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Tuesday, May 23, 2006

Is there light at the end of this hell?

My tests form DB's came in today with the exception of the DQ-alpha, which will take another week. Everything came back normal with one exception.

My LAD (leukocyte antibody detection) came in at 3%.

It should be 30%.

The rundown:
C said 3% is considered "very low" and explained that my body is killing off the embryos before they have a chance to implant...or...it's killing them off right after implantation. My body isn't making any blocking antibodies to protect the embryos from my immune system.

The treatment:
A trip to Nogales Mexico for LIT (leukocyte immunization therapy). This means they will take 10 to 12 vials of J's blood, spin it down a few times to isolate just the leukocytes, which will then be injected into my body. A vaccination against J, if you will.

And now for my personal reaction to this?

Bloody hell!!

Why didn't Dr. Moustache test me for this? I really don't get it. How did I get these tests done? Honestly....I actualy stole off with a labslip of my own, filled it out myself, and took it to DB's where they did the blood tests for me. Then I told Dr. Moustache that I wanted these tests done and would have the results forwarded to him. He was agreeable at this point and didn't question how I got them done. If I hadn't done this, how many more IVFs would we have gone through until we gave up?

I have been petrified to do the FET. I knew if they put those last six embryos into me they would die. This confirms it. Talk about gut feelings being right on target. I've also felt pretty sure I had symptoms of being pregnant each time, uterine cramping, swollen breasts, but they were very very fleeting.

I've cried and screamed all day. I am angry. I feel so let down. I've lost 12 potential beings to carelessness. And in there was probably one or two that would have made it if only we knew. My heart is aching over this. I feel we've been pushed to near financial jeopardy by a medical system and, in our case, a physician that just doesn't do everything that he can in his patients' best interest.

In my typical, "Screw this shit, I'll fix it myself!" attitude, I've already called Mexico, researched airfare, hotels, and figured I'll probably have to doctor up our labwork if we want to do our first LIT treatment on June 2nd.

There is a shred of light in my head that says, "We've found it". The problem to our infertility woes, that is. I just hope this is the last one.

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Comments on "Is there light at the end of this hell?"

 

Blogger Donna said ... (6:42 PM) : 

Bloody hell is right. Why in hell does one have to go to Mexico to get this treatment? Do our doctors not believe in it, or does the FDA not sanction it? Just curious. At least you now have an answer, I hope you can take whatever steps are necessary to get to the end of this tunnel with a baby in your arms.

 

Blogger Thalia said ... (8:46 AM) : 

What a thing to find out now. Have you read up about it on pubmed? I've never heard of it before. Hoping that this holds the key for you.

 

Blogger Millie said ... (10:17 AM) : 

I have a friend in the city who did the LIT therapy a year or two ago. Lemme know if you wanna talk to her (she's also on the Dr Beers's boards).

It totally stinks that you had to do all this yourself. I hope this is the key and you'll have much success after a brief stint in Mexico.

 

Blogger DD said ... (12:53 PM) : 

I don't think REs get the connection between unexplained IF and unknown immunity issues. They think its cost prohibitive to test for it. Frankly, I'd rather spend a couple grand up front and know that everything is or isn't doing what it's supposed to do rather than spend 20-30K. Maybe it's b/c they don't get the money?

Either way, I'm sorry you a low LAD, but I'm glad that you are pursuing the LIT avenue. Good luck.

 

Blogger tonya said ... (9:42 PM) : 

We went twice for LIT, and I'm happy to share my experiences with it. I'll email you too. Let's chat more. :)

 

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elevated NKs
NKUs
3 +APAs (2 borderline)
heterozygous MTHFR A1298C
Slightly low thyroid.

dq-α:
me: 1.1, 4.1
dh: 1.2, 3.1 we parted

Low LADs were treated in Mexico and elsewhere with LIT
Anti-sperm antibodies
Article: LIT and the FDA

No: ANAs, normal TH1/TH2 Cytokine ratio, or x-DNA/Histones.

SMA Carrier

IF Treatments:
-Clomid #1: Sep 2005
-Clomid #2: Sep 2005
-HSG (tubes barely open): Oct 2005
-Lap/Chromo (cyst removed; tubes clogged): Oct 2005
-Nat'l IUI: Nov 2005
-IVF #1: Jan 2006, β1=2.0, β2=0.9
-IVF #2: May 2006, β1=<1.0
-Myomectomy (5), salpingectomy (both), & endo removed via lap on 6.6.6
-LIT#1 in Nogales: Jun 2006
-LIT#2: Jul 2006
-FET #1: Sep 2006, β1=2.48, β2=<2.0
-Dr. Hungarian Dx Oct 2006
-Dr. Hungarian Tx Dec 2006-Mar 2007
-IVF#3: Mar 2007 Canceled myself right before retrieval
-IVF#3 Take 2: Apr/May 2007 Canceled due to dominant follicle
-IVF#3 Take 3: Aug 2007, β1<2.0
-IVF#4: Mar 2009 - Canceled due to my flipping out over donor sperm
- Hysteroscopy - Jul 2009 -IVF#4 Take 2: Jul 2009 - Canceled due to fibroid found during hysteroscopy - Myomectomy: Jul 2009
-IVF#4 Take 3: Aug 2009 - Canceled due to ovarian cyst
-IVF #4 Take 4: Oct 2009 - Antagon Cycle β1<1.0
- HSG, Cyst Aspiration on Left Ovary, Sclerotherapy on Endometrioma on Right Ovary: 29 Oct 09
-IVF #5: Nov-Dec 2009 - Adding in HGH one way or another

Pre-ET
Feng Shui'd the House
500mg Zithromax starting with stims
4 LIT Treatments
17 Weeks of Humira or Enbrel
30g IVIg CD5 of IVF cycle (day 2 or 3 of stims)
30g IVIg 2 days before transfer
1mg Dexamethazone starting with stims
40mg Lovenox, 1X's/Day, 2X's a day if BFP
0.0375mg Synthroid
Lexapro
Prenatal
Folguard 2.2Methyl folate
Extra 1g C (Stop at ET)
Extra 1g Calcium
Extra 400mg E (Stop at ET)
Nettle Tea & Capsules
2g Bromelain
Extra D3
Keep BMI<24
4-6g Fish Oil/Day
Baby Aspirin
Eating Loads of Protein!
Nettle Caplets
Femoral Massage (Stop at ET)
Acupuncture (Stop at ET)
TCM Diet: No cold or slippery foods
Immune Friendly Diet: No non-sprouted wheat, sugar, starches. Little fruit.
No nightshades
No caffeine
No coffee, not even decaf
No soy when in cycle
10 days Doxycycline

Day of Transfer
Light activity

Post ET Changes
Visualization
200mg progesterone capsules
Take it easy days 2&3
No sex til beta#1
Cut out egg yolks (contains immunogenic acid)

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