Updates!

I have some good updates and some not so good updates. First off, with the good! I went in for my third beta today and it is at 808!! That is excellent and they are rising perfectly! ALSO - the brown spotting has stopped since last friday! My doctor thinks perhaps it was implantation bleeding or progesterone. So alllll is good so far! I am 4 weeks and 2 days today - so this week is insanely crucial as I have never passed the 5 week mark except once.

  The bad...I got my follow up NK results and looks like my levels are still elevated. My doctor really wants me to do IVIg but I just cannot afford that! I have also done a lot of research as of late regarding NK cells/high tnf and I have learned that NK cells need to be determined through uterine scraping/ not by bloodwork. Because everyone has NK cells in their blood - it's normal! Anyway - without getting into too much depth with it all - I am not really convinced that the NK assay tests I've been doing are proving much. I tweeted to Dr. Braverman on twitter - and he actually responded to me. He stated if the levels are not done by serum - they are worthless. He said intracellular tests show and prove nothing. So I am at a loss. But after researching other women in the same boat as I am - they seem to get along fine with just a higher dose of prednisone. So I asked my doctor to up the dosage to 40mg a day. Which she agreed.

  So I will take 40mg a day to hopefully keep things suppressed enough to not interfere with anything. And by the grace of God - it will work. I am no doctor - and I could be taking a huge risk with all of this by "self diagnosing and self treating" myself through my own private research. But I just am not comfortable doing a blood transfusion treatment that costs a ridiculous amount of money and isn't guaranteed 100% to even work!! Maybe I am wrong - and if all goes wrong - I will give it a go next time. But I am praying in my gut that I am making the right choice by sticking with the treatment plan I am currently on - and by upping the steroid dosage. I guess we will see.

But enough of all that....I am taking this one day at a time. And today, things are POSITIVE. 808!!! Grow baby grow!!!!!

Follow up

I had a followup with my doctor today regarding the results. It seems my NKCells look decent - but TNFa is 41.5 (which I had it wrong by typing 45.7 in the last post). Regardless, still high. My AMH levels came back a little weird too. They came back at 10.45 which is really high for someone my age. The last time I got tested for AMH last year in Sept it was 3.71 which is normal...so I have no clue how or why it bounced to 10.45! But from what I read - it could be an indicator of PCOS. Which I haven't been diagnosed with ever and don't think I have. I have regular periods, and ovulate regularly. So it's a little weird to me. My doctor thought it was an excellent number - which made me scratch my head since I am 37 with an AMH that bounced to a number that perhaps an early teenager would have. I am sure my doctor is sick of my constantly questioning things - but I don't care. This is my body and if I want to know more - or have more questions...I'm going to ask. I am not shy and the way I see it - is she is working for me. I am paying for her services. So I don't care if I am a bug-a-boo when it comes to my health.

  Anyway, my doctor. That is another story. I like her, she is really nice...but sometimes I feel that she isn't that clued in. There is this drug that is commonly used in the UK that has proven to help bring down TNFa significantly. And I asked her about it at my appt today. She heard of it but never used it or prescribed it before. So when I got back to work - I saw that it is avail in the US and the price of it isn't that much. I wrote to her to see if it's something we could try and she shot it down. Stating that she was unfamiliar with it and doesn't want to prescribe something she is unfamiliar with. Ok, that's respectable. I get that. BUT. Here is my issue. If something is commonly used amongst reproductive immunologists around the globe and has proven to work - and it's available here. Wouldn't you, as a doctor, do some research on the drug. Find out more about it and perhaps see if it could be helpful to your practice? She just shot it down because she didn't know much about it. But this could be a cure for me! LEARN about it - and then if you feel it's too risky - deny it. But don't just shut it down and remain naive.

Ugh. It's really frustrating when I am doing basically homework to figure all of this out for myself, but I can only go so far with it because another person who could help - doesn't care to do any research to help. Sometimes I wish I could find a new Dr. but there are very few in the area - and I don't want to go down another long twisted road when I have already gone so far with this one.

Anyway, so I have to now go to a consultation tomorrow with a Dr. to discuss Endometriosis laproscopy. I am nervous for that. I don't feel comfortable with someone poking around in that area. But I guess it needs to be done so I will do what I have to do. So we will see how long it will take for me to even get an appt for the procedure. Shit, the consultation took 3 weeks to get! Very annoying.

So July clearly is a bust for trying again. Doubt August will be in the cards too if I don't get this surgery done right away. But I am glad that perhaps I am doing something to maybe nip this TNFa shit in the ass. Because if this can cure it - everything else should be quick to follow. But if it's not the issue...I am up a long hill battle. I will post more tomorrow when I wrap up with the Dr.

Stay tuned...

Reproductive Immunology

I stumbled upon this very interesting website regarding Reproductive Immunology. It's really informative because it describes exactly what everything is, and describes the treatments for each immune issue. For anyone who is reading this and thinking I am speaking a foreign language when I talk about immune issues or anyone who is actually GOING through immune testing...I highly suggest you read it. I have a lot of these issues and I talk about them often on here!

http://www.immunologysupport.com/treatments.html


P.S. Hopefully will get my results back today or Monday the latest! I moved my follow up with my Dr. to Tues the 28th! I am still keeping the consultation with the other doctor regarding Endometriosis - because if that is something I want to look into the future - then at least I got the consultation part out of the way, ya know?

