Lyme disease discussion

I just posted this in my Lyme Disease group. I’ve been very quiet for a long time, because I’ve been more focused on getting to the root of the my underlying immune deficiency.

Recent articles on Yahoo have been upsetting to me though…I felt like it was time to speak up again.


Media Exposure Regarding Lyme

Does anyone have any contacts at Yahoo news?

I’ve been concerned lately about the number of articles on Yahoo about Lyme disease, painting Lyme disease in not such a good light. I think it would really help us if there was someone with any contacts over at Yahoo news, who could contact them and set up some kind of causal meeting–not a confrontation (that just feeds into the IDSA–that we’re all a bunch of crazy lunatics–), but a causal conversation regarding the issues behind Lyme disease–

On the one hand, I’m glad these articles are being posted, because it’s showing a growing understanding of the severity of Lyme disease, but I concerned at some of the hidden assumptions in these articles.

The key facts to remind the people at Yahoo:
1) testing is unreliable, and people with false negatives deserve access to treatment
2) everyone’s immune system is different–some people have stronger immune systems than others, and therefore treatment has to be based on the individual’s response to therapy.
3) patients are not ‘innocents’ being deceived by malicious doctors, but patients are active players in their own care. Especially now that we live in an Internet world, where we all have access to so much information all of the time, people can take an active role in their chosen therapy and treatment, understanding the risks v benefits.

What the IDSA has done very well–and other mainstream medical groups–is penetrate the media causally behind the scenes, schmoozing them up so to speak.

It’s time to step up our media game, by trying to find casual ways in to talk with these people. I think we should also stick to the facts that everyone agrees, even the IDSA–that the tests are unreliable, everyone’s immune system is different, and there are many other diseases that can require ongoing antibiotic therapy (like people who take preventative antibiotics everyday because they have so many sinus infections, those kind of things).

There are many examples in the medical mainstream of people who need ongoing antibiotic therapy, not just Lyme patients. Let’s put those cases on the table as well.

The news executives at Yahoo, Google, control a lot of how people perceive and talk about Lyme disease–I think California Lyme should reach out the them in any way possible, to help better educate them regarding the main issues.


The someone responded, agreeing with my statement, and adding the part about how the media talks about the dangers of bad Lyme doctors, and I responded with this:



I agree that it is important to point out that yes, there are scammer doctors out there, just as there are scammers in all professions (didn’t they just bust a bunch of physicians for Medicare fraud?)

I think it’s also fair to point out that they’re right, there are some ‘Lyme’ patients who don’t have Lyme, and might even be hypochondriacs–

But we can’t punish the good doctors and we can’t punish the truly sick patients because there are a few scammers and a few hypochondriacs in the world.

How do we tell the difference? A good relationship between physician and patient.

Just like there have been evil Christians in the world, we don’t punish all Christians because there has been some bad ones (Hitler comes to mind).

Clearly, the IDSA spreads these scare tactics to try and encourage other doctors to deny medical care–why? Because denying medical care is cheaper for the insurance companies. That’s what this is all about–

The IDSA can’t say that of course, they have to wrap their denials around science sounding medical language, but it’s all just about denying care.

That’s why, I think we need to reach out to the major media players–the people who make decisions regarding what gets posted online–but do it in a more causal way, try to reach them on a personal level.

I think reminding people of the basic facts–and also of other diseases, that require long term antibiotic care (like even sickle cell anemia), is important, because there is an acknowledge precedent in medicine for long term anbiotic therapy–Lyme disease didn’t invent this concept.

Sometimes, the human body gets so overhwhelmed by an infection, that even after the worst is over, they still need antibiotic therapy to keep the disease at bay (for example, some endocarditis patients need long term antibiotic therapy).

Right now, it seems they are signally Lyme patients, and all of the ‘dangers’ of long term therapy, without acknowledging there is a precedent in medicine for such therapy.

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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