Well, it’s been 2 months since I last reported in this blog, and I have to say it’s been a very confusing (and somewhat depressing) period.
My last post was full of energy and optimism, even though I admitted I knew I wasn’t cured. Since then I’ve been on a see-saw, with my platelets up one week and down the next. After the magnificent 233 I had following the horrendous gastric flu back in October, they settled back down to a normal (for me) 50-60 range for a few weeks.
But once we dropped the steroids down to the borderline 5mg/day, early in December, the platelets grew skittish. Down to 25 just before Christmas, so that was Christmas and New Year wiped out, back up to 46, and then just as I was about to go interstate for a week to see my son and family in Melbourne, and my sister and friends in Tasmania, they plunged to 31. So that was the end of that little holiday!
Because of course, it isn’t just that my platelets are low. Because my pituitary is still not working properly, my cortisol readings are also way down at 50 (when they should be at 150+). Low cortisol means low energy (some days none at all), and little or no brain power. It’s back to the couch, and there isn’t even any Test cricket to watch!
As well as the platelets and the cortisol deficits, all the B cells and T cells and other components of my immune system are way out of whack too, so I have little resistance to any nasty viruses or bacteria floating around. Both Sydney and Melbourne are suffering from epidemics of whooping cough, and having had it as a child many years ago doesn’t confer the immunity I thought it would. Whooping cough immunity only lasts about 10 years, and teenagers are now given booster shots, and adults when they start families. Some medical practitioners, including my doctor, also re-immunise grandparents. Of course, I’m not well enough to risk having a ‘grandma booster shot’, so I just have to be careful – especially in doctors’ waiting rooms where there are small children!
Cordyceps – will it make a difference?
I’m very fortunate that my doctor is both a western medicine-trained GP and a fully trained Traditional Chinese Medicine (TCM) practitioner. In the past, she has prescribed mixtures of Chinese herbs to help my body cope with the effects on various organs and systems of high levels of prednisolone. Once we got down to 6mg/day, we were able to discontinue these herbs, and just supplement with daily folinic acid and vitamin B12.
However, since my adrenal glands are not recovering as fast as they should to the lower steroid dose, as shown by my poor cortisol levels, we are trying the Chinese fungal treatment cordyceps along side my other supplements. Although there are no large scale, double blind studies to show whether cordyceps works to assist the adrenals, there have been small scale trials that showed good results, and the fungus has a long association in TCM with improved chi (energy). Like all herbal treatments, it will take some time to show any results, but we should have some idea after I complete a month on it.
On the bright side
On the days when I have energy and brain power, I have the urge to write. I’ve started working on a couple of new short stories, as well as researching and writing little bits of my next novel/short story collection. My doctor is encouraging me in this effort, as opposed to looking for more income-earning writing which I might not be able to complete, as my energy drops off. When I’m working creatively, the emotional energy I get feeds back into my body, with physiological and psychological benefits, where chasing income opportunities depresses me.
The other good thing about this whole period of readjustment is trying out new recipes for my very low carb diet. On the days that I have any mental and physical energy, it’s fun looking up new ways to cook otherwise bland and boring tofu, or ways to create low-carb AND gluten-free desserts and cookies.
Wednesday, January 19, 2011
Monday, November 15, 2010
It’s good news week!
This month saw me reach my anniversary – 12 months since that strange and frightening day when I was diagnosed with ITP and bundled off to the emergency department of Sydney’s wonderful Royal Prince Alfred Hospital. By coincidence, I had my regular fortnightly check-up booked for the very day. And I was NOT looking forward to my anniversary!
Turns out this was good news day, not the doomsday I’d been dreading.
No, I haven’t suddenly been cured. No, neither my doctor nor the researchers studying ITP are any closer to discovering what causes it. And yes, my pituitary gland is still “screwed up” (to quote my doctor), and likely to stay that way, to a lessening degree, for the foreseeable future. Yes, the steroids are still threatening to tip me over into Type 2 diabetes if I don’t watch my diet very carefully, and they’re thinning my bones and my skin.
BUT, the good things definitely outweigh the bad.
