Tag Archives: treatments

The same but different

When healthy people talk about illness they seem to think sick people are all the same.  They have a disease with a defined set of symptoms and a set treatment plan and that’s the end of that.  Only of course it’s not.

People with hypermobile Ehlers-Danlos Syndrome are all different.  One member of the family may have mild symptoms that don’t cause them any problems (like my brother) and others may be so ill they are frequently hospitalized.  One person with hEDS may also have POTS and another not (I have dysautonomia but not POTS).  Some people dislocate joints willy nilly yet I thankfully only sublux and then not until I reached my forties.  Yet we all have the same genetic disease.

Mast Cell Activation Disorder is even worse.  I react to almost all medications, herbs and supplements but so long as I avoid high histamine foods can eat quite a varied diet.  Other people can only tolerate a handful of foods but can take as many drugs as they like.  I’ve had grade 3 anaphylaxis but never any swelling, while other people swell like a balloon.  I have seizures, other people don’t.  I get hives but no joint pain.  Other people have awful pain but no hives.

M.E. is a spectrum disorder, in a similar vein to Multiple Sclerosis.  There are those who are mildly affected and can work or raise children, while others are completely bedridden and reliant on round the clock care.  Some people sleep 23 hours a day while others are plagued with insomnia.  Some people are physically knackered but mentally fairly good, while others have horrendous brain symptoms but can walk the dog every day.  Some have swollen glands and a permanent sore throat, others don’t.

It’s easy to beat ourselves up when we read about a fellow sufferer trying a drug or treatment which has helped yet when we try it we end up ten times worse, but what works for one person simply doesn’t work for another.  I actually groan out load when I read yet another “x, y or z cured my M.E.” story in the newspaper because everyone I know will then ask if I’ve tried it, like I’ve lain in bed suffering unimaginable horrors for 24 years not bothering to try every fucking treatment known to mankind.  Or someone tells me about a hEDS patient who ran the London Marathon, the implication being that if only I tried harder I too could be an athlete (I am an athlete, cos I shower twice a week and it’s the equivalent of climbing Great Gable Fell!).

I wish I had a well defined disease which could clearly be seen on an MRI scan or under the microscope and then cured by a tablet or surgery, but I don’t and it’s that which causes suspicion.  Suspicion that I’m not, in fact, sick at all because conventional tests look fine.  And I wish I had a disease which affected me the same way it affects every other sufferer in the world, but I don’t and it’s that which causes confusion.  Confusion that someone else with M.E. can still work, or that someone else with hEDS can do pilates, so why can’t I?

I can’t measure myself against anyone else.  Although I share similarities with other patients our stories are different.  I have M.E but I also have hEDS, MCAD, HIT, endometriosis, adenomysosis and a brain injury all of which interact with each other.  My MCAD affects my M.E. which impacts my hEDS and my four weekly menstrual torture affects every sodding thing!  My inability to tolerate drugs has massive implications for treatment and effectively rules out surgery, as does my inability to be able to exercise in any form.  I’m really happy when other sufferers find something which helps but the complications of my diseases means that someone else’s saviour will probably not be mine, especially when I’ve been ill for nearly a quarter of century and irreversible damage has already been done to my body.

We are similar yet unique.

 

 

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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.

 

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’

Not all diseases are born equal

A couple of people have asked me why I was upset that EDS UK allowed the Low Histamine Chef to write an article in their charity magazine – after all, the Chef has MCAD and so do an estimated 1 in 10 EDS sufferers, so what’s my issue?

Not all diseases are created equal.  Let’s look at Diabetes for example.  There are two types: type 1 diabetes and type 2 diabetes.  In type 1, the pancreas doesn’t produce any insulin.  Type 1 diabetes usually appears in childhood and often runs in families which indicates there is probably a genetic component.  There is no cure and sufferers will need insulin for the rest of their lives.

In type 2 diabetes the pancreas doesn’t produce enough insulin, or the cells in the body don’t respond properly to the insulin produced.  It usually doesn’t appear until adulthood and is mainly due to lifestyle choices, eg an unhealthy diet, obesity and lack of exercise.  While there is no cure, changing your lifestyle can stabilize symptoms and initially sufferers may need no extra treatment other than this.

