ITP: a work in progress

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!