UPDATE OF MY LYME DISEASE

Tuesday, 10 January 2012

UPDATE OF MY LYME DISEASE

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.

4 comments:

Renee10 January 2012 at 21:58
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.
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Joanne10 January 2012 at 22:10
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.
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Camp Other11 January 2012 at 01:26
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.
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Joanne11 January 2012 at 10:40
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.
http://www.lymediseaseaction.org.uk/what-we-are-doing/research/
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.
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Lyme Life written in 2009

I started suffering with arthritis in mainly my large joints especially my knees 6 years ago. The symptoms varied and I remember saying that every joint was affected except my elbows to one doctor. I was told it would be hormonal and to take the usual supplements cod liver oil or glucosamine ( I would certainly recommend buying shares in the companies producing these supplements) They had no noticeable affect.

All my symptoms deteriorated significantly over a few weeks,4 years ago. Hips shoulders and knees being the worst and I started with muscle weakness in upper arms and upper legs. I had difficulty standing and walking across a room. I was unable to walk upstairs and my husband was making plans to convert to a downstairs bedroom. I had seen 5 doctors and 3 Rheumatologists and put on steroids for Poly Myalgia Rheumatica diagnosis. I had been diagnosed with Fibromyalgia and ME/CFS.

I have X rays and scans showing signs of osteoarthritis and Rheumatoid arthritis. ( later note.- the X rays done some years into treatment showed my hands completely normal no signs of inflammation or RA confirming how they felt - normal) I have been retired early from the Civil Service having lost my job not to mention my earning potential. My illness seemed to progress through my body not affecting the same joints left to right at the same time. I had bursitis in left hip, right hip, left elbow. I had synovial thickening in both wrists. At that time I could not lift and hold a magazine so lifting a kettle I could only do if a third full and with two hands. Each joint in my hands fingers feet and toes were affected. I had swallowing difficulties and many other symptoms. None of this describes the endless and awful pain whenever I moved or the tiredness but inability to get quality sleep.

Two years ago my GP gave me Amoxicilin for a sinus/throat/chest infection. All my arthritis symptoms improved. The course ended the symptoms deteriorated I started a second course the symptoms improved. The improvement was more significant than when I had started taking steroids. This led my GP to suspect Lyme Disease. I laughed because we do not travel abroad but she said they had had other cases in the surgery in the early stages of tick bite and Erythma Migrans rash. She said but you have not had a bite. I said oh yes I have I had two on my ankles with rashes, March 05 this was confirmed on her computer when I had seen a locum doctor. My worst symptoms were waking up feeling rigid and having to painfully flex every joint in my body before struggling to get up. The only other time I had experienced this was in May 2003 during a flu like illness like no other I had ever experienced. At that time I had a bite and similar rash on my right foot which lasted like the other rashes about four weeks. I had also consulted the surgery and it was dismissed as a virus. I walked our dog daily in the woods adjacent to our house where the deer roam, prime tick area. Thus started my very lengthy search about Lyme Disease leading me through Lyme Disease Action to a doctor who specialises in this illness. He confirmed my GP's suspicions. I never had a positive blood test but then they are antigen tests and there is much research that shows they are unreliable. In my case the year of steroids and many weeks antibiotics could have affected the results. So with a clinical diagnosis and following ILADS International Lyme and Associated Disease Society guidelines I continued on antibiotics for two years. Both my doctors continued to treat me despite of Health Protection Agency advising against long term antibiotics. I am now nearly 100% recovered I have no pain or muscle weakness. I can walk upstairs something I could not do for three and a half years. I can garden do house work and live a normal life. I still need to pace myself and with only a few months to 60 will not be looking to return to work. Life is such a joy. Sadly there is much controversy about Lyme Disease and doctors in UK are taught that it is so rare. Well where I live in Guildford I have been in contact with a dozen other people with it so perhaps not so rare as HPA would like us to believe. I am in touch with nearly 2000 other patients through a chat line Eurolyme most had been misdiagnosed with several other illnesses. Look at UK charity Lyme Disease Action if you want to read more about this illness. There are many MP's taking an interest in the problems surrounding diagnosis and treatment see above charity links into a recent meeting at the House of Commons.

Thank goodness there are some thinking doctors around who have courageously treated me against opposition and I have made such a miraculous recovery albeit rather a lengthy one. One day there will be many more people who are helped with their chronic illnesses when IDSA starts taking note of what our courageous LLMD’s are doing following ILADS Guidelines.

ME/CFS, Fibromyalgia, Poly Myalgia Rheumatica, Arthritis, Bell’s Palsy, MS,MN, ALS, Parkinson’s, Alzheimer’s, Heart Block, Stroke, Psychiatric, gastric problems the list is endless. Not all suffering from Lyme Borrelia but how many are even properly assessed for it.

UPDATE

UPDATE 10 January 2012