Lyme Disease Radio Chat-Show from Scotland

[katieb]

Hi All,

Not sure whether this can be accessed from outside the UK, but if you can hear it it's well worth a listen. The Lyme discussion starts about 20 minutes into the broadcast and goes on for a whole hour. Really superb interviewer.

http://www.bbc.co.uk/iplayer/episode/b00s7p8f/Call_Kaye_03_05_2010/

Katie 🙂

[spacehoppa]

Thanks for posting that Katie. I only caught the last 20 mins and couldn't find the link to listen to it again.

[Roz]

Hi Kate,

I was able to listen to the first half in the States. It fantastic, I will be listening to the second halp this evening. x Roz

[Maz]

Kate, thanks for sharing this link. I was able to listen to the whole show. The interviewer was terrific and had clearly learned a good deal about the ongoing controversy in a very short space of time, but just unfortunate that there was only one doc being interviewed and that he was citing the usual chronic Lyme denialist IDSA stance. The study he kept referring to in the “peer-reviewed” literature was likely the Klempner study which was badly flawed according to my LLMD. In any case, no treatment guidelines should be based on one study and studies usually have to be replicated a number of times, demonstrating consistency of results, in order for concrete conclusions to be drawn.

Perhaps what was so starkly obvious from the show was how much patient experience differed from the same ol' claptrap these docs perpetuating about Lyme. The book on Lyme is definitely not closed and longterm antibiotics are not dangerous when taken in relation to the serious physical ailments untreated patients are suffering. In other words, the benefits of longterm antibiotic therapy far outweigh the risks. Yes, a patient might get clostridium difficile, but that can be treated…but is that worse than a patient having no quality of life and stuck in a wheelchair, unable to function to any reasonable degree for the rest of their lives? Dr Seaton's comments that patients most likely have some type of psychological disorder and not Lyme is pretty disgusting. If a person gets bitten by a tick, sees it, gets a rash, gets sick and is treated with 2 or 3 weeks of abx and doesn't get better…does that automatically mean they must have some psychological illness, the elusive and poorly described, “post-lyme syndrome,” or some other disease? Where are the peer-reviewed studies on that, I'd like to know? And, when did the doctor on the panel suddenly become a psychologist? What is interesting is that over here many of the LLMDs on the ILADs physician referral list are actually psychiatrists! They are treating Lyme patients because these patients can't find help elsewhere. :doh: Go figure. Was kind of interesting that the doc also brought up the history of Dr. A.S., the Yale doc who basically thought Lyme was a virus until Willy Burdorfer identified it as a spirochete. This guy was harrassed by disgruntled patients and no one deserves that, but he has a legacy of medical misdemeanors that have been compared to the Tuskagee Experiments (the non-treatment of pediatric Lyme patients to study the effects of chronic Lyme – see http://www.lymecryme.com/).
Sorry, got the wind up my skirts there a bit and on my soapbox. :roll-laugh: What is good about shows like this is that they are increasing awareness of the controversy, demonstrating the deep divide that exists between patient experience and medical guidelines, and also interesting to know that Scotland is now becoming quite Lyme endemic. It was a shame the caller who talked about coinfections and TB got cut off at the end…I think he was trying to make a comparison to the longterm abx treatment of TB, another persistent infection.

Thanks for sharing, Katie!

Peace, Maz

[katieb]

Hi Ruth, Roz & Maz

Glad it was useful and interesting – if very annoying ! Thanks for that great feedback Maz !

It was broadcast yesterday which was a public holiday in the UK which perhaps accounts for why there were a large numbers of callers, but also hopefully means that there were a lot of listeners too, so helping to spread the word.

The doctor seemed very indecisive and defensive – that much must have been clear to anyone listening – as it was to the presenter.

I picked up the link from the EUROLYME Yahoo group, where there has since been a good discussion about the broadcast.

By the way – looks like I may have been successful in getting my Band 31 epitope test done by Igenex (by hook or by crook !). Watch this space.

Katie 🙂

[jims]

Thanks Katie for sharing that. I listened to it and had to conclude the Doctor was very guarded in his stance on lyme. I think the caller they cut-off that started to mention TB was probably smarter than the Doc and thats why he got the boot. I think (like Maz) he was trying to bring about the nexus between Lyme and so many other conditions, and the importance to test for more than just lyme. I am going to an infectious disease doctor in Atlanta Friday, who I have been told is an LLMD. ( I pray she is) My only proof is my CD-57 test (score of 80)  and the years of symptoms and many many bites. My Gp is sarcastic and thinks I am being stubborn and wants me to continue with the Xanax and the psychiatrist. She thinks knee surgery would fix my knees, even though every time I got them drained they were fine while the fluid stayed down, and the ortho said no mechanical problems. (Now the fluid is too thick to drain) I am guardedly optimistic about my visit to yet another doctor. I will update everyone when i get back.  jim  p.s. I really enjoy watching spacehoppa on you tube, and Maz you need to go on the internet, something like blog talk radio and share your knowledge with an even wider audience, you could have guest speakers(docs) and ask them really hard questions about lyme and inflammatory arthitides!!! It would take a brave doctor to take your questions on!!! Just a thought…..

[Maz]

[user=1054]jims[/user] wrote:

I am going to an infectious disease doctor in Atlanta Friday, who I have been told is an LLMD. ( I pray she is) My only proof is my CD-57 test (score of 80)  and the years of symptoms and many many bites.

p.s. I really enjoy watching spacehoppa on you tube, and Maz you need to go on the internet, something like blog talk radio and share your knowledge with an even wider audience, you could have guest speakers(docs) and ask them really hard questions about lyme and inflammatory arthitides!!! It would take a brave doctor to take your questions on!!! Just a thought…..

