ITP Update

I've got a stack of emails in my inbox asking how I'm doing on my ITP-busting mission. There aren't many things people email me about, but that is one of them, and it's always nice to hear from others that are on the ITP rollercoaster. Hello!

So, how am I doing? Have I managed to 'healthy live' myself into a drug-free remission?

Not really. But, I'm doing ok.

It's been nearly four years since I found out I have ITP. At first I thought I contracted it after suffering glandular fever in 2009, but in talking with family, I now think that I may have had it since childhood.

I particularly remember at times my legs and forearms being covered with bruises and people asking me if I'd fallen off my horse. I remember being inexplicably fatigued, unable to keep up in cross-country runs, falling asleep in high-school. So.. who knows?

The only normal platelet test I have on record is from 2003, and that was 173,000. The normal range for platelets is 150,000-450,000, so, 173,000 is low-normal. In 2009 my platelets were at 100,000, and at the end of 2012 they were also 100,000, rising to 107,000 a few months later. Since then, it's been mostly downhill. My most recent tests (approximately every 3-4 weeks) have been 57,000, 54,000, 67,000, 57,000. Since August 2014 all counts have been between 54,000 and 85,000.

However, over the years, I have seen a few trends, things that 'possibly' correlate with either lower or higher platelet counts. As you can imagine, I've tried quite a few things over the past four years, nearly everything that anyone suggested might help platelet count or immune system modulation. 

Things that seem to help:

* Vitamin C intake at about 5g a day

* Probiotics, particularly lactobacillus rhamnosis

* Turmeric

* Gluten-free diet

* Consistent strength exercise and (especially) yoga. The count of 173,000 in 2003 was when I was training for a bodybuilding competition. I was very, very fit.

* Lower body fat levels

* Minimal intake of caffeine and alcohol

* Maca powder
* The 'happiness factor'. I'm going to elaborate on that later in this post

Things I'm on the fence about (i.e. seemed to help at first, but the effect was not sustained, or I didn't keep it up):

* High dose vitamin D (first count after starting it was 95,000, next was 75,000)
* Vitamin E supplementation
* Intake of dairy products. Whey protein does seem to increase my counts: at my highest counts I was was drinking it every day, and I have a personal theory (i.e. I've seen no science on this) about the immunoglobulins in it. These can confuse the immune system temporarily (this is how an IVIG infusion works) and I'm not sure if that's a good thing for someone trying to reduce a particular antibody.  I've been off dairy for about two years now, but it's filed in my brain as something to investigate further.
* Grape seed extract and green tea (this was part of a diet designed to influence the Th1/Th2 balance, but I did not continue with it as it didn't seem to be working, and was really complicated)
* Boswellia (I want to try this again, but was using a product sample and ran out)
* Vitamin A (I'm trying this now)

* Alcohol and caffeine abstinence (no difference between complete abstinence and a 'now and then' approach although counts trend higher when I'm not addicted to caffeine)

* Digestive Enzymes
* No added salt (hated it, didn't keep it up)

* Higher protein intake (generally higher counts, but I've also had a few high counts on a lower protein diet. Consistently higher counts have been with higher protein intake.)
* Eating shellfish (mussels, oysters)

* Exotic mushroom extracts (Reishi, Shitake)

* Fermented foods (When I'm drinking a lot of kefir and kombucha counts trend lower, but it might be coincidence)

* Plant-based/vegan diet (my lowest counts happened when I started a plant-based diet, but I've also had a couple of unexpected spikes into the 80's)

* High dose K2 (I think this has no effect, but I've only been on it for two months)
* Low fat diet
* Intermittent fasting (This had a slight positive effect, but it triggered some binge eating after a few months).

