So the IDSA is not responsible for this Lyme disease mental illness thing, but isn't that pretty much their opinion anyway? Check out their articles on the web site. They refer to chronic lyme disease as "controversial". And after people bugged them enough, they had a meeting and unanimously voted that the current treatment guidelines for Lyme disease are adequate. They VOTED! Seriously? 68% I believe it said... If they really cared, just one person voting that it wasn't sufficient should prompt them to do some research. I don't want to wish this on anyone, but if one of them or their children started having some of these symptoms, they would change their story. The world has thought every major scientist/philosopher that completely changed medicine or how we view the world was crazy...are we still so confident that we think we know how everything works? Jessica, diagnosis: unsure

Stutterbug,

What makes you think that Lyme isn't chronic? I don't think Lyme is in ANY way controversial. The system is just corrupt. As an infectious disease scientist (that studies another chronic infection), I guarantee that if you showed the data to ANY qualified scientist (in a blind manner) they would tell you the exact same thing. There are emerging antibiotic resistance strains of malaria along the Thai/Cambodia border (as highlighted in the latest edition of Science mag.). Should we just tell those people they are 'cured' even when it is clear that the don't fully respond to the medications? What if a 'post-lyme syndrome' did exist? Why isn't there a single person in the world studying it?

That being said, I don't disagree with not using antibiotics for treatment (in some cases). Antibiotics (especially at very high doses for a long period of time) can start to be counter-effective in my opinion. More studies need to be done on pulse therapy.

At the end of the day, the research being done with Lyme is elementary at best. If a major initiative was taken (like during the early AIDS epidemic) I expect significant progress would be made. But that will never happen until NIH decides to designate more funding to Lyme (which probably won't happen anytime soon with the current financial issues in science).

In reality, I don't care if people want to sit around and argue if Lyme is or isn't chronic. I want to see new and improved treatments for Lyme (or the so-called 'post lyme syndrome') and that isn't going to happen until people realize that this is a truly devasting illness effecting a large number of people (worldwide).

The two concepts don't have to be mutually exclusive. Doctors shouldn't get stuck on one or the other. You can have both a chronic infection and permanent damage from an infection that was cured.

My ears have been ringing nonstop for over three years now. My ears are probably permanently damaged and will probably never stop ringing. I think that the joint inflammation associated with Lyme can also cause permanent damage. Lyme patients who are cured may never be fully free of joint pain. I also have had many neurological symptoms. I can totally believe that I have permanent neurological damage that will never be completely resolve.

I also think that I have chronic Lyme disease. When I go off antibiotics, I don't just have the same symptoms that I had before. My symptoms get worse, and I develop new symptoms that I never had before. That suggests to me that I have an active infection spreading to new areas of my body.

What you said is so right on that I'm not even going to comment on it. The only change I made was making your last comment in bold. What you said is the absolute truth! Thanks for posting this.

Gary

needshelp said...
Stutterbug,

What makes you think that Lyme isn't chronic? I don't think Lyme is in ANY way controversial. The system is just corrupt. As an infectious disease scientist (that studies another chronic infection), I guarantee that if you showed the data to ANY qualified scientist (in a blind manner) they would tell you the exact same thing. There are emerging antibiotic resistance strains of malaria along the Thai/Cambodia border (as highlighted in the latest edition of Science mag.). Should we just tell those people they are 'cured' even when it is clear that the don't fully respond to the medications? What if a 'post-lyme syndrome' did exist? Why isn't there a single person in the world studying it?

That being said, I don't disagree with not using antibiotics for treatment (in some cases). Antibiotics (especially at very high doses for a long period of time) can start to be counter-effective in my opinion. More studies need to be done on pulse therapy.

At the end of the day, the research being done with Lyme is elementary at best. If a major initiative was taken (like during the early AIDS epidemic) I expect significant progress would be made. But that will never happen until NIH decides to designate more funding to Lyme (which probably won't happen anytime soon with the current financial issues in science).

In reality, I don't care if people want to sit around and argue if Lyme is or isn't chronic. I want to see new and improved treatments for Lyme (or the so-called 'post lyme syndrome') and that isn't going to happen until people realize that this is a truly devasting illness effecting a large number of people (worldwide).

Sorry if I upset anyone, that wasnt my intention. love, amey