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#97961 From: Sherry Ramey <rameybear@...>
Date: Thu Nov 12, 2009 5:41 pm
Subject: Re: Results arrived from Chicago
rameybear
Offline Offline
Send Email Send Email
 
Sorry don't know what they mean since I just had my blood drawn and they're working on it now.  Just curious who your doc is?


From: redrundle <fertility@...>
To: immunologysupport@yahoogroups.com
Sent: Thu, November 12, 2009 9:14:21 AM
Subject: [immunologysupport] Results arrived from Chicago

 

I just had my results and can't talk to my doctor on the phone until tomorrow, so I'm hoping someone can put me out of my misery and tell me what all this means-

NK Assay (5 Killed) Panel
50:1 8.4
25:1 6.3
12.5:1 4.0
IgG conc 12.5 50:1 6.2
IgG conc 12.5 25:1 5.2
IgG conc 6.25 50:1 7.6
IgG conc 6.25 25:1 5.2
% CD3 83.8
%CD19 2.9
%CD56 10.8
% of CD19= cells,CD5+ 3.4

Leukocyte Antibody Detection
Flowcytometry negative
[T-cells] IgM+ 2.6
[T-cells] IgG+ 1.0
[B-cells] IgM+ 13.4
[B-cells] IgG+ 9.1

TH1:TH2 intracelluar cytokine ratios
TNF-a:IL-10 (CD3+CD4+) 32.2
IFN-g:IL-10 (CD3+CD4+) 32.0

NK assay w/Intralipid
50:1 w/Intralipid 1.5mg/ml 12.8
25:1 w/Intralipid 1.5 mg/ml 8.1

DQ Alpha Genotype
Me - DQ Alpha 0102,0501
My husband - DQ Alpha 0104,0201

Many thanks



#97960 From: "kristenmiller1978" <kristenmiller1978@...>
Date: Thu Nov 12, 2009 4:54 pm
Subject: Re: Natural conception
kristenmille...
Offline Offline
Send Email Send Email
 
I had problems conceiving in the first couple months, until one day I read about
the ABC's of conception, and realized I did not make cervical fluid around the
time of ovulation.  So, I purchased the product called FertileCM from Fairhaven
Health (I am SO sorry if I am violating a rule here) and started taking it from
the onset of my period.  By day 14-15, I would see the fluid, and each time I
got pregnant that month.  Now, I lost my last two pregnancies, but hopefully I
will find a doctor willing to help me suppress my immune system very soon.   HTH

I also do yoga and get acupuncture every 1-2 weeks.

--- In immunologysupport@yahoogroups.com, Mandy Cairns <manders41@...> wrote:
>
> Hi, it has taken us between 1-9 mths previously to conceive the 6 times. We're
now on mth 6 and no success after immune treatment. Due to my age our RI has
suggested IVF. We are however trying some things before taking that step. This
is the first mth I've tried taking steroids pre concep, started CD 6. I wonder
if perhaps you could try steroids earlier? Sure Dr Kwak has her reasons for
waiting to after ov tho. Can't think of anything else apart from gluten free to
reduce inflammation...having said that tho I've not conceived since starting the
GF diet but know other people who have.
>  
> Sorry don't have more advice than that. GL.
>  
> X+x
>
> 42, 1 DS aged 6
> 5 m/cs, 4 yrs ttc #2
> Slightly pos APS, low Free T4, borderline ANAs, CD19+/CD5+ cells 15%, Th1/Th2
ratio 61 (reduced to 33 after 4 doses pre-concep Humira), Neg LAD
>
> Currently on :
> Menevit, calcium + vit D, 1/4 aspirin after ov, Royal Jelly, trying 5 mg
steroids this mth
>  
> Protocol :
> Pre-concep - Humira 40mg x 4 before ttc and re-test levels then BA (might
try it post ov tho), steroids 5 mg (might not do pre-concep as other treatment
sufficient), calcium, LIT done 3 July.
>  
> At + test - stop BA (but might not do that!), intralipids, steroids 20 mg
(weaning off at 12 wks), heparin 20 mg once per day (test APS at 12 wks),
Ultrogestan pessaries 400mg till 12 wks
>  
> Acupuncture, herbs, kinesiology, gluten free and looking into
HypnoFertility 
>
>
>
> --- On Wed, 11/11/09, dustipalecek <dustipalecek@...> wrote:
>
>
> From: dustipalecek <dustipalecek@...>
> Subject: [immunologysupport] Natural conception
> To: immunologysupport@yahoogroups.com
> Date: Wednesday, 11 November, 2009, 16:20
>
>
>  
>
>
>
> Could those of you who conceived naturally tell me how long it took you to get
pregnant? I'm stressing that my immune problems have ruined my chances to
conceive naturally.
>
> Also, has anyone out there had results like mine and had success? Here's what
I tested positive for. I'm a patient of Dr. Kwak.
>
> positive ANA(1:80)
> positive APA
> hetero for MTHFR (C677T)
> hetero PAI-1
> normal CD19+ B cell levels with elevated CD5+B-1 cells (mine are 13.3)
>
> Treatment protocol:
> - 40 mg Lovenox 1x day, start on CD 6 (increase to 2x day at BFP)
> - Endometrin 3x day, 48 hours after ovulation
> - 10 mg a day prednisone 48 hours after ovulation (increase to 20 mg with BFP)
> - baby aspirin
> - vitamin E
> - Metanx
> - Calcium + vitamin D
> - Metformin
> - prenatals
> - Low carb diet
>
> I'm worried about it not being enough as we can't afford IVIG. Any thoughts,
advice, etc. would be greatly appreciated!
>

#97959 From: "kristenmiller1978" <kristenmiller1978@...>
Date: Thu Nov 12, 2009 4:48 pm
Subject: Dexamethasone vs. Prednisone
kristenmille...
Offline Offline
Send Email Send Email
 
Hi!  Would any of you care to share which drug you think is better for
suppressing the immune system?  I had my family doctor run Dr. Beer's NK assay,
as my RE would not, and when the test came back, it reported that my
CD3-/CD16+CD56+ came back 24 percent!

Now, the Quest report shows it just in range, and that 25 percent is the first
number out of range.  However, I found under the "Files" section here, that
anythign over 12% is cause for concern according to Dr. Beer

So, I can't find a local RE to help me.  Short of making the pilgrimage to
California, could anyone suggest some help for me and my family doctor?  He will
give me the prescription for a corticosteriod, but we are flying by the seat of
our pants a bit.  ANY help as far as doseage or shared experiences would be
helpful

THANKS

#97958 From: "Ciara" <ciara@...>
Date: Thu Nov 12, 2009 2:31 pm
Subject: RE: Has anyone been induced
ciaracrews
Offline Offline
Send Email Send Email
 

Thanks for the response Jennifer,  what you said is exactly why I am not thrilled with the idea of induction.  It is funny I hear so many women talk about how they want it so they can plan when the birth is but they fail to realize that your body may not go along and then you are going for a c section.  I am thinking I will switch to Heparin as the time get nearer and then try some acupuncture and good old fashioned sex to get this baby going on its own. 