Things I think had no effect:

* Paleo Autoimmune diet (however, this was super useful as it removed suspicion from everything excluded: all grains, legumes, seeds, nuts, dairy and eggs)
* All other strict exclusion diets, with the possible exception of gluten

* Omega 3 supplementation

* Papaya leaf extract (had high hopes for this one...no effect)

* Sesame seed oil

* Mastic gum
* Juicing and smoothies

Things which I'm pretty sure lower my count:

* L-lysine supplementation (have tried it a few times, counts dropped each time)

* Regular gluten consumption

* Complete alcohol abstinence (yes, weirdly, but I've also had a few spikes while alcohol-free. I think alcohol abstinence has coincided with times when I've been trying to adhere to a diet as pure as what a monk on a mountain would eat. That is: making myself miserable)

* Melatonin 

* Ketogenic diet
* Low protein diet (?)

And the one thing which I know lowers my count:

* Stress! It's so bad for you!

As for symptoms, there are two things that seem to affect my symptoms without affecting my platelet count (i.e. they affect function of the platelets I do have), and those are:

* Green vege intake (vitamin K1 intake, I'd say). More = fewer bruises and bleeds
* Alcohol.

A combination of stress and too many wines in the evenings can be relied on to see me wake up one day looking like this:

Forearms, elbows, knees and hips are my bruisy places, and sometimes the tops of my hands. I used to hide them but now I don't care. All my friends know what its about.

Keep in mind that we are dealing with three things here: platelet destruction by the immune system, platelet production by bone marrow and platelet function. As I cannot get an antibody or platelet function test every week ($$$), it is impossible to really know which aspect of ITP is being affected by anything!

Lastly, as I only test every 3-4 weeks, I could just be catching some random ups and downs. In other words, as regards all of the above:

However......

There is one other thing that I feel confident about, and that's the previously mentioned 'happiness factor'. I keep pretty good journals, and it's clear that higher platelet counts have correlated closely with times of my life when things were going well, and I was feeling happy, optimistic and relaxed. These were times when I'd say I felt most like the 'me that I want to be' and had things to look forward to.

A few things happened between highest and lowest counts. For a start I injured my shoulder, which stopped my daily yoga practice, then I injured my back, which stopped all exercise for a while.  Then I came under some stress with my university research project, said 'yes' to too many volunteer activities, experienced unrelenting time pressure and had that feeling where life is squishing the joy out of your soul.

I also realise in retrospect that I created stress for myself by trying to micromanage my nutrition.  At times it has seemed that the harder I try, the more I restrict my diet, the lower my counts get. I don't think that's because of what I was eating, or not eating per se, but because I was getting tizzy three times a day about food. I was going down the deep dark rabbit hole of trying to find a food trigger for ITP: 'omg, it's gluten! no, it's PUFA's! maybe it's nuts and seeds! maybe it's eggs! it could be grains! it could be red meat! starches? sugars! plant toxins! etc etc... etfreakingcetera'. It was much better to eat delicious meals with fresh ingredients and just chill out about it all.

Ok, what now?

What I'm doing at the moment is just getting myself back into a generally healthy low-stress lifestyle and mindset. Nothing complicated.

* Healthy nutrition, mostly plant-based, whole foods, things I like
* Reduced alcohol and caffeine to 'now and then' (alcohol is no problem, caffeine is a  WIP as I'm currently very addicted (yes, again... you may judge me harshly for this, I deserve it)).
* Exercise (2-3 days weights, 2-3 days yoga)
* Time management and time out
* Sleep 8-9 hours a night
* Positive self-talk (sounds very new-agey doesn't it? Works for me though)
* Fun and relaxation
* Avoiding stressful interactions, including online (Facebook groups... ugh... why do I do it to myself?).

I'm also going to try a few things that I think raised my platelet count, but in a more coordinated manner, starting with the vitamin C (5-10g a day) and lactobacillus rhamnosus. I'll continue that April to July, see if anything changes and get back to you.

That's it, apologies for the novel, but there's a lot to say! If you are an ITPer, please comment me below, let me know how you are doing, and if you've found anything that helps / doesn't help.

Next weekend I think it's time for a recipe. :) I'll write another ITP post at the beginning of July.

Kale - how to eat it before it turns yellow in your fridge + ITP

Before saying anything of use, I'll explain why I'm a half-asleep zombie person today.

This... little....

What you see above is the naughtiest feline in the world.  He's completely nocturnal, and absolutely fascinated with making noise. 

