Saturday, February 20, 2010

Living with ME/CFS, Fibromyalgia and the Marshall Protocol

I can't believe how fortunate I am! Coming back from the UK, I had no idea what to expect. I hoped that getting sun, fresh air and swimming would  help. I expected that living in a kinder environment would also have its positives. I knew I had Fibromyalgia (FM) as I had been diagnosed with it a few years ago in the UK. Unfortunately they didn't have much to offer me there in the way of treatment and I was told just to go away and live with it. That isn't my way though, I didn't believe I should have to continue to live with it. I wanted answers.

There were good days. Sometimes there were good months. I could keep on going for a bit, then I'd do something - like come home for a holiday - then spend months trying to recover. When I had energy I would throw myself into lots of things - out of the sheer pleasure of having energy to do so - then paying for it a month or two down the track. Being diagnosed and treated as hypothyroid also helped for a while.

It's not just feeling tired, it's waking up feeling like you had run a marathon in your sleep, your legs become so weak you can barely stand, and just the effort of taking a shower sends you back to bed. The tiredness creeps into your bones. The world seems wonky. Your brain is cotton wool. Thoughts  disappear into blankness, you can't remember what you were planning to do a few minutes ago. You feel nauseous all the time and your stomach is just not happy. Sleep is unrefreshing and when you have to work you become anxious about being able to make it through the day as you'd only had a couple of hours sleep the night before. Everything seems too loud and too bright. You can't bear the stimulation. Your personality changes as a result. You do think 'maybe I'm just mad'. Your life shuts down as you just do what you can cope with - not what you really want to - not what inspires you. You feel misjudged and start to wonder if there is something so wrong with you psychologically to let this keep happening. I spent a year in therapy, just to make sure, and couldn't have had too much wrong as I am sure my counsellor looked like she wanted to fall asleep half the time!

Eventually my GP in the UK insisted I stop working for a while. Not given much choice as I knew I was losing the capability to do a good job, and not being able to walk far, I stopped for a while. With no treatment plan in sight, I felt frustrated. Having a disease that isn't obvious, leads to lots of assumptions from others which make the resting period not so restful. It would be so much easier if it was obvious! There is so much misunderstanding out there about these illnesses and many times I was told 'just get over it' or 'you're making it up' or 'maybe you need a psychiatrist' or ' you don't pray enough' and 'you should exercise more' and other such crap. Oh if it was that easy! Because it was such a nebulous disease and not 'obvious' I did doubt my sanity. I kept trying to push through - to be stoic - which I regret now as it has just made things worse.

Coming back here in October, I started to do things I enjoyed again - going to the beach, learning to dance and socialising with old friends. In November I took my flatmate out on a 2 hour walk (I had started walking every day and seemed to be managing it well), we went swimming and chatted. It was a happy day. I was relieved to be home and excited by the future. The next day I woke up and could barely move, I looked white and spaced out. My brain took a holiday. I could barely speak. I couldn't find words and the ones I did find were wrong. I stuttered and blanked out in the middle of conversations. I had vertigo and felt sea sick lying down. I nearly passed out on a daily basis. Oh God, I thought how can this be happening again? It was like before, but worse.

Fortunately, I had been to see an iridologist a few weeks before and after examining me she insisted I get medical attention. She said my immune system was shot to pieces, my thyroid was not happy,  there was threat of a stroke and a heart issue. I thought how on earth can I go to a GP and say all that - who would take it seriously? I didn't know if I took it seriously!  I asked her if she had knowledge of a GP who would be open to talking to me about all this. She put me on to my current GP. I had an appointment to see him the day I crashed. I was nervous seeing him for the first time as when presenting with these kind of symptoms before I had at best been patronised, at worse treated with pure contempt. But this lovely young man was like no other GP I'd ever met. I was so amazed by his calm ability to process everything I had told him.  He also understood instinctively what I had been through in London with work, and could see that I was not only physically sick, but spent on every level.

My GP suspected CFS (Chronic Fatigue Syndrome) which upset me at first because I thought his next step would be to refer me to a psychiatrist. Chronic Fatigue Syndrome feels to me like a belittling term -  it's certainly not just being chronically tired. I was so suspicious of these types of syndromes because of previous experiences. But my GP firmly told me he believed it was caused by a systemic infection and break down of the immune system (so the iridologist wasn't wrong after all).  I was relieved when he discovered things scientifically. By saying that I mean that the blood tests he took came back to prove to him, and me, that I did indeed have what's called a TH1 inflammatory disease. He tested my 1,25D levels and described them as 'screamingly high'. He called it 'hypervitaminosis D'. He didn't at that stage mention what I would be in for, he just told me to go away and research it. I was thrilled.

