I have quite a bit to report since I last posted. If anyone has read this thread since the beginning, three years or so ago, you've seen that I absolutely did not accept that ITP happening to me was a random event, a bad gene, or something that had an otherwise unknowable and unsolvable cause.
This is not a popular opinion as it appears most Hematologists regard the causation similarly to being struck by lightning. Wrong place, wrong time, no rhyme or reason, bad luck. Probably because of this, most ITP sufferers seem to regard their diagnosis similarly- struck by lightning. It just happened.
I cannot say for sure why I never believed this, but I think part of it has to do with the fact that most serious diseases, both autoimmune and not, seem to have a linear arc to a debilitating or even terminal conclusion with little relief available or likely, whereas while ITP, which is sometimes debilitating, fluctuates in severity in most cases, and is one of the few autoimmune issues which responds favorably to treatment. It's different. The truth is that I could have developed that belief solely because I had ITP, but I just don't accept that an individual is helpless.
So, I tried everything. Except a splenectomy. Even went to England for an Indium test to prepare for a splenectomy in the event it became necessary. As much as I vehemently disagree with the philosophy behind the splenectomy I accept that there are times when it's necessary. If you want to read about everything I tried, England, and my thoughts on Splenectomys then read back through the post. I may post a summary once I'm sure this is over, if there's an indication that someone will listen to it, but that won't be for a little while yet.
Moving forward. As much as I felt that the cause of my ITP was knowable, and perhaps even solvable, it wasn't until my second Winter with ITP that I had an objective reason to believe it.
As I've explained in this thread, I observed my platelets rise significantly in the late Fall. This occurred in the same wave fashion and for the same length of time as the previous year.
This pattern meant to me that the proximate cause of my ITP was of variable intensity, and it followed a pattern. To me, that meant an environmental cause. This is one of the more exciting conclusions I had come to in a while, and it also meant that with enough analysis and trial I could likely isolate the cause of my ITP.
The fact that it varied meant that whatever the antagonist was, if I were fully removed from it there is a chance my ITP would resolve. Think about that.
I won't go into gross detail about how I arrived at my central AC unit (again, read the thread), but it wasn't too difficult to isolate what I was exposed to, environmentally, for most of the year but which abated in October. I live in Orlando, FL, so our reality (unlike most of the rest of the country) is that we use AC through September, sparingly in October, and very little in November/Dec/Jan.
It turns out that our AC unit was installed between my last blood test (7 yrs ago) and my diagnosis with ITP (3 yrs ago) when we added on to our house, and it was poorly engineered. It condensated on the outside of the unit and mold grew all over the air handler, inside and out.
We had this repaired/remediated and the first thing that happened was that my platelets stabilized in the 50s, in the absence of treatment. This was a first, and I initially thought I was on my way to having my ITP resolved. I thought I'd done it.
However, once my platelets got to 65K, they stopped and stayed there for six months. This was very frustrating for reasons that are probably obvious.
So I thought some more. One of the things that had been bothering me was that my chest/belly looked sort of 'inflated', as though someone added a few extra PSI to me with a bike pump. I thought this was odd, but it had also been present for a few years. It slowly dawned on me that this 'puffy' appearance wasn't fat (I'm 5'7", 155 lbs) but was an inflammation of sorts.
I'd heard of people who had Gluten allergies, and at first I thought it was a problem only experienced by hypochondriacs. I always thought Chris Rock's joke that 'no one in Rwanda is lactose intolerant' was as telling as it was funny.
I was tested for Celiac as a matter of course during my diagnosis, several times by several different methods, and the test returned negative every time. However, in the process of a standard food allergy panel I was having done at an allergist, it was noted that I had a wheat allergy of undetermined severity. I thought that was interesting and by happenstance I wound up listening to the author of a book called 'Wheat Belly' on NPR. He explained, in great detail, how it is very difficult for some people to process modern strains of wheat and that as a result these people develop a 'puffiness' or a 'Wheat Belly'. He also said that the belly is by no means the only symptom, and that modern wheat strains can create all kinds of hell for people who are intolerant or allergic to them. This gave me pause.
After reading much of the book and doing more research, I gave up bread at the beginning of the 2013 Summer. This wasn't easy at first because most everything I ate for the last 30 years came on a substrate of bread. It took some time to assess alternatives, and included a lot of free range chicken. And Fruits and vegetables, which were never the first thing I put on my plate.
