I have long hesitated before writing this post because upon reading your stories I wasn't sure if mine had anything useful for you. Frankly, I haven't felt the devastation of ITP that many of you have to deal with because it never got beyond the mild stage of 46k. However, one year since the diagnosis I am up to 192k WITHOUT ANY MEDICATIONS. However, I am following a DRACONIAN DIET which may or may not have helped my recovery. So my post is about my diet and asks whether any of you experienced a spontaneous recovery or had a misdiagnosis, hoping that there may be something of value in it, or perhaps not: you decide.
As a 44 year old male, on the day of my diagnosis in Dec 2012 my platelet level was pretty good: 78k. It then kept dropping over the following weeks until I reached 46k, but then it stabilised in the low 50s and stayed that way until I checked my platelets again in September 2013 (yes, I explain below that b/w April and September I didn't do a blood test due to sheer immaturity). My physicians' approach was the conventional first line of therapy: steroids and let's take a wait and see approach. I didn't want to take steroids, so I went instead for an alternative of removing all major known allergens that I was aware of in my diet: gluten, dairy and seafood. For good measure, I also eliminated all refined sugars.
The immediate results, as in the initial two weeks, were phenomenal. I felt a lot more stamina, no more headaches, and just so much better physically and mentally. Okay, but that has nothing to do with ITP, and to be sure my platelet count didn't budge: 46k in April 2013.
Yet I felt so much better that I kept on the diet and then, to my wife's frustration, decided to deal with my ITP by doing a "ostrich buries its head in the sand'. No more blood tests, and basically ignore the illness trying to carry on with my life as best as I could. I would occasionally bang myself on furniture and once cut myself with a kitchen knife. After a few minutes of panic we started to realise that I must have been improving because my blood was clotting just fine.
Over the past summer I increased my exposure to risk and took up surfing again in Bali where I live. I don't mean just any surfing, but waves on sharp, tropical reef. Finally, my wife's advice had the better of me and in September I went for a blood test. To the physician's astonishment, it was up to 148k. I had it rechecked on 23 October, and it went up some more to 192k.
Was I a misdiagnosis? Well the jury is out on this one but there's no evidence that I could have caught another illness. I had 3 different hospitals in 2 different continents run the tests, and they all eliminated any other possible cause. I am 45 years old, so at this stage of our lives it is pretty much a chronic illness. We are not known to recover from ITP like a child would. I understand my chances were 5% to do a full recovery. Yes, ITP is predictable in its unpredictability, and can strike again when we think we're on the way to recovery. The point though is that my platelet count keeps increasing.
Am I just very very lucky? Did my diet help my recovery as my nutritionist will vigorously argue? Does anyone in our community know of any illness that could mimic ITP for over 6 months? Anyone with a story of spontaneous recovery after a year?
Thank you for sharing.