 

Ciara

 

From: immunologysupport@yahoogroups.com [mailto:immunologysupport@yahoogroups.com] On Behalf Of Jennifer Oh
Sent: Thursday, November 12, 2009 7:19 AM
To: Immunology Support
Subject: RE: [immunologysupport] Has anyone been induced

 

 

Is there a particular reason why she wants you induced? I personally do not think induction is necessary. The thing with induction is once you start that process with either cervidil or pitocin, if you are not progressing the way they want you to (you are taking up a bed and their time), then they will ramp up the pitocin and if you don't progress in time they will talk of C-section. If you don't mind that then you may want to consider that. However, having gone through that experience (didn't want induction but my water broke and no progress), it was not pleasant at all.
 


To: immunologysupport@yahoogroups.com
From: ciara@...
Date: Tue, 10 Nov 2009 19:46:48 -0600
Subject: [immunologysupport] Has anyone been induced

 

Hello all

 

I am a patient of Dr Kwak’s and she has told me that she would like me to be induced at 39 weeks so that I can be off my Lovenox for 3 days prior to birth.  I am currently 34 weeks.  I will be discussing this with my OB/GYN tomorrow but in the mean time wanted to know what you ladies have to say about the inducing process.  What drugs are usually used?  Do they strip your membranes?  Does Pineapple really help induce contractions and also should I try the acupuncture route before resorting to medicine?

 

I don’t really want to do medical induction but don’t know much about this.    

 

Thanks in advance

 

Ciara

 

 


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#97957 From: "Ciara" <ciara@...>
Date: Thu Nov 12, 2009 2:28 pm
Subject: RE: Ciara - re: induction
ciaracrews
Offline Offline
Send Email Send Email
 

Thanks Tina

 

I am really leaning towards doing the Heparin.  Good luck to you and looking forward to the good news.

 

Ciara

 

From: immunologysupport@yahoogroups.com [mailto:immunologysupport@yahoogroups.com] On Behalf Of albertinamel
Sent: Wednesday, November 11, 2009 9:21 PM
To: immunologysupport@yahoogroups.com
Subject: [immunologysupport] Ciara - re: induction

 

 

I'm on Lovenox & aspirin until next week (36 wk), at which point I'm supposed to switch to a comparable dose of Heparin (no aspirin) at a half-dose, 2x/day. That's b/c Heparin only stays potently in your system about 12 hours, whereas Lovenox is 24 hrs.

They want to have the Heparin out of my system if I start contractions at any point. I guess they figure that if you stop the shots once you feel the first mild contractions then you probably won't be in full-blown childbirth for at least 12 hours, enough time for most of it to leave your system.

I don't plan to be induced unless I start to go past 40 wk. My mom is arriving at 39 wk, 4 days and plans to fly back the day after xmas (41 wk, 4 days). I want to make sure this baby is out by xmas and preferably before my OB goes on vacation on the 18th. So I'm already thinking about a possible induction on Dec 17/18. But that's all my thinking. My OB says, "Let's just see how things work out. This baby seems big and may come early anyway." She has never suggested induction due to Lovenox. I don't think induction is standard protocol. It may not be unheard of, either, but it's certainly not something you have to do.

Tina


#97956 From: "redrundle" <fertility@...>
Date: Thu Nov 12, 2009 2:14 pm
Subject: Results arrived from Chicago
redrundle
Offline Offline
Send Email Send Email
 
I just had my results and can't talk to my doctor on the phone until tomorrow,
so I'm hoping someone can put me out of my misery and tell me what all this
means-

NK Assay (5 Killed) Panel
50:1                 8.4
25:1                 6.3
12.5:1               4.0
IgG conc 12.5 50:1   6.2
IgG conc 12.5 25:1   5.2
IgG conc 6.25 50:1   7.6
IgG conc 6.25 25:1   5.2
% CD3               83.8
%CD19                2.9
%CD56               10.8
% of CD19= cells,CD5+ 3.4

Leukocyte Antibody Detection
Flowcytometry     negative
[T-cells] IgM+    2.6
[T-cells] IgG+    1.0
[B-cells] IgM+    13.4
[B-cells] IgG+     9.1

TH1:TH2 intracelluar cytokine ratios
TNF-a:IL-10 (CD3+CD4+)  32.2
IFN-g:IL-10 (CD3+CD4+)  32.0

NK assay w/Intralipid
50:1 w/Intralipid 1.5mg/ml  12.8
25:1 w/Intralipid 1.5 mg/ml  8.1

DQ Alpha Genotype
Me - DQ Alpha  0102,0501
My husband - DQ Alpha  0104,0201

Many thanks

#97955 From: Jennifer Oh <jenkangoh@...>
Date: Thu Nov 12, 2009 1:19 pm
Subject: RE: Has anyone been induced
jenniferoh...
Offline Offline
Send Email Send Email
 
Is there a particular reason why she wants you induced? I personally do not think induction is necessary. The thing with induction is once you start that process with either cervidil or pitocin, if you are not progressing the way they want you to (you are taking up a bed and their time), then they will ramp up the pitocin and if you don't progress in time they will talk of C-section. If you don't mind that then you may want to consider that. However, having gone through that experience (didn't want induction but my water broke and no progress), it was not pleasant at all.
 

To: immunologysupport@yahoogroups.com
From: ciara@...
Date: Tue, 10 Nov 2009 19:46:48 -0600
Subject: [immunologysupport] Has anyone been induced

 

Hello all

 

I am a patient of Dr Kwaks and she has told me that she would like me to be induced at 39 weeks so that I can be off my Lovenox for 3 days prior to birth.  I am currently 34 weeks.  I will be discussing this with my OB/GYN tomorrow but in the mean time wanted to know what you ladies have to say about the inducing process.  What drugs are usually used?  Do they strip your membranes?  Does Pineapple really help induce contractions and also should I try the acupuncture route before resorting to medicine?

 

I dont really want to do medical induction but dont know much about this.    

 

Thanks in advance

 

Ciara




Find the right PC with Windows 7 and Windows Live. Learn more.