On the bright side
I'm feeling remarkably well and most days have reasonable levels of energy. My platelets are sitting in their usual position around 50, but they're not causing any obvious problems. My blood pressure and haemoglobin level are fine, and the horrible gluggy cholestyramine is doing an excellent job of keeping my cholesterol down and fixing my kidney function, so my kidneys are no longer struggling.
Best of all, because I have been sticking to the no carbs diet, I am no longer insulin resistant. So, as long as I keep on keeping off carbohydrates and sugar, and get enough regular exercise, I should be able to keep the dreaded T2 diabetes at bay.
Regular exercise important for people with chronic illness.
I know regular exercise is important for good health, but the problem for people with chronic illnesses is if you have a bad spell (like my recent gastric flu episode), you very quickly lose condition. It becomes hard to do the things you could do when you were healthy, like walk up hills, climb stairs, carry grocery bags, or wash the floors.
Once again I have my local health service to thank for the opportunities to build up my fitness during this period of comparatively good health. I’ve been accepted into the RPA’s rehab gym, which is mainly for patients with lung and cardiac conditions. I started there this week, doing a little bit of gentle cardio on the treadmill and exercise bike, and some even gentler resistance training for my arms and upper body.
When, in a few months’ time, I get too fit to qualify for this gym, there is another section of the health service that offers continuing gym membership, supervised by physiotherapists, for people with chronic conditions. This service is not free, but is well worth the small monthly fee to continue to maintain and improve physical fitness in managing chronic illnesses.
Reasons to be cheerful
Apart from all the good news from my doctor and the pleasure of doing a little targeted exercise, I have learned to love my diet. Why? Because, not only am I losing lots of weight, but I now have to eat foods that will maintain my weight, and prevent me getting too thin.
Because I must avoid carbohydrates as much as possible, within reason, to defeat the steroid tendency towards insulin resistance, I need to replace the energy I would have got from eating bread, rice, pasta, porridge, cake, etc. And that means eating more fat.
My doctor has virtually ordered me to eat more cream, cheese, butter, bacon, even chocolate, alongside the serves of protein, vegetables and fruit. As she said: “You can have a lot of fun on a no-carb diet!”
It won’t be forever. When I finally get off the steroids, I will be allowed a more ‘normal’ level of carbs in my diet, and once more I’ll have to think very carefully about eating cream, butter, bacon or chocolate. But until then, boy, am I gonna enjoy my no carb regime!
Turns out this was good news day, not the doomsday I’d been dreading.
No, I haven’t suddenly been cured. No, neither my doctor nor the researchers studying ITP are any closer to discovering what causes it. And yes, my pituitary gland is still “screwed up” (to quote my doctor), and likely to stay that way, to a lessening degree, for the foreseeable future. Yes, the steroids are still threatening to tip me over into Type 2 diabetes if I don’t watch my diet very carefully, and they’re thinning my bones and my skin.
BUT, the good things definitely outweigh the bad.
On the bright side
I'm feeling remarkably well and most days have reasonable levels of energy. My platelets are sitting in their usual position around 50, but they're not causing any obvious problems. My blood pressure and haemoglobin level are fine, and the horrible gluggy cholestyramine is doing an excellent job of keeping my cholesterol down and fixing my kidney function, so my kidneys are no longer struggling.
Best of all, because I have been sticking to the no carbs diet, I am no longer insulin resistant. So, as long as I keep on keeping off carbohydrates and sugar, and get enough regular exercise, I should be able to keep the dreaded T2 diabetes at bay.
Regular exercise important for people with chronic illness.
I know regular exercise is important for good health, but the problem for people with chronic illnesses is if you have a bad spell (like my recent gastric flu episode), you very quickly lose condition. It becomes hard to do the things you could do when you were healthy, like walk up hills, climb stairs, carry grocery bags, or wash the floors.
Once again I have my local health service to thank for the opportunities to build up my fitness during this period of comparatively good health. I’ve been accepted into the RPA’s rehab gym, which is mainly for patients with lung and cardiac conditions. I started there this week, doing a little bit of gentle cardio on the treadmill and exercise bike, and some even gentler resistance training for my arms and upper body.
When, in a few months’ time, I get too fit to qualify for this gym, there is another section of the health service that offers continuing gym membership, supervised by physiotherapists, for people with chronic conditions. This service is not free, but is well worth the small monthly fee to continue to maintain and improve physical fitness in managing chronic illnesses.