Which leads me on to MCAD.  An estimated 1 in 2000 of the general population develop MCAD in adulthood, whereas 1 in 10 of the EDS population have MCAD with symptoms often appearing in childhood.  Obviously there is something about having EDS that interferes with mast cells in a way which isn’t seen in other forms of mast cell disease.  Just like diabetes, there is a suspected genetic link to the type of MCAD seen in EDS patients which is usually absent from MCAD in the general population.  With different reasons for the mast cells misbehaving, EDS-related MCAD and general MCAD are going to need different treatments.

I’m delighted that the Low Histamine Chef has stabilized her MCAD through diet and meditation, but just like altering lifestyle won’t work in type 1 diabetes I’m unsure this approach will work for EDS-related MCAD, where the mast cells are faulty due to a genetic disease.  Yes, you can help symptoms by eating a low histamine diet, staying away from your triggers and taking medication (just like a type 1 diabetic can help their symptoms by not eating a diet which demands high levels of insulin), but it’s not going to cure you because diet and lifestyle aren’t the cause of MCAD in EDS.  However, altering diet and lifestyle in the general MCAD population might be all that’s needed to control symptoms to the point where they’re barely noticeable, just like altering diet and lifestyle might be all that’s needed to control symptoms in type 2 diabetes.

At least that’s my understanding, however I could be wrong – I often am 😉

Dr Seneviratne Lecture

I was diagnosed with MCAD and HIT by Immunologist Dr Seneviratne who, IMHO, is the only person in the UK to see if you have suspected Mast Cell Activation Disorder.  He gave a lecture at EDS UK’s 2014 conference on mast cell disease and histamine intolerance and the link to EDS and other conditions such as POTS, and EDS UK have now placed a video of the lecture in the member’s section of their website.

Below is a summary of the salient points of Dr S’s talk, most of which were discussed with me at my appointment with him in 2013.

The immune system is made up of 3 components: white cells, antibodies and complement (which helps both the white cells and antibodies to work).  Mast cells are a type of white cell which, historically, the body used to fight parasites.  However, in modern times we now come into contact with very few parasites and the mast cell hasn’t got much to do.  Consequently in some people it can start to misbehave, reacting to things it shouldn’t because it’s basically a bit bored (my words, not his!).

As an immunologist Dr S worked predominantly with people who had either allergies or immuno-deficiency, ie the immune system was having an IgE reaction to things like animal dander/pollen/nuts or under-reacting to things it should be fighting.  However, he kept seeing patients who had immune reactions, particularly to foods, chemicals and drugs, but who didn’t fit the diagnostic criteria for either allergy or immuno-deficiency.

These patients were usually diagnosed with multiple chemical sensitivity but most doctors believed the symptoms were psychosomatic as conventional allergy tests showed they weren’t actually allergic to anything, with normal IgE results, normal tryptase levels and a normal amount of mast cells.  The mast cells were, however, obviously ‘twitchy’ and reacting willy nilly to environmental situations they should just be ignoring.

Other Consultants around the world were seeing the same thing and, around 10 years ago, collaborated to introduce Mast Cell Activation Syndrome for these patients.  This is now a recognised disease entity with strict diagnostic criteria.

About four years ago, Dr S began getting referrals of patients with MCAS from colleagues working in other fields and realized he was seeing a lot of people with both Ehlers-Danlos (hypermobile type) and/or POTS.  There appears to be a link between these two diseases and MCAS but as yet no-one knows why.

Mast cells produce around 30 chemicals when they react, including histamine, prostaglandins and cytokines.  Historically, histamine has been extremely difficult to measure as it starts to break down immediately after it leaves the body.  Conventional histamine tests, where the sample sits on someone’s desk for hours, then is transported to a lab where it often isn’t tested for days on end, gives very unreliable results.  Dr S, therefore, only uses one lab to test histamine following very strict protocols.  This test measures:

  • plasma histamine
  • urinary histamine
  • spot methyl histamine/creatinine ratio
  • histamine releasing antibody

He also measures serum tryptase.  In some people, all these tests will be normal yet they will still have symptoms of mast cell activation.   In the past 12 months, Dr S has therefore arranged for serum PGD2, 24 hour urine PGD2 and leukotriene samples to be sent to the Mayo Clinic in America for testing, which often show evidence of mast cell activation even when histamine levels are within the normal range.  He also recommends a gene test for the C-kit mutation because around 10% of people with MCAS will have a faulty C-kit gene (responsible for histamine activation).

