LOOKING AT LYME DISEASE - MSIDS: January 2017

Tuesday, 10 January 2017

OVER RELIANCE ON LYME DISEASE TESTS CAUSES HEALTH BURDEN

Flunk the Lyme test? Just wait and get sicker

"Sin Lee, a pathologist and scientist, believes the deck is stacked in the quest to air new ideas on Lyme disease.

Too many science journals telling him to take his research elsewhere. Too many deftly worded rejections. Too little inclination to engage in a fair fight over the facts and fiction of Lyme disease.

Dr. Lee’s experience is shared by many researchers I have interviewed, in the U.S. and Europe, in five years of writing about a disease on which scientific debate is limited and tightly controlled. Some 380,000 Americans were infected with the tick-borne spirochete in 2015, leaving 20,000, by conservative estimates, with unresolved joint pain, cognitive lapses, fatigue and other problems. Another 232,000 are estimated to be infected annually in Western Europe. Many suffer because of a poor test and delayed diagnoses, issues that have been largely dismissed in mainstream journals."

Go to this link to read this excellent in depth article in full -

http://www.huffingtonpost.com/entry/flunk-the-lyme-test-just-wait-and-get-sicker_us_5873ef2fe4b08052400ee537?

Thanks to the Huffington post for publishing this article written by Mary Beth Pfeiffer investigative journalist who is writing a book, 'The First Epidemic,' on the global spread of ticks and the diseases they carry.

Lyme disease reporting by Mary Beth Pfeiffer

September 7, 2016: CDC Says Fewer Suffer After Lyme Disease. Doesn’t Say, If Treated Early.

http://www.huffingtonpost.com/mary-beth-pfeiffer/cdc-citing-one-study-of-e_b_11877020.html

July 16, 2016: Go-To Lyme Drugs Don't Always Kill The Bug

http://m.huffpost.com/us/entry/10929038.html

May 30: 2016: ‘Quiet Plague’ Claims Another Celebrity

www.huffingtonpost.com/mary-beth-pfeiffer/quiet-plague-called-lyme-_b_9578544.html

April 5, 2016: Lyme Time Is upon Us Again

http://blogs.scientificamerican.com/guest-blog/lyme-time-is-upon-us-again/

Major installments in Poughkeepsie Journal series No Small Thing, 2012-2015

August 19, 2012: Lyme disease: Antibiotics Fuel Debate

5 doctors targeted; chronic treatment at issue http://www.poughkeepsiejournal.com/story/news/health/lyme-disease/2014/03/20/lyme-disease-antibiotics/6646701/

October 21, 2012: Flunking the Lyme disease test Dicey path to Lyme diagnosis Centers for Disease Control says tests 'almost always' correct, but the pitfalls are many

http://www.poughkeepsiejournal.com/story/news/health/lyme-disease/2014/03/21/lyme-diagnosis-false-tests/6692353/

CDC researcher answers questions on disease, tests

http://www.poughkeepsiejournal.com/story/news/health/lyme-disease/2014/03/21/lyme-barbara-johnson/6690583/

November 18, 2012: Counting the Lyme disease toll; Cases soar in the Northeast; CDC admits undercounting but declines 'epidemic' labelhttp://www.poughkeepsiejournal.com/story/news/health/lyme-disease/2014/03/21/lyme-counting-imprecise/6698009/

December 23, 2012: Babesiosis and the blood supply: Tiny tick, big threat http://www.poughkeepsiejournal.com/story/news/health/2014/03/24/lyme-babesiosis-threat/6699087/

December 24, 2012: The next tick scourge:Dutchess at center of rising tick threat http://www.poughkeepsiejournal.com/story/news/health/lyme-disease/2014/03/21/lyme-dutchess-tick-threat/6699395/

2013

May 19, 2013: Chronic Lyme disease: Is it real?

http://www.poughkeepsiejournal.com/story/news/health/lyme-disease/2014/03/26/so-called-lyme-wars/6907209/

Sidebar: Lyme emails request took five years; officials blame scope and fee waiver

http://www.poughkeepsiejournal.com/story/news/health/lyme-disease/2014/03/25/lyme-emails/6881349/

Sept. 15, 2013: Doctors Bucking Lyme Protocols

http://www.poughkeepsiejournal.com/story/news/health/lyme-disease/2014/03/28/lyme-antibiotics-protocols/7008045/

Sept. 22, 2013: Battle shifts over Lyme disease

http://archive.poughkeepsiejournal.com/article/20130922/NEWS01/309220049/VIDEO-Battle-shifts-over-Lyme-disease

Oct. 6, 2013: Lyme deaths: 9 in N.Y., 5 in valley

http://archive.poughkeepsiejournal.com/article/20131006/NEWS01/310060048/VIDEOS-LYME-DEATHS-9-N-Y-5-valley

Dec. 23, 2013: Sudden Death: Beacon father, husband, 38, is 1 of 3 killed by Lyme disease heart condition; warning issued

http://www.poughkeepsiejournal.com/story/news/health/lyme-disease/2014/03/28/lyme-warning-issued/7019461/

2014

Aug. 4, 2014: Dogs, horses show high rates of Lyme disease

http://www.poughkeepsiejournal.com/story/news/investigations/2014/08/02/bitten/13313003/

Aug. 5, 2014: Lyme Disease Treatment Cost Soars

http://www.poughkeepsiejournal.com/story/news/investigations/2014/08/03/doxycycline-lymedisease-antibiotic-petspeople/13554829/

2015

May 31, 2015 Review of Lyme disease treatment leaves out patients

http://www.poughkeepsiejournal.com/story/news/local/2015/05/30/lyme-disease-panel-charged-biased/28218615/

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