Monday, May 16, 2011

0 Q & A From Camp Other

Wherein Camp Other answers questions that are assumed one might ask, but haven't been directly posted...

Q: Why do you write about Lyme disease as something that might be a chronic, persistent infection at some times and not at others?

A: Because sometimes there might be a chronic, persistent infection in some people. There are case studies showing it does happen, with Vicki Logan being probably the most dramatic and well-known publicized case. This New York Times article from 1993 about Vicki even contains a footnote from Allen Steere, saying on rare occasion, Lyme disease can be chronic. Today, it's said Steere changed his mind - but when this happened and what the milestone moment was remains unclear to me. This is something many Lyme disease patients would like to know. But nonetheless, there are case studies that show people can have persistent infections - as well as animal studies.

Q: Do you think you have a chronic and persisting Lyme disease infection?

A: How many people really have persistent infections is unknown - and the problem is that there is no test in existence which can determine this. This is a source of much frustration for me.

If that sounds evasive, I don't intend it to be - all I know is that I have had a textbook case of Lyme disease and antibiotic treatment has helped with symptoms. And that's it.

Q: How did you know you had Lyme disease in the first place?

In my case, I knew right away. I was bitten by a tick during a hike and found it hours later. I went on to develop a raised red rash that kept expanding around the bite, and then developed symptoms of the worst flu I ever experienced. I had additional symptoms which were very intense. I had a positive Western Blot and a doctor treated me with antibiotics - however, they were not the first choice in antibiotics used for Lyme disease due to allergies. I also contracted Babesia, which was confirmed by testing. I was later told my initial symptoms were as severe as they were due to Babesia. From research I have read, this makes sense.

Q: How are you doing now?

Better. Not 100% well, but better. And I say this cautiously, as I've had stretches where I've felt better and stretches where I've felt like utter shit.

Q:  Why is it that patients with persisting symptoms of Lyme disease are sometimes given the diagnostic label of Chronic Lyme Disease and at other times, Post Lyme Disease Syndrome?

A: That question has been addressed elsewhere on this blog. Attempts to address it more eloquently may occur. As it stands, I have come up with a new term that I think both the IDSA, NIH, and Lyme disease patients could agree to, and that is Schrödinger's Lyme disease. Anyone versed in quantum mechanics should have an appreciation for my use of the term.

Q: Why do you persist in this issue of persistence when many scientists think there is an autoimmune disorder underlying those who have persisting symptoms since contracting Lyme disease?

A: Because I don't think that's the entire story. I think that some people have infections that last longer than others and are harder to treat - there's a gray area in medicine here. I also think there is a strong element of immune suppression and dysregulation before one gets to developing autoimmune disorders. I think autoimmune disorders can be triggered by Lyme disease - certainly this has happened with other infections. But what are the steps that happen before it gets to this point? We need to look deeply at this disease's pathogenesis.

Q: What do you think of long term antibiotic use for treating infection?

A: I think that some Lyme disease patients probably do need longer term treatment than others and in higher doses - there are different MIC's and MBC's listed in in vitro antibiotic susceptibility tests for Borrelia burgdorferi (Bb) and it's not standardized. More antibiotic research is needed - especially in determining the right treatment for late stage cases.

That said, I am concerned about the use of many years of long-term treatment with antibiotics, and this is one reason why I'd like to see scientific research end the controversy about whether or not Bb can persist; solve whether or not it has a dormant or low metabolic state in tissues and can return in increasing numbers.

As time goes on and bacteria becomes more resistant to antibiotics, regardless of their potential side effects, other methods will need to take their place if new antibiotics are not developed. I'm intrigued by the possibilities here and am always speculating about them.

I think scientists could learn something by monitoring and testing those patients who do go on long-term antibiotic regimens - it could be informative to see how this has an impact on their immune systems and bacterial flora, let alone any impact on targeted pathogens.

Q: What do you think of alternative medicine use for treating infection?

A: My priority has been researching Borrelia burgdorferi and Borrelia in general itself, and touching on topics in science and some in society that are directly related to that -  only occasionally do I venture into looking at alternative medicine when readers comment on it.

One thing I hope to do in the near future is explain in detail how Borrelia burgdorferi affects different parts of the body and the immune system, and also try to explain why some of the alternative therapies mentioned online are likely to work and/or not work based on what is known about Borrelia burgdorferi's interaction with its human host.

Some may say, "But doctor so-and-so already explained why this is good for the "cyst" form, " or "My herbalist said detoxing is necessary because of neurotoxins". And I hear that - yet at the same time I think, "Hey, what can I learn about this? I want to check this out for myself."

In saying checking it out, I don't mean immediately trying it. I mean I want evidence that either supports it... or doesn't.

Q: Do you have any comments on protocols like the Marshall protocol, Klinghardt's protocol,  etc? I haven't seen much mention of such protocols on this site so far.

A: I realize there are a lot of people who are interested in alternative medicine and understand why they are - at the same time, I'm not going to begin endorsing alternative treatments without researching them.

