Wednesday, September 8, 2010

Unravelling a possible cause of my ITP

It seems likely that my fluctuating thrombocyte numbers are an indication of an underlying susceptibility to biotoxins (toxins produced by animals, plants or microorganisms). In my case, blood tests and nasal swabs have shown I’m quite heavily infected with two, possibly three strains of Staphylococcus – S. aureus and S. epidermidis, collectively known by the cheerful acronym MARCoNS (Multiply Antibiotic Resistant Coagulase Negative Staph).

Immune evasion proteins (biotoxins) from Staphylococcus have been implicated in chronic illnesses such as Lyme disease and fibromyalgia, by biotoxin researcher Dr Ritchie Shoemaker and could be responsible for ITP in people with genetic susceptibility to them. S. aureus, in particular, is structured to produce toxins that are directed at the two key elements of host immunity: complement and neutrophils, helping it to survive the body’s immune response mechanisms.

Toxic overload!

The latest hypothesis of why I developed adrenal fatigue, and why my platelets keep bouncing up and down, (but never as high as my doctor and I would like), is that I’m suffering from a toxic overload from these Staph infections. As they are known neurotoxins, these toxins directly affect my pituitary gland, leading to the lack of a hormone cascade that results in the adrenal insufficiency or even exhaustion. Add to this my genetic inabilities to metabolise folate and digest gluten-containing foods, and possible susceptibility to the heavy metal, mercury, contained in my old amalgam fillings and you have a recipe for chronic illness that has been gently cooking for most of my life.

Treating toxin overload

Assuming this hypothesis is correct, can we eliminate the toxin overload? My doctor and I have hopes we can, based on Dr Shoemaker’s research. First step is to attempt to eliminate the toxins from my body. This is apparently why I have such terrible bouts of diarrhoea every few weeks!

My fluctuating thrombocyte counts – up to 50, down to 42, down again to 34, and hopefully back up to 50 soon – are like the canary in the coalmine. When my platelet numbers are down, it’s usually the week that I’m having diarrhoea, the huge headaches, and generally feel like s—t, while they bounce up again the following week when I’ve eliminated some toxins, my headache is bearable or hardly there, and I’m feeling pretty good.

We’re going to try to control the diarrhoea and still aim to eliminate the toxins by using anhydrous cholestyramine, commonly prescribed for lowering blood cholesterol levels. The powder is mixed with a glass of water or juice to make a gluggy gelatinous liquid, taken two or three times a day. The cholesterol-lowering effect will certainly be handy, as the prednisone and a high meat, egg and cheese diet have certainly pushed my total cholesterol levels to dangerously high! But the main aim is to bind the Staph toxins with the cholestyramine, which is not absorbed by the digestive system, but passes out in the faeces, together with whatever it has bound.

I shall be on a regime of 8-12 grams a day of this “glug” for two weeks, then more blood tests to see what’s happening. We may well alternate the cholestyramine with doses of high strength antibiotics to attempt to wipe out the Staph infections, and these alternate fortnights of antibiotics and “glug” could last for the next two months.

Diet plays a part, too

My diet has been modified yet again, to maximise the benefits from the new regime. As there’s a possibility that some grains provide a cosy environment in the gut for Staph organisms, I am now having to avoid all grains, even rice, whenever possible. I have been allowed one or two slices of gluten-free bread a week, just to give a base for toasted cheese! I’ve packed away my bread maker for the interim, as there’s no sense it taking up bench space, and no point making a loaf of home-made bread, when a store-bought packet will keep in the freezer for a fortnight.

I’m getting used to eating what I consider a version of the Paleolithic diet, although I’m sure my hunter-gatherer ancestors never enjoyed Greek yoghurt, fresh Parmesan cheese, or olive oil! The only major problem is what to eat for breakfast? Since every meal at present must contain some protein, and there is some doubt whether I should eat legumes, it’s animal protein, and that means cooking! Breakfast is the most important meal of the day, but it also the time of the day when I’m least coordinated and functioning. Cooking porridge was something I could do pretty much in my sleep. Now I have to decide WHAT to cook – eggs, bacon, cheese, fish, left-overs - and HOW to cook it without setting the kitchen or myself on fire!

Always look on the bright side of life…

roast lambThe best thing I’ve discovered about this high meat diet – apart from the pleasure of rediscovering my British cooking roots with stews and casseroles like Lancashire hotpot – is that I can indulge my love of roast lamb with rosemary and garlic. Mmmm!!


  1. I have been known to have reoccurring staph infections; was admitted to hospital w/high temp; septic; and also diagnosed with ITP; 3 yrs. later developed staph again & treated it @ home; was seen by PCP and plates at 46; referred to hemo again 2nd time (no treatment necessary); and now receiving these maint. drugs which cud lead to other medical problems if taken long ... hemo says it is life long and I've researched; read all sorts of cases and people can go in remission; hemo said I wud be on Nplate indefinitely ... not happy with his bad communication skills; and not answering my questions; feeling frustrated and concerned at the same time ... want to get 2nd opinion; but don't know how to go about it w/out ruffling hemo and PCP's feathers ...

  2. Hi, Thanks for reading my blog & sharing your experience. It is tough to know what's helpful & what's not, & even harder if you & your haemo (Aust/UK spelling) don't have a good rapport. When my original haemo retired 3 years ago, I was delighted to be given a young woman specialist, who is very open & friendly, & patient with me & my questions. I hope you can find a more helpful one who will answer your questions and help you see what's the best course for you.

    It's true that if it doesn't resolve itself in a few months, then ITP is lifelong, & that medications to support our platelets can be damaging in other ways. It's a balancing act: the meds keep us alive, so we put up with damage that is hopefully not fatal. My daily prednisone is thinning my bones & drying & thinning my skin, so I have to manage those side-effects. Unfortunately, the cholestyramine turned out not to be the answer my doctor & I had hoped. In fact it had a near-fatal side-effect. I won't go into all the unpleasant details, but I ended up in Emergency with a perforated colon. The surgeon who operated, performing a colostomy on me, told me several times he had saved my life. He also ordered me to get back on "a more normal, high fibre diet!"