Bullying Borrelia

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
tosho
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Location: Poland

Re: Bullying Borrelia

Post by tosho » Mon 14 Jan 2013 1:07

Looks like in this paper is a scenario mentioned by me earlier. Infection only with Bb, not so serious symptoms (I don't want to say who is sicker/ less sick, but I really wish to have only arthritis from time to time). We should be aware that on a second side there are less "optimistic" scenarios with profound fatigue/cognitive/muscle-skeletal sx and with poor response to short term treatment.

Henry
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Re: Bullying Borrelia

Post by Henry » Mon 14 Jan 2013 14:22

All of your comments underscore and confirm the points made in the Aurwaerter and Melia article. What more can I say. You've made the argument for them and have proven that anti-science abounds in Lymeland. Now that the medical profession and leading researchers on Lyme disease have been "trashed", where are you going to go to get the knowledge that you need to solve your problems? This is truly a case of the blind leading the blind.........

tosho
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Location: Poland

Re: Bullying Borrelia

Post by tosho » Mon 14 Jan 2013 18:25

Thank you, I've already had an opportunity to experience "school" of thinking, which dr. Auwaerter and Melia represents, and I am happy I didn't turn into a vegetable.
Not every researcher on TBDs is "trashed", in fact, I would say that only this minor group of same names is criticized by patients. There are many researchers who have a normal, rational approach to the problem.

TicksSuck
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Re: Bullying Borrelia

Post by TicksSuck » Mon 14 Jan 2013 18:43

Henry wrote:You've made the argument for them and have proven that anti-science abounds in Lymeland.
Indeed! Us people with that crazy notion that we might suffer or have suffered from Lyme disease at some point should shut up and accept the opinions of these experts. All is fine and we should worry no more. These experts hold the true knowledge on Lyme disease. Let’s not waste time, ours and theirs, questioning how they obtained the knowledge they advance, such as the absolute validity of the tests they use or what is considered a true case of Lyme disease in their studies. These experts can simply dodge those questions since obviously answering properly would be a waste of their time. Let the experts fight it out amongst themselves. Our line of questioning is anti-science because we know nothing and cannot interpret their valid studies and data. Forget how you feel after treatment, it is meaningless. You are cured; get on with your life!

Henry
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Re: Bullying Borrelia

Post by Henry » Mon 14 Jan 2013 18:46

Please note that my last comment was not directed at Tosho, but at Duncan (who deleted his latest deranged posting) and the other science denialists who are not in the habit of providing evidence to support the statements that they make and who choose to deal in "fiction", rather than the real world.

tosho
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Location: Poland

Re: Bullying Borrelia

Post by tosho » Mon 14 Jan 2013 19:59

Henry wrote:Please note that my last comment was not directed at Tosho, but at Duncan
Huh, that only shows that we "run circles" again, discussing the same problems.

And - the evidence is not so unequivocal, so I would not say that those who say that chronic TBDs exist deal with fiction or there is completely no basis to say so. Moreover, when you look at the history of medicine it is not uncommon that observations were ahead of scientific evidence or the interpretations turned out to be another. The same is likely to happen with TBDs, around which the controversy has been already "inflammed" for quite long.

Henry
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Re: Bullying Borrelia

Post by Henry » Mon 14 Jan 2013 20:28

Tosho: When you refer to TBDs, which specific infections are you including. I'm serious. In order to develop an intelligent diagnostic/treatment approach, you must have at least some idea what you are dealing with. By definition, Lyme disease is an infection caused by Borrelia burghdorferi sensu stricto. Borreliosis is an infection caused by that and other species of Borrelia. All that is very clear, so there is no need to redefine the disease. Methods have been developed to diagnose and treat these specific infections. However, to the best of my knowledge, there is are no methods to diagnose and treat infections cause by "infectious soup".

Obviously, each and every component of "the soup" must be defined so that a systematic approach for treatment and diagnosis must be developed in accordance with existing knowledge. If you suspect one of the components of the soup to be Bartonella, then tell us how you would diagnose and treat that component. It would not be advisable to test for the presence of antibodies vs Bartonella since most people -- especially cat owners-- have such antibodies and the presence of such antibodies may only indicate past exposure, not active infection. In any event, most Bartonella infections -- except in immunocompromised individuals are self-resolving. For those infections that aren't, Bartonella is susceptible to treatment with doxycycline, the agent of choice for treating borreliosis. So, by treating with doxycycline you would be "killing two birds with one stone".

What about the other components of you "infectious soup"? Do you have guidelines for developing an approach to diagnosis and treatment for them?

duncan
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Re: Bullying Borrelia

Post by duncan » Mon 14 Jan 2013 21:07

Henry, I hope you're not sulking simply because you were not able to adequately field some questions I placed before you over the past couple of days. I don't hold it against you, and I'm sure no one else does either. You did a pretty good job, considering.

