Tuesday, 9 March 2010


Hi Everyone Feel real crap . Eyes started playing up again few days ago. By yesterday afternoon they were aching real bad and i noticed red rash ( PERFECT CIRCLE, BRIGHT RED THEN FADING THEN BRIGHT RED AGAIN, NOT ITCHY OR PAINFUL ABOUT 3 -4 INCHES DIAMETER ) on inner arm.i had it before about 18mths ago was getting palpitations, difficulty swallowing and numbness spreading from neck into jaw. GP thought it might be thyroid ( I've had half of it removed ) sent me to hospital. I had this weird rash a red circle that had got bigger on inside of my arm but he wasn't interested didn't even acknowledge me when i mentioned it, So when he had done patronising me and made me feel 10 inches tall telling me there was nothing wrong that i was hyper aware of my throat i went on my way and eventually began to feel better until November 09.In Nov 09, double vision, balance problems etc etc and strange circle rash in exact same place on arm. By time i saw Neuro rash had faded and i didn't think anything of it anyway so i never mentioned it.Few days ago blurry vision, aching eyes progressing to stabbing pains in side of head numbness on side of face and weird circle rash came back in exact same place again ( which this time i did think this is odd ). By this morning felt terrible and circle was bigger so went to A& E. Doctor there gave me examination, did a blood test and said that i have some sort of infection as my white blood cell count was raised. He said with that and the circle rash he had better test me for Lyme Disease ( he looked on my records, I've not been tested ) He also said he was surprised that i hadn't had a lumbar puncture. Anyway results will be back in 3 days. Has anyone on here had any strange rashes when they've been having symptoms.Lisa xx

The above came up on my google Alerts from a UK MS forum and sounds a strong possibility for Lyme Disease, several of the comments also said they had had similar experiences with rashes and bites but showed a clear lack of awareness on that forum over Lyme Disease so I had to leave a reply. It is so difficult to know how much to include and how much to leave out and let people make their own enquiries at their own speed. We are all so indoctrinated into the idea that our doctors are infallible and yet the more research you do about any illness the more you realise how much there still is to know about illnesses as Dr Jemsek said out of the top 20 illnesses we only know the cause of 2 HIV and stomach ulcers.

So this is what I wrote and something every MS patient should be aware of.

Hi Your comment came up on my Google Alerts and because of the huge controversy over diagnosis and treatment of Lyme disease you really need to do your own research and not just depend on your consultants as currently they follow HPA guidelines which follow IDSA guidelines.

The IDSA Guidelines are currently under review following legal action against the authors of the 2006 guidelines details of presentations can be found on IDSA website but also on www.ilads.orgReseach shows that blood tests can miss up to 50% of cases, many doctors following ILADS believe it should be a clinical diagnosis. Indeed the CDC say as much especially if you have EM( bulls eye rashes) which can re occur, they are diagnostic of Lyme and patients should be treated on antibiotics with this rash with no need for confirmatory tests.

Many MS doctors would expect to perform a spinal tap for Lyme this is brilliant if it is positive but in reality it is considered a 7% chance of positive test with someone with Lyme Disease.

As to your symptoms all can be caused by Lyme Disease, eye problems are common. Neurological Lyme Disease is well recognised amongst Lyme literate doctors sadly you are unlikely to find one on the NHS because they follow HPA/IDSA discredited Guidelines however consultants and doctors are not stupid and if they took the time to read the presentations to IDSA especially Stephen Phillips where he presents 25 studies of seronegativity and persistent infection, Phillips highlights on 18 occasions where IDSA 2006 authors were actually involved in that research confirming seronegativity and persistent infection yet failed to include it in their Guidelines. At the end of the presentations to review panel the chairwoman asked Steere to comment, what was his answer OPINION, Opinion is what is driving these guidelines and leaving thousands of patients the world over without diagnosis and treatment that can help. Other useful details for consultants and doctors to read would be ILADS or Burrascano Guidelines both found on ILADS website.

I was lucky with my GP she took the time to read these alternative guidelines as some other doctors have, they realised that the jury is very much out over correct treatment protocols for Lyme Disease. There is no evidence to stop taking antibiotics whilst symptoms continue, again it is based on opinion.

My symptoms which were mainly Arthritis and muscle weakness but some peripheral neuropathies and swallowing problems, continued to improve on antibiotics but deteriorated when they were stopped. Not rocket science when faced with debilitating symptoms to want to continue on what is helping and with supporting guidelines from Burrascano I continued for many months on antibiotics. Now I am 100% I have no pain no disability and am on no medication although I had been retired early on ill health grounds from the Civil Service. For 3 1/2 years I had not been able to walk up or down stairs properly I can cycle now.

Lesions for MS and Lyme are not distinguishable from each other. Lorraine Johnson's presentation to IDSA review found on ILADS website at 2.20 along shows her spect scans before and after Lyme Disease treatment, she was diagnosed with MS and bedridden, now you can see she if recovered and fully functioning.There are many such cases available and I am in touch with many with Neurological symptoms although not all with MS diagnosis through chat line Eurolyme google for a link and join just to ask a few more in depth questions you can soon join out if you decide this is not relevant to you.

UK charity Lyme Disease Action www.lymediseaseaction.org.uk has done much to present good science about Lyme Disease, the many symptoms that can be mis diagnosed as so many other illnesses which are often treated with drugs that mask the symptoms but don't deal with the cause, in this case a bacterial infection often associated with many co infections which aren't even tested for in the UK.

Another point is that Blood tests were developed on one species of Borrelia and in UK/Europe there are 4 known species which can present differently. In USA there are over 300 known strains of Borrelia some mild causing rash only symptoms whilst others are more aggressive causing very debilitating symptoms clearly leaving huge questions over efficacy of the blood tests.

Why such huge controversy well the recent documentary does help to explain what has happened you can see an extract on http://www.underourskin.com/ but there are many other extracts worth watching links on their website.

Recently I started a blog giving links into many useful articles, charities and research see http://lookingatlyme.blogspot.com/
These links are something everyone with MS diagnosis should read carefully as things stand currently it is unlikely that they have properly been assessed to see if they could have Lyme Disease which is treatable, relying on blood test results is not good enough, that is even if a blood test has even been done for Lyme Disease. That is not to say that every MS case is Lyme Disease far from it just how many are properly assessed to rule it out.

Long term antibiotics are frowned upon yet Borrelia organism is as complex as TB and Leprosy, they would be treated on long term antibiotics. Syphillis which is another spyrochetal infection similar but less complex than Borrelia, you would not treat that with just a few weeks antibiotics.

Many treatments for MS are far more invasive than long term antibiotics.

There is a lot of reading you need to do before next speaking to your doctors very best wishes to you.

PS. the smallest tick is the size of a poppy seed so can attach and we are not always aware of it, about 40% of people are unaware of a bulls eye rash which doesn't usually itch and can present in many different forms so not always easy to diagnose, for some patients they can remain without symptoms for years after the bite is long forgotten and then something can trigger it such as a compromised immune system from stress or illness.

Most doctors do not recognise EM rashes for what they are because they are taught Lyme Disease is rare in UK albeit there are cases now throughout UK and many areas are known to be endemic according to HPA New Forest, Scotland, Dorset, Yorkshire, Sussex, Thetford Forest and New Forest to name just a few from memory.

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