#97954 From: Jennifer Oh <jenkangoh@...>
Date: Thu Nov 12, 2009 1:07 pm
Subject: RE: dexamethasone... weight gain and hairy face (pg mentioned)
jenniferoh...
Offline Offline
Send Email Send Email
 
I was on prednisone preconception til week 17 of my pregnancy. I gained 8-10 lbs off the bat and was 15 lbs heavier  by end of first trimesterand grew facial hair (stache, chin, sides of my face, fast eyebrow growth, legs and feet) all over and really bad acne. My tummy popped out pretty early around week 13. Now that I've been off prednisone for 8 weeks, my facial  hair has subsided, and I've only gained about 4-5 lbs. I can tell my core is getting heavier while the scale stays the same. Also the moon face has gone away. However, my acne continues so I guess it's due to the pregnancy and not the prednisone. But rest assured, it does get better.
 

To: immunologysupport@yahoogroups.com
From: grubcat@...
Date: Wed, 11 Nov 2009 09:43:15 -0800
Subject: [immunologysupport] dexamethasone... weight gain and hairy face (pg mentioned)

 
I've been on Dex since June- and I'm currently 10 weeks pregnant (after 3 years and many  losses).  I've gained 15 lbs, and the hair on my face blows in the wind as side effects from dex.  None of this weight is baby- that is yet to come.  In addition I have rosacea which will flare terribly when I wean off the dex- but that is a different story.  Please give me some stories to comfort me about the dex.  Will this hair on my face stop growing?  Will the weight come off?  How long will my rosacea flare when I go off the dex?  How long did it take you to come off the dex if you were on it for a long time? 



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#97953 From: Mandy Cairns <manders41@...>
Date: Thu Nov 12, 2009 9:24 am
Subject: Re: Recurrent Miscarriages
manders41
Offline Offline
Send Email Send Email
 
I'm in the UK so don't know anyone. Quite often the Drs don't do the testing themselves but are happy to work with the Beer centre for instance or a lab who does the testing. I think it'll be a case of phoning round and maybe put another post on here to see if anyone has used someone in your area.
 
GL
 
X+x
42, 1 DS aged 6
5 m/cs, 4 yrs ttc #2
Slightly pos APS, low Free T4, borderline ANAs, CD19+/CD5+ cells 15%, Th1/Th2 ratio 61 (reduced to 33 after 4 doses pre-concep Humira), Neg LAD

Currently on :
Menevit, calcium + vit D, 1/4 aspirin after ov, Royal Jelly, trying 5 mg steroids this mth
 
Protocol :
Pre-concep - Humira 40mg x 4 before ttc and re-test levels then BA (might try it post ov tho), steroids 5 mg (might not do pre-concep as other treatment sufficient), calcium, LIT done 3 July.
 

At + test - stop BA (but might not do that!), intralipids, steroids 20 mg (weaning off at 12 wks), heparin 20 mg once per day (test APS at 12 wks), Ultrogestan pessaries 400mg till 12 wks
 
Acupuncture, herbs, kinesiology, gluten free and looking into HypnoFertility 



--- On Thu, 12/11/09, Ru Var <ru_var@...> wrote:

From: Ru Var <ru_var@...>
Subject: Re: [immunologysupport] Recurrent Miscarriages
To: immunologysupport@yahoogroups.com
Date: Thursday, 12 November, 2009, 2:57

 
Thanks Mandy, Do you know any of these doctors who does the Immune Testing in CT area? My RE does not believe in immune thing...
 
Thanks again!

--- On Tue, 11/10/09, Mandy Cairns <manders41@yahoo. co.uk> wrote:

From: Mandy Cairns <manders41@yahoo. co.uk>
Subject: Re: [immunologysupport] Recurrent Miscarriages
To: immunologysupport@ yahoogroups. com
Date: Tuesday, November 10, 2009, 4:05 PM

 
Here's a list from the file section, it could be out of date tho as it's compiled from grp members over time.
 
HTH
 

 

Connecticut

 

Dr. Besser
166 W. Broad Street
Suite 203
Stamford, CT 06902


Michelle Brown M.D.
1250 Summer Street
Suite 203

Stamford
, CT 06905


Kenneth Eckhart M.D.
Middlesex OB/GYN Associates, P.C.
540 Saybrook Road
Middletown, CT 06457
Phone: 203-347-7491


John Gibbons M.D.
114 Woodland Street
Hartford, CT 06105


Gerard Goye M.D.
172 Mount Pleasant Road
Newtown, CT 06470
Phone: 203-797-7000


Gad Lavy M.D.
1250 Summer Street
Stamford, CT 06905
Phone: 203-325-3200


Donald B. Maier M.D.
263 Farmington Avenue
Farmington, CT 06030-1230
Phone: 203-679-2193


Silvio Mandara M.D.
Stamford, CT 06905
Phone: 203-324-2262


Pauline Olsen M.D.
19 Woodland Street
Hartford, CT 06105
Phone: 203-728-1212


Richard Rueben M.D.
90 Locust Avenue
Danbury, CT 06810

Phone: 203 792 5005

 

 

Dr Turk

Greenwich, CT
Patient comments: “Although I have not found a clinic that specifically does the immune testing, I found a ob/gyn that would help me follow DB/DS protocol in
greenwich.   His name is Dr. Turk, but really I found out which tests to do then asked him to do them.  He did not know of the protocol off hand.”



Richard Viscarello M.D.
1275 Summer
Stamford, CT 06906


T. J. Yang D.V.M.
Department of Pathobiology
University of Connecticut
61 N. Eaglesville Road, Box U
Storrs, CT 06268


Steven Zamore M.D.
90 Locust Avenue
Danbury, CT 06801
Phone: 203-792-5005



42, 1 DS aged 6
5 m/cs, 4 yrs ttc #2
Slightly pos APS, low Free T4, borderline ANAs, CD19+/CD5+ cells 15%, Th1/Th2 ratio 61 (reduced to 33 after 4 doses pre-concep Humira), Neg LAD

Currently on :
Menevit, calcium + vit D, 1/4 aspirin after ov, Royal Jelly, trying 5 mg steroids this mth
 
Protocol :
Pre-concep - Humira 40mg x 4 before ttc and re-test levels then BA (might try it post ov tho), steroids 5 mg (might not do pre-concep as other treatment sufficient), calcium, LIT done 3 July.
 

At + test - stop BA (but might not do that!), intralipids, steroids 20 mg (weaning off at 12 wks), heparin 20 mg once per day (test APS at 12 wks), Ultrogestan pessaries 400mg till 12 wks
 
Acupuncture, herbs, kinesiology, gluten free and looking into HypnoFertility 



--- On Mon, 9/11/09, ru_var <ru_var@yahoo. com> wrote:

From: ru_var <ru_var@yahoo. com>
Subject: [immunologysupport] Recurrent Miscarriages
To: immunologysupport@ yahoogroups. com
Date: Monday, 9 November, 2009, 21:38

 
Hi there!