Current drug treatment options for people with MCAS are poor and much more work is needed to find more effective medications.  Current treatment consists of:

  • Second generation H1 antihistamines, which should be given in high doses, up to 4 times the level used to treat conventional allergies.  Doctors aren’t used to prescribing higher than normal doses of antihistamines, however it is safe and if they do a Google search they will see information confirming this.  Do not use first generation H1 antihistamines, such as Piriton (chlorpheniramine) as they cross the blood brain barrier and can cause serious side effects if used long term, particularly in children.
  • Mast cell stabilizers such as Sodium Chromoglygate (Nalcrom) or Ketotifen.
  • Monteleucast, which blocks leukotrienes.  This is used as a first line of treatment in the USA, but as it only blocks leukotrienes and not other mast cell mediators, Dr S prefers to try mast cell stabilizers first.
  • If all else fails, patients often try supplements such as Quercetin.  However, as there is no literature available on their safety and efficacy Dr S doesn’t prescribe these himself.
  • Following a low histamine diet is important.

Histamine Intolerance (HIT) is a totally separate disease to MCAS, although it can produce almost identical symptoms.  HIT is due to low levels of DAO in the gut.  DAO is used to ‘mop up’ the histamine we all produce when we digest food, plus any histamine contained in the food itself.  When DAO is low it can’t deal effectively with this digested histamine, which builds up in the body to produce toxicity.  Some people have MCAS only.  Some people have HIT only.  While others have both MCAS and HIT.

Some patients will test negative for histamine, PD2 and leukotrienes yet still have mast cell activation symptoms.  Mast cells produce around 30 mediators and we currently only test for a handful of these.  If all evidence points towards MCAS, Dr S will do a trial of antihistamines and mast cell stabilizing drugs and see how the patient responds.  It is recognized, however, that many people with MCAS tolerate drugs poorly, if at all.

As a patient it’s brilliant to see that, finally, MCAS is being recognised and the link between mast cell activation and EDS has been discovered.  However, there is a long way to go in terms of educating the mainstream medical profession on mast cell activation and this will include turning long held beliefs on the way the immune system and mast cells work on its head.  We also have to find more effective treatments, particularly for those of us who have mast cell reactions to currently available drugs.  “The journey of a thousand miles begins with one step.”

Long in the tooth

I’m aware I often poo pooh ideas on treating my illnesses and am dismissive of many of the latest health trends.  I may be relatively new to the mast cell disease world but I’m a long-standing veteran of the chronically ill and misunderstood disease world and to be honest I’ve heard it all before.

I’ve lived through several ‘cures’ for ME during the past two decades, including:

  • Treatment for low blood volume (whatever came of that?)
  • Treatment for Chlamydia Pneumonae (which we apparently all had, or not)
  • Treatment with Ampligen (whatever came of that?)
  • Treatment for Candida (which we apparently all had, or not)
  • The discovery of XMRV (or not)
  • Treatment for Cytomegalovirus (which we apparently all had, or not)
  • Treatment of TH2 dominance (whatever came of that?)
  • Treatment for Thyroid issues (which we apparently all had, or not)
  • Treatment with Immunoglobulin (whatever came of that?)
  • Treatment with a gluten-free diet (oh yes my friends, this ‘cure’ is not new)

and various other miracle treatments such as hyperbaric oxygen, DHEA, sublingual B12, magnesium, bee propolis, various herbs such as milk thistle and nettle, high dose vitamin C, fish oils, raw olive oil, Riboos tea, manuka honey, ginko biloba, probiotics, body brushing, cold baths, homeopathy, acupuncture, osteopathy, lymphatic drainage, NADH, L-carnitine, kamboucha tea………… and so on ad nauseum.

I don’t have to spell out that none of this shit works.

Over the years abnormalities have been found in the brains, muscles, hormones and immune system of M.E. patients yet no treatment options have ever been put forward.  That’s because no-one has the faintest clue what causes M.E. or how to make it better.

It amazes me how many people treat theories from “experts” online who aren’t even doctors (and in some cases have zero medical qualifications) as fact.  Or the results from tiddly tiny non-double blind non-randomised research trials involving 8 people which haven’t been replicated, as fact.  These ‘facts’ then spread like wildfire on the internet until 100,000 people are convinced they are……..well, fact.  When they’re nothing of the kind.

We’ve made some great medical strides in the past few years, in particular within the area of genetics, but the whole field is in its infancy.  We don’t know why one person with a gene mutation doesn’t go on to develop a specific disease, but another person without the gene mutation does.  Not everyone who gets breast cancer, for example, has the BRCA gene.  And not everyone with the BRCA gene gets breast cancer.

