It’s over a month since I last updated this blog, and that’s because I’ve had a shocker of a time. Half the month was taken up by being laid low with a nasty gastric virus. Something that would normally take someone four or five days to recover from took me a fortnight. Diarrhoea, vomiting, shivers, and a lot of sleeping. I was not ill enough to go to hospital, but not far off, and certainly ill enough to frighten my friends and family.
An interesting result from the viral infection was the way my platelets responded. I had assumed they would drop even lower than their current level of around 45, and just prayed they wouldn’t drop below 20 – the level at which my doctor and I have agreed I’ll go back to hospital. Instead, they received a huge bounce – to 233, the highest they’ve been in the 11 months since I was diagnosed with ITP.
This anomaly is explained as my immune system being so busy fighting the virus that it left my platelets alone. This shows my spleen is producing thrombocytes in the right numbers, something we hadn’t been sure about before. Now we just have to find a way to stop the immune system munching them all up when it doesn’t have something more threatening to deal with.
Because the platelets are so high, I have been able to drop the steroid dose by 0.5mg and will take off another 0.5mg again next week. Down to 5.5mg prednisone – a little closer to getting off it altogether!
Possible link with Lyme disease
Each time I have a blood test, as well as the usual full blood count, my doctor looks for clues as to what might be causing the ITP. We’ve eliminated H.pylori and gut parasites, and we’re still treating the toxic overload. Now we’re following up on a possibility of an underlying infection of Lyme disease.
For years, medical authorities in Australia have insisted that Lyme disease doesn’t exist here, because none of the 68 species of ticks have been found to carry any of the three species of Borrelia bacteria responsible for Lyme disease. However, my doctor, among a handful of others across the country, claims that patients do have Lyme, and perhaps the spirochaete bacteria is carried by other insects, particularly spiders, mites, and perhaps also leeches.
In common with some of her other suspected Lyme sufferers, I have low levels of a marker called CD57, which the very latest research says is a definite marker for Lyme disease. Because the spirochaete can drill its way into any of the organs of the body, Lyme presents with any of a combination of at least 200 different symptoms, so people with the infection can appear to have different diseases.
At this stage, we're not going to do anything about it, as it's not definite I have the disease, and the specific test is very expensive and not always accurate, but my CD57 count and low folate and Vitamin B12 levels suggest I may have contracted Lyme some time in the past, perhaps when bushwalking in Tasmania over several years, and could still have a low-grade infection of it.
Exploring the complexity of ITP
Each fortnight, when I visit my doctor and study my blood test results with her, I learn something new. This time it was the CD57 count and what that could mean. Other times, we have had genetic test results and I’ve learned a little more about my genetic makeup and how the gene expression – for instance the MTHFR gene preventing me from metabolising folate – can create conditions which cause my immune system to struggle.
I’m fortunate that, as a medical and science journalist, I can not only understand this technical information, but that I also find it intellectually stimulating to learn new facts or theories. I imagine for some ITP sufferers, or sufferers of any serious or chronic illness, this information load could be rather daunting and maybe, depressing.
On the bright side
The cholestyramine ‘glug’ that I’ve been drinking for three weeks (with a break during the gastric episode) is having the desired effect. As well as lowering my cholesterol very satisfyingly, it is pulling out the toxins from the Staph aureus. At last my daily – and often day-long – headaches have stopped! Not only do I feel brighter, but I’m actually itching to get back to writing my short stories.
And another reason to be cheerful: I no longer have the steroid pumpkin face and look almost normal again!
Showing posts with label toxin overload. Show all posts
Showing posts with label toxin overload. Show all posts
Saturday, October 16, 2010
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…
The 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!!
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…
The 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!!
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