Anyway - stay tuned for hopefully good news!

Results!

Got some great news today! I received the results for my LIT treatment as well as my updated TNFa tests, and LIT worked!! My numbers look amazing!


                                               LIT treatment before (top) and after (bottom)

Needless to say there have been some major improvements here. I will start with the LIT. The most important aspect of this test apparently are the B-Cells IgG. Specialists say they prefer this number to be above 50% and anything less than 30% can lead to miscarriages. Clearly, mine were insanely low at 1% before the LIT treatment. Which means my body wasn't producing any protective antibodies when pregnant to help protect the embryo from my insanely active immune system. So in turn, my body was attacking the embryo and viewing it as a foreign object. Now my numbers are 99.9% which means I have developed the antibodies needed to protect the embryo for future pregnancies! Amazing news!! You can see the test went from negative to positive! So I am naturally ecstatic over these results! Those trips to Canada were not for nothing and I am excited to see if this will really be the difference we needed!


                                     TH1/TH2 (TNFa results) before (top) and afrer (bottom)

Now on to this other important test. As you can see my before numbers were off the charts high at 61.5%. They say anything above 40% can damage eggs and anything over 30% can cause miscarriage. So I have been taking the natural supplements (3 grams of omega daily, 1200mg of NAC daily, 100mg pine bark, and 600mg Reservatrol daily). I was on these supplements for probably a month before I retested and I am really happy to see that the tests came back much lower. Now it's still in the high zone...we need to get this below 30 before I can start trying again. But I feel now with neupogen or humira - that it will help get this down where it needs to be. I don't understand why my TNFa is so high to begin with. They say it can be flared by Rheumatoid Arthritis, Endometriosis, or Crohn's disease. I wouldn't be shocked if I had Endo. I have always had painful periods so it wouldn't surprise me. It also wouldn't shock me if I have Rheumatoid Arthritis. My mom has that so it very well could be inherited. Whatever it is, I am glad my body is responding well with the natural supplements. And hopefully more specific medication for this issue can knock it down under 30.

  I have my followup with my doctor on June 2nd to go over everything. I want to begin trying again in July - so we have a month to get this all situated. But I am really optimistic for the future now and eager to see if everything works. I am still staying grounded because with my history - how could I not? Nothing is guaranteed and I can't expect that these will be my golden tickets to pregnancy. But I am so excited to finally be moving in a direction!! :)

Decisions

So now we know what we are up against. I have a huge battle to face and several roads to take. Deciding which one is what I need to do. I spoke with my husband last night and he is willing to join me on a Canadian adventure to try and do the LIT procedure. My doctor says this procedure is 100% proven to help work and is our best shot. So I guess it's kinda a no brainer as to what we have to do. Canada is fortunately only 9 hrs away. And I would MUCH rather go there vs Mexico. So I put in an email and phone call to try and get that ball rolling. I have to determine the cost and whatnot.

  Our second thing to do is go to the Oncologist on Monday to determine what he can do for us. If he can code this in a way to where my insurance will cover the medicine, that would be fantastic! Because with both LIT and the Infusions, I think we have a great shot. (no pun intended). Nothing is set in stone and we have a lot of fears, risks, and anxiety about it all. It's pretty scary stuff. Messing with your immune system can open the doors for things you may not want. It takes a perfect cocktail of medicine to not fuck things up. I am confident in my dr.'s abilities to dose everything correctly, but it still is kind of playing with fire. Sure my immune system is in overdrive right now, but I certainly don't want to start getting illnesses and whatnot because I lowered it too much. So it's a risky thing to do.

  Another concern about this hyperactive immune system is that there may be an underlining issue going on. Rheumatoid Arthritis, Cancer, Endometriosis, some type of inflammation which could cause it to be in overdrive. Which scares me as well. I don't know, it's all so friggen crazy. I haven't been sick in 2 years and my doctor says this is why. You would think that would be a great thing, but to be honest, and I never thought I would say this, I kinda wish I would just get a cold! lol Something to tell me that my body is back to normal!

  I am trying to be optimistic about everything, but with the odds so stacked against me, it's really hard. Maybe I truly am just not meant to have kids? My sweet sister said as a last resort - I could consider her for surrogacy. Which honestly, would be my best option. But I don't want to ask that of her. I don't want to put her through all of that. On top of that, she has had to get c-sections for both of her past pregnancies which means she would have to get another one for mine. And that's just awful. So I just don't think that route is really desirable for either of us. Plus, I think her husband is a little weirded out by the idea. Can't say I blame him...but it's probably the most selfless thing to do for someone that I can think of. And I know she would do anything for me. And if the shoe was on the other foot....I would do it for her no questions asked. It's just what you do for the ones you love I suppose.

But hopefully we can get all of this sorted so it will never even come to that. I want to carry my own child. I want to experience pregnancy, I want to go through everything it requires - the good and the bad. I want to have my own kid. I just pray I can.

