Lyme Disease, Science, And Society: Camp Other

So, some interesting rumors have been getting back me. Normally, I wouldn't care, but some of these are just so out there that I've decided to nip some in the bud.

I've already discussed the question of being Lyme Enigma (I'm not) so we can drop that one right away.

Some of the rest of the overheard stuff:

Is CO the maintainer of LNE or some other group? Is CO against ILADS because they showed up on LNE? Is CO against all alternative medicine? Is CO an infectious disease specialist? (What the... I already answered that in the FAQ.) Is some weird other group of people behind the creation of CO? (Love ones like that - the more vague the assertion, the better the rumor?) Is CO this... that... Etc.

Two things I have to state, right up front:

I began writing this blog to point out the poor journalism in The Chicago Tribune and to do a complete deconstruction of the horrible writing of Chronic Lyme: A dubious diagnosis. And it took off from there. There was no particular plan, really, beyond that.

I focused more on science because it's an interest of mine, and not as much on the patient experience. I did a bit of that, too, but I never set out to make it a focus.

Lately I've been focusing on other topics that were not originally the focus of this blog - but situations change, and sometimes due to circumstance or something newsworthy to me, I will write about something else. Like censorship. And if it is a topic that continues to interest others, I might give it more time, but I never want to lose the science aspect of the blog.

In terms of groups...There is no group of people behind the creation of this blog. It was one person's idea: mine. I may be on LNE and other groups and lists, but I'm not maintaining them. Also, as a member of any group, I'm not on here to represent any of them - I'm writing independently, for myself, and posted content is my idea.

Now, on to the rest of the rumors...

I'm not anti-ILADS. I appreciate very much that ILADS exists and has helped so many patients. I am pro good doctor and pro good LLMD, regardless of whether or not that doctor is a card-carrying member of ILADS or not.

I am not happy with doctors who give the profession a bad name because of what they do outside of work or against their better judgment.

I'm not against all alternative medicine. What I'm against is the idea of desperately turning to anything and everything without some evidence it will be helpful and worth the money.

I understand desperation... I've been close to suicidal with pain. I've taken herbs and have had acupuncture. In my experience, the herbs I used were okay and the acupuncture was really good at alleviating pain. So far, what has done the most good for me has been antibiotics and antiprotozoa medication, and there's plenty of evidence those work for what I've got. Acupuncture runs a close third.

I'm not against alternative medicine but I am against how people with chronic illness - including Lyme disease and other tickborne infections - are targeted for the sales of certain protocols and herbs and supplements.

I've seen a lot of spam. And then when it hasn't been obvious spam, it's been more subtle soft-sell approaches like people joining mailing lists in order to slowly tell others what's been working for them - only to find out later that they are a seller of the product or get a cut of the profits.

I don't like this - I want to hear from other patients who have no stake in the company talk about an herb or supplement. Like my issue with the IDSA, I don't want any conflict of interest or bias in my selection of alternative medicine. So for me, it's very important to know the person writing is another patient just like me - and is speaking from experience and not trying to sell me something.

I don't know if you can imagine how many supplements and treatments I've seen come and go. A lot. It'd be good to keep a reliable database somewhere showing which treatments gave the largest number of people the most symptomatic relief and the lowest number of side effects.

To add one more thought on this, I'd like to see more research on more effective antibiotics and technology to fight Borrelia and stop it in its tracks; do something to stop the antigenic variation because I think that's a big part of why it's hard to beat.

I'm not an infectious disease specialist. The thought of it turns my stomach right now... Even if I were one, I would be in the outlier group of them who would have a lot of questions about what to do to come up with better guidelines.

On being this, that, or the other, Etc. People keep trying to guess more personal information about me. I don't want to reveal it for my own reasons. If I drop hints, they're inadvertent, and I'd really rather focus on what's been written about Lyme disease and tickborne infections. If this changes, I'll let you know. Otherwise, the rumors will just have to continue.