Results.

****Update: I spoke with my dr. and she is going to up the ante to 20mg of prednisone daily. So that should hopefully help with the inflammation. She also again advised I do the IVIg treatment pending a positive preg test. I am considering it. I just don't want to fuck around this time. I am tired of going through this crap month after month. So I may just suck it up, go into debt and see if it makes a difference or not. We will see****



Well, not the news I was hoping to hear. Got my TNF results in and my levels are still up.

TNF: 37.0
IFN: 23.4

My IFN level is up too, so I don't know what that means. Guess more inflammation for me, yay.

This is why I didn't want to retest, because these levels stress me out. I wrote my doctor letting her know the results (I called the lab this morning to see if they were in). I know she probably is so irritated with me that I do my own work when it comes to this. But honestly, she should be happy - I'm essentially doing her job! lol. I do all of the research/work and she just authorizes the medication. If I sat and waited around for them to contact me with the results - I would be waiting until next week. My old nurse sarah would be kind enough to email me the results once they came in...but she no longer works in that office. Now I have a bitch nurse I have to deal with that won't do those things. I have to come into the office and meet with the dr. to discuss things I already know - on top of paying a $40 co pay. It's bullshit and I am really getting fed up with this office.

Anyway, hopefully my doctor will respond and give me a higher dosage of prenisone. Hopefully that will help with the inflammation issues I clearly have. I am really bummed that I have been on the hydroxychloroquine for 3 months now and it hasn't lowered my TNF yet. I was really hoping that this drug would be my cure for that - and to spare me more aggressive treatment such as humira (which I am not thrilled about taking since it can open the door for cancers and such) as well as the super expensive IVIg treatment. But now I'm thinking I might not be able to get off the hook with that.

  Anyway...I should be ovulating tonight. I got my round of Intralipids yesterday and I think I timed it perfectly this time around. We have been DTD all week and will go again tonight on onward until I am sure I ovulated. No messing around this cycle.

If I do happen to get pregnant and still miscarry - it's off to see Dr. Braverman, Reproductive Immunologist in NY. He is the top Immunologist in the country and many people across the world go to him. NY isn't too far away and it will be worth it to work with someone who claims to have an 80% success rate. I am eager to get this sorted and after a year of trying with my doctor - shit just isn't working with her. Well - maybe it will - it's to be determined how this month goes still. But if not...buh bye to her and that practice.

Anyway - tick tock goes the clock....hopefully this month will be our month and will be the start of a new beginning for us. I am going to keep positive despite the bad news of the levels today. Stress doesn't help matters...so I am going to try my best to not stress out. Easier said than done...

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...

Bad news.

Well not even 5 minutes after writing the last post, I got some results back. And it's not good. My TNFa came back at 45.7 which is up from 37.1. Not good. Anything over 40 can damage egg quality they say. Clearly I am beyond disappointed. I really wanted to try again in July and now that has completely gone to shit. This has been the most frustrating ordeal I have ever experienced.

  I definitely am keeping the consultation for the Endometriosis laproscopy to see if that is what is causing the issues. I pray it is - because then I will finally have a reason. Because I am baffled as to why this is so high. It really sucks. So now, depending on when they will even schedule me in for the surgery - things are starting to get pushed back into the Aug/Sept timeframe. Which makes it 4-5 months since the LIT treatment which only lasts in your system for 9 months. Clearly time is an issue here.

  I feel like I have been gut punched. I feel like any hope to having my own child is just getting to be a dream that will never come true. I get so angry that so many women can get pregnant and enjoy their pregnancies. But I will NEVER get to have that. Even if I do get/remain pregnant - I will never enjoy it. Those entire 9 months will be lived in pure fear and worry. I won't get to joke about "no more after this!" or "This one was an accident" or even get to decide "we were only going to have one, but now we might go for another". I will be lucky if I get one.

 I am sorry. I am having a pity party for myself, and just downright sad. I am just so beat up. You can only be kicked so many times before you can no longer pick yourself up off the ground. I'm tired of getting up. I'm just so sick of it all.

