ALS or MOTOR NEURON DISEASE CAUSED BY LYME DISEASE

Monday 8 May 2017

ALS or MOTOR NEURON DISEASE CAUSED BY LYME DISEASE

Dr. Al Miller Lyme Disease Intro

Published on Apr 19, 2017

This is the introduction to my 4 part series on Lyme Disease.

For more information contact me at lymediagnosis@gmail.com

The above was shared by a friend Dana Parish with the following information -'Iwas surprised and delighted to receive a call from retired Mayo Clinic rheumatologist, Dr. Alfred Miller, last week. He wanted to tell me about his daughter-in-law, also named Dana, who was struck by ALS at age 43. He could not imagine this happening to this beautiful, healthy woman and started investigating.

Upon researching, he discovered links between Lyme and ALS and had her tested. WHAT DO YOU KNOW!!! She was POSITIVE! Remember, though, he had her tested at a proper lab, IGeneX, and NOT Quest or Lab Corp, which miss approx 50% of cases!

So, all the "best" doctors in the world sent her home to die with no hope and no proper investigation into the CAUSE of her ALS. Those of us in the Lyme community are well aware that the Mayo Clinic is the LAST place you want to go if you have Lyme.

Dr. Miller began treating her aggressively with IV antibiotics and they halted the progression of her illness. This does not happen with "real" ALS.

He began contacting his patients who he had previously diagnosed with Fibromyalgia, Rheumatoid arthritis, and other inflammatory "auto-immune" arthritis and diseases and urged them to get properly assessed for Lyme and other tick-borne diseases known to cause these symptoms, like Bartonella.

WHAT DO YOU KNOW!! Most of them had Lyme!!

I look forward to bringing you more from Dr. Miller soon. In the meantime, he is on a mission to educate doctors and patients about the ravages of this disease and his horror at the medical community's ignorance about it.

All Dr Miller's presentations are available on You Tube

https://www.youtube.com/channel/UCD19kTsVBMH-F0BfV3335Ow

Thank you Dr Miller for having an open mind, after a lifetime in Rheumatology you were still willing to learn and seek out answers, but more importantly thank you for speaking up and sharing your experiences.

Singer/songwriter Dana Parish was involved in the recent Fox5NY News

LYME & REASON which I posted about https://lookingatlyme.blogspot.co.uk/2016/07/fox-5-lyme-and-reason.html

Thrilled to share that FOX 5 / Fox5NY.com Lyme and Reason Special won the Emmy for Best Science/ Health program, as presented by Dr. Oz.

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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

LOOKING AT LYME DISEASE - MSIDS

Monday 8 May 2017

ALS or MOTOR NEURON DISEASE CAUSED BY LYME DISEASE

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