Reasons to be cheerful
Apart from all the good news from my doctor and the pleasure of doing a little targeted exercise, I have learned to love my diet. Why? Because, not only am I losing lots of weight, but I now have to eat foods that will maintain my weight, and prevent me getting too thin.
Because I must avoid carbohydrates as much as possible, within reason, to defeat the steroid tendency towards insulin resistance, I need to replace the energy I would have got from eating bread, rice, pasta, porridge, cake, etc. And that means eating more fat.
My doctor has virtually ordered me to eat more cream, cheese, butter, bacon, even chocolate, alongside the serves of protein, vegetables and fruit. As she said: “You can have a lot of fun on a no-carb diet!”
It won’t be forever. When I finally get off the steroids, I will be allowed a more ‘normal’ level of carbs in my diet, and once more I’ll have to think very carefully about eating cream, butter, bacon or chocolate. But until then, boy, am I gonna enjoy my no carb regime!
Saturday, October 16, 2010
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!
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!
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!!
Saturday, August 7, 2010
No wonder I’m exhausted!
It’s been over 6 weeks since I last documented my struggle with ITP, or, more optimistically, my experience of life with this autoimmune condition. A lot has been going on over this time, most of it seemingly in slow motion, despite its obvious urgency, because of my lethargy and general sense of exhaustion.
The major event that I’ve struggled through – with the physical support of a few good friends, and the moral and financial support of my family – has been the move from my two bedroom inner-city apartment to a much smaller one-bedroom place in a nearby residential suburb. I’ve exchanged the constant roar of traffic, beeping car alarms and sirens with the sounds of lawn mowers, leaf blowers and planes taking off and landing (under the flightpath of Australia’s busiest airport), as well as raucous calls from wattle birds in the street’s flowering bottlebrush trees.
Thank goodness for all the help from my friends with this move, as I was almost incapable of any action, thanks to the constant, daylong headaches, shakiness, palpitations and just sheer exhaustion. I’m very grateful to them all!
At my last doctor’s appointment before my move, she referred me for a CT scan to check for any physical damage to my pituitary gland. We already knew from blood tests that it wasn’t producing enough of the hormones ADH (which controls kidney function), ACTH (makes the adrenal glands release cortisol) and TSH (thyroid stimulating hormone). So the adrenal and thyroid glands weren’t getting the message to produce their own hormones, and I was getting no energy.
Early this week I had the CT scan, and to everyone’s relief, my pituitary gland, and all the rest of my brain, is physically fine. No visible damage anywhere – no tumours or lesions, nothing. Phew! So, all the lethargy, etc, etc, are yet another score against the prednisone. To be fair, that medication has kept my platelets at 50 for the past three weeks, despite all the stress.
Adrenal Exhaustion
What I do have are the classic symptoms of adrenal exhaustion or adrenal fatigue. (Other names include non-Addison's hypoadrenia, sub-clinical hypoadrenia and hypoadrenalism).
Symptoms of adrenal exhaustion include:
• excessive fatigue and exhaustion
• non-refreshing sleep
• sleep disturbances
• frequent urination, especially at night
• overwhelmed by or unable to cope with stressors
• craving salty and sweet foods
• feeling most energetic in the evening
• low stamina, slow to recover from exercise
• slow to recover from injury, illness or stress
• difficulty concentrating, brain fog
• poor digestion
• low immune function
• excessive sensitivity to cold
• food or environmental allergies
We already knew I had food allergies, thanks to the single gene for coeliac disease I possess. Low immune function is not surprising, since the prednisone is deliberately damping my immune system to prevent it destroying the platelets. However, it’s not much fun that it’s apparently suppressing the pituitary and/or the adrenals and thyroid.
Treating Adrenal Fatigue
Since the adrenal fatigue is complicating matters, slowing down the gradual reduction of the steroid dose my doctor and I have been aiming for, as well as generally making life pretty miserable, we are working to reverse it. First up, my Chinese herb formula has been reworked to include larger doses of adrenal stimulating herbs.
Meanwhile, as we wait for the herbs to kick things along, my doctor is continuing her research into hydrocortisone as a replacement for prednisone. Basically a natural steroid, hydrocortisone has a slightly different action from the corticosteroids, but it can also cause some problems in the changeover period, so we are proceeding cautiously.
