8 What I'd Like To See The IDSA Do For Lyme Patients In 2012

Since Camp Other is not on Facebook and has only had the link and comments list (including deleted comments) passed along, I've decided to post here what my answer is to the IDSA's question, "What would you like to see from your society in the coming year?"

I realized in reviewing all the comments I've seen to date that some people are thinking along similar lines as I am. But anyway, here's my proposal:

I would like to see the IDSA publish a paper which characterizes all the data on those patients who have stated they have been diagnosed with chronic Lyme disease and/or Post-Lyme Disease Syndrome. What are the similarities both in terms of empirical testing (not just ELISA C6 and WB, but immunological as well), history, presence of coinfections, genetic profiles, preexisting conditions, and symptom presentation in this patient group? It'd be good to see aggregation and see if there are specific subgroups of all these patients - rather than just see and know about patients who met CDC surveillance criteria who could participate in clinical trials. Those who are living with CLD/PLDS may not be those who end up participating in clinical trials. Let's see a characterization of the data first, much like what the Norwegians did this past summer in an NIH study, "The Phenomenon of "Chronic Lyme"; an Observational Study"(of which I am still waiting for the results).

I would like to see the IDSA publish a detailed web site which explains their own hypothesis or hypotheses for autoimmunity giving rise to persisting symptoms after antibiotic treatment for Lyme disease. There is little detailed information available online all in one place on how autoimmunity hypotheses came to be adopted after persisting infection models were considered - even though there are plenty of research papers where the purpose was to determine any autoimmune factors in infection. The information is not laid out in one logical coherent piece displaying all the building blocks of findings for others to see. If the IDSA thinks they have a strong argument in favor of autoimmunity and many people fail to agree with it, it seems to me they have failed to support it.

I would like to see the IDSA also include on that web site what the evidence is for persistent infection after antibiotic treatment, and a detailed explanation on why they think an infection cannot persist beyond 2-3 weeks of antibiotic treatment in any patient, and a list of criteria which would need to be met in order to determine that Borrelia does and can persist in its host. (Something specific about #2 on this page, and more detailed.)

I would like to see an extension of the proteomics research which distinguished the CSF proteins of Chronic Lyme Disease/Post-Lyme patients from the CSF proteins of CFS/ME patients. In particular, see a comparison between acute Lyme disease, late stage Lyme disease, and chronic Lyme disease protein distributions. Are they the same? Are they different? Can we use this knowledge to learn more about disease progression?

I would like to see some more research done on how different genospecies of Borrelia register on different serological tests for Lyme disease. It might not even be fair to continue using tests for "Lyme disease" - what might be a more accurate test panel would be one for Borreliosis, which covers all Borrelia including relapsing fever Borrelia and forms of Borrelia which do not always present with the tell-tale EM rash (hardly tell-tale under those circumstances). I'd also like to see related research on how repeat panel testing catches more disseminated infection which was not caught earlier. (The issue here being that early suspicion of disease must be present - ethically if you suspect and do not treat, this creates problems when one is found serologically positive.)

I would like to see some more research done on how different antibiotics affect different kinds of Borrelia. The fact that some patients do experience treatment failure even in early Lyme disease - up to 10% of all acute patients - may be due to the efficacy of their initial treatment. Refer to this:

"In Vitro Susceptibility Testing of Four Antibiotics against Borrelia burgdorferi: a Comparison of Results for the Three Genospecies Borrelia afzelii, Borrelia garinii, and Borrelia burgdorferi Sensu Stricto."

"In 7 out of 12 comparative evaluations (P > 0.05), MBCs were significantly different among the three genospecies. B. garinii seemed to be especially susceptible to azithromycin, while amoxicillin had a significantly greater effect on B. burgdorferi sensu stricto compared to the other genospecies. Ceftriaxone had the lowest MBC with B. afzelii and increasingly higher MBCs with B. garinii and B. burgdorferi sensu stricto. Doxycycline did not show any remarkable differences in its effects on the three genospecies."

Most of all, I would like to see the IDSA have a heart, and for dismissive opinions such as "In many patients, posttreatment symptoms appear to be more related to the aches and pains of daily living rather than to either Lyme disease or a tickborne coinfection," to not be included in official professional medical guidelines for the treatment of Lyme disease. Any opinion such as this must be rigorously backed by fact and not by comparison to the population at large. Any condition which involves pain as a symptom could be compared to pain in the population at large. This should not distract one from the fact that certain medical conditions involve pain as a symptom. The controversy in Lyme disease may not end any time soon, but if patients were taken at their word for describing the serious limitations and degree of pain that they experience on a daily basis, that would go a long way towards a first step at healing the anger so many of us have.

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0 IDSA Requesting Feedback On Facebook

Well, the past 24 hours in Facebook Lymeland have certainly been interesting...

The Infectious Disease Society of America (IDSA), of whom a subset are authors of the 2000 and 2006 Lyme Disease Treatment Guidelines, decided to solicit comments from their readers on Facebook at the below link:

https://www.facebook.com/IDSociety/posts/357764004239867

The question they posed was simply this:

"What would you like to see from your society in the coming year?"



