Tag Archives: cure

Thoughts from an old timer

My post about being clueless as to what causes disease and in particular that we can somehow eat our way better has resonated with many of you, so I thought I’d do a follow-up specifically about M.E., a disease for which there are, if you believe the world wide web, a bewildering aray of “treatments” and even “cures”, many of which are food related.

I’ve had M.E. for over twenty years and like to think I have more experience of the disease than someone who has been sick for a year or two or researchers new to the field.  In the initial phase I was so ill I nearly died.  I then spent 10 of the best years of my life in bed having seizures, puking and crawling to the toilet every day of every month of every year without remission, and the latter 14 years functional(ish) but still very poorly.  And I’m not on my own.  I have many friends who got ill at roughly the same time as me but, unlike me, are devastatingly still as sick as the day they first developed the disease.  Emaciated because they can barely eat, wasted because they can barely walk, isolated because they can barely speak.

I know that people who are currently ill think that they are the pioneers of this disease and are trying novel treatments by using oxygen chambers, drinking Kombucha tea, shovelling in probiotics, taking this drug or that drug, not eating gluten/dairy/sugar/carbs/insert-just-about-every-diet-known-to-man-here, eating worms, having enemas, drinking whale pee (just kiddin’ , in case you were wondering 😉 )………the list goes on.  But they are not.  The original ME sufferers have already been there, done that and got the t-shirt.  We have not laid in our sick bed and given up.  We have fought like cornered tigers to get better.  My parents spent over £20,000 on tests and treatments for me but none of them worked – in fact, 80% of them made me ten times worse.  Please, I beg you all, learn from our journey and stop wasting time, energy and money trying all this crap then torturing yourself with guilt because it hasn’t cured you.

Much of the research into M.E. at the moment is concentrating on fatigue and the role of energy metabolism but here’s the thing – I am not fucking tired.  I don’t know how many times I need to say it.  M.E. has nothing to do with chronic fatigue.  Nothing.  NOTHING.

When you get the flu or a really bad cold you feel absolutely wiped and barely have the energy to get to the loo.  This doesn’t mean there is a fundamental problem with your body’s mitochondria or how it uses energy from food.  It means that, for reasons as yet unknown, when our immune system is in action fatigue is a by-product.  A secondary symptom to the main event.  And so, I am utterly convinced, will be the “fatigue” associated with M.E.

I say this with such conviction because I have lived with M.E. for nearly a quarter of a century.  It started with a tummy bug, ie an immune event.  It then really took hold after gastroenteritis, an immune event.  I became severely affected following travel vaccinations, another immune event.  I saw an almost overnight remission of all my symptoms following another vaccination and these days know I’m coming down with a bug because I feel freakin’ brilliant for the 48 hours preceding it.   None of which is affected by not eating carbs or sugar, or having oxygen therapy, or taking some supplement or other, or some drug or other, nor bugger all else.  My best friend is a clinically diagnosed Coeliac, who hasn’t eaten a speck of gluten in over a decade, yet is still sick with M.E.  Another friend can barely eat and lives on an almost exclusively liquid diet, yet still has M.E.  Food is not the answer, never has been and never will be.

M.E. is an immune disease.  End of discussion.  I don’t even think it’s an auto immune disease, but an acquired immune disease.  Something external usually a vaccination or virus (the type of which is irrelevant) triggers the immune system, inbetween turning on, doing its thing and turning back off again something unknown goes wrong, and M.E. is the result.  It’s the “something unknown” bit that’s the puzzle and needs to be the focus of research.

The fact there are currently no answers is a bitter pill to swallow.  So-and-so improved after not eating sugar for six months so it has to be the cure, only of course so-and-so didn’t actually have M.E. in the first place.  Someone else discovered they had some rare infection and were cured by treating said infection, in which case they didn’t have M.E. either.  When there is no diagnostic test people are mis-diagnosed all the time, especially when some Doctors think that everyone who is “fatigued” has M.E.  And this is compounded by the fact that, until last year, severely affected sufferers weren’t included in research studies because they were, ironically, too sick to get to the Hospitals where said research was taking place.  Thank God the likes of Ron Davies has changed that outrageous situation and we might finally be looking at M.E. patients and not CFS patients.

I’m not saying that people with M.E. never improve, though it is rare.  I’ve improved for no good reason I can find.  One friend improved slightly using low dose Naltrexone, while for others it had no effect or made them worse.  Jen Brea, director of Unrest, has improved a bit with her treatment, though is still wheelchair bound and struggles to talk for long periods.  But none of us are cured and most of my friends have seen no improvement over the decades at all, despite trying every ‘treatment’ known to mankind.

