3 States, 2 Countries, 1 Day:
Our LIT Journey
LIT stands for "Leukocyte Immunization Treatment", and is a treatment that was available in the U.S. for the last 20 or 30 years, until about 4 years ago, until under the current fucked-up administration, the FDA decided to ban it. LIT is done in response to a low LAD test (leukocyte antibody detection). If your LADs are low, then your body doesn't make enough blocking antibodies to protect an embryo, and you have a mini miscarriage that usually goes undetected. The test can be done at Rosalind Franklin University through any doctor's office, but as you see, the treatment isn't available in this country. In fact, the FDA says that your doctor can't even tell you about LIT. But that's not going to stop me from telling you.
The treatment involves taking 50 to 100cc of blood from the father or a donor (which depends on another test called a DQ-alpha), separating out the white blood cells (for B and T cells), washing them 2 or 3 times, and injecting them back into the female. 100cc of RBCs are reduced to about 100ml of WBCs. Two insulin syringes full. An immunization, if you will. It is highly successful if done correctly. But now us infertiles must all travel to the bordertown of Nogales, Mexico, to Dr. German Quiroga, for treatment. How fucked up is that?
My LADs were at 2.9% prior to LIT. Anything under 30% warrants the use of LIT. After two double-dose treatments my LADs should be somewhere above 90%.
This is our LIT experience and was written over the last few days.
Dr. Alan Beer's response to the Lancet Publishing a flawed study on LIT that was the crux of why the FDA banned LIT.
====================================================================
Our whirlwind trip to Nogales for LIT treatment begins at 4:30am, Friday morning. I am already awake as I always sleep lightly before a trip that commences in the morning. I've always been that way. I don't think it's the excitement of a trip more than it is my paranoia about oversleeping and missing my plane.
We're out the door by 5:15am, and in the air by 6:30am. We are not seated next to each other, J is in a row in front of me next to the window. I always prefer aisle seats so I can get up without having to bother the person at the end. J prefers window seats as he gets motion sickness. He needs to be able to focus on the horizon to avoid barfing. This time I am seated next to a cute little girl from Los Gatos who is going to see her dad and his new wife, and baby, in Virginia. She is terrified of flying, on the verge of tears, and I do my best to ease her worries. I tell her it's like riding a rollercoaster. "That part where the rollercoaster goes down real fast? Well, it's like that except that you're going UP." "That was fun!", she says once we're airborn, with a big grin on her face, so I guess I did a good job. She asks me every question a little girl can think of, and then sleeps the rest of the way to Salt Lake City.
Once in Salt Lake City, we walk as far as I can to the next gate. It is just too much for me with the 5-inch incision aching like mad. I'd reserved a wheelchair at each gate, just in case, and we ignored the first one because the counter lady said, "Oh, your gate is just around the corner."
Around the counter, my ass.
We grab a chair and after about 10 more minutes of wheeling me around, we finally get to our plane. A tiny 50 seater, but at least we get to sit next to each other. Highlight of this flight, en route to Tucson, was seeing the eastern most portion of the Grand Canyon out to the right side of the plane. Damn it's huge. As an old friend once wrote to me on the back of a Grand Canyon postcard, "Kinda makes you want to spit." I wonder about the little girl on the first leg of the trip. Hopefully her flight is going well.
Arriving in Tucson, we walk, yes walk (ouch) to the car rental palace, grab our car and head south to the border. It's about a 59 mile drive and there's little of anything to do between Tucson and Nogales. Desert and more desert. We pass a mission, a mine, and the exit to the famous Rio Rico Resort, where all of the infertiles being treated for LIT say to go, but we couldn't see much from the road. Their website looks pretty nice...perhaps we'll stay there on the return trip.
We arrive early in Nogales. It is exactly what one expects from a border town. We can see the houses on the other side of the barrier. It doesn't even look like there are roads between the houses on the hill. In America it is prestigious to live in the hills, with the views, but in other countries, Brazil, and perhaps Mexico, the poor live in the hills where there are few amenities of modern living. It's a bit of culture shock for J, who has never really experienced anything like this.
