My experience with NHS Immunology

For those unfamiliar with my story and have not been following my blog and path to trying to get well and unravel the complexities of my illness, I have been travelling to South Africa for three months of the year, every year for three years now in a bid to get well.

Why, one may ask. Unsatisfied with only Cognitive Behaviour Therapy as a ‘treatment’ for a disease that had totally incapacitated me, I was told by a fellow Capetonian that doctors there take a more integrated view of diseases such as M.E – they go by things that I now know to be beneficial, proper physiotherapy, supplements, endocrinology and immunology

The University of Cape Town is not to be sniffed at; it has produced some of the world’s top researchers.  The first ever heart transplant was performed at the ChristianBaarnardHospital in Cape Town and Ehlers Danlos Syndrome was discovered and researched by Professor Beighton at the University of Cape Town. I have absolute faith in their medical knowledge and trust my doctors there completely.

I saw a top Professor of Immunology from the University of Stellenbosch, Cape Town, back in February. He did the TH1/TH2 test and found I was TH2 dominant and my cells were not responding to viruses in vivo. He diagnosed me as immunosuppressed and recommended a course of Ig Immunogloublins to help fight my recurrent infections – a regime which made total sense to me.

I went to take these results to an NHS immunologist today, five months and eight infections later, and here is the story of what happened:-

I had a full NK cell and Ig profile done at SouthamptonHospital last November. The IgG and A were borderline low but he said this was fine despite severe infectious episodes, recurrant biliary tract infections and monthly outbreaks of shingles.

Well read M.E patients know from Paul Cheney, Dan Peterson and Nancy Klimas’ work that there is a TH2 pattern in M.E patients yet my consultant immunologist said these tests were ‘quakary’ and meant nothing. He said if your NK cell numbers were ok then there was no deficiency, no problem, nothing. I said what about the NK function (which I had measured and showed no activity at all against viruses) and he said it meant nothing.

As first unveiled by NIH and NCI researchers Gene Shearer and Mario Clerici, the bedazzling hypothesis became known as the “TH1-TH2 shift,” and as recently as last summer everyone was buzzing about it. In a vacuum forged of treatment quandaries and failed paradigms, the TH1-TH2 dogma offered itself up as something of a life raft to frustrated researchers and lay observers alike, flailing to find direction in a flooding torrent of dispelled dogma.

This was from an article I found on the internet. The TH1/TH2 shift was discovered in 1993 as part of HIV/AIDS research and created some buzz from what I have read.

But according to some sources online the TH1/TH2 shift is not a validated test so if I was to go to Dan Peterson and get upteen tests done, then would they be discredicted as ‘quackary’ as well.

I am fortunte that my CD4/CD8 cells are okay in numbers and not low like many M.E patients but I know I am immune suppressed as I am for one, HHV6 positive and for two, have had small shingles outbreaks 21 times since November 2007. Something in my body is not right. I leave the house for a millisecond and I pick up a bug. I cannot interact with another human being without picking up some sort of infection – my body cannot fight anything without antibioptics and antivirals and yet to this NHS doctor there is nothing wrong with me. We in M.E research all know different but how are we supposed to get these tests validated? Are we to fly researchers over and make them chain themselves to Downing Street? Are we to lobby Washington?

I am fortunate in that I have a great team in Stellenbosch but others are not so lucky. I have been prescribed anti-virals but again others are not so fortunate.

Another thing that got up my nose was that he was trying to discredit my diagnosis of Cholangitis, just like my local hospital did who left me unmedicated and left me to die, writhing in agony. I have an official complaint going against that doctor with my local health authority and the General Medical Council but why do these doctors think they can have the arrogance to over-ride diagnoses. It wasn’t the first time it has happened to me and won’t be the last I am sure. I said unless you get a syringe right now and drain my bile duct you cannot swear 100% and look into my eyes and tell me that there is no infection and I didn’t nearly die and self medicate myself back to life for nothing – nothing didn’t nearly kill me, infection did and each time I get a massive biliary infection that’s one bit shaved off my lifespan but as long as this doctor thinks he is in the right then that’s ok, right? No it isn’t alright and it’s a disgrace patients are treated like this. I am fighting this doctor’s opinion as well as my local hospital and will continue to fight until M.E patients are treated with respect and recognition.

I did ask this doctor if he believed in M.E and if he understood the specific immune dysfunction present in patients and I thought he was going to dismiss me, I really did but he didn’t, he said he understood and believed that there was a problem with the B cells in M.E which is why the Rixitumab study wielded positive results.

I don’t think this doc was a bad guy, I blame the lack of research and validated tests and criteria for M.E patients.

He said that a proper patient cohort was needed and not mixed groups, i.e Oxford Criteria. I referred to the PACE trial and what a mess that was and he nodded as if he understood which I took as a positive sign.

I told him that Professor Bouic had confirmed Shingles/Herpes Virus attacks and asked why he was dismissing it and his reply was that there was no evidence. How many more studies on M.E patients do there need to be to determine viruses in my blood. My bloodwork was already positive for varicalla, what more proof to they need but it is easier to deny.

He is interested, however, in doing more research on M.E patients and is going to join my team in a bid for the MRC funding round for immunology so some interesting results may yield in the future so it’s not all doom and gloom. He might be able to be turned if he finds what we already know to be present in M.E patients.

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2 Comments (+add yours?)

  1. xfire.com
    Nov 05, 2012 @ 00:40:27

    When I initially left a comment I seem to have clicked on the -Notify me when new comments are added- checkbox and from now on each
    time a comment is added I receive four emails with the exact same
    comment. There has to be a means you can remove me from that service?
    Cheers!

    Reply

  2. Zulma
    Jan 25, 2014 @ 21:57:08

    I needed to present this specific posting, “My experience with NHS Immunology | sciencevsantiscience” with
    my best buddies on facebook or twitter. I reallyonly planned to disperse ur excellent writing!

    Thanks a lot, Lloyd

    Reply

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