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

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

-Thanks





#97952 From: "makaylawrightpips" <makaylawrightpips@...>
Date: Thu Nov 12, 2009 8:16 am
Subject: Thursday's New Giveaways! (Nov 12)
makaylawrigh...
Offline Offline
Send Email Send Email
 
Hello Everyone!

Here is a FRESH selection of stuff members can collect for nothing

There is lots to grab in this new Giveaway Mix!

http://groups.google.com/group/freebieshare/web/giveaway-mix-november-12

Enjoy!

#97951 From: "Katina Hollman" <natesmommy@...>
Date: Thu Nov 12, 2009 4:23 am
Subject: RE: New here, just diagnosed with MTHFR and lupus anticoagulant
natesmommy12600
Offline Offline
Send Email Send Email
 

Thanks. I didn’t know that. I will look for them. J

Katina

 

 

From: immunologysupport@yahoogroups.com [mailto:immunologysupport@yahoogroups.com] On Behalf Of Mandy Cairns
Sent: Wednesday, November 11, 2009 4:50 AM
To: immunologysupport@yahoogroups.com
Subject: Re: [immunologysupport] New here, just diagnosed with MTHFR and lupus anticoagulant

 

 

Hi Katina, sure you will get some replies but just to let you know there are specific yahoo grps for these issues too. MTHFR grp and Hughes Syndrome covers LA.

 

X+x

42, 1 DS aged 6

5 m/cs, 4 yrs ttc #2

Slightly pos APS, low Free T4, borderline ANAs, CD19+/CD5+ cells 15%, Th1/Th2 ratio 61 (reduced to 33 after 4 doses pre-concep Humira), Neg LAD

Currently on :

Menevit, calcium + vit D, 1/4 aspirin after ov, Royal Jelly, trying 5 mg steroids this mth

 

Protocol :

Pre-concep - Humira 40mg x 4 before ttc and re-test levels then BA (might try it post ov tho), steroids 5 mg (might not do pre-concep as other treatment sufficient), calcium, LIT done 3 July.
 
At + test - stop BA (but might not do that!), intralipids, steroids 20 mg (weaning off at 12 wks), heparin 20 mg once per day (test APS at 12 wks), Ultrogestan pessaries 400mg till 12 wks

 

Acupuncture, herbs, kinesiology, gluten free and looking into HypnoFertility 



--- On Tue, 10/11/09, natesmommy12600 <natesmommy@...> wrote:


From: natesmommy12600 <natesmommy@...>
Subject: [immunologysupport] New here, just diagnosed with MTHFR and lupus anticoagulant
To: immunologysupport@yahoogroups.com
Date: Tuesday, 10 November, 2009, 21:00

 

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

 

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#97950 From: Dusti Palecek <dustipalecek@...>
Date: Thu Nov 12, 2009 3:29 am
Subject: Re: Natural conception
dustipalecek
Offline Offline
Send Email Send Email
 
Thanks for the info/advice Mandy!


#97949 From: "albertinamel" <albertinamel@...>
Date: Thu Nov 12, 2009 3:21 am
Subject: Ciara - re: induction
albertinamel
Offline Offline
Send Email Send Email
 
I'm on Lovenox & aspirin until next week (36 wk), at which point I'm supposed to
switch to a comparable dose of Heparin (no aspirin) at a half-dose, 2x/day. 
That's b/c Heparin only stays potently in your system about 12 hours, whereas
Lovenox is 24 hrs.

They want to have the Heparin out of my system if I start contractions at any
point. I guess they figure that if you stop the shots once you feel the first
mild contractions then you probably won't be in full-blown childbirth for at
least 12 hours, enough time for most of it to leave your system.

I don't plan to be induced unless I start to go past 40 wk. My mom is arriving
at 39 wk, 4 days and plans to fly back the day after xmas (41 wk, 4 days). I
want to make sure this baby is out by xmas and preferably before my OB goes on
vacation on the 18th. So I'm already thinking about a possible induction on Dec
17/18. But that's all my thinking. My OB says, "Let's just see how things work
out. This baby seems big and may come early anyway." She has never suggested
induction due to Lovenox. I don't think induction is standard protocol. It may
not be unheard of, either, but it's certainly not something you have to do.

Tina

#97948 From: Ru Var <ru_var@...>
Date: Thu Nov 12, 2009 2:57 am
Subject: Re: Recurrent Miscarriages
ru_var
Offline Offline
Send Email Send Email
 
Thanks Mandy, Do you know any of these doctors who does the Immune Testing in CT area? My RE does not believe in immune thing...
 
Thanks again!

--- On Tue, 11/10/09, Mandy Cairns <manders41@...> wrote:

From: Mandy Cairns <manders41@...>
Subject: Re: [immunologysupport] Recurrent Miscarriages
To: immunologysupport@yahoogroups.com
Date: Tuesday, November 10, 2009, 4:05 PM

 
Here's a list from the file section, it could be out of date tho as it's compiled from grp members over time.
 
HTH
 

 

Connecticut

 

Dr. Besser
166 W. Broad Street
Suite 203
Stamford, CT 06902


Michelle Brown M.D.
1250 Summer Street
Suite 203

Stamford
, CT 06905


Kenneth Eckhart M.D.
Middlesex OB/GYN Associates, P.C.
540 Saybrook Road
Middletown, CT 06457
Phone: 203-347-7491


John Gibbons M.D.
114 Woodland Street
Hartford, CT 06105


Gerard Goye M.D.
172 Mount Pleasant Road
Newtown, CT 06470
Phone: 203-797-7000


Gad Lavy M.D.
1250 Summer Street
Stamford, CT 06905
Phone: 203-325-3200


Donald B. Maier M.D.
263 Farmington Avenue
Farmington, CT 06030-1230
Phone: 203-679-2193


Silvio Mandara M.D.
Stamford, CT 06905
Phone: 203-324-2262


Pauline Olsen M.D.
19 Woodland Street
Hartford, CT 06105
Phone: 203-728-1212


Richard Rueben M.D.
90 Locust Avenue
Danbury, CT 06810

Phone: 203 792 5005

 

 

Dr Turk

Greenwich, CT
Patient comments: “Although I have not found a clinic that specifically does the immune testing, I found a ob/gyn that would help me follow DB/DS protocol in
greenwich.   His name is Dr. Turk, but really I found out which tests to do then asked him to do them.  He did not know of the protocol off hand.”



