LOOKING AT LYME DISEASE

Showing posts with label HGRV. Show all posts

Tuesday, 24 August 2010

HGRV-XMRV-MLV NEWS

The Whittemore Peterson Institute would like to congratulate Harvey Alter, MD, and Shyh-Ching Lo, MD, PhD, on their publication of the replication study.

A quote from Dr Joe Burrascano for patients with Lyme Disease-

'Definitely stay tuned - the volume of new and important information about this virus and its disease associations is increasing rapidly and in my opinion should be a concern to every patient with chronic neuro-immune diseases, including those with chronic Lyme.'

The Wall Street Journal here

The Washington Post here

The New York Times here

CNN here

The LA Times here

The Scientist here

Pro Health here

VIP dx tests here

Living with Chronic Fatigue Syndrome many links here

CFS Central an excellent read here

CFIDS here

Other articles as posted by Life as we know it here

Fox10TV here

MSN Health here

Science here

Business week here

Monday, 23 August 2010

DETECTION OF MLV-RELATED VIRUS GENE SEQUENCES IN BLOOD OF PATIENTS WITH CHRONIC FATIGUE SYNDROME AND HEALTHY BLOOD DONORS

The long awaited Alter/Lo paper thanks to blog Life as we Know it.

http://cfs-facts.blogspot.com/2010/08/and-here-it-is-long-awaited-paper.html

http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html

Detection of MLV-related virus gene sequences in
blood of patients with chronic fatigue syndrome
and healthy blood donors
Shyh-Ching Loa,1, Natalia Pripuzovaa, Bingjie Lia, Anthony L. Komaroffb, Guo-Chiuan Hunga, Richard Wangc,
and Harvey J. Alterc,1

Chronic fatigue syndrome (CFS) is a serious systemic illness of
unknown cause. A recent study identified DNA from a xenotropic
murine leukemia virus-related virus (XMRV) in peripheral blood
mononuclear cells (PBMCs) from 68 of 101 patients (67%) by nested
PCR, as compared with 8 of 218 (3.7%) healthy controls. However,
four subsequent reports failed to detect any murine leukemia virus
(MLV)-related virus gene sequences in blood of CFS patients. We
examined 41 PBMC-derived DNA samples from 37 patients meeting
accepted diagnostic criteria for CFS and found MLV-like virus gag
gene sequences in 32 of 37 (86.5%) compared with only 3 of 44
(6.8%) healthy volunteer blood donors. No evidence of mouse
DNA contamination was detected in the PCR assay system or the
clinical samples. Seven of 8 gag-positive patients tested again positive
in a sample obtained nearly 15 y later. In contrast to the
reported findings of near-genetic identity of all XMRVs, we identified
a genetically diverse group of MLV-related viruses. The gag
and env sequences from CFS patients were more closely related
to those of polytropic mouse endogenous retroviruses than to
those of XMRVs and were even less closely related to those of
ecotropic MLVs. Further studies are needed to determine whether
the same strong association with MLV-related viruses is found in
other groups of patients with CFS, whether these viruses play
a causative role in the development of CFS, and whether they represent
a threat to the blood supply.

XMRV-HGRV ME/CFS/LYME DISEASE UPDATE

Posted on Madison area Lyme Support group see here

Second email:
Hello!Thanks for letting me know there is a buzz about this going on.I am not part of the WPI (Whittemore Peterson Institute) but I do have an interest in HGRV (formerly known as XMRV) because I strongly believe it is an important contributor to what we know as chronic Lyme. I also believe it is involved in some way with autism and CFIDS, and possibly other so-called “neuroimmune diseases”.What is needed to further the study of HGRV is to set up clinical trials, because so far, all formal work on this virus is being done in the labs. To accomplish this, we are in the process of setting up a clinical working group, to consist of an alliance between researchers and clinicians. I was invited to join this group- of course, I accepted.That is the scoop- please feel free to forward this note to any interested parties.Thanks!Dr. B…………………….!
Contact Colleen Nicholson 516-286-7196
Research Assistant to Dr. Burrascano, MD
burraj51@bigplanet.com

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