intercourse with her husband-since then.

	 Aside from all the emotional and physical pain Lynn had suffered
	 throughout the previous ten years, something else profoundly disturbed
	 me about her story. I couldn't reconcile its various elements: the
	 rationale behind individual diagnoses, the sequence of diagnoses, the
	 repeated occurrences of infection in her reproductive system, the
	 timing of her one successful pregnancy, and the ultimate conclusion
	 that she had irretrievably lost her reproductive powers. I finally
	 said to her, "Why don't we look into this matter a little further?"
	 Weary though she and her husband were, of tests and treatments, they
	 responded positively to my suggestion.

	 The first thing I did was perform culture studies for each partner:
	 two apiece to ensure accuracy. Both times, Richard's semen and a
	 biopsy from Lynn's uterine lining tested positive for chlamydia. This
	 discovery implied it was indeed highly possible, as I'd suspected,
	 that Lynn's reproductive difficulties were tied directly to bacterial
	 infection.

	 At my recommendation, Lynn came into the hospital for a laparoscopy (a
	 visualization of her ovaries via a telescope-like instrument); and
	 what we learned completely contradicted the grim diagnosis of ovarian
	 failure that had so depressed her. In fact, she had plenty of
	 eggs-they just weren't being released from the ovary as they should be.

	 In June of 1981, I prescribed a broad-spectrum antibiotic drug program
	 for Lynn and for Richard. Lynn received 100 milligrams of doxycycline
	 twice a day for six days intravenously in the hospital followed by
	 three weeks of the same dosage orally as an outpatient. Richard took
	 100 milligrams of doxycycline orally twice a day over the same time
	 period. Meanwhile, I advised them to continue abstaining from
	 intercourse until we had clear evidence their individual bacterial
	 infections were completely eradicated.

	 Right after the treatment ended, an ecstatic Lynn phoned me to say she
	 had resumed menstruating. An endometrial biopsy following this
	 announcement showed her uterine lining was in good condition,
	 possessing what is known in medical terms as perfect phase.

	 Enormously heartened by Lynn's progress, I said to her, "OK, go home
	 and start having sexual intercourse with your husband." It took a few
	 weeks before they were able to overcome two years of mutual avoidance,
	 but in October of 1981, Lynn conceived again. To everyone's joy, after
	 an uneventful, nine-month pregnancy, she gave birth to a healthy girl.

	 Looking back over the history of this case, I interpret Lynn's and
	 Richard's reproductive problems as follows. Because Lynn had never
	 experienced any genital-tract problems prior to her marriage and
	 because her husband had, I reasoned that Lynn's postnuptial history of
	 cystitis, vaginitis, and infection of the uterine lining and ovaries
	 came from exposure to Richard's seminal fluid. Most likely, chlamydia
	 entered Richard's seminal fluid during the time of his premarriage
	 genital-tract infections and was never completely eliminated by the
	 medication administered for those infections. The subsequent infection
	 of his wife was an ascending one; that is it began in the lowest part
	 of her genital tract and progressed to higher and higher structures
	 without obstructing the fallopian tubes.

	 The fertility workup conducted by the first specialist Lynn consulted
	 yielded a diagnosis of a deficient uterine lining with perfectly
	 maintained ovarian function and normal hormonal levels. Fertility
	 workups later in her history pointed to luteal phase defect plus a
	 deficient hormonal supply from the ovaries, indicating that the
	 ovaries, at this point, were now malfunctioning. Reviewing the
	 histological slide I prepared from her specimen at the time of the
	 laparoscopy, I saw clear evidence of bacterial infection, and
	 ultimately, I had no doubt that her failing ovaries were being
	 suppressed by chlamydia.

	 I was now able to envision mentally how a spreading bacterial
	 infection had led to Lynn's series of miscarriages. I propose that her
	 one pregnancy resulting in a live child, her son, was facilitated by
	 the tetracycline she was taking when the child was conceived. In
	 addition to clearing her skin condition, it also worked-without
	 anyone's knowledge at the time-to suppress the chlamydia in her
	 reproductive system, rendering her more capable of bearing a child. I
	 further propose that the tetracycline treatment was not extensive
	 enough to ensure a trouble-free pregnancy, and so she delivered
	 prematurely. Whether or not the young child's chronic episodes of
	 asthma, bronchitis, ear infection, and tonsillitis were due to
	 intrauterine exposure to microbes is only hypothetical, but from my
	 point of view, it could be of significant relevance.

	 Lynn's health history displays the whole spectrum of ways bacterial
	 infection can spread through the female genital tract and interfere
	 with every single step in the reproductive process. In fact, this one
	 case is so impressive that it single-handedly triggered my interest in
	 studying habitual aborters and the relationships between ongoing
	 bacterial infections and simultaneously deteriorating fertility. But
	 the fascinating scope of Lynn's case doesn't stop there. Her history
	 also reveals a potentially strong link between bacterial infection and
	 PMS.