Last night he had a particular fascination with the cat inside the bedroom mirror. Our mirror is large and hangs from a picture rail. When he attacks the mirror cat, the mirror collides with the wall, waking all humans. Jase then throws a pillow, Mog zooms away and starts.. oh, I don't know, tearing up the garbage bag, or jumping around in the recycling until an irate human gets up to play. 

Then morning comes, the humans stagger along to their jobs and Mog settles down to replenish his energy. 

Having explained the baggy eyes, which you'll have to just imagine, I'll get on with explaining how I fulfill my weekly kale eating quota. I eat a lot of kale. Or, I try to, because I notice a firm difference in my ITP bruising symptoms depending on how much of it I manage to get inside me, vs. how much slowly wilts and bleaches in the fridge. 

A couple of weeks without slamming the greens and I begin to look bruisy, especially if I've had a few glasses of wine. I don't want to gross you out, but for your education, here is what I mean. These are ITP bruises. They just happen. No impact, no pain, just random bleeding under the skin for no good reason. When I eat enough kale, spinach or broccoli, I just do not get these large bruises, although I might get little ones that nobody notices. Here are an arm and a leg. Don't panic, these are gone  now. This happened after I'd been away at uni and missed my big weekend shops.

It seems reasonable to assume the bruise fluctuations are related to vitamin K intake, although I may well be changing something else when I eat more kale. Vitamin K, which is abundant in kale and other greens, does not seem to increase platelet numbers (although some on the ITP Facebook page say that it does for them), but it does increase blood clotting effectiveness through its pro-coagulant activity. The anti-coagulant Warfarin works by lowering the levels of active vitamin K, and this is why people taking it have to keep their vit K intake consistent. 

Vit K also has a number of other beneficial effects on bone, vascular health and brain health. As the vitamin K in veges is primarily K1, I also take a K2 liquid supplement.

I eat two or three large bunches of kale a week. Here's how I do it.

Get kale at the market. It's also very hardy and easy to grow but my garden is currently 'going wild'. I devote about 1 hour on a Sunday to kale prep. I wash it. remove the tough stalky bit, chop it and boil it until soft.

Then I pack it into the cups of a silcone muffin tin, water and all. To about half the cups I add some olive oil. Fats increase the absorption of vitamin K because it's a fat soluble vitamin.

Then I freeze it.

Once frozen, the kale pucks are easily popped out of the tray for storage in the freezer.

Then, before use, they can be defrosted just by leaving on the bench.

Edit... I have recently found that this is not always safe for the kale.

Do cats eat kale?  It must have been a cat....

The defrosted kale pucks are good for omelettes, added to patties, or anything where you'd use cooked kale or spinach, for example.. a pasta. Sometimes I just heat and eat.  The pucks without olive oil can be thrown in a smoothie.

Even if you don't have medical motivation to eat all your kale, I think this is a handy way to cut back on spoilage and fridge space. Easy peasy.

I hope that's a helpful tip for you. I'm also very interested to hear from any ITP'ers that have discovered any nutrition changes that affect either your platelet count or your symptoms.

And, with that, I'm off to bed. I'm going to try locking Mog in the lounge.  It's tough because he's a master of persistence and I fear he may spend all night tearing up the carpet trying to get under the door.

... earplugs.  ;)

Avocado Breakfast Bundle

Here's a breakfast idea!  It takes only a few minutes and kept me full until lunchtime (quite an achievement).

Obviously, the base is half an avocado, stone removed.

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Calories in an avocado.  Before going on, let's take a moment to dispel a few myths about this awesome fruit.  Some of my clients are avocado-phobic because they have heard that eating an avocado leads straight to fat-butt hell.  Let's put this in perspective.  Half an avocado is somewhere between 80 and 170 calories, depending on the size of it.  About the same as a wrap or half an english muffin, but yummier and with a whole lot of nutrition. Don't be scared, just be smart.

                                                 *********************************

The filling is an egg fried in coconut oil with a few slices of strongly flavoured handmade cheese from my man Emilio at the Opawa Farmer's Market (I wish I could be more specific, but there is no label). I have re-embraced dairy lately as it seems to have a positive effect on my platelet count (currently up to 95,000, yay!).  Perhaps it's the vitamin K2?