Heavy Metals, Pesticides, Plastics Residues, Mould?
Other possible causes or contributing factors for my general lack of oomph could be heavy metal contamination - such as mercury from amalgam fillings in teeth, or eating too much fish and seafood; pesticides; plastics residues (from plastic water bottles, takeaway food containers) or mould toxins.
There is a method of ‘detoxing’ the body to remove these contaminants that is widely used in the veterinary and agriculture industries, and has long been recognised by Traditional Chinese Medicine. It’s a series of naturally-occurring minerals, zeolites, colourfully described as “nature’s sieves”.
The honeycomb-like structure of negatively-charged zeolite particles enables them to attract and electro-chemically bond with toxic minerals and metals such as lead, copper, aluminium, cadmium, nickel and arsenic, which can then be excreted safely from the body. However, like all detox treatments, taking zeolite drops can be a strong therapy that an already exhausted system might find overwhelming, so that’s another path we’ll be treading cautiously.
Other medical applications of zeolites include stimulating the immune system, treating osteoporosis, and the healing of wounds and surgical incisions.
On the Bright Side
The best thing about the past few weeks (apart from all the support I’ve received), is that my new balcony faces north. All-day sun in the middle of winter! (On the sunny days, of which we’ve had several). I can sit out with a drink and a book, watch the birds in the trees or just lie back in my canvas chair and soak up the rays! Nothing like sunshine for lifting the mood!
The major event that I’ve struggled through – with the physical support of a few good friends, and the moral and financial support of my family – has been the move from my two bedroom inner-city apartment to a much smaller one-bedroom place in a nearby residential suburb. I’ve exchanged the constant roar of traffic, beeping car alarms and sirens with the sounds of lawn mowers, leaf blowers and planes taking off and landing (under the flightpath of Australia’s busiest airport), as well as raucous calls from wattle birds in the street’s flowering bottlebrush trees.
Thank goodness for all the help from my friends with this move, as I was almost incapable of any action, thanks to the constant, daylong headaches, shakiness, palpitations and just sheer exhaustion. I’m very grateful to them all!
At my last doctor’s appointment before my move, she referred me for a CT scan to check for any physical damage to my pituitary gland. We already knew from blood tests that it wasn’t producing enough of the hormones ADH (which controls kidney function), ACTH (makes the adrenal glands release cortisol) and TSH (thyroid stimulating hormone). So the adrenal and thyroid glands weren’t getting the message to produce their own hormones, and I was getting no energy.
Early this week I had the CT scan, and to everyone’s relief, my pituitary gland, and all the rest of my brain, is physically fine. No visible damage anywhere – no tumours or lesions, nothing. Phew! So, all the lethargy, etc, etc, are yet another score against the prednisone. To be fair, that medication has kept my platelets at 50 for the past three weeks, despite all the stress.
Adrenal Exhaustion
What I do have are the classic symptoms of adrenal exhaustion or adrenal fatigue. (Other names include non-Addison's hypoadrenia, sub-clinical hypoadrenia and hypoadrenalism).
Symptoms of adrenal exhaustion include:
• excessive fatigue and exhaustion
• non-refreshing sleep
• sleep disturbances
• frequent urination, especially at night
• overwhelmed by or unable to cope with stressors
• craving salty and sweet foods
• feeling most energetic in the evening
• low stamina, slow to recover from exercise
• slow to recover from injury, illness or stress
• difficulty concentrating, brain fog
• poor digestion
• low immune function
• excessive sensitivity to cold
• food or environmental allergies
We already knew I had food allergies, thanks to the single gene for coeliac disease I possess. Low immune function is not surprising, since the prednisone is deliberately damping my immune system to prevent it destroying the platelets. However, it’s not much fun that it’s apparently suppressing the pituitary and/or the adrenals and thyroid.
Treating Adrenal Fatigue
Since the adrenal fatigue is complicating matters, slowing down the gradual reduction of the steroid dose my doctor and I have been aiming for, as well as generally making life pretty miserable, we are working to reverse it. First up, my Chinese herb formula has been reworked to include larger doses of adrenal stimulating herbs.