  But I will pick myself up this time. And I will keep going. I have a little fight in me still, and I am going to do this for me and my husband. I cannot give up now, I have gone way too far. So I will just keep on doing what I need to do. Hopefully, someday, it will work out.

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!

New plans

I had my followup with my doctor last week. We went over the upcoming plans that we will need to prepare for TTC again in July. Basically, with the LIT procedure being effective, my only real obstacle that I have left is the high TNFa. I need to get that number down below 30. I have already been able to drop it down from 61.5 to 37.1 with supplements which is amazing. My doctor was really impressed - but it's not quite there. So I will keep on the supplements - even adding a few more in the cocktail - and retest everything in 2 weeks to see if there is any more improvement.

  If there is improvement - she will likely put me on intralipids to hopefully keep it down. However, she said the most effective thing to do to specifically target TNFa would be the IVIg. Which would suck because it's $2500 a shot. I feel I will have to do this regardless if it comes below 30 or not because inflammation can increase once pregnant and it can't come back up again. Sucks. '

  It's all so scary. One little thing can go wrong and boom, it's all over again. I have allowed myself 6 months to mentally prepare myself again. I gave myself a lot of time to get my mind right. While also clearly doing things to hopefully prevent it from happening again. But the thought will forever my engraved in my mind that nothing is guaranteed, and that another miscarriage is still very real and very likely. But it cannot stop me from trying again. I will do everything I can to try and prevent it. But it's just a sad fact I have to face that it just might happen again.

  Anyway, one step at a time. Right now, I am trying to eat better, exercise, and just live in the moment as best as I can. We will see where I am at in 2 weeks. From there, I will decide what the best course of action is. Baby steps. Yep. Baby steps to hopefully get baby steps one day. :)

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!! :)

Negative

Got some VERY great news today! My retest for HTLV came back negative!!!! FINALLY something going my way!!! What a relief! Man that was nerve racking!! Going a whole week and a 1/2 wondering if you have some weird virus! As if I needed that additional stress in my life!!

  But I am so happy to receive this news today! I sent the results to the Canadian clinic so hopefully we can reschedule the LIT appts and get this train back on track! I'm bummed we wasted this weekend for nothing since I literally could be having the procedure as I type. But it is what it is. Honestly, this past weekend, I did nothing. I vegged out and completely took the time to just unwind and relax. So it really was a nice chill weekend which is exactly what I needed.

 I guess everything happens for a reason - so maybe we just weren't supposed to go this past weekend. Who knows. Anyway, I will keep you posted on when I reschedule my appt!

Today is a good day! :)

***UPDATE***

I rescheduled my LIT appts. My first round will be on April 4th, and the second round will be April 25th. Once that is done I have to wait 3 weeks to retest the LAD and see if it worked. Fingers crossed!

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)

Thoughts on results

So I FINALLY got *some* of my results back. I am still waiting for 2 other panels as well as my husbands results as well. But this panel that I just received was kind of a bombshell. My nurse was nice enough to send me the report so I can do some of my own interpretations and research before my consultation with my doctor on Tues to go over everything in much greater detail. But she knows how impatient and stressed I am - so I can't thank her enough for allowing me to go ahead and do some research for peace of mind.

  With that said, through my research on good ol' google...I believe we have found our culprit. Nevermind the tests which levels came back a little out of range...my focus mainly is the TH1/TH2 results. My levels for the TNFa were INSANELY high. And after researching what that means - well as you read below - it isn't good. Basically my body is acting as if the embryo is a foreign object and getting rid of it. If what I researched is truly accurate - this would ALL MAKE SO MUCH SENSE to me. It would explain the chemical pregnancies. It would explain just so much! Because my issue was never the fact that I couldn't get pregnant - it was that it would never stick! And after every test that I've had - this would make the most sense. My body is attacking it! My immune system is through the roof! Probably would explain why I haven't even had a common cold in almost 2 years!! Not even lying!! I tried to remember the last time I was even sick! I believe it was the beginning of 2014! Crazy!