We find the McDonald's, which we think is the right one. We know we are early and we sit and wait. I tell J that since we're SO early, maybe we should go and find his office on our own. He says he doesn't think it's a good idea, but I suspect he's not thrilled about venturing across the border. What he can see so far of Mexico doesn't sit too well with him.
I try to call my connection in Mexico, Jossie, but I can't seem to get through. After about an hour, the doctor is now late, and I realize I've been missing a number in Jossie's telephone number. I get ahold of her and she assures me that someone is on their way to fetch me. I hang up the phone and a few seconds later, a girl in a pink shirt miraculously shows up to take us across the border to see the doctor.
She doesn't speak English. She asked if I speak Spanish and I tell her, "A little". I kid her, "Parlez-vous Francais?" She laughs and says, "No". Unfortunately my French is better than my Spanish anymore. Whenever I try to speak Spanish, French comes out. Their words are too similar and it's confusing. It's a quiet walk to the office since we can't communicate effectively. I make a mental note to grab a conversational Spanish book before our next trip.
When we arrive I realize it's a good thing we didn't try to find the office on our own: Dr. Quiroga has changed his location and is in a new building with his brother who is a dentist. It says "Laser Dental" on the sign, and Dr. Quiroga's name is there, too. We've definitely found him. Relief. He does exist. It's 2:00pm, we're half an hour late for our 1:30pm appointment, but we've made it.
There are no elevators in this part of Mexico. We walk up three small flights of very slippery tile stairs. My incision is aching. J slips on the tile at the top and nearly falls. Visions of J in a Mexican hospital snap me to attention and I urge him to be more careful. Dr. Quiroga's office is the first door on the left. They have the A/C blaring and a huge chilled water dispenser. I quickly wonder if it's really bottled water and decide to pass on it.
It's a decent enough office, and I can see the doctor in his private office. The nurse leads us into his office and introductions are made. The nurse ushers J to a backroom to take his blood, 10 vials in all, 100cc, and Dr. Quiroga and I chat a bit. I ask him how it is that he has blue eyes. I inquire, "Are you Spanish or Navajo". "German and Spanish", he replies. He tells me about his parents who are German and Spanish, that he still has an uncle in Germany. He is friendly and very easy to talk to. I am stunned to find that he speaks English, Spanish, French, and a bit of Italian. Amazing. J is back and we are told to come back at 3:50pm. I asked Dr. Quiroga where we could get a bite, mention the place my fellow LIT infertiles have gone, El Hacienda de la Caballo Rojo. He says it's good but that his assistant in the pink shirt can take us someplace else. I don't want to bother her with that and, frankly, I'm wary of venturing much deeper into Nogales. She escorts us to the corner nearest to the Caballo Rojo and leaves us there.
The restaurant is pretty Americanized, nice and cool inside. I zipped to the bathroom and noticed there were no sinks. I was a bit distressed. But on exiting find they are out in the open, inside the restaurant. That was a bit odd. I wash my hands, then suddenly realize how silly it is to be washing my hands in water that I wouldn't even drink, especially before eating. So like a paranoid American girl, I whip out my antibacterial wipes and douse both J and I from elbow to fingertips.
Chicken tacos arrive covered in lettuce and tomatoes, and I reflect on a prior trip to Baja where, by the time we had gotten to the border checkpoint, I didn't know which end I'd be putting on the toilet. A severe case of "Montezuma's Revenge". I quickly fork the vegetables onto another plate. Raw vegetables washed in the local water can be totally hazardous to one's GI tract.
