MULTIPLE SCLEROSIS AND LYME DISEASE AWARENESS

Thursday, 13 May 2010

MULTIPLE SCLEROSIS AND LYME DISEASE AWARENESS

As May is awareness month for Lyme Disease I want to highlight the problems patients have by being diagnosed with Multiple Sclerosis when in fact they have Lyme Disease.

If patients with Neurological symptoms are actually tested for Lyme Disease their doctors are led to believe that a negative result means you can't have Lyme Disease. This is quite wrong research shows blood tests can miss up to 50% of cases.

Imagine living with a progressive infectious illness, treated symptomatically when adequate treatment on antibiotics is the way Lyme disease is treated and symptoms can improve and we can regain our health and our lives.

There are many patients with Lyme Disease that I am in touch with who have neurological symptoms and some previously have been diagnosed with MS but on antibiotics are getting better.

The presentation by Lorraine Johnson to the IDSA review panel shows her scans before and after treatment for Lyme Disease she had been previously diagnosed with MS. Her video and presentation can be found on http://www.ilads.org/ by clicking on the right hand side lower down on their home page.

In fact all these presentations are worth taking time to watch and read so that we can all make our own decisions sadly many of our consultants won't have taken the time to consider this considerable body of evidence supporting ILADS guidelines and remain way behind the times following outdated opinions those of the IDSA 2006 guidelines.

Many of the ILADS supporters presented research on the problems over testing but another useful place to look is http://www.lymeinfo.net/lymefiles.html

17 pages of studies on seronegativity
http://www.lymeinfo.net/medical/LDSeronegativity.pdf

For over 20 years studies have been done regarding Lyme Disease mis diagnosed as Multiple Sclerosis
http://www.lymeinfo.net/multiplesclerosis.html

Why are our doctors still missing the diagnosis well you need to get very well informed of the shenanigans that have been skewing the science and the guidelines that our doctors rely on since Lyme Disease was found to be a bacterial infection in the early 1980's. Of course Borreliosis was recognised in Europe about a hundred years before it was called Lyme Disease and one of the European species is characterised by it's neurological presentations.

One very clever student some years ago correlated a map comparing incidence of Lyme Disease and Multiple Sclerosis you can see her work here.

Canada has the highest incidence of MS in the World, but patients with Lyme Disease probably have the hardest job getting diagnosed with Lyme Disease and there are no Lyme Literate Medical doctors practising in Canada, not every patient can afford to travel out of state for treatment.

Scotland I believe also has a very high incidence per population of Multiple Sclerosis, it has been a known endemic area for Lyme Disease for many years.

Some recent research on Rare infections mimicking MS.

Brinar VV, Habek M.University of Zagreb, School of Medicine and University Hospital Centre Zagreb,Department of Neurology and Refferal Center for Demyelinating Diseases of the Central Nervous System, Zagreb, Croatia.

The diagnosis of multiple sclerosis (MS), despite well defined clinical criteria is not always simple. On many occasions it is difficult to differentiate MS from various non-MS idiopathic demyelinating disorders, specific and infectious inflammatory diseases or non-inflammatory demyelinating diseases. Clinicians should be aware of various clinical and MRI "red flags" that may point to the other diagnosis and demand further diagnostic evaluation. It is generally accepted that atypical clinical symptoms or atypical neuroimaging signs determine necessity for broad differential diagnostic work up. Of the infectious diseases that are most commonly mistaken for MS the clinician should take into account Whipple's disease, Lyme disease, Syphilis, HIV/AIDS, Brucellosis, HHV-6 infection, Hepatitis C, Mycoplasma and Creutzfeld-Jacob disease, among others. Cat scratch disease caused by Bartonella hensellae, Mediterranean spotted fever caused by Riketssia connore and Leptospirosis caused by different Leptospira serovars rarely cause focal neurological deficit and demyelinating MRI changes similar to MS. When atypical clinical and neuroimaging presentations are present, serology on rare infectious diseases that may mimic MS may be warranted. This review will focus on the infectious diseases mimicking MS with presentation of rare illustrative cases. Copyright (c) 2010. Published byElsevier B.V.http://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pubmed&id=20439131&retmode=ref&cmd=prlinksPMID: 20439131 [PubMed - as supplied by publisher]

Whilst the science is still emerging about Lyme Disease and doctors badly misled by all our health authorities it pays to become well informed and do our own research before accepting at face value everything our doctors tell us, they are after all human and can make mistakes.

2 comments:

Renee13 May 2010 at 23:57
I had not known that Canada has the highest incidence of MS...makes you wonder....You always have such good information to share....takes alot of time and effort to make it available to all of us...Thank you.
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Joanne14 May 2010 at 08:36
Hi Renee
Many thanks for your comment, of course I only find information research on other blogs and chatlines to pass on.

There is so much information out there on the internet but unless you are aware of the shinanegens that have been going on with lyme you would not question other diagnosis for your illness.

With the power of the internet curtesy of Google Alerts this is my way of raising awareness, so others do their own research and ask questions.

I did not make it clear in this post but I am not suggesting that everyone with MS has Lyme, far from it, but not everyone will be properly assessed for it.

I also forgot to put a link to Can Lyme which can be found on the links in my side bar under Canadian Lyme Disease Association.
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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