Richard Viscarello M.D.
1275 Summer
Stamford, CT 06906


T. J. Yang D.V.M.
Department of Pathobiology
University of Connecticut
61 N. Eaglesville Road, Box U
Storrs, CT 06268


Steven Zamore M.D.
90 Locust Avenue
Danbury, CT 06801
Phone: 203-792-5005



42, 1 DS aged 6
5 m/cs, 4 yrs ttc #2
Slightly pos APS, low Free T4, borderline ANAs, CD19+/CD5+ cells 15%, Th1/Th2 ratio 61 (reduced to 33 after 4 doses pre-concep Humira), Neg LAD

Currently on :
Menevit, calcium + vit D, 1/4 aspirin after ov, Royal Jelly, trying 5 mg steroids this mth
 
Protocol :
Pre-concep - Humira 40mg x 4 before ttc and re-test levels then BA (might try it post ov tho), steroids 5 mg (might not do pre-concep as other treatment sufficient), calcium, LIT done 3 July.
 

At + test - stop BA (but might not do that!), intralipids, steroids 20 mg (weaning off at 12 wks), heparin 20 mg once per day (test APS at 12 wks), Ultrogestan pessaries 400mg till 12 wks
 
Acupuncture, herbs, kinesiology, gluten free and looking into HypnoFertility 



--- On Mon, 9/11/09, ru_var <ru_var@yahoo. com> wrote:

From: ru_var <ru_var@yahoo. com>
Subject: [immunologysupport] Recurrent Miscarriages
To: immunologysupport@ yahoogroups. com
Date: Monday, 9 November, 2009, 21:38

 
Hi there!

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

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

-Thanks




#97947 From: "annaandbella" <annaandbella@...>
Date: Thu Nov 12, 2009 2:15 am
Subject: Re: Is Ectopic Pregnancy related to Immune issues? How to treat w/o IVIG or LIT?
annaandbella
Offline Offline
Send Email Send Email
 
Hi Linda,

Many thanks for your reply! Actually I have no tubes any more because they were
full of endo apparently and also hydrosalpinx (fluid) so my surgeon removed them
on my last lap ... I know my case is really rare but it was an ectopic w/o tubes
and my doc couldn't even find it (despite beta of 3500). He suspected it was on
the "tubal stump" left by the salpingectomy/tube removal or perhaps cornual (in
the corner of the uterus near the old tube opening) ... I read somewhere people
saying that your uterus can be hostile if the embie is trying to implant outside
of it?? ... Did you have your tubes removed due to endo or did they treat it
some other way? Did you do surgery or antibiotics or meds for endo? Looking fwd
to hearing thanks again for your reply!!


--- In immunologysupport@yahoogroups.com, "lcaplinger" <ponton@...> wrote:
>
> Have you had an HSG to show your tubes are in fact blocked? You should get
your uterus and tubes tested for certain!!
>
> The only thing that I would think could clog your tubes would be the endo -
the other immune conditions wouldn't affect your potential to have another
ectopic. IVIG and LIT do NOT have anything to do with ectopic pregnancy. They
cannot prevent one.
>
> Ectopic pregnancy is nearly always a functional problem with the tubes (too
long, cilia damaged, blockages, too many fimbria at ends of tubes, scarring from
infection, etc). Endo can screw up the tubes and other things so I think getting
the underlying endo fixed is crucial. When the pathologist showed me the slides
of my tubes (destroyed by endo) she said it was the worst she'd ever seen. Text
book stuff. So endo can DEFINITELY harm your tubes and do serious damage.
>
> Some doctors feel endo is an immune condition, and there are some that think
that it's the body's response to infection. I suspect that following Dr. Toth's
protocol for infections could help with immune conditions that are related to
endo and other. I would see him (or a collegue) regarding this before doing much
else. Antibiotics are easy...surgery isn't.
>
> Just my two cents,
>
> Linda
>
> --- In immunologysupport@yahoogroups.com, "annaandbella" <annaandbella@>
wrote:
> >
> > I have experienced one ectopic pregnancy recently (have endo, am homozygous
MTHFR, plus 1:40 ANA, no blood issues with NKs but never tested uterus) ... do
you think this is because my uterus is hostile? I was taking 40mg lovenox daily,
10mg prednisone, folgard, aspirin ... in my country we can't do IVIG or LIT so
are there other alternatives to prevent another ectopic/failure?
> >
>

#97946 From: Lisa Hill-Pierce <grubcat@...>
Date: Wed Nov 11, 2009 9:12 pm
Subject: RE: dexamethasone... weight gain and hairy face (pg mentioned)
lisahillpierce
Offline Offline
Send Email Send Email
 
I have a stach, and side burns.   I don't have knuckle and back fur yet.  Two weeks until I wean so there is still time for it to sprout.
 
 
--- On Wed, 11/11/09, Ciara <ciara@...> wrote:

From: Ciara <ciara@...>
Subject: RE: [immunologysupport] dexamethasone... weight gain and hairy face (pg mentioned)
To: immunologysupport@yahoogroups.com
Date: Wednesday, November 11, 2009, 12:53 PM

 

It will go away.

 

From: immunologysupport@ yahoogroups. com [mailto:immunologys upport@yahoogrou ps.com] On Behalf Of erinnmicassidy@ yahoo.com
Sent: Wednesday, November 11, 2009 2:37 PM
To: immunologysupport@ yahoogroups. com
Subject: Re: [immunologysupport] dexamethasone. .. weight gain and hairy face (pg mentioned)

 

 

I just weaned off of Prednisone and was wondering about the hair and round face, too. My cheeks and back have a peach fuzz and I noticed more hair on my arms, too; plus the round face. Ugh. It'd be worth it if I got something out of it. We'll see if it goes away.
Sent from my BlackBerry® smartphone with SprintSpeed

From: "Ciara" <ciara@ciarastudio. com>

Date: Wed, 11 Nov 2009 14:02:40 -0600

To: <immunologysupport@ yahoogroups. com>

Subject: RE: [immunologysupport] dexamethasone. .. weight gain and hairy face (pg mentioned)

 

 

I was on Prednisone and grew hair on my knuckles big time.  And a small stache.  I had my knuckles waxed along with my arms for a summer vacation and it did not grow back after I stopped the prednisone.  Will wax the stache after pregnancy is over and am sure it will be fine then too.  .  My weight gain is another story and will see how that comes down after birth but my round face has gone since weaning of steroids.