J eats his chile rellenos washed down with a Tecate. The bill is a whopping $12 USD + tip. Definitely a restaurant set out to get the "rich and stupid Americans". No deal there. We should have taken up Dr. Quiroga's suggestion - it would have been cheaper and probably better. Lest you think that we're cheap, let me tell you this. We have had two distinct, and memorable, heart attacks over restaurant bills in the six years that we've been together: once at Manka's in Inverness, and once at Manresa in Los Gatos. But each of those bills were on par with the French Laundry in terms of quality and price. So why gripe about a $12 lunch bill? Because in Mexico you can get tacos 3 for $1 on roadside stands. They see you coming. The silly American with rolls of bills in his pocket.
Good thing I remembered to take off all of my gold jewelry before boarding the plane. Gold and diamonds only makes it worse.
Lunch down, we head to the pottery shop next door. The shop owner notices I am moving a bit slow and asks how I am feeling. I am honest. I tell him I am in pain. Big mistake. He hails a young local man from outside.
Pottery Shop Owner: "He can get you anything you need."
Me: "But I'll be fine. I am headed to the pharmacy next."
Young Man: "What do you need?"
Me: "Percoset. But I'm going to the pharmacy." I am regretting ever mentioning how I feel at this point.
Young Man: "I can get that for you. I'll be right back."
Then the Pottery Shop Owner shows me a few pots. There is one neat one that interests me, but he tells me it is $225 and that it's made by someone famous. I have my doubts. I also don't want to carry a bit pot on the plane. J suggests that we buy a smaller one. I am feeling like I just don't want to buy anything from this shop. I pull him out of the shop and towards the pharmacy. The shop owner looks sullen, but hell, it's his fault for hailing that young freak to buy our drugs for us. (Mental note: Never EVER mention that you're going to a pharmacy in Mexico).
I buy my mom a huge tube of Retin A and then inquire about the Percoset. The pharmacist tells me that he can't do it without a prescription. A Mexican prescription will cost me $25. So basically I can buy what I want if I'm willing to fork over more money. Bastards. I tell him, "No, just the Retin A, thanks." We leave and head towards the adjacent shops. The young man from the pottery shop has followed us.
Young Man: "Hey, did you get what you need?"
Me: "Yes, I did. We're fine. Thank you."
We duck into a shop trying to lose him. Lots of cheap knick knacks. Nothing worth carrying on a plane.
We step outside. The young man is still there.
I tell him we have an appointment, thanks for trying to help us, but we really have to go now.
3:50pm and we're back in time for my injections. The nurse brings out two small insulin-like needles. Dr. Quiroga says to J, "These are your white blood cells". The nurse takes out a tupperware container filled with alcohol soaked cotton balls. She literally scrubs my forearms with alcohol. Into each forearm she places 4 injections in a square pattern. The needle slides in deeper than as for a TB test, where you usually get a bubble. These are much deeper. I immediately see the injection sites turn red.
Dr. Quiroga says, "This is the first reaction. The redness. This will go away. Then you may get bubbles tomorrow. And itching. Eventually it may bruise."
The injections sting. We chat a bit with Dr. Quiroga about his house further south in Mexico, his office in Ciudad Obregon, and his wife's ordeals with infertility and how two of his children were born through LIT. I mention to him that we had been at a picnic the previous Sunday. A memorial picnic for Dr. Beer. His eyes get big. He wonders why he wasn't been told of this. He is even more intrigued when I tell him that many of his patients were all there, with their babies. I ask him, "Would you have come if you were invited?" He knods his head. I really sad for him - I know the person that organized the picnic. She's clearly a fan of Dr. T, but I can't quite gauge if she's much of a fan of the late Dr Beer. This picnic was for Dr. Beer, but Dr. Quiroga was right in there with him, helping many of these people that I met, and I am sure that they would have loved for him to have been there. He also didn't realize that Dr. Beer's book, was something he could order online. In fact, I am not even sure if he KNEW that Dr. Beer had written a book. I have the distinct feeling that Dr. Quiroga has been sort of kept in the dark about things. It's really too bad, as he's such an amiable man and he's helped so many.
