Part Two: Diagnoses and Decisions

I was losing hope. I was not getting any better, I was getting worse. I feared I would never recover from infections that riddled my body. I had tried Echinacea, homeopathy, multi vitamins, nothing cured my continual infection.

One day, on an internet forum, I was so so ill and reached out for someone, anyone, when a patient replied to my post asking if I would consider flying out to Cape Town for some treatment? Cape Town, why Cape Town? That is miles away, a third world country? I was told the medicine out there was cheap, the climate was beautiful and I could see any doctor I wanted and he would send me to his specialist who would help me greatly.

I told my mum, thinking she would laugh at the idea as I did, when she said well, why not, after all my mum lived in South Africa for seven years and my brother and sister were born there. I didn’t believe she was taking this seriously but after uming and arghing for a month or so, appointments were booked and we flew out to Cape Town in February 2010 and again in February 2011.

I saw a top Endocrinologist, immunologist and spinal specialist – all for a quarter of the price of one private consultation with Professor Mathias.

I was told first off that I had inflammation in my spinal chord and scoliosis, the beginnings of a curve in my spine which was causing all the neck stiffness and agonising pain. The ligaments in both feet were damaged causing the pain on walking and my knees were instable, meaning they do not support the leg. I also had severe tendonitis on both shoulders and damage to the cartilage between my ribs.

I was treated for this by a combination of physiotherapy and chiropractic techniques which enabled me to be able to move my neck properly without pain for the first time in a good year. To date this side of my condition since last February has got more severe, the scoliosis has got worse, my ankle keeps dislocating, my neck and pelvic keep twisting and my rotator cuff is either damaged or completely torn so am awaiting a referral back to Rheumatology.

The immunological side of things is where it gets interesting – when I showed my results to a UK immunologist he dismissed them.

My Endocrinologist understood that I have knowledge about the pathology of my disease and allowed me to request any blood work that I liked.

It turns out my Gamma Gloublin and IgA and IgG are all low, which is why I cannot fight infection. The pathologist also said I have Hypergammaglobulinemia which baffled me as my Gamma Gloublin was low. I was also told I have Lymphocytosis which would explain the lumps under my armpits.

I am HHV6 positive – which means I have a virus active in my body that I cannot fight and has infected my B Cells.

My complement C3 and C4 and CD4/8/57/59 are all significantly raised as are my white blood cells.

My Endocrine results were also interesting. My cortisol was low and my ACTH was 0.2 – virtually non-existent, basically meaning my pituitary function was not right.

Thyroid function was borderline low and my Blood Pressure was 90/60 lying down, it plummeted to 86/30 when I stood which explained the constant fainting and blacking out spells.

I returned to the UK and was referred straight to an immunologist at Southampton Hospital where I went along, eagerly clutching my results, waiting for those magic words, “intravenous immunoglobulin”. Maybe with the correct diagnosis and treatment I could get better and help fight these infections, at least I could regain some quality of life?

Sadly it was not to be. I had full blood work done and again my Immunogloublins were low but I was told there was nothing to worry about. But I am so seriously unwell, I cried, surely something is wrong? I was told coldly that there was no evidence I keep getting infections – despite me having all the above blood tests, it was clear the consultant deemed me a hypochondriac.

My inflammatory markers were all triple above normal as well, which also indicated massive inflammation and infection going on in my body.

My local ENT consultant said my ears are so scarred from continual infection that I will need surgery on them at some point.

This is what patients with ME/CFS have to deal with every day, disbelief on every corner, snide looks and judgements that we are the makers of our own illness and are in control of our own destiny.

I had the bloods but no diagnosis. My GP didn’t even know, nor care what Ehlers Danlos Syndrome was and wrote a letter to the local social care services saying I have a perfectly good quality of life and that should I be made homeless, no risk would be made to my health and I do not need any extra support?

I did not know what world she was living on? It certainly was not the same one as mine, writhing with constant fever, constant vomiting, raging with flu like aches and pains day after day.

I had had enough and decided to take matters into my own hands.

There is a forum called Phoenix Rising which is mainly composed of American patients and on it are pages and pages, details of treatments, therapies ranging from immune modulators to antivirals, supplements to chelation? I have to confess I actually cried when I first registered with Phoenix Rising as in the UK we are physically barred from any access to the slightest treatment that will help us when here were all these people sharing their doctors experiences. I now know the grass isn’t necessarily greener on the other side but hearing some of their stories gave me hope for the first time.

Patients with subclass deficiencies who also have a diagnosis of ME/CFS have no life as their disease is deemed not real.

I was curious to see what the top doctors in America would do with me if I was their patient so I began emailing. I spoke to patients of Nancy Klimas, Dan Peterson, Dr Bell.

I ordered books, read online articles and basically spent a year educating myself about immune deficiencies, exhaustion and ME/CFS. I wanted to know WHY to enable myself to answer the HOW question, how to treat and how to get better.

The answers are still out there, I refuse to give up and refuse to believe that nothing can make me better from all these chronic infections.

 

 

 

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2 Comments (+add yours?)

  1. Gill Mcs Mcs
    Nov 18, 2011 @ 13:32:53

    The UK still in the dark ages with ME/CFS

    Reply

  2. Sally
    Nov 18, 2011 @ 22:53:22

    I wonder why they dont want to try and make us better. Why arnt we worth treating? There are lots of us and we would be better use to the country if we were well. It makes no sense to me that we are kept ill.

    Reply

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