 

From: immunologysupport@ yahoogroups. com [mailto:immunologys upport@yahoogrou ps.com] On Behalf Of Lisa Hill-Pierce
Sent: Wednesday, November 11, 2009 11:43 AM
To: immunologysupport@ yahoogroups. com
Subject: [immunologysupport] dexamethasone. .. weight gain and hairy face (pg mentioned)

 

 

I've been on Dex since June- and I'm currently 10 weeks pregnant (after 3 years and many  losses).  I've gained 15 lbs, and the hair on my face blows in the wind as side effects from dex.  None of this weight is baby- that is yet to come.  In addition I have rosacea which will flare terribly when I wean off the dex- but that is a different story.  Please give me some stories to comfort me about the dex.  Will this hair on my face stop growing?  Will the weight come off?  How long will my rosacea flare when I go off the dex?  How long did it take you to come off the dex if you were on it for a long time? 


#97945 From: "Ciara" <ciara@...>
Date: Wed Nov 11, 2009 8:53 pm
Subject: RE: dexamethasone... weight gain and hairy face (pg mentioned)
ciaracrews
Offline Offline
Send Email Send Email
 

It will go away.

 

From: immunologysupport@yahoogroups.com [mailto:immunologysupport@yahoogroups.com] On Behalf Of erinnmicassidy@...
Sent: Wednesday, November 11, 2009 2:37 PM
To: immunologysupport@yahoogroups.com
Subject: Re: [immunologysupport] dexamethasone... weight gain and hairy face (pg mentioned)

 

 

I just weaned off of Prednisone and was wondering about the hair and round face, too. My cheeks and back have a peach fuzz and I noticed more hair on my arms, too; plus the round face. Ugh. It'd be worth it if I got something out of it. We'll see if it goes away.

Sent from my BlackBerry® smartphone with SprintSpeed


From: "Ciara" <ciara@...>

Date: Wed, 11 Nov 2009 14:02:40 -0600

To: <immunologysupport@yahoogroups.com>

Subject: RE: [immunologysupport] dexamethasone... weight gain and hairy face (pg mentioned)

 

 

I was on Prednisone and grew hair on my knuckles big time.  And a small stache.  I had my knuckles waxed along with my arms for a summer vacation and it did not grow back after I stopped the prednisone.  Will wax the stache after pregnancy is over and am sure it will be fine then too.  .  My weight gain is another story and will see how that comes down after birth but my round face has gone since weaning of steroids.

 

From: immunologysupport@yahoogroups.com [mailto:immunologysupport@yahoogroups.com] On Behalf Of Lisa Hill-Pierce
Sent: Wednesday, November 11, 2009 11:43 AM
To: immunologysupport@yahoogroups.com
Subject: [immunologysupport] dexamethasone... weight gain and hairy face (pg mentioned)

 

 

I've been on Dex since June- and I'm currently 10 weeks pregnant (after 3 years and many  losses).  I've gained 15 lbs, and the hair on my face blows in the wind as side effects from dex.  None of this weight is baby- that is yet to come.  In addition I have rosacea which will flare terribly when I wean off the dex- but that is a different story.  Please give me some stories to comfort me about the dex.  Will this hair on my face stop growing?  Will the weight come off?  How long will my rosacea flare when I go off the dex?  How long did it take you to come off the dex if you were on it for a long time? 


#97944 From: erinnmicassidy@...
Date: Wed Nov 11, 2009 8:36 pm
Subject: Re: dexamethasone... weight gain and hairy face (pg mentioned)
ecs877
Offline Offline
Send Email Send Email
 
I just weaned off of Prednisone and was wondering about the hair and round face, too. My cheeks and back have a peach fuzz and I noticed more hair on my arms, too; plus the round face. Ugh. It'd be worth it if I got something out of it. We'll see if it goes away.

Sent from my BlackBerry smartphone with SprintSpeed


From: "Ciara" <ciara@...>
Date: Wed, 11 Nov 2009 14:02:40 -0600
To: <immunologysupport@yahoogroups.com>
Subject: RE: [immunologysupport] dexamethasone... weight gain and hairy face (pg mentioned)

 

I was on Prednisone and grew hair on my knuckles big time.  And a small stache.  I had my knuckles waxed along with my arms for a summer vacation and it did not grow back after I stopped the prednisone.  Will wax the stache after pregnancy is over and am sure it will be fine then too.  .  My weight gain is another story and will see how that comes down after birth but my round face has gone since weaning of steroids.

 

From: immunologysupport@yahoogroups.com [mailto:immunologysupport@yahoogroups.com] On Behalf Of Lisa Hill-Pierce
Sent: Wednesday, November 11, 2009 11:43 AM
To: immunologysupport@yahoogroups.com
Subject: [immunologysupport] dexamethasone... weight gain and hairy face (pg mentioned)

 

 

I've been on Dex since June- and I'm currently 10 weeks pregnant (after 3 years and many  losses).  I've gained 15 lbs, and the hair on my face blows in the wind as side effects from dex.  None of this weight is baby- that is yet to come.  In addition I have rosacea which will flare terribly when I wean off the dex- but that is a different story.  Please give me some stories to comfort me about the dex.  Will this hair on my face stop growing?  Will the weight come off?  How long will my rosacea flare when I go off the dex?  How long did it take you to come off the dex if you were on it for a long time? 


#97943 From: "Ciara" <ciara@...>
Date: Wed Nov 11, 2009 8:02 pm
Subject: RE: dexamethasone... weight gain and hairy face (pg mentioned)
ciaracrews
Offline Offline
Send Email Send Email
 

I was on Prednisone and grew hair on my knuckles big time.  And a small stache.  I had my knuckles waxed along with my arms for a summer vacation and it did not grow back after I stopped the prednisone.  Will wax the stache after pregnancy is over and am sure it will be fine then too.  .  My weight gain is another story and will see how that comes down after birth but my round face has gone since weaning of steroids.

 

From: immunologysupport@yahoogroups.com [mailto:immunologysupport@yahoogroups.com] On Behalf Of Lisa Hill-Pierce
Sent: Wednesday, November 11, 2009 11:43 AM
To: immunologysupport@yahoogroups.com
Subject: [immunologysupport] dexamethasone... weight gain and hairy face (pg mentioned)

 

 

I've been on Dex since June- and I'm currently 10 weeks pregnant (after 3 years and many  losses).  I've gained 15 lbs, and the hair on my face blows in the wind as side effects from dex.  None of this weight is baby- that is yet to come.  In addition I have rosacea which will flare terribly when I wean off the dex- but that is a different story.  Please give me some stories to comfort me about the dex.  Will this hair on my face stop growing?  Will the weight come off?  How long will my rosacea flare when I go off the dex?  How long did it take you to come off the dex if you were on it for a long time? 


#97942 From: "Ciara" <ciara@...>
Date: Wed Nov 11, 2009 7:59 pm
Subject: RE: Re:Has anyone been induced
ciaracrews
Offline Offline
Send Email Send Email
 

Yes thank you.  I am considering the switch to Heperin but I really want to avoid Petocin.  Had it with my DS and I think it messed with my natural progression.

