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.

 

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5 thoughts on “Long in the tooth

  1. naturallymum

    I need hope for my children, it’s what keeps me going 🙂 I have to believe there is a reason (albeit probably a very complex one), we just don’t know it yet! At the very least I don’t want it to get worse. If you start off bad at age 3 and it goes downhill from there, where does it take you?

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    1. bertieandme Post author

      Hope is what gets all all through the days. If I didn’t hope that tomorrow would be better than today I’d’ve given up donkeys years ago. But I’m also realistic about where I am now and where medicine is now. I think it’s possible to balance the two x

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  2. Glo

    Ha ha! Misunderstood diseases club! I love that. I can’t imagine your frustration. I’ve only dealt with this for 10 years and just been diagnosed. Diet seems to help me so I’m very fortunate. Waiting for summer to see how that works. Heat is definetely a trigger for my mast cells to go berserk. When you try to explain to people what you have gone through and are still going through they give you the smile and nod treatment. Nobody understands who hasn’t dealt with this. You look fine, you obviously aren’t sick. A cure would be an amazing thing and we can only hope. I understand about reading on the internet and being frustrated even more by articles etc by people who haven’t actually gone through this but have all the answers for us. I work in the veterinary field and we call it Dr. Google. It’s frightening what’s out there and what people will believe. I do want to say that I have had acupuncture for pain and it works great for me. May not work for everyone same as the foods we can eat vary for all of us. I still like the misunderstood diseases club. Will pass that on to my daughter who has fibromyalgia.

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  3. Cassandra

    Yep. I had a *very* Christian guy trying to sell me on the fact that a diet change would fix my problems several months back. He asked if I’d done raw food before, and I have (really liked it– made me feel great! But that was before The Manifestation of the diseases), and suggested that if my husband and I ate solely raw foods for the next year that I’d be so much better that essentially I’d be “fixed”. I told him that a.) we can’t afford that, we are barely scraping by as it is (not that I eat junk food– I eat well and good), and b.) the problem is in my freaking DNA. Food doesn’t change DNA. Nothing changes DNA. His reply was something about broken DNA and God’s will and getting better… something along the lines of warped DNA being part of God’s plan and that He could totally fix it with a special diet. He had also stated emphatically at the dinner table that there is no sickness on earth that cannot be cured with natural remedies. I just laughed in my head, mentally rolled my eyes, and excused myself from the table.

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