I also revisited my HVAC after plateauing at 65K platelets. In addition to all of the work we'd previously done, I finally just blocked the AC vent above our bed, under the theory that rather than blowing straight from the vent into my nose, potential allergens would have to defy gravity for about 16 feet to get to me from the other vent in our bedroom. I don't know the science on this, at all, but I figured that if an allergen had to have a 2/1 glide ratio to get to me, I might just ingest fewer of them than from freefall above my head.
As I continued to avoid bread, I noticed a few things happened. I lost about 5 pounds. Probably predictable, but on my relatively slight frame it was noticeable to me. Also, the puffiness started to recede a bit. This was noticeable to others, which I thought was surprising as it occurred a bit later. The weight had come off almost immediately, but the puffiness took longer and was what other people seemed to notice more.
The next thing that happened was a blood test. As I explained, I'd been within a few K of 65K platelets for five or six months.
This time when I received my report card from my Hema it showed I had 72K platelets. Yes, I know from our recent discussion that this is 'within the margin of error, etc.' so I didn't get too excited as I'd had plenty of hopes dashed previously.
However, it's worth noting that in the three years since my diagnosis I'd only achieved platelet counts that high (in the absence of treatment) once or twice and only in November or December. This was AUGUST. Historically one of my worst months; the month I was diagnosed in because I'd about collapsed three years ago.
By late August my body, my torso really, looked different. I don't think I appreciated just how bloated or puffy I had been, but now my body looked almost in shape despite the fact that I go to the gym as often as I go to church, which is never.
At my most recent visit, my platelet count, again in the absence of treatment, came back at 90K. Color everyone surprised. My highest count since diagnosis was 91, in England in November 2011 (on a different machine), so this was extraordinary news.
Three years in, no treatment, and my ITP has the appearance of potentially clearing. I'm realistic and experienced enough to understand this could be another red herring, but this isn't a 'normal' ITP fluctuation; over the last 8 months my platelets rose, plateaued, and have continued to rise through what has historically been a bad part of the year for me. My platelets in fact, have ONLY gone up when they moved. For eight months.
Yes, there are people that are going to talk about the accuracy of the CBC machines and normal fluctuations. However, I think that if a statistical analysis were performed on this data, and machine variability levels were accounted for, a graph of my progress wouldn't change much. This is because the same machine was used in every measurement, which eliminates a lot of the variability, and a +/- of 5% of 90 is still greater than a +/- 5% of 72, etc.
What am I trying to express by authoring this? I have an absolute belief that ITP, in my instance, has occurred through an allergic response to my environment.
I also believe that I was able to narrow the cause down to either allergens from my HVAC system, a wheat/gluten allergy, or both. Interestingly, it may not have even been a direct allergy the way we think of them; for example getting stung by a bee and having anaphylaxia ensue. My ITP could have been triggered by the puffiness, which as you may have guessed was a form of systemic inflammation brought on by my wheat allergy. My ITP might have been caused by a SYMPTOM of another allergy.
I have taken air quality samples and sent them to a lab for analysis to see if any particular allergen/mold/etc can be isolated in our previous air supply, and I am also trying to have a more specific test done on my wheat allergy to see if this can be further isolated to identify a cause. However, as I've said, my ITP might even be a reaction simply to inflammation; to a SYMPTOM of an altogether separate allergy.
The more I've read about inflammation and it's effect on the body, the more disturbing I've found it. I have no expertise on the subject so I'll let you do your own research, but its pretty astonishing.
So do I think I've 'solved' my ITP? Maybe. We'll see how things go over the next year, and I will report regularly.
Why am I publishing my suspicions with an admittedly incomplete conclusion? I am doing this first because I believe that there is enough statistical data to suggest I'm onto something, even if the end result is not yet clear.
The other reason I'm writing is because I don't think I could possibly be the only person who has ITP for the reasons I suspect I do. I have no expectation that, even if I'm right about the cause of my own ITP, that this will solve it for everyone else. However, it might help somebody find a clue to theirs, and I'd rather put my data out there sooner rather than later.
I know popular opinion is that the cause of ITP isn't knowable, and that without a splenectomy it isn't curable. And maybe not even then.
I don't accept this, and going to back to my very first post, I never have. I think I may have found something, but only time will tell if I'm right. In the meantime I encourage everyone to not give up hope, not resign themselves to their fate, stay positive, and stay curious.