But if I happen to come across something in my reading that indicates an herb, supplement, or lifestyle change has a low risk profile, has been well studied, and could help lessen symptoms - I may write something about it and affix a list of disclaimers and caveats to it. I'd do the same for an antibiotic, too - all treatments are subject to this kind of write-up.

If I conduct my own experiment, I'll try to document it faithfully and diligently. But I'm not bound to do this often.

Q: What do you think are some of the biggest myths Lyme disease patients have heard about Lyme disease that you have confirmed for yourself as being myths so far?

After reading enough research, I think that the biggest myths so far are that everyone with similar symptoms must have undiagnosed Lyme disease, that Lyme disease bacteria produces an endotoxin (that would require LPS - Bb does not have LPS),  and that Lyme disease bacteria is indestructible (where did anyone get this idea?)... there are others, but I have to think more about them.

Some things which people seem certain about, I'm currently not so certain about - for example, I'm not so sure that a "cyst" form is relevant to Bb's survival, and I have yet to see confirmation that biofilms are an issue. I would look more at Bb's antigenic variation, segmented genes, and Bb's interaction with our immune system as a survival mechanism than these cyst forms and biofilms based on what I've read so far.

If anyone produces solid evidence that counters or supports these claims, I'll consider them. I'm open to hearing different viewpoints.

Q: What is one of your major concerns regarding other Lyme disease patients?

Depends on which patients you're talking about?

I think a lot of patients are level-headed and just trying to make sense of what's happened to them and don't know what to do next, and ask doctors and researchers questions to try to get a handle on their condition. Some do their own research as I do, and try not to invest too much in any one paper that comes along.

Science is an ever moving and ever changing understanding of our world, not something solidly fixed in stone - and one has to look at a whole body of publications to begin getting a snapshot of what is currently understood and not understood.

I am concerned that some patients will lose or have already lost credibility in the eyes of others because they talk about conspiracy theories a lot and try alternative treatments that not only sound like they aren't fun - but aren't safe, either. 

And I'm concerned that a number of patients misread and misunderstand science articles and papers, and pass on their misunderstanding to others as if these papers contain treatment ideas that are immediately applicable to their situation... This latest article posted just this week on scientists using sugar to combat persister cells in antibiotic resistant infections is just one example - as a result of misunderstanding it,  some patients are now deciding to eat more sugar with their antibiotics in hopes of killing Borrelia. 

This is not what this research suggests to me that one should do at all, based on a number of factors.  First of all, looking at the original abstract and supplemental file, the tests were done on E. coli and S. aureus and used aminoglycosides. Second, the concoctions were tested by injecting mice with them. Third, they were treating urinary tract infections, if I'm not mistaken. That's very different from Bb and oral antibiotics, and also different from Bb and IV antibiotics in humans. Fourth, never run with what preliminary research states until it is independently confirmed by another party or two with no conflicts of interest and solid credentials.

I could go on, but between those, the authors' own note of caution not to base too much on their own research, and my concern for those with diabetes and hypoglycemia for a start - adding extra sugar to your diet doesn't sound like a good idea.

Q: Do you have any off the wall speculations you've ever made about anything?

As an intellectual exercise - sure. Right now the one contender I'm thinking about is that underlying a lot of diseases may be an immune dysregulation component, and I'm wondering if anything in our environment has led to this dysregulation. Petroleum-based plastics? Industrial chemicals? I don't know. And I admit I don't know - no conspiracy theory here, I think if something in the environment has affected people's immune systems, it was not intentional.  The planet is a more polluted place than it was hundreds of years ago, and there are more people on it. The intersection between pollution and people is bound to be reflected in their health eventually - asthma being one direct example.

Q: What do you think of LLMDs?

A: I think like other doctors in that there are good ones and not-so-good ones?

And just to be clear on the matter, because some people aren't aware of this: Not all LLMDs are ILADS LLMDs. Some are, and some aren't, and having the ILADS affiliation means different things to different people... I know of a number of non-ILADS LLMDs who are skilled doctors, and non-ILADS doctors who are not so skilled. You have to spend time doing your own individual evaluation.

Seriously, I think LLMDs I know the most about treat patients for genuine cases of tickborne infections in situations where other doctors did not. If more family doctors caught a number of these cases earlier and treated them, there may be less of a need for LLMDs.

I may be biased in this response, though, because I was textbook and not treated by the family doctor who first saw me.

(This response was edited this afternoon for greater clarity... I realized my initial response was somewhat vague.)

Q: If you had one message for scientific researchers in general, what would it be?

A: Please help us get to the bottom of this, end the controversy, and help us find a treatment that is safe and works so that we can get back to having normal lives.


Q: Why are you writing for the Daily Kos this month (May 2011)?

A: Because I thought I'd try something different in observance of Lyme Disease Awareness month, and also see what kinds of discussions come out of writing for a wider audience. 


Q: If you could improve only one aspect of your health right now, what would it be?

A: Living in a pain free body. I can put up with a certain amount of  insomnia and fatigue, but the pain is something I could do without.

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