We put our $600 on the table, take our receipt, say our good-byes, and leave. The girl in the pink shirt walks us to the border. I ask her if she lives in Arizona, because she doesn't need to stick around with us in the line. She could just return to the office. She says, "No. Shopping", and she disappears into the crowd on the Arizona side. We muse that perhaps she likes walking patients to the border so that she can go shopping and get out of the office. We hop into our car, let the A/C run for a bit to blow out the hot air, and leave. The old Mexican lady who manned the parking lot waves good bye to us like we are old friends.
The drive back is quick and by 6:00pm we are standing in line at the America West counter. Okay, I am not really standing. I am in a wheelchair. From Tucson, we fly to Phoenix...a nice girl pushes me nearly to the next gate. Literlly half a mile away. I tip her generously. There is no way in hell I could have walked that far. I am in agonizing pain by now and I have started to bleed. I am not sure if my AF has arrived or if I have done some sort of damage walking up that set of stairs, not once but twice. I am worried, but what can I do? The doctor who did my surgery thinks I've already had my period...but I hope that she is wrong. I hope that this is AF.
We eat dinner quickly and then rush to the gate - they are already boarding.
On the way home, we are seated next to an overly chatty fellow, but in time he realizes we were both running on fumes and he puts his earphones on (thank god) and then we both fell asleep in our seats.
I notice it is 11:28pm as we drove off, headed for home. We sleep like the dead that night, and I awake to arms that itch like motherf*ckers. It is intense. The injection sites were now red welts. Saturday and Sunday pass. The itching is intense, incessant, near unbearable. On Saturday the sneezing starts. This is a part of the reaction that I hadn't been warned about. Sneezing and abdominal incisions do NOT go together very well. It has been WEEKS since I sneezed and now everything is making me sneeze. I am in full blown histamine hell. Dr. Quiroga had warned me: "No anti-histimines, no steroids!" Each sneeze I bend over and try to loosen my abdominal muscles...and then I let go, no holding back. Monday comes. It quiets down to being barely noticeable. The welts are now bruises. Sneezing still continues.
It's Tuesday, and I still have the bruising and the sneezing. The itching is totally gone. I emailed Jossie about my reaction and she thinks I've had a good one. (Compared to other infertiles, my reaction has been mild).
I'm looking forward to seeing how much my LADs have changed. One fellow infertile said that she's noticed an inverse relationship between severity of reaction and percentage change on the LAD test. So hopefully we had a nice jump.
We're already planning our next trip but this time, rather than cram it all into a single day, we'll stay the weekend, camp out at the Rio Rico, and party with the other infertiles.
Comments on "3 States, 2 Countries, 1 Day:
Our LIT Journey"
Thank you for detailing your experience out. I'm sure there are many out there who have no idea what one has to go through for the LIT.
How long between each treatment?
Glad you made it back safely. Is this one treatment not enough? That resort looked fab to me.
What? You have to do this more than once? Oh boy, I'm sorry. You really do need to turn it into something fun next time.
Partying in Mexico with a bunch of infertiles sounds like a damn good time to me, almost worth the welts. I am glad to hear you are home, safe and sound.
I have to say, having reviewed the evidence I am not a believer in LIT, but that doesn't stop me hoping that it may make a difference for you. I'm glad the trip was relatively easy for you.
OK, so our 1st LIT treatment wasn't all that bad! It was, however, an experience that will be remembered years from now. Dr Quiroga is a very warm and compassionate person. He was very thorough in explaining the side affects and boy, he was right on cue. The welling and the intense itching started within 24hrs after the injections, and then immediately followed by the bruisings. By the end of second week, those bruisings finally subsided and you're beginning to see your arms looking somewhat normal. And then you realized that you're returning to Nogales for another treatment within a week, to experience the "fun" all over again. All in all, the facility isn't all that bad, and the staff are extremely friendly. Dr Quiroga obviously believes in LIT and he had helped infertile couples as far away as London, Amsterdam, Japan, and Korea. Fortunately for us, it is only an hour flight from John Wayne Airport (CA) to Tucson (AZ).