WE HAVEN'T HEARD THE LAST OF XMRV-ME/CFS-LYME DISEASE

Friday, 21 January 2011

WE HAVEN'T HEARD THE LAST OF XMRV-ME/CFS-LYME DISEASE

Thanks to Andrea Pring for raising awareness of the struggle for patients with ME/CFS and the desire for the true science to come to light in order to help the patients.

My own history of different diagnosis fibromyalgia, ME/CFS, Arthritis, Muscle weakness, Musculoskeletal Disease, Polymyalgia Rheumatica, as my symptoms deteriorated over 4 years is documented in the right hand column of my blog. Eventually a chance course of antibiotics significantly improved my symptoms and led my GP to suspect Lyme disease.

After many many months of antibiotics I am nearly 100% improved.

What has appalled me the most is the way these diseases and others are marginalised by our medical bodies, when they have been aware for more than 30 years much of the extent of the damage and causes that the illnesses do, but choose to ignore and allow patients to be blamed for their poor health.

How many of the illnesses such as Autism, Alzheimer's, Multiple Sclerosis, Parkinson's, Rheumatoid Arthritis, etc will be found to be as a result of pathogens possibly unknown but some no doubt already known but ignored.

Currently treatments are palliative, if any at all, or suppression of what is assumed, not known, to be an auto immune dysfunction.

I will not post any more of my own thoughts or opinions here on this post but anyone interested can scroll back through this blog at the many posts with links to fascinating research, that if nothing else exposes so many attitudes in medicine for what they are attitudes and opinions but not always based on sound evidence and certainly not the Evidence based Guidelines the general public has so much faith in.

We haven't heard the last of XMRV-ME/CFS-LYME DISEASE

6 comments:

Kari21 January 2011 at 23:35
Thank you so much for your thoughtful and well-written post. How wonderful that you are feeling so much better!
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Anonymous21 January 2011 at 23:57
Thanks for sharing, Joanne! I'm so happy to hear that antibiotics have helped you so much! :)

Hugs from Norway
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Denise Longman22 January 2011 at 10:44
Thanks for writing about this Joanne, your blog is brilliant.

I would urge people to try and donate money to the Whittemore Petersen Institute where Dr Judy Mikovits and her team are doing the ground-breaking research. Why our own government's health research scientists are so poor at finding out what's going on, and warning the public about vector-borne illnesses such as Lyme and Q fever, I don't know, but it's essential that we show support for those scientists who do have the patients' best interests at heart.

best wishes,
Denise
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Anonymous22 January 2011 at 12:21
Thank you , I have passed from doctor to doctor with symptoms that you have suffered , stll no further on i will be having last test Pituatry test !! its all exausting with no help from GPS /docs !!
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Joanne22 January 2011 at 20:19
Thanks everyone for your comments good luck sultan60 with finding the cause of your health problems.

Densie yes I quite agree about sending donations to Whittemore Peterson Institute they are one of the few places that are really pushing forward to try and get to the bottom of theses health problems in the field of ME/CFS but actually finding it has a much wider impact on human illness ie neurological illnesses, than they ever expected.

I was in a hurry to do this post but elsewhere in my blog I have posted about donating to WPI.
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Tina Tidmore24 January 2011 at 00:07
If the virus turns out to be the cause, the WPI scientists deserve the Nobel Prize.
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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