The Tides are Turning

Perhaps I am the only one who doesn’t believe that the tide is slowly turning in terms of M.E research – the recent Invest in M.E Conference presentation by Fluge and Meller on their rituximab trial proves that there is something floating around in our B-Cells that is being killed off.

My only hope and faith lies with Judy Mikovits and I believe she has the key to unlock this disease.

Peter White is still publishing papers on Graded Exercise, the MRC aren’t funding much decent research and most neurologists won’t treat patients with M.E with respect and understanding that they are ill.

Whilst I hope and pray that Dr Judy gets funding to carry out more studies and that the Lipkin results due to be announced on 30th June provide some more clues, the patients are having to do it for themselves, which is why by hook or by crook I am opening an M.E Clinic in Sussex with basically little to no funding, covering most of the costs off my own back. Dr Enlander is doing it himself with his Mount Sinai clinic in New York, Jamie Deckoff Jones is going it alone in Hawaii – look at how well little Andrew is doing out there. I am determined to go it alone until we have a generalised consensus and biomarkers to diagnose patients and a universal treatment plan which judging by the recent CSFAC meeting in the United States, is a long way off. There is enough information and research on this disease – it’s time we put it to good use.

Why am I doing this? Because I believe my success in treatment and knowledge combined with professionals I know in the field of medicine will help people. It will help them understand their illness through support groups, treat symptoms through medical advice and offer testing not available on the NHS.

I want patients to be able to come to me knowing they are going to gain some benefits from my approach and I tell people all the time “take this, this and this” but until I run clinical trials, the results of my approach, based on Rich Van Konyenberg’s work, is not going to be fully understood.

I started what is known as the Methylation Protocol a year ago. Prior to that I was barely able to stand, I felt so viral and flu like that I was bed-bound and cried out in pain. I had a constant low grade fever and just felt like death, anyone with M.E will know the exact feeling I am describing. So called M.E experts such as Professors Wessely and White have indoctrinated the medical profession to believe that we are “tired”. Chronic Fatigue, just tired, that’s all. This feeling of such intense exhaustion and malaise burns right through to the bones and you just want to die it’s so painful. That isn’t tiredness.

I won’t lie. I am still wiped out. I am still sick. But I can stand. I can pop to my local shop. I can wash and bathe myself and with a struggle, dry my hair. I can walk a few metres. But I am not bedbound apart from on my bad days and for this I have to thank the protocol and the anti-virals I am on. They saved me from a fate that I dread to imagine.

The basic protocol is this:

 

  • Methylcobalamin 1mg      sublingually
  • Methyltetrahydrofolate      800mg (ActiFolate)
  • Pyridoxal 5 phosphate 50mgs      twice daily
  • Glutathione 250mgs daily
  • Phosphatidyl Serine 200mgs      one daily

Add in Now Foods Immune Renew (a potent antiviral complex), NADH, Now Foods Co-Enzyme B Complex (co enzymes are essential for energy), Magnesium Malate, Vitamin C and Rhodiola and I promise you will feel better within 6 months.

Dr Enlander uses the Methylation Protocol on his patients but I am unsure whether he is monitoring their success using some form of statistics. If our bodies are ridded with viruses that are eating up the mitochondria, we need to feed those mitochondria and repair the damage.

The protocol is only part of how I want to approach patient care, obviously under the care of a doctor, not me prescribing things now that would be mad.

I want comprehensive immune testing on patients such as TH1/TH2 shift, full cytokine panel and immunoglobulin profiles. Those who are low in Immunogloublins I want to refer for IVIg but this is a work in progress as the NHS will not fund M.E patients for IVIg but I am working on it.

I hope people will read this and feel a sense of hope. The tide may not be turning but we can force the waters apart ourselves.

 

 

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1 Comment (+add yours?)

  1. Esperanza
    May 09, 2013 @ 02:22:31

    Wow, incredible blog layout! How long have you been blogging for?
    you make blogging look easy. The overall look of your website is fantastic, as
    well as the content!

    Reply

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