Looking at how my body responds to dairy is an interesting study in how one food might cause percieved 'negative' and 'positive' effects concurrently, depending on what you are trying to achieve. When I was completely and pedantically dairy free my singing voice improved noticeably and I gained 3 whole tones at the upper end (that's huge) but my platelets went into freefall. I'm still trying to figure out the platelets.  It might not be dairy that's helping. It might be more eggs, it might be vitamin D, it might be mastic gum or digestive enzymes, it might be hugs from Miss J. It might be red wine (please, please, please...) Eventually, I hope to nail it.

On the top is basil pesto, also from the market.   I didn't cook the avocado, just piled the yummy stuff on top and ate it at my desk.

Give it a go.

For a giggle: read the reviews on these evil gummy bears. Does anyone know what the sweetener is? Maybe Xylitol?

:D

The New ITP Protocol

Isn't this pretty?

Platelet building smoothie: spinach, berries, banana, coconut milk

Since the underwhelming impact of a 30-day paleo autoimmune diet, I've spent extraordinary amounts of 'some' time researching Idiopathic Thrombocytopenia Purpura (ITP). I've been reading papers, bugging experts and stalking forums, trying to determine what sort of lifestyle could maximise my platelet levels.  I'm not aiming for high platelets. The lowest end of normal would be just fine.  Let's set the goal at 150,000. If I get there, I'll buy myself one of these and throw a platelet party:

Source

It's a fluffy platelet toy!  You know, I think I'm just going to get one anyway. How cute.

It's encouraging to find that remission without drugs is not unheard of.  That's good. However,  as usually happens with natural healing, it's never the one thing that works for everyone.  There are a few themes emerging though.  Generally it seems that ITP people do better on lower and lighter protein levels than what I've been eating. That is, less red meat, more fish and white meats.

There is a lot of agreement that platelet levels do not respond favourably to a low-carb diet. I also found a study showing that a ketogenic (very low carb, high fat) diet is terrible for platelet levels, even if you don't have ITP. It's also agreed that more veges (especially vit K packed green ones) = healthier platelet levels and most people notice that stress and alcohol cause platelets to flee.

I'd say it's pretty obvious what I need to do: eat more veges (I'm thinking something close to the Wahls protocol: 9 cups a day), keep protein moderate, carbs at about 150g a day and live a very relaxing lifestyle that proscribes stress, worry and alcohol. Nothing too unexpected there.

Raw smoothies are my friend.  It would be great if the pretty colours could make a sort of rainbow smoothie, but.. it just turns brown when blended. Very disappointing.

As well as vege-ing it up, I've been looking into supplements. I'm taking papaya leaf in capsule, liquid extract and herbal tea form, but I'm on the fence about the potential benefits. Papaya leaf is an Indian remedy for low platelets and immune regulation that seems to work spectactularly for some people, and not at all for others. There are a few studies, like this one, showing platelet increases in mice, and a few more that concentrate on the low-platelet after effect of dengue fever, but I wouldn't say the scientific basis is strong. There aren't any papaya leaf studies that have addressed ITP of unknown cause.

I'm going to try that papaya leaf for three weeks and see what happens.  I like to exercise caution with herbs: like any medicine, you can overdo it.

The only nutrient that consistently recurs in my readings and in interacting with smart people that know stuff, is Vitamin D.  This (below) is the one I'm taking, and at the moment I'm on 50,000IU a week.  I'll have a test in a few weeks to see what my levels are, but as I'm sun phobic (wrinkles!), I would not be surprised if I'm deficient.  

Vitamin D is not truly a 'vitamin' but acts more like a hormone in the body.  It is a well documented regulator of the immune system and also has a role in healing and preventing leaky gut through increasing expression of the proteins that seal up the 'tight junctions' in the intestine.

More readings on vitamin D (thank you Andre!)

An overview of sunlight, vitamin D and autoimmunity (full article, a very good read - it discusses one case of ITP).