Meanwhile, as we wait for the herbs to kick things along, my doctor is continuing her research into hydrocortisone as a replacement for prednisone. Basically a natural steroid, hydrocortisone has a slightly different action from the corticosteroids, but it can also cause some problems in the changeover period, so we are proceeding cautiously.
Heavy Metals, Pesticides, Plastics Residues, Mould?
Other possible causes or contributing factors for my general lack of oomph could be heavy metal contamination - such as mercury from amalgam fillings in teeth, or eating too much fish and seafood; pesticides; plastics residues (from plastic water bottles, takeaway food containers) or mould toxins.
There is a method of ‘detoxing’ the body to remove these contaminants that is widely used in the veterinary and agriculture industries, and has long been recognised by Traditional Chinese Medicine. It’s a series of naturally-occurring minerals, zeolites, colourfully described as “nature’s sieves”.
The honeycomb-like structure of negatively-charged zeolite particles enables them to attract and electro-chemically bond with toxic minerals and metals such as lead, copper, aluminium, cadmium, nickel and arsenic, which can then be excreted safely from the body. However, like all detox treatments, taking zeolite drops can be a strong therapy that an already exhausted system might find overwhelming, so that’s another path we’ll be treading cautiously.
Other medical applications of zeolites include stimulating the immune system, treating osteoporosis, and the healing of wounds and surgical incisions.
On the Bright Side
The best thing about the past few weeks (apart from all the support I’ve received), is that my new balcony faces north. All-day sun in the middle of winter! (On the sunny days, of which we’ve had several). I can sit out with a drink and a book, watch the birds in the trees or just lie back in my canvas chair and soak up the rays! Nothing like sunshine for lifting the mood!
Monday, June 28, 2010
Reality Check
One month on and my platelets have been up and down, and my emotional and physical health with them. I had a high – a record 101 three weeks ago, with ensuing confidence, happiness and denial of how serious the condition is. Thank goodness I have my psych to bring me back to some sort of reality once a fortnight!
Because of, course, as soon as we reduced the prednisone by the tiny 0.5mg, the platelets took a dive, and kept on diving for 3 weeks in a row. Down went my strength and resilience, up went the incidence of headaches and shakiness
The platelets have stopped diving, and crept up a whole two points, but at least my doctor and I are starting to recognise my immune system’s pattern. It takes three weeks or so for my cortisol levels to get up to the artificial level of the steroids, so there’s a gap when it’s below what it should be. So the platelets start dropping and keep dropping. Then, it catches up, & they turn around, & rise for 3 weeks until we do the next reduction.
H Pylori and Gut Parasites
During this month I’ve had a series of extra tests, as we cover all the angles. Following last month’s research findings on H pylori, we checked my blood for antibodies. Thankfully we found none, as I really didn’t want to add antibiotics to my pharmaceutical diet. Next, we’ve tested my faeces for signs of gut parasites that might be causing the regular bouts of diarrhoea that afflict me, and reduce my absorption of nutrients from my food. The results aren’t all back, but it seems probable that I’m clear. Which points the finger at food intolerances.
Testing for Food Intolerances
I’m already aware that I’m gluten intolerant, thanks to the presence of one gene for coeliac disease. So, I’ve - reluctantly - adopted a strict gluten-free diet, and started making my own bread – so much better flavoured (and cheaper) than the commercial stuff. Even more reluctantly, I gave up my morning serve of porridge, as even I had to admit that I could no longer digest oats. The 1/8th Scottish blood in me was sorely tried by giving up porridge, and replacing it with the less tasty and certainly less filling millet ‘porridge’.
Now, it seems my Scottish and Welsh heritage (also only 1/8th) might be to blame for some other form of food intolerance. It turns out that people of Celtic background are more prone to food problems than non-Celts. The poor Irish have the highest incidence of food intolerances in the world. So now we’re checking to see if I have the somewhat rude-sounding MTHRFR gene, and if I do, it will be off to see the food intolerance expert at Sydney Uni.
More Depressing Results Of Long-Term Steroid Use
Also during this month of tests, I had a bone mineral density check up, and yes, my bones are thinner by 5%, pushing me ever closer to osteoporosis. It seems the prednisone is drawing calcium from my bones into my blood stream, and, according to my doctor, taking a calcium supplement would simply put more calcium in blood, not back into my bones, until we can majorly reduce, or even stop, the steroids for a while.
