Wednesday, 20 April 2011


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.


  1. 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.

  2. 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.

  3. 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.

  4. 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.

  5. 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!

  6. 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.

  7. Camp if you are signed into Facebook find my Facebook page and even without friending me you can see my friends.

  8. 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.

  9. 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.