Saturday, April 30, 2011

A New Plan and Spirulina Warning

I got my test results back from my repeat immune tests. My natural killer cells stayed the same (bad), but my TNF doubled from 20 to 40. Yikes!!!! I was worried that I was going to have to start taking another medication like humira or prednisone to calm down the inflammation.  I got on the internet. I thought about all the changes I made since the first test. Well in January when my FSH was higher than my age I panicked and started to drink wheat grass to try to lower it. I did not want to over do it or spend a lot of money so I found a drink at the grocery store that had wheat grass in it. I started drinking Green Machine by Naked and Superfood by Odwalla. I started to drink one or two a week. I thought I was being healthy and doing something right. It is a juice smoothie, not medicine so I thought it was safe. I never thought about how it would affect my immune system.

Well it turns out that both of these drinks contain spirulina. Spirulina is not regulated by the FDA becuase it is labeled as a dietary supplement. In general this stuff is supposed to be good for you. I did some research and it is horrible for those of us trying to conceive. It raises both TNF and NK. UGH so I freaked out. Thank God I had that test repeated or I would have never known. Now since my levels are both so high, I didn't really have a chance the past two months.

Yesterday I called the office of the reproductive immunologist. I was greeted with the please hold. Then I was on hold for 10 min. She tries to give me May 9th as my apt. I explain that I am starting a new cycle and I need to speak the the Dr asap. She comes back with May 5th. I told her that was unacceptable. She then says she will talk to the Dr and call me back. She never did. Ergh she is so annoying. This turned out to be a blessing in disguise. Thankfully I have the Dr's blackberry email....So I sent him a nice email at 5pm He called me immediately. He apologized and said she is not a nurse and does not understand. We had a nice chat. He had a new plan all set to go.

The first words out of his mouth were, I would like to put you on Neupogen to take care of your LUFS and immune issues.... This was music to my ears. So I never mentioned the spirulina to him.This is the reason I contacted him in the first place. In October, I found a research article on treating LUFS, the only one I ever found, from Japan. That Dr used neupogen to treat LUFS. My Dr is using it to treat immune issues. I have both, so this could be the magic potion. I was waiting patiently for this moment to come. I tried intralipids twice and I thought maybe he would want to try it three times. Neupogen is a daily injection which is not fun. Once you try PIO intramuscular, the subQ shots are a piece of cake. We are going natural this month.

I am so excited but scared at the same time. This is going to be the last treatment I try. I will  give it a few months and see how my numbers look.

6 comments:

  1. I conceived with high NK's and a high TNF- I will need to look back at my records but it IS possible to conceive with high numbers but the whole point of RI treatment is to get them in order & control them once you are pregnant- mine have gone up & down being pregnant (17 weeks on Monday). My trouble week is 8weeks & they were high then- my doctor controls them with IVIG & prednisone. I wouldn't worry too much because even if they are in line preconception they will go up in reaction to the pregnancy.

    I hope & pray the neupogen is your golden ticket!!! Any shot is ok after PIO's haha!

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  2. Neupogen - that is very interesting, I never would have connected that with potential infertility immune related issues (but then again, I am definitely no medical expert!). I took neupogen shots 1 week each month back when I was going through chemo for NH Lymphoma (about 11 years ago). My WBC was in the tank and I had a hard time rebounding from chemo, so I they started me on neupogen. It worked great and I have kind of funny memories of my dad giving me the shots in my stomach. One time he was trying to make me laugh to take my mind off of the shots, but because I started to laugh, the needle came out and he had to stick me again. I think I would give myself the shots alone if I had to do it again. :)

    Best wishes for a successful treatment!

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  3. Sounds like a great plan! I know you wanted to start it and it very cool that your Md is trying it out! Interesting about the Spirulina~

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  4. Wow! Spirulina even says ,if you ever did any research. Not to take it if you have immune issues of any type!

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  5. My goodness! I never knew this about spirulina. I don't eat it but only because I've given up on my diet for now. It is discouraging when you think you're doing something healthy and then find out it is bad for you too! Why can't we all just get pregnant while eating cheetos and drinking orange pop like everyone else?

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