I know I’m kind’ve wasting my energy writing this post, because anyone with M.E. reading it thinks that they will be the one that is the exception to the rule.  They will find the cure that the millions of sufferers that have gone before them haven’t.  So I’ll wish them luck and say I’ll see them on the other side of their journey, still sick, financially poorer, even more exhausted but wiser and finally at a place of peace and acceptance.

 

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Cure me!

I’ve written variations on this post over the past couple of years, but it’s always worth repeating for new visitors to my blog.

None of us want to be sick.  I’ve lost virtually my entire adult life to illness and it’s not a path I would ever have chosen.  I was bedridden from 26-36 at a time when my healthy friends were marrying, having children and developing careers.  I’m now 48 and I still spend 17 hours of every day in bed.  I still have no career, no partner of any description let alone a husband, live in increasing poverty and the simple tasks of every day living are a constant struggle.  It’s not much fun.

But in many ways I’m one of the lucky ones.  I developed ME in 1996 and it only took me 6 years to realize that:

  • There is no cure for ME and
  • I would be sick, to varying degrees, forever.

So when I was diagnosed with both EDS and MCAD, neither of which are curable or particularly well treatable either, it wasn’t that much of a big deal.

I have friends who, 20 years on, still can’t come to terms with the fact they are chronically ill with a disease (or diseases) for which there is no cure or really effective treatment.  I can’t image how stressful that must be.  To search for decades for something which doesn’t exist.  To not be able to find peace with your situation.  To constantly be longing for a non-existent future and, by the very nature of that, not living in the present.

That’s not to say you should give up trying things which might help.  One of my friends was bedridden with ME for 15 years before discovering that low dose Naltrexone helped her enormously and she now lives on her own with the help of Carers.  But I look at posts on the ME Association’s Facebook page from newly diagnosed people asking if L-glutamine will stop their pain, or if Lymphatic drainage will cure them and I want to scream “OF COURSE IT WON’T YOU NUMPTY.  IF IT DID NONE OF THE REST OF US WOULD BE SICK!”.  I don’t though, cos they need to come to terms with the fact there is no cure or effective treatment in their own time and in their own way.  It’s really tempting though!

In America in particular, where money buys you anything, my sick friends are often taking 2 dozen pills and potions a day and trying really weird and wacky treatments like hyperbaric oxygen and I just watch the crazyness with an aching heart.  I have friends who tried all that shit 20 years ago and, spoiler alert, they’re still sick and financially destitute to boot.  That would be because ME isn’t a curable disease, particularly if it’s complicated by other diseases as it so often seems to be.

I’m now going to get comments from people who know people who were really ill and are now ‘cured’.  This is why an accurate diagnosis is crucial.  There is no diagnostic test for ME and because of that people get diagnosed with it when they actually have a variety of other diseases.  They then try a gluten-free diet and, voila!, they’re all better.  The fact they obviously didn’t have ME in the first place never crosses their mind – they have the cure for ME and are determined to preach it to the world.  They annoy the shit out of me.  And don’t get me started on people who are cured by eating medjool dates or wheelbarrow loads of kale because they annoy me even more.  Complex neuro-immune diseases are not cured by eating an anti-inflammatory diet any more than they would be cured by 3 pints of a lager and a packet of crisps.  The very idea that diet cures disease is so bonkers I have no clue why the myth still perpetuates.  Actually I do know.  It’s born through desperation and I can understand that, if not embrace it.

I know some people with EDS who have been helped tremendously by physiotherapy or prolotherapy and I’m delighted for them.  I’ll be interested to see how that pans out when they’re 50 and menopausal though – I didn’t sublux a joint til I was 45 and my hormones did a runner.

In respect to Mast Call Activation Disorder the one thing reading Dr Afrin’s book showed me is that none of his patients were ‘cured’.  He helped some and didn’t help others no matter how many drugs he threw at them.  When you don’t know what causes a disease it stands to reason you really don’t know how to treat it, let alone beat it.

Nothing I say, however, will stop some people from chasing the dream of a cure.  In their hearts they know it’s futile but it’s become their reason for being.  Every last ounce of their precious energy each and every day will be spent on 2 dozen forums excitedly chatting to other people trying the same wacky, and pointless, treatments as them ignoring the fact there are no ‘cured’ people on the forum, or anywhere else come to that.  Chasing the cure gives them a goal, a purpose for the day when they have lost their sense of identity and reason for existing in the world.  I get it.  Truly I do.

None of us wanted this life.  But it is what it is and it’s still possible to find purpose, meaning and……dare I say it……joy in amongst the chaos and uncertainty.  For me that’s found in nature, my dog, my photography, helping my Church and my community as a volunteer from my bed, looking in on my 86 yr old next door neighbour who’s just lost her husband, blogging and hopefully helping you all wherever in the world you might be.  Focusing too much on our limitations, our pain, our suffering is unhealthy and we’re already sick enough.