Camp Other
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Re: Bullying Borrelia

Post by Camp Other » Mon 14 Jan 2013 21:10

Henry wrote:Tosho: When you refer to TBDs, which specific infections are you including. I'm serious. In order to develop an intelligent diagnostic/treatment approach, you must have at least some idea what you are dealing with. By definition, Lyme disease is an infection caused by Borrelia burghdorferi sensu stricto. Borreliosis is an infection caused by that and other species of Borrelia. All that is very clear, so there is no need to redefine the disease. Methods have been developed to diagnose and treat these specific infections. However, to the best of my knowledge, there is are no methods to diagnose and treat infections cause by "infectious soup".
Observation 1: These diseases have been defined and don't need to be redefined - however, how scientists use these terms and apply them is not going to match the usage patients have - however right or wrong such usage is.

Strictly speaking, "Lyme disease" is caused by B. burgdorferi spirochetes. In the US, in most research this has been taken to be B. burgdorferi sensu strictu spirochetes - while in Europe, it's acknowledged B. burgdorferi sensu latu applies for causing Lyme disease. But if patients in the southeasten US or even New Jersey get bitten by a Lonestar tick and infected with B. lonestari, they aren't going to say they have "a relapsing fever borreliosis" - even if that's technically correct. They'll call that "Lyme disease" also, and seek out support on Lyme disease patient support forums and LD groups that meet in person because their symptoms are very similar and the treatment is similar as well... And from a practical perspective, to my knowledge there really aren't relapsing fever support groups out there - but there are many Lyme disease support groups. So the patient will go where their needs get met and to heck with the name - however incorrect it is on a scientific basis.

Observation 2: I think it would be useful to test patients for antibodies to relapsing fever spirochetes if they've recently been bitten by ticks and have flu-like symptoms but don't get an EM rash. Both in Europe and the US - but especially in Russia because there are parts of Russia where B. miyamotoi has been shown to thrive in a higher percentage of Ixodes ticks there than B. burgdorferi. (Something that requires more research - do some strains of Borrelia have a competitive advantage over others? I think I've read some research pointing to this possibility.)

For both research purposes and for ensuring patients get early treatment, if someone has only a partial positives in a WB or negative/equivocal test in response to a Lyme Disease ELISA, why not give them a test for antibodies to spirochetes such as B. lonestari and B. miyamotoi - especially if they're in an area where hard bodied ticks can carry these bacteria? Seems to make sense to me and we'd learn a lot from it - and there'd be greater patient satisfaction if these infections are found and treated earlier.

Other than this, it seems like sound reasoning to re-test patients if weeks or months later they STILL feel like they have the flu and are achy if their first blood test or tests for Borrelia turned up negative or equivocal. I'd say encourage retesting during a time when they are most symptomatic and check antibody response again to ensure they don't slip between the cracks.

Observation 3: In Europe, there has been research on patients having undulating antibody responses to Lyme disease bacteria and tests are not standardized. EUCALB has acknowledged this is a problem and has called for a standardization in testing. I believe I've written about this here before, and if I recall correctly, Dr. Johnson of the CDC in the US has stated that if a patient is retested and their test shows additional bands and stronger antibody response upon retest, the patient is actively infected and needs treatment. These two bits of info indicate to me that if one can do anything to ensure more patients do not fall between the cracks, it's retesting in general.

I'm not sure standardizing the tests helps as much as retesting and ensuring that the test an individual patient takes is "localized" to the region in which they were most likely to have (or knowingly) been bitten. This is an issue I think EUCALB was taking up, to ensure more antigen-specific testing was available for each region. (Does anyone know anything about this, as it's been a while since I read about it and haven't followed up on EUCALB's future plans for test design and evaluation of efficacy?)

Joanne60
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Location: Guildford Surrey UK

Re: Bullying Borrelia

Post by Joanne60 » Mon 14 Jan 2013 22:50

Camp
At the IOM workshop Later in discussing reinfection and relapsing illness Ben Lufts response was - 100.30 mins in
Apologies for spelling but this was a copy from the automated transcript on the day.
But the nature of Lyme disease is it's a relapsing disease.

That's the very nature of you getting infected, very erythema myograms, having dissemination, separated by time, the disease comes back and it can give you cardiac abnormalities or abnormalities in your joint, that's a relapse.

That's a relapsing process.

The period of time is well-being with disease relapses, and that can occur in a cyclical manner.

You can have multiple episodes of relapse, and this can go on for years.

That's the natural history of the disease.

The natural history of disease ez is it's a relapsing disease.

It's also very interesting that even though you may have this disease, you can be reinfected with another -- with Lyme disease again, even though you've been previously infected.

I just wanted to clarify that.

http://www.tvworldwide.com/events/iom/1 ... t=0&live=0

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