Equally bad is the news that I now have metabolic syndrome(‘pre-diabetes’). While I knew the steroids had raised my triglycerides and total cholesterol to quite high levels, my blood pressure is well controlled, and remains perfectly normal, so I’d hoped I would escape the treat of diabetes. Well, no, I’ve developed insulin resistance. So, another change of diet, to minimise it. Now I must drop my carbohydrate load and eat even more protein – ie– at all three meals a day, and up my fat consumption to replace the energy I won't be getting from carbs. Eight months ago I was on a low fat, low protein (100 grams a meal), high carbohydrate diet that suited my lifestyle and kept me around my normal weight of 65 kilograms. Now it’s completely reversed! Thanks, steroids – thanks a bunch!!
Also this month I had a date with my optometrist, who confirmed my eyesight was worse than this time last year – by a large amount, but reassured me that it might not be permanent.
On the Bright Side
It’s winter in Sydney, which means it’s not cold by most people’s definition, the sun shines most days, and I’m enjoying rediscovering meat dishes and relearning how to cook tasty warming meals the slow cook way. And my doctor says I should eat more bacon – in moderation, of course!
Because of, course, as soon as we reduced the prednisone by the tiny 0.5mg, the platelets took a dive, and kept on diving for 3 weeks in a row. Down went my strength and resilience, up went the incidence of headaches and shakiness
The platelets have stopped diving, and crept up a whole two points, but at least my doctor and I are starting to recognise my immune system’s pattern. It takes three weeks or so for my cortisol levels to get up to the artificial level of the steroids, so there’s a gap when it’s below what it should be. So the platelets start dropping and keep dropping. Then, it catches up, & they turn around, & rise for 3 weeks until we do the next reduction.
H Pylori and Gut Parasites
During this month I’ve had a series of extra tests, as we cover all the angles. Following last month’s research findings on H pylori, we checked my blood for antibodies. Thankfully we found none, as I really didn’t want to add antibiotics to my pharmaceutical diet. Next, we’ve tested my faeces for signs of gut parasites that might be causing the regular bouts of diarrhoea that afflict me, and reduce my absorption of nutrients from my food. The results aren’t all back, but it seems probable that I’m clear. Which points the finger at food intolerances.
Testing for Food Intolerances
I’m already aware that I’m gluten intolerant, thanks to the presence of one gene for coeliac disease. So, I’ve - reluctantly - adopted a strict gluten-free diet, and started making my own bread – so much better flavoured (and cheaper) than the commercial stuff. Even more reluctantly, I gave up my morning serve of porridge, as even I had to admit that I could no longer digest oats. The 1/8th Scottish blood in me was sorely tried by giving up porridge, and replacing it with the less tasty and certainly less filling millet ‘porridge’.
Now, it seems my Scottish and Welsh heritage (also only 1/8th) might be to blame for some other form of food intolerance. It turns out that people of Celtic background are more prone to food problems than non-Celts. The poor Irish have the highest incidence of food intolerances in the world. So now we’re checking to see if I have the somewhat rude-sounding MTHRFR gene, and if I do, it will be off to see the food intolerance expert at Sydney Uni.
More Depressing Results Of Long-Term Steroid Use
Also during this month of tests, I had a bone mineral density check up, and yes, my bones are thinner by 5%, pushing me ever closer to osteoporosis. It seems the prednisone is drawing calcium from my bones into my blood stream, and, according to my doctor, taking a calcium supplement would simply put more calcium in blood, not back into my bones, until we can majorly reduce, or even stop, the steroids for a while.
Equally bad is the news that I now have metabolic syndrome(‘pre-diabetes’). While I knew the steroids had raised my triglycerides and total cholesterol to quite high levels, my blood pressure is well controlled, and remains perfectly normal, so I’d hoped I would escape the treat of diabetes. Well, no, I’ve developed insulin resistance. So, another change of diet, to minimise it. Now I must drop my carbohydrate load and eat even more protein – ie– at all three meals a day, and up my fat consumption to replace the energy I won't be getting from carbs. Eight months ago I was on a low fat, low protein (100 grams a meal), high carbohydrate diet that suited my lifestyle and kept me around my normal weight of 65 kilograms. Now it’s completely reversed! Thanks, steroids – thanks a bunch!!
