Tuesday, 10 January 2012


This blog is not really about my Lyme Disease but more about raising awareness  looking back I realised that I needed to give a brief update.

My story is in the right hand side column of this blog but was posted  here 

It was about February 2011 that I again stopped taking antibiotics, so far none of the Arthritis or muscle weakness symptoms have re appeared and although some symptoms continue such as facial tingling and sinus problems (which may or may not be Lyme related) I am doing really well. Apart from a couple of weeks clarithromycin for ear infection September time, I have not needed any medication since February 2011.

How many people so disabled with Arthritis and muscle weakness that they get retired early on Ill health grounds make such an amazing recovery on just oral antibiotics?

Winning the Lottery is nothing compared to regaining my health and life.

Daily I am thankful for all those Lyme Advocates who have helped raise awareness of the controversy of Lyme Disease that leaves our Health Departments in ignorance of the science that supports ILADS view and opposes the restrictive Guidelines produced by the IDSA ,  leaving so many patients Worldwide without diagnosis and treatment that can help them.


  1. I am so glad your symptom are mostly gone Joanne. It gives the rest of us hope....I know Joel is still on disability and he is one of the lucky ones to get it through our synod as a pastor. So many are not able and fight so hard for the help they need.

  2. Hi Renee Nice to hear from you I still have a brief read of your blog. Yes the situation is heartbreaking and here in the UK there are so few LLMD's but the good news is there are a growing number of doctors realising that patients are responding well to long term antibiotics.

    I often think those of us diagnosed are actually the lucky ones as so many people will never be diagnosed but given palliative treatment to suppress their symptoms whilst their infections take a greater hold.

    Of course I do realise that many struggle to find the right treatment that helps them even when they are diagnosed and many more can't afford the treatment anyway.

    History will look back on this International Medical Scandal and those responsible will be judged and vilified.

  3. Joanne, I am glad you are doing so much better now and you haven't needed to continue antibiotics.

    You said,

    "...here in the UK there are so few LLMD's but the good news is there are a growing number of doctors realising that patients are responding well to long term antibiotics."

    Do you mean that family doctors (not LLMDs) are now experimentally treating Lyme disease patients longer term and are seeing results? Doesn't that lead those doctors to questioning the map of medicine and the NHS; questioning Susan O'Connell and her views (yes, I'm aware of her role in the UK)?

    I hope these doctors are methodically recording everyone's treatment and progress over time and sharing this with others. It would be a benefit for many to learn from their experience and case studies.

  4. Hi Camp other Yes I do mean family doctors or as we refer to them in the UK GP General Practitioner. Through Eurolyme chat group I have spoken with a number of others whose GP are happily treating them on long term antibiotics. In my own GP surgery I have spoken with about 6 other patients.( no doubt there will be many more I have not spoken with) Infact there are three within 200 meters of where I live all with NHS positive so the surgery is realising this is a growing problem. I am definitely not the only patient treated on long term antibiotics and shown substantial improvements. Also in my local area of Guildford I speak with a number of other patients with Chronic Lyme Disease patients whose GP practises are becoming more aware of the problem and being sympathetic in treating on longer courses of antibiotics and just as importantly considering Lyme as a differential diagnosis and recognising early EM symptoms. On a recent hospital appointment I spoke with a trainee doctor about my Lyme Disease she thought she knew all about it as during a recent spell on Paediatrics they treated two children for Lyme Disease. Of course I talked to her about the two schools of thought and the need to do long term follow up.
    Of course our 'expert' is pedaling fast to try and stop anyone treating using a different view than her own- doctors are no fools and when they can see that treatments are helping many of us they will not be dictated to by a microbiologist.
    Recently all our LLMD's were reported by this microbiologist for using unorthodox tests( ie anything not done in her NHS lab) Thankfully the GMC are using their brains and realising that this is a medical controversy and as such according to a reply to me on a similar issue not something appropriate to their investigation. Thankfully according to a message I received the GMC have advised the LLMD's involved, using a clinical diagnosis for Lyme Disease is not in itself reason for a Fitness to Practise hearing.

    A recent letter received by me from Department of Health says that they are working with the James Lind Alliance and the Lyme Disease Action on their current research. I was delighted to hear this and hope they still support the JLA when their findings are published.
    D of H do currently say that they fully support the view of HPA so they will one day have egg on their face when the truth eventually emerges.
    The business with GMC already shows them in a very poor light.

    Doctors are supposed to methodically record everything and certainly do seem to be sharing information but it will be a slow process. Here in the UK there are a growing number of doctors who themselves or a family member have had Chronic Lyme Disease and like all us patients struggled to get diagnosis and treatment.