  I am not totally sure that helped play a part as to why I haven't been sick in a long time - but a hyperactive immune system would surely be a good clue as to why. Anyway...I am feeling very relieved. Not that there is something seriously wrong here - trust me - it sucks I have these issues and I hate that there are problems with my body. BUT. It gives me answers. AND. it's treatable!! I don't want to get ahead of myself here. This is only what google has told me. I can't sit here and play doctor and diagnose/treat myself. I have to wait to see what my doctor says about it all. Her professional and medical interpretation of it all. And as I feel that this is what is going on - she may surprise me with something entirely different. Could be worse news, could be positive. I will just have to wait and see on tuesday.

  Anyway, there are also some conflicting results like low NKCell count but high TNF. I'm not sure what that means or why. More questions for the dr. I suppose. Leave it to my body, I've always been a walking contradiction! lol

But for now...I am happy that at least we are getting some answers!! Answers that I truly believe will help make this nightmare go away!! I have found a newfound excitment I haven't felt in a while. Hope. I am trying to do what my nurse told me to do. Stay grounded, don't get scared/nervous/excited UNTIL you talk to the doctor. Take everything google has to say with a huge grain of salt. So I will focus on doing that. There could be a million other things that are wrong that I don't even know about. So I just have to keep waiting and talk to my doctor.

But man, I really hope and feel that we are making some ground here. I finally think we are on the right track.

Blahdeeblahblahblah

So after 4 weeks of wondering, waiting, hoping to have an answer from the tissue I submitted to the lab....the result? "Maternal Contamination". Which means, the tissue which I thought was the gestational sac, wasn't. Apparently it was my tissue and had no products of conception at all. UUUGHHHH.

  Even my nurses said they were baffled because they examined the sample before it was sent off and stated that they would have thought it was the sac too based on the size and texture of it! But...guess not.

 So all of that was for nothing. Another bill for testing piled on my back - for nothing. The only thing I have to show for ANYTHING since we have been TTC is the endless debt I have acquired. Yay me.

 So here I sit, no answers as to if my last baby was a chromosome issue or perfectly fine. We will continue on with the NK Cell testing but my doctors can't seem to give me an answer as to when I need to go in for it. Not sure if you have to be at a certain part of your cycle or not and no one will tell me one way or another!! So looks like I will call again to try to get a timeframe to begin this shit.

  Clearly you can tell I am annoyed and frustrated. This whole blog is just me being annoyed and frustrated. :(

Waiting, waiting and more waiting

I hate waiting. I am probably the most impatient person ever. I want things to happen when I want them to happen, so having no control over certain things drives me nuts!! I haven't stopped tracking my basal temp even though I am currently not TTC this month, just to keep a range of it for reference. So I am pretty sure I ovulated yesterday which is good, but sad. Another egg wasted, another opportunity missed. I hate that I have to constantly watch cycle after cycle go by and nothing comes out of it. It's so frustrating!!!

  I am also waiting on these dang results from the tissue I submitted to come back!! I'm so eager to find out if they could determine if this is a chromosomal issue or not! Or if they could even determine ANYTHING from it at all!! It will at least point me in somewhat of a direction regardless the outcome. If it is, well that sucks, but we will most likely have to turn to IVF. But if we have to do that, might as well get that ball rolling now! I'm 37, times a' tickin!!! lol! And if it isn't, well we have a lot of NK Cell testing to do and tons of more research to determine wtf is going on!! Such a headache.

  In the meantime, I see every other persons life moving onward and upward, while I sit here in limbo. I have hidden so many mothers, and mothers to be on my facebook because I simply just can't deal with looking at all of that right now. I hate to have to hide my friends, and I really am super happy for them...but looking at them have these perfect pregnancies and beautiful babies without a problem in the world just rubs salt in my wounds. Maybe I am being immature about it, whatever. It's how I feel and I already promised myself I would allow myself to feel any way I want about this. It's my way of spoiling myself after what I have gone through. So yeah, if I want to act like a baby at times...then so be it.

  Anyway, I will update as soon as I get the results from the tissue sample. Until then...well, just going to enjoy this quiet day at work while others are enjoying their MLK day off!! Jerks!! haha