Two case studies of ITP remission with high-dose vitamin D (they were also taking hydroquinone, but suffered relapse if the vitamin D was removed from their protocol).

Side effects of vitamin D overdose (and why it's better to sunbathe, if possible)

I'm also taking magnesium, and attempting to increase my intake of vitamin K2. 

And again, the waiting game.... blood test next Friday.  

Edit: Result - no real change. Last three months have been 75,000 / 77,000 / 73,000

Apricot Chicken (AIP, Paleo) + Reflections on Thrombocytopenia

Let's Eat!! If you don't like this recipe, well, I'm not sure we can be friends (unless you like chocolate, and wine, then it's probably ok).

Paleo Apricot Chicken

Click Here for Printable Recipe

This is a recipe borrowed from my friend Beatrix. It's the one she sweated over to make AIP compliant when we ate together recently. I swear, it is delicious.

Ingredients:

(makes 5 servings)

* 6 chicken breasts, skin off
* 3 tablespoons coconut oil
* 3 chopped onions
* 1 can coconut milk. I used AYAMS - net weight 270g
* 1 can of apricots in juice (this was 400g net)
* 1 tablespoon cider vinegar
* salt to taste
* fresh or dried herbs - I used a large handful of fresh thyme, savory and oregano, finely chopped

Method:

* Melt the coconut oil in a frypan and sear the chicken on both sides, sprinkle salt on each side.

* Transfer the chicken to an oven pan and put in the oven to cook at 180C. It is ready when cooked right through.

* In the same pan from which you just removed the chicken, sautee the onions until softened, then add the apricots (including juice), vinegar and herbs. You can add a little more salt if required.

* Let the apricot concoction simmer for 10 minutes, then turn down the heat to low and stir in the coconut milk.

* Return the chicken breasts to the frypan and swoosh them around until they are covered with the sauce.

* Serve.

Just for you, I did crunch the stats. This is per breast, with about 1/5 of the sauce.

Musing... I was reflecting today on the way that positive things so often emerge from what seem like negative situations or conditions. 

Obviously, at the moment I'm reflecting on my immune thrombocytopenia, reading my way through a pile of research and becoming immersed in the process of discovery. Like other autoimmune problems, the studies can't agree on the causes, but there is an 'shrugged consensus' that there is 'probably' genetic susceptibility + something that starts the process (e.g. a viral infection) + an ongoing environmental trigger. The last point is hotly debated. However, conditions like celiac disease support the 'trigger' theory - removing gluten and related proteins usually results in celiac disease remission.  There may be environmental triggers for other autoimmune conditions, but discovering them is time-consuming and not attractive research (no big drug money to be made).

"Environmental" could be anything, including, but not limited to foods.  Kek suggested that I might be triggered by housework and I've really taken that on board.  No more housework; it's almost certainly bad for me.  If that works, instant scientific renoun. ;)

Come to think of it, have truer words ever been spoken?

Sorry, where was I? Thrombocytopenia.

In terms of treatments that work, there are steroid drugs, which I hope to never need, and surgery (spleen removal), which seems pretty damn radical, and doesn't always work. There are a few random studies (mostly case studies, although there are a few mouse studies) suggesting that Chinese or Ayurvedic herbs and/or high-dose vitamin D may help - I'll be trying these.  I'm very grateful to Seth Roberts (PhD, author of the Shangri-La Diet), who posted my plea for help on his blog. The information I've received from his readers has saved me months of research and given me a much needed boost of confidence. 

My plan is to intelligently try those research-based ideas in an organised manner until something works, or I feel I've exhausted all options.  It's not in my nature to sit back and accept that nothing can be done, and in any case, it really is about the journey, isn't it?  When I think of some things I have deliberately 'lost': eating disorders, excess weight, arthritis, acne, what I feel most is a sense of gain through the process: knowledge, friends, confidence, skills, understanding and many adventures. And that's just the health related stuff.  I think the principle stands for other challenging life experiences too.

I think that's enough philosophising for a Thursday.  Let's make that apricot chicken recipe and get some eating underway!