	 Following the restoration of her normal menstrual cycle, Lynn reported
	 that several troublesome premenstrual problems she had experienced
	 during most of her married life had now changed for the better or had
	 completely disappeared. Specifically, she no longer suffered so
	 severely from breast tenderness, bloating, depression, or hostility,
	 and she was much more enthusiastic about sexual intercourse. Analyzing
	 her premenstrual symptoms closely, I found them to be the same
	 symptoms that many of my own patients and medical literature in
	 general associate with PMS. Five years passed before I could launch my
	 first organized study into the effects of antibiotics on certain cases
	 of PMS, but it was Lynn's case that prompted me to ask about PMS
	 symptoms in every subsequent consultation. In Chapter 5, I will talk
	 more about PMS and antibiotic therapy.





	 **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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Dont stress to much, Dr. Q in Nogales can get you the Rogham shot if you cant
get it b4 you go... just let her know right away so she can order it. It is just
a precaution, in case a few red blood cells get into the mix. Definately find
out what your dh's blood type is, I think they require that when you go anyway.
Make sure to get all your tests together on the list Jossie sent you (and I just
brought them with me when I went the first time). You'll be ok... just take deep
breaths :-)  Janessa

	 -----Original Message-----
	 From: jennyeitel@... [mailto:jennyeitel@...]
	 Sent: Wed 3/31/2004 6:47 PM
	 To: immunologysupport@yahoogroups.com
	 Cc:
	 Subject: Re: [immunologysupport] Db finally e-maile d me back it has been aweek
ladies!


	 Hey drB FINALLY e-maile me back and told me todo the double does.  And also I
got a e-mail from Jossie say I need a rogham shot ASAP becaseu I am + and Dh is
- ugh back to the dr tomorro.  Also ido not even know if my dh is - he just
thinks he i I will call our family PCP tomorrow UGH will this ever get easier
girls???????????????
	 JENNY


	 **Information in this group not to substitute for medical advice. Please
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I am going on a trip to Bisbee w/ my dh and decided that since I am only an hour
and 1/2 away from Nogales.... I may as well get another dose. I have heard that
it lasts 6mo. to a lifetime, I figure I am nearing the end of my 6mo. and since
the LAD costs 270 and a LIT dose is 300, I wont get the test... I'll just pay
the extra 30 and get the LIT.  And yes, it is a really fun trip if you know
where to go! Janessa

	 -----Original Message-----
	 From: Danielle Rosso [mailto:counselor94@...]
	 Sent: Wed 3/31/2004 9:27 PM
	 To: immunologysupport@yahoogroups.com
	 Cc:
	 Subject: RE: [immunologysupport] Danielle.....Dates for Dr.Q in May....jenny
Re: I have called all phone#s in our files for LIT what do I


	 Thank you!
	 You make it sound like so much fun!
	 I wondered, you have been twice.  I thought people only needed to go twice, why
are you going again?
	 Danielle

	 "Dawn, Janessa" <janessadawn@...> wrote:

		 Here ya go!
		 I got the new dates:
		 April: 10th, 16th and 24th
		 May: 8th, 15th, 22nd and 29th
		 Janessa

		       -----Original Message-----
		       From: Danielle Rosso [mailto:counselor94@...]
		       Sent: Tue 3/30/2004 9:34 PM
		       To: immunologysupport@yahoogroups.com
		       Cc:
		       Subject: Re: [immunologysupport] jenny Re: I have called all phone#s in
our files for LIT what do I


		       Does anyone know when Dr. Q will be doing LIT in May.  Is April 10th the
only date in April?
		       Danielle

		       MM <jstpddle@...> wrote:

		             jenny try the number from the website.
		             http://www.cemef.com.mx/CEMEF1/feedback.htm
		             011 52 644 415 50 72

		             miz


		             --- In immunologysupport@yahoogroups.com, jennyeitel@a... wrote:
		             > I cannot get a holdof DQ in Mexico.  I have e-mailed him twice
		             jossie once.
		             > I just called all am all the numbers in our group files forLIT
and
		             none of
		             > them work except the office phone where the woman speaks no
		             English.  What do I
		             > do? JENNY
		             >
		             > How did anyone get a hold of DB or DQ???????????????/



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		 > ATTACHMENT part 2 application/ms-tnef name=winmail.dat



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Danielle, I think Columbia or Walgreens has the best prices. You can get 40g at
Walgreens for 1900 and it's the good stuff, gammaguard. I found an infusion co.
here in New Orleans that lets me bring my own and they only charge me 200 for a
2-4 hr infusion.... so just check around, they do exist.... my place is called
HCS (home care services or specilist) although they have their own infusion
center and dont come to your home. Good luck! Janessa

	 -----Original Message-----
	 From: Danielle Rosso [mailto:counselor94@...]
	 Sent: Wed 3/31/2004 10:01 PM
	 To: immunologysupport@yahoogroups.com
	 Cc:
	 Subject: [immunologysupport] Cost of IVIg


	 I have a question about IVIg infusion.  I spoke with a local home health care
co. today and asked about the cost of an infusion.  I was told it wold be $4000.
I told her that sounded high to me.  She said that 10 g of IVIG was $1500.  I
need 25 so the bulk fo the cost was the IVIg.  I asked about suppling my own
IVIg.  She sadi she would need to check on that.  Any advice?  I thought I had
read that I could get IVIg through Columbia.  Is that true?  How do I do that
and how much is it?
	 Thanks,
	 Danielle
	 PS  Will infusion centers let you bring the IVIg with you?