I’m acutely aware that, even though I’ve been diagnosed with MCAD and HIT, barely anything is currently known about these diseases.  No-one knows what’s really going on or how to fix it, and any truly effective treatment regime is at least a decade away.  Tinkering about with a low histamine diet and mast cell stabilizing drugs in no way addresses how and why the mast cells have gone awry in the first place, and it certainly doesn’t address issues such as drug, heat, cold and chemical reactions.  Sadly it’s currently all we have, in the absence of knowledge about underlying pathology, but it’s not a cure (or even a particularly successful remedy if we’re honest).

I understand the need for hope.  Hope that a cure, or at least an effective treatment, is just around the corner.  That none of you are still going to be sick like me twenty years down the line.  But I kind’ve watch the circus with a sigh and a humongous dollop of scepticism.

When a treatment for a specific disease works, it works – and it works for (just about) everyone.  Immunizations, however much some people are against them, have virtually rid the entire globe of TB, Smallpox, Diptheria and Measles.  Antibiotics, for the majority of the population, work like magic.  Insulin works for diabetics.

If a cure, or proper treatment, existed for M.E. or Mast Cell Disease we’d know about it.  Our gene expressions may all be different, but the fundamental way our bodies work is the same in everyone.  A woman in Africa pops a pain killer and it helps her pain.  A woman in the UK pops a pain killer and it helps her pain.  Even though the African woman might have knee pain and the British woman might have period pain.  That’s because the mechanism of pain is the same in all of us.  And the mechanism of the immune system is, equally, the same in all of us.

I know some of my readers think I’m just not clued up on the latest treatment options, but they’re wrong.  I read a LOT, it’s just that I discard 99% of the information because it’s from highly dubious sources, or hasn’t been corroborated, or isn’t currently a viable treatment option.  You don’t need to be a rocket scientist to know that eating fruits like blueberries and apples, and veg like broccoli and carrots, is good for you in all sorts of ways but will it cure any one of my diseases?  Hell no!  And neither will any of the other currently fashionable ‘cures’ (which, by the way, in 5 years time will be out of fashion and the next fad will have taken their place).

Yes I’m cynical.  Yes I’m jaded.  But it’s based on 20 years experience of being a founding member of the Misunderstood Diseases Club.  There isn’t a single one of my friends with M.E. from the early 1990s who is better.  Some of us have seen improvement over the years, but none of us are back at work or living any kind of normal life, despite in the early days trying every treatment option going.

So if I were to give some unsolicited advice as a Veteran of the disease war it would be this: don’t believe everything you read.

 

Have you tried….?

When you’re ill, your loved ones just want you to get better.  Hell, you just want to get better.  For this reason anyone with a chronic illness will hear the following phrase a couple million times throughout the course of their life: “have you tried…….?” (add a range of drugs, supplements, diets or therapies to fill in the dots).

I’ve been ill for 20 years, so the answer to the question is usually always yes.   The novelty of being in my sick bed wore off in the summer of 1994 when I realized all my 26 year old mates were off out on the lash, and probably the pull, and I………well, wasn’t.  I don’t want to be sick and I’ve spent in excess of £25,000 ($39,000) over the years trying to get better.  Spoiler alert: I’m still sick.

When I hear the latest “have you tried…….” I have two choices:
1. Reply “no, I’ve sat on my lardy arse for two decades feeling sorry for myself and not even thought to try manuka honey/meditation/acupuncture” or
2. I have thanks and it made me so ill I ended up in A&E, followed by 3 months in bed.  Upside is I lost 9lbs in weight puking.
They’re not replies which go down well and there’s this awkward silence where neither party knows quite what to say next.

I feel guilty for the fact the lovely person’s suggestion has actually made me worse/hasn’t worked at all.  What I’d really like to say is: “gosh, no, hadn’t thought of ice cold baths I’ll give it a try”  then ring them up a week later to say “eureka, I’m cured!”  But being as though one of my diseases is genetic and currently incurable, and one of the others gives me life threatening anaphylaxis to anything which might alleviate a single one of my symptoms, I’m guessing the Eureka moment is never going to happen.

After all this time I still haven’t found a way of dealing well with the “have you tried……”question, particularly as the other person is only trying to help.