Also this month I had a date with my optometrist, who confirmed my eyesight was worse than this time last year – by a large amount, but reassured me that it might not be permanent.
On the Bright Side
It’s winter in Sydney, which means it’s not cold by most people’s definition, the sun shines most days, and I’m enjoying rediscovering meat dishes and relearning how to cook tasty warming meals the slow cook way. And my doctor says I should eat more bacon – in moderation, of course!
Friday, May 21, 2010
More Thoughts on ITP
ITP has a new name, or at least a more efficient attempt at nomenclature. New research on the condition was reported in the March edition of the American journal, Hematologist. The very first news was the name change, according to Professor of Pediatrics at New York Presbyterian Hospital, Weill Cornell Medical College, Dr James Bussel.
“There is now a standard nomenclature. ITP is now immune thrombocytopenia; the “i” is no longer “idiopathic” and “purpura” is no longer part of the name,” he reported.
Well, so now the medicos no longer confess in the condition’s name that they don’t know the cause. It is now officially an auto-immune disease and perhaps they have some better idea as the original cause of the condition.
New Hypotheses on the Pathology of ITP
Dr Bussel reported that understanding the underlying pathology of ITP has changed. The old idea was that thrombocytopenia resulted from antibody-mediated platelet destruction.
Now there are two new concepts. The most developed hypothesis is that the same antibodies that mediate platelet destruction also impair platelet production by damaging the megakaryocytes (the bone marrow cells responsible for the production of thrombocytes) and/or blocking their ability to release proto-platelets.
That's one idea. Here's another: “An exciting but to-be-explored area involves the role of platelet reactive cytotoxic CD8+ cells. These cells clearly exist, but their clinical relevance is not known,” Dr Bussel reported.
Another area of intensive investigation involves T-regulatory cells, which have been reported to be deficient in ITP in several studies, but as yet there are no results.
Eradicating H pylori Infection Lifts Platelet Numbers
Some researchers have suggested than an infection with Helicobacter pylori, the bacteria responsible for causing stomach ulcers, may have a limiting effect on the numbers of platelets in people already suffering from ITP.
An article in the journal Blood in February 2009, reported on a systematic review of all the studies published dealing with H pylori infection in patients with ITP. The researchers wanted to test “whether the eradication of H. pylori infection can increase the platelet count in patients with immune thrombocytopenic purpura”, which they said was “still a controversial issue”.
They looked at 25 studies including 1555 patients, and saw a 42.7 percent increase in patients’ platelet counts from around 30 to 100, and a 53 per cent increase in patients’ doubling of platelets from around 30 after treatment to eradicate H. pylori infection.
The researchers said responses were better in countries with a high background infection of H. pylori, but concluded that “the detection and eradication of H. pylori infection should be considered in the work-up of patients with seemingly typical ITP”.
I’ll certainly be discussing a test for H. pylori with my GP!
On the Way Up, I Think
For the past two or three weeks I’ve been feeling stronger and healthier, which is a great improvement. For three weeks in a row my platelet count sat at 46, so my doctor and I reduced my steroid dose by a whisker – 0.5 mg – to 7mg a day.
The following week the count dropped to 32. I thought this was a disaster, but my doctor was much calmer. All my other blood chemistry was good – haemoglobin back to normal, non-anaemic levels, kidney and liver functions good, and the cytotoxic leucocytes – the white blood cells eating up my platelets like Pac-Man in my bloodstream – were back down to a normal level. She tweaked my Chinese herbs some more and cautioned calm.
This week, the platelets have crept back to 36, and my physical energy and brain power are both at about 70 percent of what they used to be. I feel scarily normal, and will have to work hard at not working hard – that is, pacing myself to take lots of rests, do as much exercise as I can without tiring, and enjoy time with friends. Although I feel capable of working, I must be aware that I’m not 100 percent.