 

 

From: immunologysupport@yahoogroups.com [mailto:immunologysupport@yahoogroups.com] On Behalf Of Swpea24
Sent: Wednesday, November 11, 2009 10:17 AM
To: immunologysupport@yahoogroups.com
Subject: [immunologysupport] Re:Has anyone been induced

 

 

I was told that you can be switched to heparin at a certain point as
there is an antidote to it. Can you ask for that? I went into labor
spontaneously at 34 weeks and was given petocin to speed up the labor
process had I not been on an epidural it would have hurt a lot! You
have to do what feels most comfortable for you so talk to your doctors
about what you want/need.
Sent from my iPhone


#97941 From: "sfsfk" <samkauffman@...>
Date: Wed Nov 11, 2009 7:30 pm
Subject: Re: Humira -- would like to donate to someone in the SF Bay area
sfsfk
Offline Offline
Send Email Send Email
 
--- In immunologysupport@yahoogroups.com, "marjorie815"
we're also paying out of pocket and would happily pay shipping.. we've tried 5
inject cycles.. and are probably be attempting our last soon...
thanks,
Sami


<mattiemol@...> wrote:
>
> Hi Donna, I'm fairly new to this group and haven't posted much, so you've
likely not heard of me yet.  I do have some leftover Menopur and Follistim. 
It's not a full cycle's worth, but I'd be happy to donate what I have if you'll
pay for shipping.  I'm from Houston.  Please contact me at my e-mail.
>
> Marjorie
>
> --- In immunologysupport@yahoogroups.com, Donna Malakoff <dam8867@> wrote:
> >
> > Hi,
> >
> > I have one unopened 40mg/.8ml syringe of Humira which I would love to donate
to someone who is paying out of pocket for their medications.  The expiration
date is April 2010 and it has been refrigerated the entire time I’ve had it.
> >
> > We are all out of pocket as well, and will be cycling again in December.  If
anyone has any left over Menopur or Follistim they would like to get off their
hands, I’d like to put my hat in for them.
> >
> > Best wishes!
> >
>

#97940 From: Lisa Hill-Pierce <grubcat@...>
Date: Wed Nov 11, 2009 5:43 pm
Subject: dexamethasone... weight gain and hairy face (pg mentioned)
lisahillpierce
Offline Offline
Send Email Send Email
 
I've been on Dex since June- and I'm currently 10 weeks pregnant (after 3 years and many  losses).  I've gained 15 lbs, and the hair on my face blows in the wind as side effects from dex.  None of this weight is baby- that is yet to come.  In addition I have rosacea which will flare terribly when I wean off the dex- but that is a different story.  Please give me some stories to comfort me about the dex.  Will this hair on my face stop growing?  Will the weight come off?  How long will my rosacea flare when I go off the dex?  How long did it take you to come off the dex if you were on it for a long time? 

#97939 From: Mandy Cairns <manders41@...>
Date: Wed Nov 11, 2009 5:26 pm
Subject: Re: Natural conception
manders41
Offline Offline
Send Email Send Email
 
Hi, it has taken us between 1-9 mths previously to conceive the 6 times. We're now on mth 6 and no success after immune treatment. Due to my age our RI has suggested IVF. We are however trying some things before taking that step. This is the first mth I've tried taking steroids pre concep, started CD 6. I wonder if perhaps you could try steroids earlier? Sure Dr Kwak has her reasons for waiting to after ov tho. Can't think of anything else apart from gluten free to reduce inflammation...having said that tho I've not conceived since starting the GF diet but know other people who have.
 
Sorry don't have more advice than that. GL.
 
X+x
42, 1 DS aged 6
5 m/cs, 4 yrs ttc #2
Slightly pos APS, low Free T4, borderline ANAs, CD19+/CD5+ cells 15%, Th1/Th2 ratio 61 (reduced to 33 after 4 doses pre-concep Humira), Neg LAD

Currently on :
Menevit, calcium + vit D, 1/4 aspirin after ov, Royal Jelly, trying 5 mg steroids this mth
 
Protocol :
Pre-concep - Humira 40mg x 4 before ttc and re-test levels then BA (might try it post ov tho), steroids 5 mg (might not do pre-concep as other treatment sufficient), calcium, LIT done 3 July.
 

At + test - stop BA (but might not do that!), intralipids, steroids 20 mg (weaning off at 12 wks), heparin 20 mg once per day (test APS at 12 wks), Ultrogestan pessaries 400mg till 12 wks
 
Acupuncture, herbs, kinesiology, gluten free and looking into HypnoFertility 



--- On Wed, 11/11/09, dustipalecek <dustipalecek@...> wrote:

From: dustipalecek <dustipalecek@...>
Subject: [immunologysupport] Natural conception
To: immunologysupport@yahoogroups.com
Date: Wednesday, 11 November, 2009, 16:20

 
Could those of you who conceived naturally tell me how long it took you to get pregnant? I'm stressing that my immune problems have ruined my chances to conceive naturally.

Also, has anyone out there had results like mine and had success? Here's what I tested positive for. I'm a patient of Dr. Kwak.

positive ANA(1:80)
positive APA
hetero for MTHFR (C677T)
hetero PAI-1
normal CD19+ B cell levels with elevated CD5+B-1 cells (mine are 13.3)

Treatment protocol:
- 40 mg Lovenox 1x day, start on CD 6 (increase to 2x day at BFP)
- Endometrin 3x day, 48 hours after ovulation
- 10 mg a day prednisone 48 hours after ovulation (increase to 20 mg with BFP)
- baby aspirin
- vitamin E
- Metanx
- Calcium + vitamin D
- Metformin
- prenatals
- Low carb diet

I'm worried about it not being enough as we can't afford IVIG. Any thoughts, advice, etc. would be greatly appreciated!



#97938 From: "dustipalecek" <dustipalecek@...>
Date: Wed Nov 11, 2009 4:20 pm
Subject: Natural conception
dustipalecek
Offline Offline
Send Email Send Email
 
Could those of you who conceived naturally tell me how long it took you to get
pregnant?  I'm stressing that my immune problems have ruined my chances to
conceive naturally.

Also, has anyone out there had results like mine and had success?  Here's what I
tested positive for.  I'm a patient of Dr. Kwak.

positive ANA(1:80)
positive APA
hetero for MTHFR (C677T)
hetero PAI-1
normal CD19+ B cell levels with elevated CD5+B-1 cells (mine are 13.3)

Treatment protocol:
- 40 mg Lovenox 1x day, start on CD 6 (increase to 2x day at BFP)
- Endometrin 3x day, 48 hours after ovulation
- 10 mg a day prednisone 48 hours after ovulation (increase to 20 mg with BFP)
- baby aspirin
- vitamin E
- Metanx
- Calcium + vitamin D
- Metformin
- prenatals
- Low carb diet

I'm worried about it not being enough as we can't afford IVIG.  Any thoughts,
advice, etc. would be greatly appreciated!