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Sue, I am so sorry to hear of the bfn! I know it's a drag to be your own dr.,
but... who knows us better than us? I also used IVIg with my FET and still had a
m/c.... I am thinking that DB will say I need Humira, but we will find out on
April 6th during our phone consult. Have you asked DB about the spotting? Do you
think you need Humira? Hang in there, you'll figure it out! Janessa

	 -----Original Message-----
	 From: Sue [mailto:sminogue@...]
	 Sent: Wed 3/31/2004 8:22 PM
	 To: immunologysupport@yahoogroups.com
	 Cc:
	 Subject: [immunologysupport] BFN Fet 5th try 1st w/ IVIg


	 Just wanted let you know it did not work again. Has to be my uterus
	 and has to do with the spotting I always have 5-7 days before AF. I
	 am tired of being my own DR. and self diagnosing. I wish there was a
	 DR. that could open me up fix me and then I could get PG all the
	 time. It just S-cks!

	 Thanks for letting me vent,
	 Sue



	 **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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Great question, Beth.

I will be interested to hear Dr Beer's answer to that one:
"What is the significance of him being the only dr. with a patent to
use humira on RI patients?"

Hmmm. This idea of patenting science has always rather bothered me a
little (not knowing anything else about this)

Will definitely broach this one with him. Yes, how does this
benefit "us, the patients"?

Excellent question.

Jane




--- In immunologysupport@yahoogroups.com, "egran03" <egran03@y...>
wrote:
> >
> > Anyone else with general interest questions, issues, concerns for
> Dr
> > Beer? Now is your chance to bring them up.
>
>
> Here's a question for DB:
>
> What is the significance of him being the only dr. with a patent to
> use humira on RI patients?  What does having a patent in this
> situation mean?  Does it mean that other Drs pay him an
> override/license fee for each rx?  (i.e. is this a benefit to him)
Is
> this a way to get less criticism for rx'ing anti-tnfa drugs as an
off-
> label rx?  (is this a benefit to him and us patients)  Basically,
how
> does his having this patent help us?
>
> Thanks Jane!!

Hi!

Thank you to all of you that answered my question about using Enbrel
instead od Humira since Humira is difficult to get hold of in Sweden.

I received an anser from Dr Beer, and according to his mail its ok to
use Enbrel instead. Se part of the mail below:
________

Would it be wise/ok to use Embrel instead?

DB: You may take the enbrel 25 mg every 84 hours for 30 days before a
cycle of conception.  Test the TH1 Th2 cytokine and NK assay at that
time and continue the enbrel through the cycle of conception until we
see a heart beat on ultrasound.

Are there any negative consequences? Or shold we try to somehow, if
possible, get hold of Humira?

DB:Both work equally well.

_______

I guess it is at least ok to start with Enbrel and if my NK Assay
does not improve, then switch to Humira?´

Catharina

I do my infussion at DB's office but I buy my IVIG through Columbia
Pharmacy.  Columbia charges $1225 for 25g to those individuals whose
insurance does not cover.
When I bought last, they took down my insurance information and they
filed the claim.  They told me that it will be in their files for 3
months.  At the end of 3 months, I'll have to pay for it if the
insurance do not.  Luckily my insurance paid for it last time.
Columbia FedEx's their meds. So it will get there the next day.
Their number is:  312-791-3334.  Renee gave me the info.

So if you buy it from Columbia, the infussion procedure should cost
~$400... Total of ~$1600-~$1700.  So $4000 is a bit steep.

miz
--- In immunologysupport@yahoogroups.com, Danielle Rosso
<counselor94@y...> wrote:
> I have a question about IVIg infusion.  I spoke with a local home
health care co. today and asked about the cost of an infusion.  I
was told it wold be $4000.  I told her that sounded high to me.  She
said that 10 g of IVIG was $1500.  I need 25 so the bulk fo the cost
was the IVIg.  I asked about suppling my own IVIg.  She sadi she
would need to check on that.  Any advice?  I thought I had read that
I could get IVIg through Columbia.  Is that true?  How do I do that
and how much is it?
> Thanks,
> Danielle
> PS  Will infusion centers let you bring the IVIg with you?
>
>
> ---------------------------------
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