Lifes Lemons

    I finally had my followup with my dr. today. Can't say the news is great, but not surprising. As I determined earlier, definitely NKCell elevation going on. My bodies immune system is in hyper mode. It's attacking anything and everything it see's foreign. Which normally would be a great thing I suppose. Not when you are trying to get pregnant. My body is looking at my husbands cells as foreign and immediately attacking our embryo. Basically, I don't have a shot in hell maintaining a pregnancy right now until I get this under control. I have an appt with an Oncologist that works with my doctor regarding immunology and blood related issues. He hopefully will look at my labs and perhaps be able to code all of this a certain way to where perhaps my insurance will cover it (if he codes it unrelated to infertility). I am hoping that will happen, it will make the punch more of a slap. I am also strongly considering traveling to Canada and doing LIT as well. It's only a 9hr drive and I hear the success rates are really great. I'm willing to take that risk. So that's basically it. I am up shits creek and I have a long road ahead of me. It's financially draining and my emotions are at their peak. I don't know if all of this will even work out in the end. Right now I am very overwhelmed.

OH OH, to add insult to injury, I have yet ANOTHER blood clotting issue. Factor VIII. So lovenox will ALWAYS be in my remedies. Baby aspirin will always be apart of my daily life permanently as well. Yay.

  Here are my options. All which will cost a fortune.

Option 1: LIT. It is not FDA approved, which means I would have to travel to Mexico or Canada to seek treatment. My doctor said it will cost roughly $500 - which isn't bad...but I will have to have additional treatment as well which could be costly. LIT basically is: Lymphocyte immunotherapy involves the injection of your partner’s white blood cells into your forearm, allowing your body’s immune system to develop an antibody response to his cells. That way, when an embryo is later transferred, your body may be able to recognize it and won’t reject it. 

Option 2: Intravenous immunoglobulin (IVIg)

IVIg is made from antibodies and is usually given by intravenous drip as a treatment for immune deficiencies and autoimmune diseases.

A recent review of several clinical trials found that IVIg treatment did not increase IVF success rates. Another similar review recommended that IVIg for recurrent miscarriage should not be offered unless it is done as part of a clinical trial.

IVIg carries varied and sometimes unpredictable risks. Side effects are rare but can include headache, muscle pain, fever, chills, low back pain, thrombosis (blood clots), kidney failure and anaphylaxis (a bad reaction to the drug). 
It is also possible that, antibodies from IVIg may cross the placenta into the bloodstream of the fetus during pregnancy, where they might react against some of the baby’s cells. However, this has not been seen in practice.

Option 3: TNF-a blocking agents

Tumour necrosis factor (TNF) is a chemical produced by immune system cells, such as NK cells, which help immune cells get to the source of infections by promoting inflammation. Drugs which block the effect of TNF (known as TNF- blocking agents) are routinely used in the treatment of arthritis, asthma and other immune disorders. They stop inflammation but make the attack on infection less effective.

Several clinics offer the use of TNF- blocking agents (Enovel, Remicade and Humira). However, there are risks:

• Remicade may increase the risk of septicaemia, chronic infections such as tuberculosis, cancer of the lymphatic system, liver problems, white blood cell disorders and strong reactions to the drug..
• Medicine specialists say that Remicade should not be used in pregnancy.
• Humira is not licensed for use in implantation failure (when the embryo fails to embed itself in the lining of the womb). Its effects on reproduction and fetal development are unknown.

Intralipid infusions

Intralipid infusions are a sterile fat emulsion, containing soybean oil, egg yolk, glycerin and water, which is administered by injection.

In April 2015 the Royal College of Obstetricians and Gynaecologists said that there is no rationale for the use of intralipid infusions in fertility treatment. There are no published randomised controlled trials assessing its efficacy.’

The risks associated with the use of intralipid infusions:

• severe sepsis (also known as blood poisoning) - this is a potentially life-threatening condition in which the body’s immune system goes into overdrive. This can reduce the flow of blood to vital organs, such as the brain and heart. Three women have developed severe sepsis following administration of intravenous intralipid infusions. This is believed to be as a result of poor practice in the administration leading to contamination of the product.
• hypercoagulation – this is excessive blood clotting, which can result in blood clots forming inside blood vessels. This can be dangerous, increasing the risk of deep vein thrombosis, stroke and miscarriage.

Also - Steroids

Corticosteroids are a type of drug that can suppress immune responses, and are routinely used in the treatment of arthritis, asthma and other autoimmune disorders.

There is no proven advantage in using steroids in the first three months of pregnancy, and the risks to you and your baby outweigh any possible benefits. Medical guidelines recommend that pregnant women avoid all drugs at this stage unless they are likely to benefit your health.

A clinical trial in Canada tested the effect of giving pregnant women who had previously suffered two or more unexplained miscarriages a corticosteroid called prednisone. The study found that prednisone didn’t prevent miscarriage, and increased the risk of high blood pressure, diabetes and premature birth.


(sorry for the crazy different fonts, I copied and pasted most of that and the fonts got all screwy)