Here we go.....

I'm home. And tomorrow I will return to work and life. 

My platelet count is up to 22. I got admitted to the hospital on Thursday with a count at the bottom of the barrel (1). I'm feeling thrilled about the increase. Additional bonus: I feel great. Truly. I never got sick from the IVIG this time. Yahoo! I'm a little tired from sleep deprivation, but that's no problem. 

I had less IVIG than the last hospitalization. One big dose on Tuesday as an outpatient. And then a half-dose on Friday at the hospital. In the end, I'm not really sure what eventually boosted my counts. It look longer than ever. I don't know if it was IVIG. I don't know if it's the Promacta. No one knows for sure. I have a strong belief that it was a lot of prayers from many thoughtful folks and hours upon hours spent meditating and visualizing through the day and night. 

I'll have daily blood tests for awhile after work. The plan is to continue to receive IVIG when necessary - but hopefully not let me get into the single digits again. 

Long term: I just need to be able to maintain a stable count above 30. I don't need to get to normal (150-450). I could live safely at 30+. I'd love to be 50+! Already today, I'm at 22 - and all my dots and bruises are fading. 

I can't get into the single digits anymore - and I can't get to 1. It's too dangerous. The last few days were the scariest of my life. Especially when I was stuck at 1 for several days. I was afraid to fall asleep. I was afraid that my brain would hemorrhage and I'd never wake up. It was petrifying. Especially because I felt fine. 

But moving right ahead..... 

I'm going to get this figured out. I really do believe my body is capable of returning to full wellness in the next 6 months. My plan: Lower my histamines through diet, exercise, and meditation/stress management. I believe this might just be the light at the end of the tunnel.  

Histamines are REALLY important - they regulate many bodily functions. Kudos to histamines for getting the job done. 

However, if you have allergies, then you know sometimes histamines can become overactive - hence drugs like benadryl - which act as "anti-histamines." 

The more I read about histamines and histamine intolerance, the more I think there is a connection between elevated histamines and my platelet situation. 

Some histamine-related links...

Histamine & Histamine Intolerance (from the American Journal of Clinical Nutrition)

I'm wondering if maybe there are a wide variety of factors that elevate my histamines - and maybe my body doesn't have enough enzymes to break them down. Maybe if I could get my histamines under control, my body will stop being SO OVER-REACTIVE about platelets. 

Autoimmune diseases are not the body trying to kill/hurt itself. Autoimmune diseases are the body being confused. I think my body can get back on track.  

This is just a theory. 

But since there is no real "cure" for ITP, I feel like I need to try something. And document it. Because if it works, it would be a HUGE miracle. And maybe it could help someone else someday. 

I'm going to intentionally focus on lowering my histamines. 

I will focus for the next 6 months on this project. And then see. Maybe I'll be consistently above a platelet count of 30. And wouldn't that be peachy? 

I've always heard that there is no clear cause for ITP. That it isn't related to diet, exercise, or stress. That it's random. I think that's mostly true. There is no clear cause of why ITP happens - I think every ITP body gets confused for different reasons. 

But I think I CAN figure out why ITP happened to my body. I'm going to give it my best shot. 

A few factors that lead me to believe histamines might be involved. 

1) Strenuous exercise has a tendency to elevate histamines. For most people, this is 100% okay because their bodies can break down the histamines. But if your body is producing far more histamines than it can break down, inflammation can occur. I am very prone to exercise-induced hives. I have been since 7th grade. During PE class in high school, my friends and I could sometimes watch the hives on my legs. If I hit my leg with my hand, I would get a big hive in the shape of my hand print. For years, I have gotten temperature-induced hives when I'm too hot or cold. I like strenuous exercise, but I like platelets more. So I'm going to just give this theory a try for 6 months. I'm going to focus my exercise energies on low-histamine activities: yoga (not the hot kind), stretching, and mild weight training. So no half-marathon. And I'm okay with that. I really want to see if this plan gets me consistently above a platelet count of 30.  

2) (WARNING: Lady talk. You've been warned.) Every time I have ended up in the hospital, it has been right before/during my period. I know there's a connection. The doctors think there could likely be some kind of connection, but we don't have a way to know or a way to fix it. I did some research, and women tend to release additional histamines in the days right before their period begins. Actually, there's quite a bit of research out there on histamine fluctuations during a woman's cycle. Maybe I could take an anti-histamine during that part of the month - and really focus on avoiding additional histamine stress. 

3) I know that there is no "known" connection between ITP and diet, but I think there might be in my case. So I'm going to focus on a low histamine diet. Here's the plan.  And I'm going to keep focusing on my iron intake. It went WAY up since my last test! Awesome! I had it tested while I was at the hospital and they were taking blood all day every day anyway. Success!

4) Stress: Stress raises histamines. From this WebMD article: "When you're all stressed out, your body releases hormones and other chemicals, including histamine, the powerful chemical that leads to allergy symptoms. While stress doesn't actually cause allergies, it can make an allergic reaction worse by increasing the histamine in your bloodstream." 

I don't view myself as a particularly "stressed" person - but on the inside, I sometimes really am. I worry a LOT - especially about my family. I also stress out about a lot of other things that range from insignificant to highly significant. Also, I am really afraid of a couple things including the dark and dogs that aren't on leashes. And car accidents (this fear has gotten worse lately because of the risk associated with being in even a small accident while at a low platelet count). 

Whenever I encounter these things, I feel a huge dose of cortisol rush through my body. Panic.This is not good. Too many histamines. Also, this disease itself is pretty darn stressful and has been for 4 years. Hearing from doctors about how you could bleed to death at any minute is not great for the ol' histamines. 

Point being: I believe improving my stress management through daily meditation and visualization is integral to getting my ITP under control. Has this ever been proven? No. But that doesn't mean it's not possible. And anyway, what's the harm? I'll be a happier, healthier person.  

This is my plan. I'll continue on with regular blood tests. I have an amazing doc and amazing nurse, and they are always watching my numbers and sharing recommendations. 

Other things that raise histamines:

1) red wine
2) food additives and preservatives
3) fermented foods and preserved meats
4) yeast

So it's a no go on all of those. 

I think that for most people, their bodies process histamines really wonderfully. So foods and such are no problem. But I think for me, maybe there's more too it. 

And why not try, right? I'll try this plan consistently for 6 months. 

I believe this just might be the ticket!


  1. Emily, you know your body and its history better than the doctors. Recognizing and taking this proactive approach might be just what you need!

    Do you think it would be a good idea to check with a doctor about your plan (if you haven't already), just in case such a big immediate change might have any negative side effects in some otherwise unforeseen way? (I know nothing about any of this, but am familiar with other situations where the human body adapts to become either more or less sensitive to various stimuli. So I just wonder if, for example, quickly removing inputs that might raise histamines could have a rebound effect that would actually make your body more prone to produce histamines from even smaller stimuli.)

  2. I'm glad to hear you're home and doing better :) I enjoy reading your blog.

    Ann S.

  3. Definitely an answered prayer! So glad you're home! Here's to cooperative platelets!