Meditation and Staying in the Now
In the past couple of weeks I’ve started seeing a psychologist to help me with depression – a normal side-effect of a chronic health condition, which is apparently exacerbated by the steroids. After a couple of sessions discussing the meaning of life (the old ‘why me?’ cry, when struck by crisis like diagnosis with a potentially life-threatening illness), we decided that what I needed was help with focus. Staying in the now.
So I have a cd with meditation exercises, and as well as going for a walk every day, I must now sit down quietly for at least 10 minutes and try to still my anxious, chattering mind. I know from reading about meditation that it can help lower blood pressure. I wonder if there’s any study done into the beneficial effects of meditation on platelet counts?
“There is now a standard nomenclature. ITP is now immune thrombocytopenia; the “i” is no longer “idiopathic” and “purpura” is no longer part of the name,” he reported.
Well, so now the medicos no longer confess in the condition’s name that they don’t know the cause. It is now officially an auto-immune disease and perhaps they have some better idea as the original cause of the condition.
New Hypotheses on the Pathology of ITP
Dr Bussel reported that understanding the underlying pathology of ITP has changed. The old idea was that thrombocytopenia resulted from antibody-mediated platelet destruction.
Now there are two new concepts. The most developed hypothesis is that the same antibodies that mediate platelet destruction also impair platelet production by damaging the megakaryocytes (the bone marrow cells responsible for the production of thrombocytes) and/or blocking their ability to release proto-platelets.
That's one idea. Here's another: “An exciting but to-be-explored area involves the role of platelet reactive cytotoxic CD8+ cells. These cells clearly exist, but their clinical relevance is not known,” Dr Bussel reported.
Another area of intensive investigation involves T-regulatory cells, which have been reported to be deficient in ITP in several studies, but as yet there are no results.
Eradicating H pylori Infection Lifts Platelet Numbers
Some researchers have suggested than an infection with Helicobacter pylori, the bacteria responsible for causing stomach ulcers, may have a limiting effect on the numbers of platelets in people already suffering from ITP.
An article in the journal Blood in February 2009, reported on a systematic review of all the studies published dealing with H pylori infection in patients with ITP. The researchers wanted to test “whether the eradication of H. pylori infection can increase the platelet count in patients with immune thrombocytopenic purpura”, which they said was “still a controversial issue”.
They looked at 25 studies including 1555 patients, and saw a 42.7 percent increase in patients’ platelet counts from around 30 to 100, and a 53 per cent increase in patients’ doubling of platelets from around 30 after treatment to eradicate H. pylori infection.
The researchers said responses were better in countries with a high background infection of H. pylori, but concluded that “the detection and eradication of H. pylori infection should be considered in the work-up of patients with seemingly typical ITP”.
I’ll certainly be discussing a test for H. pylori with my GP!
On the Way Up, I Think
For the past two or three weeks I’ve been feeling stronger and healthier, which is a great improvement. For three weeks in a row my platelet count sat at 46, so my doctor and I reduced my steroid dose by a whisker – 0.5 mg – to 7mg a day.
The following week the count dropped to 32. I thought this was a disaster, but my doctor was much calmer. All my other blood chemistry was good – haemoglobin back to normal, non-anaemic levels, kidney and liver functions good, and the cytotoxic leucocytes – the white blood cells eating up my platelets like Pac-Man in my bloodstream – were back down to a normal level. She tweaked my Chinese herbs some more and cautioned calm.
This week, the platelets have crept back to 36, and my physical energy and brain power are both at about 70 percent of what they used to be. I feel scarily normal, and will have to work hard at not working hard – that is, pacing myself to take lots of rests, do as much exercise as I can without tiring, and enjoy time with friends. Although I feel capable of working, I must be aware that I’m not 100 percent.
Meditation and Staying in the Now
In the past couple of weeks I’ve started seeing a psychologist to help me with depression – a normal side-effect of a chronic health condition, which is apparently exacerbated by the steroids. After a couple of sessions discussing the meaning of life (the old ‘why me?’ cry, when struck by crisis like diagnosis with a potentially life-threatening illness), we decided that what I needed was help with focus. Staying in the now.
So I have a cd with meditation exercises, and as well as going for a walk every day, I must now sit down quietly for at least 10 minutes and try to still my anxious, chattering mind. I know from reading about meditation that it can help lower blood pressure. I wonder if there’s any study done into the beneficial effects of meditation on platelet counts?
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