HAS THE IOM REPORT FINALLY TIPPED IN OUR FAVOUR

Wednesday 20 April 2011

HAS THE IOM REPORT FINALLY TIPPED IN OUR FAVOUR

People live in a World of growing interdependency and complexity. The old English word connexity is an appropriate description that helps to define the combination of connectivity and complexity that is our reality.

Tick-borne diseases (TBDs) including Lyme disease are certainly embedded in our world of “connexity.”

This group of diseases defies simple cause and effect explanations and, while science has enabled us to uncover critical information on TBDs, we also realize that much more remains hidden.

The above extract from the Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes - Workshop Report see here

With the recent information finding that some patients with ME/CFS are being found to have XMRV and Lyme Disease this is not only of significance to just patients with Lyme Disease.

9 comments:

Camp Other15 July 2011 at 11:01
Joanne - I'm just leaving a comment here on a random post to check in with you. I know I have posted several comments to your blog, but I have not seen any of them get published. Can you please tell me why? I don't know if I am doing something wrong, web-wise, or if there is something in my content which has been inappropriate. Please let me know - feel free to drop a return comment my way as all comments go to moderation.
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Joanne15 July 2011 at 14:57
Hi Camp other nice of you to pop by, I always welcome posts to my blog but not spam which I delete if I judge it to be spam. I have never recollected seeing a post from you and would not have deleted that in error. i was introduced to your blog by Pam Weintraube's Facebook so you were highly recommended.
I have had a few problems with updating my computer and since I have sorted that out I don't seem to be having so many problems with blogger so maybe that was why your comment didn't get through.
It is sometimes a lonely business blogging although when i started with my garden blog it soon became interactive but sadly I just do not have time for that these days as Lyme advocacy is so much more important.
Interestingly I have had feedback from one or two doctors to posts on my blog and find it pops up in the most unexpected places but most importantly it is a very useful resource for me to find things quickly so that I can pass links on to others.
There is a growing nucleous of Lyme patients in my locality already about 28 and our regular bimonthly meetings are well attended by about 8-10 people so chronic Lyme is not quite such a rare thing as our HPA would have us believe.
I appreciated your link to the Flipcard which I have posted at the top right of my blog it is so much easier to find things, I also had fun using it on my garden blog and looks very pretty with all the flowers.
I just haven't had chance to play with google statistics but will one day.
Nice meeting you and do call by again and leave a comment.
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Camp Other15 July 2011 at 18:55
Joanne,

Thanks for your response. Yes, I have responded to a few of your posts including the one on autism, I believe. I guess we will never know what happened to my comments and they went into some Blogger void. Unfortunate.

You found my blog through Pam's Facebook? That's great. People keep encouraging Camp Other to put one up, but as it is managing one blog is more than enough to do. It can take a while to write up one post if I'm feeling particularly fatigued and it's a more research-intensive entry.

Doctors have written to you? That's excellent. I hope to hear more more about this and that more people from medicine and the biological sciences get engaged in discussing Lyme disease and other tickborne illnesses. Have you seen the blog, "My Lyme Disease Story"? It's about a female doctor who contracted Lyme disease while hiking in Yosemite National Park last year. She's documenting her Lyme journey, has a Hickman catheter and is on IV antibiotics. If you haven't seen it, I suggest checking it out.

Twenty-eight locals with Lyme disease - I don't know what population density your locality has, but that's notable. I've been reading about how the UK seems to have its head in the sand about just how endemic Lyme disease is there. Both climate scientists and entomologists have predicted Lyme disease would be spreading in areas it was either low in population or nonexistent - and here it is, happening. These folks have to wake up and address this hard reality. It's only going to help and prevent more harm.

I'm glad you enjoy the Flipcard layout. I thought it was interesting to see the web site in a new way, and I can see how that would work for flowers - they'd look like tiny seed packets in a row.

Yes, do play with Google Trends and especially Google Insights. Try other Lyme related terms. It's interesting.

Thank you for visiting my blog too. Maybe someday when I'm better I'll fly over and we can have tea for real.
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Joanne15 July 2011 at 19:21
I'll put the kettle on then shall I. LOL!
Actually that is not so funny as you think as someone who follows my Joanne's cottage garden blog and eventually Eurolyme became a great friend she lives in Edmonton Canada and was infected with Lyme whilst visiting Germany. We are now great friends and she has visited UK (is an ex pat from Geordie Land) twice staying here with myself and husband on both occasions and actually consulted with my LLMD as well as coming to the Lyme Disease Action conference, so calling for tea is not such a wild idea as one might think health permitting.
Facebook is great because there are some very interesting posts from certain people on Lyme it is not necessary to spend time in posting yourself but a very useful resource.
I haven't found Twitter quite to useful although my blog posts load automatically on both and seems I have quite a number of followers even though I don't use it much myself. Another use is if you post a comment on one of these rubbish articles like Trine's and use Facebook to register it means that others can link to you. I picked up someone this week through this and have been able to forward lots of useful information, she has had ME/CFS diagnosis for years but realises it could be linked to a tick bite whilst visiting the Lake District. We will see but it is so satisfying when people who wouldn't otherwise think of Lyme follow up and eventually feed back that they have been diagnosed and more importantly when they start improving in their health.
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Camp Other16 July 2011 at 05:05
Joanne,

I only have a brief moment to post here, will hopefully get a chance to respond more later. Can you please tell me which sites on Facebook are useful for Lyme science? I have been on Facebook and wrote about how many Lyme-related pages and groups were there, but not much science-related seemed to be there at the time. Thanks!
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Joanne16 July 2011 at 07:39
Hi Camp well apart from the obvious ones such as CALDA, Can Lyme, BADA uk and Lyme Disease Action UK I have been following someone called Mel Thornberg who seems to find lots of very useful scientific papers not just Lyme but other things that may well link into this complex disease then there are a few friends from Eurolyme who are good at posting interesting Lyme related things including newspaper articles which can enable a comment and thus raise some more awareness. I also follow Kathy Blanco whose son has Autism and Lyme Disease she was a founder member of Lyme Induced Autism Foundation.I also take an interest in developments with XMRV in view of Burrascano and other Lyme Doctors mentioning it as a possible link in the complex illness of chronic Lyme. I am sure there are many more including Tom Grier, Bransfield, Pam Weintraube.
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Joanne16 July 2011 at 07:41
Camp if you are signed into Facebook find my Facebook page and even without friending me you can see my friends.
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Camp Other16 July 2011 at 19:16
Joanne,

Thanks for sharing all those pages with me. Right now, it's too difficult to search Facebook to find Lyme disease pages with a specific focus, and I wish they would give categories/tags for people to label their groups/pages. Would make it easier.

I would love to fly over and see you when my health and situation improves. Unfortunately, I don't see that happening in the immediate future. But I am hopeful, as I traveled inbetween my first battle with Lyme disease and relapse. Such things can happen again. (And again?)

Re the woman from Lake District: I think it's important for doctors to always consider Lyme disease and other tickborne illnesses as a differential diagnosis, and will be more so as time goes on. If they just looked at more people for early Lyme disease, this would already improve so many people's lives. I hope this woman is getting the treatment she needs and is doing better.
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Joanne16 July 2011 at 20:46
Here's hoping your health improves and you are able to resume your life soon. The woman probably infected in the Lake District is now heading to one of our precious few LLMDs so even if it turns out not to be Lyme I know they are in the forefront of treating patients with ME/CFS so she will be in good hands.
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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