Why on earth would I be thrilled? Am I a hypochondriac that finally had something real to be concerned about? Do I do it for the attention? Well in short, no. I was thrilled because I could finally assuage my fears about going mad. I can listen to people's disbelief about ME/CFS/FM being 'real' and know that in my heart of hearts it is a real illness - with real causes and real symptoms - and let them deal with their own ignorance in their own time. I certainly don't get any more attention than when I was well - in fact it's the opposite. I can't do the social things I used to do so I spend a lot of time alone.

Slowly (thankfully!) my GP introduced me to the Marshall Protocol. I am glad it was slow as I don't think I was capable of being flung into considering such a protocol so intense without a lot of time to process it! He was not going to put me on the protocol until I saw the neurosurgeons in Brisbane (I do have an unruptured aneurysm - the iridologist was spot on again - and a suspected pituitary tumour).

He waited til I was desperate and ready to do whatever it took to get well before suggesting the protocol. He's an amazing doctor. I was so desperate by the time he introduced me to the protocol. I could barely talk, had trouble breathing or standing up. Spending life in the dark didn't seem so bad - as opposed to feeling so unwell so often and seeing my life disappear in a worthless blur. The neurosurgeons still hadn't got back to me with an appointment (despite being classified as category 1 urgent). So 5 weeks ago my GP decided to start me on the treatment anyway. So here I am living in the dark!

I don't like the labels of these illness, as the connotations and assumptions that get attributed to them do little to help us suffering. Knowing that I just have a TH1 inflammatory disease helps. The Marshall Protocol doesn't discriminate between one label or another, whether it's CFS, sarcoidosis, Lupus etc - they are all seen as Th1 inflammatory diseases treated by the Marshall Protocol.

The Marshall Protocol seems to me to have a sound scientific approach, seeing these illnesses as a result of cell-wall deficient bacteria infecting the different systems of the body. In a simple way, as I have interpreted it, the innate immune system is switched off somehow, and vitamin D (from sun, food and supplements) keeps it that way, allowing the cell-wall deficient bacteria to wreak havoc. The Olmesartan, used in the way I am told to use it, in effect turns the Vitamin D Receptor back on, kick starting the innate immune system again. It also has a palliative effect. It is vital to avoid all forms of Vitamin D - hence me living in the dark - I guess getting sun is like giving sugar to a diabetic. There is so much more to it that I cannot grapple but if you are interested in the science part, there are good articles also here.

A few days after starting the Olmesartan I noticed I had more energy and it felt like the brain fog had lifted. I could actually maintain a conversation! My GP kept me on just that for a few weeks and I was glad of the reprieve as I adjusted to living in the dark. The photo sensitivity kicked in and I found I wanted to be in the dark, it didn't seem as depressing as I thought, in fact it felt comforting and calming.

I started the antibiotics a few weeks back, at 12 mg every 4 days. I noticed a slight return of some symptoms the next day as the bacteria died off. My GP changed it to every 3 days this week and I am noticing that my symptoms are returning steadily. But it's a good thing now - I know the symptoms are showing up as the bacteria killing them are dying off - for good! It's called immunopathology. The trick is keeping the immunopathology manageable - which is why it's such a slow process. Any sun or vitamin D also causes immunopathology so it's vital to avoid it. If I had nothing wrong I wouldn't have this reaction from the antibiotics.

All sorts of things have come out in a short time:  a target shaped lesion - indicative of a tick bite and seen in Lymes disease, a 'butterfly rash' on my face - often linked to other 'autoimmune' illnesses, like Lupus. That's another reason I am glad I didn't get too hung up on labels - as who really knows what you have and haven't got running around in your body. Symptoms that first appeared years ago are kicking in. My GP is thrilled about these things - and me too! It means the Marshall Protocol does what it says on the packet!!  And I am on the way to recovery!!! People who are getting to the end of the treatment are even noticing their signs of aging are disappearing! I've even found my waistline. Can't be a bad thing.

So I am fortunate. The urgency I had about leaving London, had a purpose - which I didn't understand at the time.  I am fortunate that I came across such an amazing GP who is just around the corner from where I now live - he closed his books for new patients the same week I started seeing him. I am fortunate there is a cure - one that I can believe in scientifically and I am able to experience it working. I am fortunate I am still able to function some days, albeit in a reduced capacity - some are completely bed-bound by this. There are so many theories about ME/CFS/FM out there and I have been so confused by them, but now I have made the decision to follow this protocol and it's working, I don't have to look for a solution anymore. I'm not going mad. I just have to enjoy the dark, look after myself and let the healing happen.

1 comment:

  1. I found this,your first post about MP and I hope the rest of the story after this date shows continual improvement. I am interested more than I admit to because you say this man is so lovely and your story with all its psychological twists and turns is just the same as mine. I live alone too. I had my grown up son here for the last year or so and actually although he has done a lot of housework, his mental illness and judgmental attitude towards me has been so stressful that now he has gone again (it's been 24 hours since I saw him) I can try to do what it takes to recover without the nutcase (said affectionately nevertheless) calling me a nutcase even if I end up in a messy house again. PS. It's Judy again from Clowntown.