For anyone who’s interested, I thought I’d do a list of the things I have tried.  I can’t remember every single treatment, because in the early days I had no idea I was going to be sick for the rest of my life so didn’t keep notes, but here’s a few off the top of my head:

Drugs

  • Pain relief: Paracetomol, Ibuprofen, Codeine, Co-dydromol
  • Muscle relaxant: Robaxin
  • Sedatives for insomnia: Diazepam, Temazepam, Nitrazepam
  • Hypnotics for insomnia: Welldorm, Stillnoct, Zimovane
  • Antidepressants for insomnia and pain: Amytriptelene, Dothiepin, Surmontil, Prozac, Zispin (and several others – trust me, I’ve tried them all)
  • Tryptans for migraine
  • Propanalol for palpitations
  • Hormones for period pain
  • Mefanemic acid for period pain
  • Eye drops for dry eyes
  • Decongestants for sinusitis
  • Steroid inhalers for bronchitis
  • Oral steroids
  • Laxatives for “constipation”
  • Antibiotics
  • Anti-histamines

Supplements et al

  • GABA
  • Co-enzyme Q10
  • Bee propolis
  • Manuka honey
  • Kambucha tea
  • St John’s wort
  • Fish oils
  • Echinacea
  • L-carnitine
  • Sublingual B12
  • Raw olive oil
  • Magnesium
  • Vitamins C, D, E
  • Garlic
  • Increasing salt
  • Ginkgo biloba
  • Riboos tea
  • Lemon verbena tea
  • Peppermint oil capsules
  • Various Probiotics
  • L-Glutamine
  • Arnica
  • Liquorice root
  • Essential oils (bathing and as massage oils)

Diets

  • Anti-candida (sugar and fungi-free)
  • Gluten-free (three times)
  • Dairy-free (3 times)
  • Gluten-free & dairy-free (twice)
  • High fat
  • Low fat
  • High protein
  • Low carb
  • Low GI
  • Largely Raw
  • Plant based
  • Sprouted seeds and legumes
  • Low histamine

Therapies

  • Acupuncture/acupressure
  • Reflexology
  • Osteopathy
  • Cranial oseteopathy
  • Homeopathy
  • Lymphatic drainage
  • Hands on/faith healing
  • Chiropracty
  • Massage in various forms
  • Ice baths
  • Epsom salt baths
  • Electrical stimulation
  • Graded exercise
  • Yoga
  • Tai chi
  • Meditation
  • Neuro-linguistic programming
  • Mindfulness
  • TENS for pain relief
  • Physiotherapy

You’ll notice I’ve marked some of the items in maroon.  These are the things I’ve had a mast cell reaction to, sometimes so severe it’s required hospitilization or spending months in bed feeling like I was dying.  For the most part everything else has simply had no effect.

There are a handful of things which have helped, however:

  • Acupressure reflexology points: these are found on the feet, and if I do them myself, gently, they can sometimes help with nausea and feeling ‘wired’.
  • Acupuncture: although this eventually set off a mast cell reaction, I did have some needles successful placed in my knees which helped with severe knee pain.
  • Lemon verbena tea is really good for nausea.   Sadly, the company who used to make it here in the UK stopped and I can’t find it any more (I can’t risk a blended tea cos I might react to the other ingredients).
  • I don’t know what I’d do without my TENS machine for back pain.
  • I used to swear by Epsom salt baths for tense and spasmy muscles, but I started reacting to it so had to stop.  Ditto to Arnica massage balm by ‘Weleda’ which I used to love.
  • My low histamine diet has helped reactions after eating (for which I’m eternally grateful) but not much else.
  • H2 antihistamines (which I’m currently reacting to) help enormously with GERD.
  • The thing which has been my best friend throughout my decades of illness, however, is good old heat.  Warm baths, hot water bottles and heat pads.

Note these things have helped my symptoms slightly.  Nothing has had any effect on any of my underlying disease processes.  I have made a significant recovery from M.E. as detailed in this blog post, which involved strict pacing over a number years and a shed load of luck – not a magic pill or restricted diet in sight.  My EDS continues to deteriorate and my MCAD is only barely managed with diet and antihistamines.

It’s incredibly tempting when faced with the suffering of someone we care about to tell them about your husband’s cousin’s daughter’s friend who got better from ME by dancing round a May Pole during a full moon, but my advice would be not to particularly if your loved one has been sick for a long time.  I can guarantee they know more about their illness than you do and will have pursued every avenue to recovery.  If you want to help just tell them “that sucks” and give them a hug – they’ll truly appreciate your empathy and validation of their suffering.