 

Jim, you're a hoot, man! :roll-laugh: Find me a venue, though, and I'll be there, in spite of being fairly shy and not the kind to make a public spectacle of myself. :blush:

You know something, though…you might be on to something. On the RBF wish list is the hope that different physicians would be willing to come for live discussions in the chat area on the main site, focusing on various topics of interest for rheumatic patients and antibiotic therapy. If people here want to ask their docs if they'd be willing to come and do this – say a two hour chat session one evening or even on a regular basis –  then we would be most happy to set this up and host it. Topics of interest might be antibiotic therapy and infectious causes related to rheumatic diseases (of course), pain relief options, diet, detoxing, alternative healing methods, etc.etc.etc. The chat function on the main site is designed for these types of things, but Road Back is run by volunteer patients for other patients, so it's up to all of us to make this happen. Volunteers refer people to docs on the list, but it's the patients who see them one-on-one and have the opportunity to present this possiblity to their AP and Lyme doctors.

Btw, I love following Ruth's YouTube blogs, too, and check in every couple of weeks to see how she's doing! Keep up the good work, Ruth!

Jim, I don't know if I mentioned this before, but a good way to discern if the new Lyme doc is actually Lyme Literate is to call them up and ask if the doc is ILADs trained, is acquainted with and uses Burrascano's treatment guidelines and if they are aware of and use IGeneX labs or other specialty labs for Lyme.  If none of the above, then I'd run for the hills. 😉

Peace, Maz

[Roz]

Dear Maz,

My hope is if your up for it, that would go on 60 min., Cnn Larry KIng Live, etc…

Much Love, Roz

[spacehoppa]

Jims, That's actually a really great idea. And I'm sorry to say it Maz, because I know you're shy, but you would be the perfect person to interview doctors.

It would be best, I think, if the interviews were recorded and then placed on Youtube or iTunes and would therefore be searcheable.

My brother produces a fertility and pregnancy related Podcast called 'Just Relax, It'll Happen' that he lists on iTunes. He knows oodles about this, including how to record Skype conversations, which would be a good way to interview a doctor from his own office. So, if anyone (Maz, Maz, Maz 😉 ) was considering doing this, I could help with getting the technical side of things working.

Anyway, I think it's a brilliant idea, and just what is missing from the internet currently. It would also be a way of publicising the Road Back Organisation as well, but most of all it'd be a great source of info for new patients and those considering the possibility of having Lyme.

OK, no pressure *grin*, but it is a great idea.

And I'm glad *someone* is watching my YouTube blatherings. I sometimes feel like I'm talking to just myself! 😉 But even if that's true, it's a good diary for me to look back on.

[jims]

How about the interview being done on a dvd format as well, and submitted to public televison? One hour in length (edited). We would have to figure out how to raise funds to compensate the doctor(?) and pay for supplies. The requirements to submit programming for this are on www,pbs.org. It would take awhile to get this going. Maz do you think your LLMD would be up for it? I have some ideas for the questions/content. You could open up the RBF for content suggestions. jim

[Kim]

[user=1054]jims[/user] wrote:

How about the interview being done on a dvd format as well, and submitted to public televison? One hour in length (edited). We would have to figure out how to raise funds to compensate the doctor(?) and pay for supplies. The requirements to submit programming for this are on www,pbs.org. It would take awhile to get this going. Maz do you think your LLMD would be up for it? I have some ideas for the questions/content. You could open up the RBF for content suggestions. jim

Let's not forget we also need to raise funds to keep RBF alive.  Hey, we (the volunteers) are cheap, but the website isn't. :roll-laugh: Any donations are greatly appreciated.

Thanks……kim

[mkbeeliever]

[user=40]Kim[/user] wrote:

Let's not forget we also need to raise funds to keep RBF alive.  Hey, we (the volunteers) are cheap, but the website isn't. :roll-laugh: Any donations are greatly appreciated.

Thanks……kim

Funds sent in memory of Ayanna…thanks for the brilliant idea Kim!  I will send my sympathy card and let her family know that a donation has been made in her name.

Blessings,
Michelle

[Kim]

You are too kind, on many levels.  Thanks, Michelle.

Take care…..kim

[Maz]

Hi Ruth and Jim,

All great suggestions, but like Kim said, the website revamp is top priority right now and this is reliant on donations. With the ecomomy the way it is presently, donations have been reduced to a slow trickle, at best. The main site is the major outreach tool for RBF, being a web-based foundation, so this must be the main focus: to overhaul the site and make it more user-friendly, current, easily navigable, studies and articles refreshed, etc

Certainly, though, when the time comes for producing something like a video or audio interviews, it will need to be put to the board of directors, produced professionally and a committee of volunteers set up to deal with all the intricacies of development. This all takes a ton of man-hours to coordinate, people on a working committe, as well as the funds.

In the meantime, though, my suggestion was that if anyone wants to ask their AP or Lyme doc to be a guest one evening on an interactive text chat session, then let us know. These are something that can be run on an ongoing basis with a few volunteers to do the moderating.  

Peace, Maz

PS Michelle, what a beautiful idea to send a gift to RBF in memory of your dear friend, Ayanna. What a lovely tribute to your friendship to pay it forward like this.

[spacehoppa]

Hi Maz,

I was a web designer before my kids came along and I had to take over running my dad's business when he sadly died five years ago.

I'd be very happy to help redesign the web site for free, obviously, if I could be of help.

[Author]

Posts