And with that question, the floodgates opened, and a rush of disgruntled sick Lyme disease patients, chronic Lyme disease patients, caretakers of patients, patient advocates, physicians who were not LLMDs but were on long term treatment, and those questioning chronic Lyme disease's causes and wanting answers responded at length.

At some point, responders complained both on and off Facebook that whoever moderates the Facebook IDSA page was deleting their comments - even if the contents were not abusive, insulting, or engaging in ad hominem attacks. I don't know the full story there, having only caught a portion of the accusations about deletions.

But I will say that whether one agrees with the content in total or not: over 1500 comments in so short a period of time is notable.

What would you like to see the IDSA do in the coming year?

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5 Commentary: Looking At Lyme Groups on Facebook

After there's been much brouhaha over my first forum banning - more than I expected, actually - I'd like to take a little time-out from that to look at the many Lyme disease-related groups on Facebook.

But before I begin, apologies, to those of you who ended up on this page after using google and realizing it's the wrong page...

Sorry, to you who are tourists on your way to Connecticut who just found this page and are scratching your heads after you googled looking for information on Old Lyme and Lyme, Connecticut - I suggest you put "- disease" in your search box in order to remove mention of Lyme disease from your results.

And to the residents of Lyme and Old Lyme, I am very, very sorry... you have probably had enough of your beloved hometowns being associated with a tickborne illness. That really sucks, as both towns have things to see and do which do not involve infectious diseases, like visit the Florence Griswold museum.

The rest of us reading along hope to someday be amongst the residents to your north in Hadlyme... if that name has anything to do with the condition of its residents, that is.

Okay, now that those who are looking for other things have gone elsewhere - such as their fabulous vacation to Old Lyme - you should know upfront that if you are expecting an in-depth review of groups here, that is not what you're going to get today.

Do you know why? Because there are too many groups and pages for Lyme on Facebook.

Just typing "lyme disease" into the search box led to my poor arthritic finger getting worn out from hitting "More Search Results" at the bottom of the page. I don't know where to even begin, and anyone on Facebook who is new to Lyme disease probably won't know either... It's like 300 channels of cable, baby, and nothing on!

Okay, it's probably not that bad, but...

The images to your left are just a fraction of the groups which exist on Facebook for those who want to learn more about Lyme disease. I only posted about three screens of them... I could have copied and pasted more, but I do have a limit to my energy (and sanity) for all of this.

Imagine being diagnosed with Lyme disease and trying to find information and support on Facebook.

The options are overwhelming.

Obviously, if you know to look for a local support group, the task might be easier for you because you can start by looking up the nearest town or city which has a support group.

But there's a lot here to look at... and sort through overall.

Other than by your location, how do you determine where to begin when you are totally new to the scene?

And even if you aren't new to the scene, how do you find specific subsets of groups you might want to join without knowing where to look in advance?

Maybe you want to sort by different categories of Lyme support  or information groups - but there are none organized there to sort by.

Looking at it all, I think one thing that would help is if people got a whole lot friendlier... You all need to get closer together and support one another, it's important in these times.


For example, let's say I'm new to Lyme disease and I want to find friends who can relate to what I'm going through. So I type "lyme friends" into the search, and here's what I get...

Wow, a lot of Lyme friends!

(Again, apologies to the East Lyme Friends and Friends of Lyme groups... I think you are probably waiting to befriend those tourists I was talking about earlier...)

But as for the rest of you - especially those poor 2 people at the very bottom - you seem kinda lonely down there...  And yet, you are friends, too.

Wouldn't it be nice if you got together and all made one giant group of friends?

Or, if that doesn't work - and you are all fighting each other - can't you each at least call yourself something else different?

There are so many places where I can see the possibility for combining forces, really, and that alone would cut down on the sea of groups I am drowning in...

Like you guys...






Ought to get together with these guys...

And you guys...

Really need to talk to these guys...

Maybe these guys...

should seriously work with these guys, too, no?

I also think that these guys...

really need all the support they can get, as Lyme disease has been considered even more controversial to have in their country.

I really wonder sometimes about people's individual stories, too...

Maybe this person should consider....

getting together with this one?

Maybe they can help them with Lyme Disease and support each other in getting well and getting back to class.

On the other hand...

I think these guys...

probably shouldn't talk to these guys...

unless they stop using the word "gay" because it could possibly lead to some heated arguments.

The healthy thing, of course, is to take on the right attitude...

And probably avoid looking at the dark side of things too much.

Including the unfortunate side of Facebook, where Facebook's format and coding just messes everything up. 

Such as...

3 people like this?

No one likes that. 

Bad, bad, Facebook. You're not getting a gift next Christmas. Not even coal.

And not to be outdone by the poorly misplaced "Like" above, there is always the unfortunate placement of seemingly unrelated events to others...

I knew some of us needed medication, but this is ridiculous... 

Okay, "Thorazine Overdose" looks like it's the name of band, but why is it next to entries about Lyme disease?  

Note to bands: If you are holding a Lyme benefit, put that at the top of your announcement.  

Almost last but not least, if you are really lost in all of this and there is no way to find your way around this - someone put together one group to rule them all...

With 488 members - and possibly more now, since I've posted this - there has to be some sort of index or guide to it all!

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