#97937 From: "mermaid4ya" <mermaid4ya@...>
Date: Wed Nov 11, 2009 4:18 pm
Subject: Re: Please help!
mermaid4ya
Offline Offline
Send Email Send Email
 
I have 40grams IVIG--expires Jan. 23, 2010...email me if interested. 
mermaid4ya@...

--- In immunologysupport@yahoogroups.com, "lcaplinger" <ponton@...> wrote:
>
>
> Julia might have some that she's selling for a discount..at least she did a
few months ago.
>
> Have you considered intralipids? I know the jury's still out on their use but
it would be worth trying if nothing else comes up.
>
> Linda
>
> --- In immunologysupport@yahoogroups.com, "swpea24" <swpea24@> wrote:
> >
> > Hi everyone - I am sending this out once again as after talking with DH
again we so cannot afford to spend more money on IVIG as we are already paying
for our 8th IVF end of month and are tapped out.  Does anyone have or know of
someone who has extra IVIG????  You would be doing a huge good deed and I would
be forever grateful.  Thanks in advance for your help!!
> >
> >
> > --- In immunologysupport@yahoogroups.com, "swpea24" <swpea24@> wrote:
> >
> > My insurance company will not cover and and I am stressing!  I already have
to pay for another ivf after paying out of pocket over $60.0.  If anyone can
share with me I would be forever grateful!
> >
> > Thanks everyone!
> >
> > --- End forwarded message ---
> >
>

#97936 From: Swpea24 <swpea24@...>
Date: Wed Nov 11, 2009 4:17 pm
Subject: Re:Has anyone been induced
swpea24
Offline Offline
Send Email Send Email
 
I was told that you can be switched to heparin at a certain point as
there is an antidote to it.  Can you ask for that?  I went into labor
spontaneously at 34 weeks and was given petocin to speed up the labor
process had I not been on an epidural it would have hurt a lot!  You
have to do what feels most comfortable for you so talk to your doctors
about what you want/need.
Sent from my iPhone

#97935 From: Swpea24 <swpea24@...>
Date: Wed Nov 11, 2009 4:10 pm
Subject: Re: What does ivig look like?
swpea24
Offline Offline
Send Email Send Email
 
Thanks for the help!

Sent from my iPhone

#97934 From: Tracey Mercier <t_are70@...>
Date: Wed Nov 11, 2009 3:46 pm
Subject: Re: At last - my Beer Baby is here! (long post)
t_are70
Offline Offline
Send Email Send Email
 
Congratulations Jean! You are an inspiration to us all. Savor every moment with Julia.
 
Take care,
Tracey


From: jinaprivate <sharksaddict@...>
To: immunologysupport@yahoogroups.com
Sent: Mon, November 9, 2009 1:22:44 PM
Subject: [immunologysupport] At last - my Beer Baby is here! (long post)

 


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


#97933 From: "lcaplinger" <ponton@...>
Date: Wed Nov 11, 2009 3:41 pm
Subject: Re: Is Ectopic Pregnancy related to Immune issues? How to treat w/o IVIG or LIT?
lcaplinger
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Have you had an HSG to show your tubes are in fact blocked? You should get your
uterus and tubes tested for certain!!

The only thing that I would think could clog your tubes would be the endo - the
other immune conditions wouldn't affect your potential to have another ectopic.
IVIG and LIT do NOT have anything to do with ectopic pregnancy. They cannot
prevent one.

Ectopic pregnancy is nearly always a functional problem with the tubes (too
long, cilia damaged, blockages, too many fimbria at ends of tubes, scarring from
infection, etc). Endo can screw up the tubes and other things so I think getting
the underlying endo fixed is crucial. When the pathologist showed me the slides
of my tubes (destroyed by endo) she said it was the worst she'd ever seen. Text
book stuff. So endo can DEFINITELY harm your tubes and do serious damage.

Some doctors feel endo is an immune condition, and there are some that think
that it's the body's response to infection. I suspect that following Dr. Toth's
protocol for infections could help with immune conditions that are related to
endo and other. I would see him (or a collegue) regarding this before doing much
else. Antibiotics are easy...surgery isn't.

Just my two cents,

Linda

--- In immunologysupport@yahoogroups.com, "annaandbella" <annaandbella@...>
wrote:
>
> I have experienced one ectopic pregnancy recently (have endo, am homozygous
MTHFR, plus 1:40 ANA, no blood issues with NKs but never tested uterus) ... do
you think this is because my uterus is hostile? I was taking 40mg lovenox daily,
10mg prednisone, folgard, aspirin ... in my country we can't do IVIG or LIT so
are there other alternatives to prevent another ectopic/failure?
>

#97932 From: Mandy Cairns <manders41@...>
Date: Wed Nov 11, 2009 9:50 am
Subject: Re: New here, just diagnosed with MTHFR and lupus anticoagulant
manders41
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Hi Katina, sure you will get some replies but just to let you know there are specific yahoo grps for these issues too. MTHFR grp and Hughes Syndrome covers LA.
 
X+x
42, 1 DS aged 6
5 m/cs, 4 yrs ttc #2
Slightly pos APS, low Free T4, borderline ANAs, CD19+/CD5+ cells 15%, Th1/Th2 ratio 61 (reduced to 33 after 4 doses pre-concep Humira), Neg LAD

Currently on :
Menevit, calcium + vit D, 1/4 aspirin after ov, Royal Jelly, trying 5 mg steroids this mth
 
Protocol :
Pre-concep - Humira 40mg x 4 before ttc and re-test levels then BA (might try it post ov tho), steroids 5 mg (might not do pre-concep as other treatment sufficient), calcium, LIT done 3 July.
 

At + test - stop BA (but might not do that!), intralipids, steroids 20 mg (weaning off at 12 wks), heparin 20 mg once per day (test APS at 12 wks), Ultrogestan pessaries 400mg till 12 wks
 
Acupuncture, herbs, kinesiology, gluten free and looking into HypnoFertility 



--- On Tue, 10/11/09, natesmommy12600 <natesmommy@...> wrote:

From: natesmommy12600 <natesmommy@...>
Subject: [immunologysupport] New here, just diagnosed with MTHFR and lupus anticoagulant
To: immunologysupport@yahoogroups.com
Date: Tuesday, 10 November, 2009, 21:00

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



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