We have to find a new way in this world we didn’t want or choose.  Does that mean I spend my days in a happy-clappy-zen-filled haze?  Don’t be stupid.  I get fed up, depressed, angry, frustrated, tearful, resentful, suicidal and spend a large part of every day bored out of my skull.  But then I did all that in my healthy life too – I had heartache, depression, grief, friendships which disintegrated, cheating boyfriends, money worries, time pressures and trust me when I say that doing the filing hardly filled me with job satisfaction.  It wasn’t all rose-tinted and fabulous, no-one’s life is.

“With all its sham, drudgery and broken dreams, it is still a beautiful world.  Be cheerful. Strive to be happy.”
Max Ehrmann, ‘Desiderata’

Is it curable?

Someone emailed me recently and asked “is it curable, or am I going to have this for the rest of my life?”.  Well, it depends on which disease we’re talking about, but none of mine are currently curable.  They are manageable, and symptoms will wax and wane over time, but I am sadly stuck with them for the rest of my days.

I thought it might be interesting to go through each of my diseases individually and hopefully clarify what is, and what isn’t, possible in terms of recovery:

M.E.

ME is a tricky disease to discuss because some people absolutely do recover.

Children can have ME very severely, but many go on to make a good degree of recovery.  Children’s immune systems are still immature and behave differently to those of adults.  For example, if an adult contracts Measles they have a much higher risk of death from the virus than do children.  So statistically children have a much greater chance of recovery from M.E. than adults.  Having said all that, I have friends who developed ME in their teenage years and are still severely affected and very ill 2 decades later.  No-one knows why some children recover and others sadly do not.

Some adults with more mild cases of M.E. who have had symptoms for 5 years or under also have a good chance of recovery, although  usually find they never fully go back to their pre-ME self.  But not everyone with short duration and milder symptoms recover and again we have no idea why.

The worst prognosis is for adults with severe M.E., particularly once they’ve had the disease for 5 years or longer.  Chance of full recovery is very remote (there are no statistics available, but the most educated guess is 7% of patients) but there is always hope for improvement.  I’m proof, though I have no idea why I’ve made a degree of recovery and many of my friends have not.

There are lots of claims about recovery in M.E. from this diet, or that supplement, or some other therapy and my opinion is these people didn’t have M.E. in the first place.  I’m not saying they weren’t sick, but they didn’t have what I have.  The fact there is still no diagnostic test available means that many people get diagnosed with M.E. who actually have some other disease entirely.

The answer to whether M.E. is curable is: it’s a possibility for some patients, but no-one knows which patients will recover or why.

Ehlers-Danlos Syndrome/Joint Hypermobility Syndrome

Some time ago I received a comment from a lady via my blog that her husband had recovered from his hypermobility by eating a gluten-free diet.  Got to admit I’m a tad skeptical how a gluten-free diet could possibly affect the hypermobility of a joint though I’ll take the lady’s word for it.  I know for sure diet can’t cure EDS though.

Joint hypermobility is actually quite common and affects about 10% of the general population.  It’s often found in professional dancers, gymnasts and circus performers where it’s seen as an asset and causes no problems whatsoever.  Ehlers-Danlos/Joint Hypermobility Syndrome, on the other hand, causes significant joint pain, weakness and stiffness plus a myriad of issues such as Gastro-intestinal problems, sub-luxations, dislocations, ligament tears and sprains, eye and ear symptoms, chronic fatigue, POTS, menstrual pain, hernias, prolapses, easy bruising, gum and dental problems, skin symptoms and a host of other systemic issues.    The reason diet can’t possibly cure EDS/JHS is that it’s a genetic condition.

Nothing you eat, or don’t eat, affects your genes.  Eating carrots will not turn your blond hair red.  Eating mushrooms will not make you taller.  Eating apples will not turn your brown eyes green.  And nothing you eat will repair your genetically faulty collagen.  Nothing.  End of.

Some things you eat or don’t eat can make some symptoms worse or better, ie eating salt can help with POTS issues, and different types of diet might help IBS and gut motility problems, but nothing you eat will affect the underlying disease.

The answer to whether EDS is curable is: no.

Histamine Intolerance

Most people visit my blog because they think they have either Histamine Intolerance (HIT) or a mast cell problem, but there seems to be much confusion over histamine and its role in allergies and disease.

Histamine is produced when we have allergies, eg. to peanuts.  You come into contact with the peanut, your body produces an IgE antibody reaction which triggers histamine release and you start to itch, sneeze and in some cases go into anaphylactic shock.  Many people visiting my blog actually have allergies they’re not aware of and no amount of eating a low histamine diet is going to cure them.  The only cure for an allergy is either to avoid the allergen, or to have de-sensitization therapy.  If you suspect you have some kind of histamine problem the first thing you must do is have some proper skin prick allergy testing done, by a reputable immunologist or allergist, to rule out allergies.  When I had mine I discovered I had a mild dog allergy (I have a dog!), a strong Birch tree allergy I was totally unaware of, and a Birch-related allergy to apples.  And while these allergies didn’t account for all my symptoms, they explained why I get hay fever between the months of April-June, being as though I live right next door to a Birch forest!

The next thing people visiting my blog get confused over is Histamine Intolerance v Mast Cell Disease.  HIT is caused by a lack of enzymes in the stomach (principally Diamine Oxydase or DAO and histamine N-methyl transferase or HMT) which effectively mop up histamine produced by digestion and the foods we eat.  Most foods contain histamine, just to varying degrees, and histamine is vital for digestion.  Healthy people have enough DAO and HMT to deal with any excess histamine left over from the digestive process.  People with HIT, however, do not.  This causes excess histamine to build up in the body, causing classic allergy-type symptoms.  Of course they’re not allergies, as they don’t involve an IgE antibody response, but symptoms are similar to allergies because they involve histamine.

Diet plays the most important role in managing, and ultimately curing, Histamine Intolerance.  We can stop doing things which deplete DAO and HMT, such as taking certain medications or drinking alcohol.  We can eat foods which are rich in DAO, such as fresh pea shoots.  And we can stop eating foods high in histamine such as tomatoes and seafood.  With a bit of luck and the wind in the right direction our stomachs might just restore a healthy balance and our histamine overload will become a thing of the past.

The answer to whether HIT is curable is: potentially and the cure is diet modification.

Mast Cell Disease

Mast Cell Activation Disorder is a different kettle of fish from Histamine Intolerance entirely.  No-one knows what causes mast cell disease in the general population, but we can make an educated guess about why MCAD is more prevalent in people with Ehlers-Danlos Syndrome.  Mast cells live in connective tissue all over our bodies and in EDS the connective tissue is faulty. It doesn’t have the necessary brake, which results in our collagen being overly active.  For some people with EDS this seems to result in the mast cells living within the connective tissue also becoming faulty and over-active.  Our overly sensitive mast cells then react to a whole host of environmental triggers which they should consider safe and just ignore, releasing histamine (amongst dozens of other chemical mediators) in the process.  Triggers can include foods, drugs, chemicals, changes in hormones, changes in the weather, heat, sunlight, cold, stress, emotions, lack of sleep, viral infections, bacterial infections, trauma, injuries and just about everything else!

When mast cells activate they produce histamine which gives us allergy-type symptoms such as hives, itching and swelling.  But they are not allergies as no IgE antibody response is involved.  This doesn’t mean, however, they are harmless, as mast cell activation can result in anaphylaxis and ultimately death so should always be treated as you would an acute allergic event.

When people have MCAD their bodies are chronically flooded with histamine.  Some days will be worse than others, for example it’s summer and your next door neighbour has just mowed his lawn, you’re having your period, you’ve had an argument with your other half and you had to run like mad in 80 degrees of heat to catch the last bus.  Histamine overload with knobs on.  Then you’re too exhausted to cook when you get home, so heat up some left-over chicken from yesterday for dinner and suddenly your eyes are swelling, your throat is tightening and you are struggling for breath.  Yet last week you’d eaten left-over chicken with no problems whatsoever.  Last week, however, you weren’t menstruating, were all loved up with your other half, it was only 70 degrees and there wasn’t a shed load of grass pollen floating around!

Think of the histamine load in MCAD like a bucket.  Some days your histamine bucket will be fairly empty, and you’ll have few symptoms.  Other days you will encounter every trigger imaginable and your bucket will simply overflow, making your reach for your epi-pen!

Mast cell disease isn’t curable, particularly if it’s caused by Ehlers-Danlos.  As long as our connective tissue remains faulty the mast cells living within our connective tissue will also remain faulty.  It sucks I know.

In most cases, however, symptoms can be managed.  Eating a low histamine diet means there is less histamine entering our bodies from food so our histamine bucket won’t be as full.  We can take medication to dampen down our mast cell response.  And avoiding known triggers, like stress, drugs and chemicals, helps to lessen our histamine burden.  But there are things which are totally beyond our control, like the weather, pollen and our menstrual cycle, and we just have to be aware that certain days or times of year will be problematic for us.

So the answer to whether MCAD is curable is: no, and especially not if it’s caused by Ehlers-Danlos.

At least that’s my understanding of the situation.  I’m aware there are claims online from people who have ‘cured’ their mast cell disease purely through diet and I’m thrilled for them.  None of these people have EDS though and I would be more inclined to assume they had Histamine Intolerance, which I think is potentially curable through diet, rather than mast cell disease.  But then I’m no Doctor so I could be wrong – I often am 😉