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Re: Christopher Smith's Lyme Disease Bill 2557

Posted: Sat 24 Dec 2011 17:39
by Spanky
"Henry":
I am hopeful. It is my understanding that a contract to start the repository has -- or is about to be-- awarded by the NIH. Hopefully, the work will be underway soon.
Thanks, Henry.

I have had the privilege to live next door to a very wonderful family whose oldest son has been struggling with childhood leukemia and has been in and out of hospitals and chemo...in remission and back again...and recently a bone marrow transplant, as well.

And that not only kind of gives you a perspective about your own troubles...but also, watching that, what they go through...how the patients and doctors there, work together...and how the patients and families and loved ones raise research funds in cooperation with the medical/scientific community to advance knowledge.

And then...there is the situation with Lyme disease...

Re: Christopher Smith's Lyme Disease Bill 2557

Posted: Sat 24 Dec 2011 18:18
by Henry
Spanky: There is just too much distrust, fueled in large part the the reaction and agenda of the activists groups, to allow similar progress when it come to Lyme disease.

Re: Christopher Smith's Lyme Disease Bill 2557

Posted: Mon 26 Dec 2011 0:44
by tosho
This is because leukemia patients are not denied that they have leukemia, whereas numerous tick-borne diseases (tbds) sufferers are denied they are sick of tbds. So your comparison is not good, because the background of the situation is completely different.

I would like to make one reminder. During all these discussions about Lyme disease being chronic or not it is very often forgotten that ticks carry many pathogens, and significant number of these different pathogens may be transmitted. Just recently appeared studies that treat bartonella as tick-borne disease (in contrary to the IDSA, who says it is not probable that ticks that carry bartonella can transmit it).
So, I think it is critical to discuss tbds complex instead of focusing only on Lyme borreliosis. Maybe this is these infections "cocktail" that causes chronicity of symptoms, different clinical pictures, problems with treatment (getting better on abx and relapsing without them) and so on.
The IDSA probably uses argument that clinical trials didn't show clinical benefit of ca. 3 months of abx monotherapy so the problem of coinfection is unlikely to be of significant importance. But this argument would be not enough to solve the problem of polymicrobial infection, imho. Actually, I know quite a lot of people who had a first significant improvement after 6 or more months of therapy. So, again, much more studies are needed.

Re: Christopher Smith's Lyme Disease Bill 2557

Posted: Mon 26 Dec 2011 13:28
by Henry
Tosho: Granted-- ticks can carry many different types of microorganisms. However, to assume that one bitten by a tick is infected by any or all of them, and that a polyinfection is the cause of Lyme disease -- without adequate proof-- strains credulity. One does not have to resort to a "MAYBE", when there are ways to detect such infections and treat them properly. There is no evidence that any of them have anything to do with the symptoms some ascribe to chronic Lyme disease anyway. That is just another myth.

Re: Christopher Smith's Lyme Disease Bill 2557

Posted: Mon 26 Dec 2011 14:10
by tosho
Henry wrote:However, to assume that one bitten by a tick is infected by any or all of them, and that a polyinfection is the cause of Lyme disease -- without adequate proof-- strains credulity.
I don't understand what you wrote. Lyme Disease is caused by Borrelia burgdorferi. Ticks can transmit quite a lot of other pathogens, not only Borrelia burgdorferi. You can be infected with one, two, three, or if you are very unlucky maybe with even more, of these pathogens after one tick bite.
Henry wrote:One does not have to resort to a "MAYBE", when there are ways to detect such infections and treat them properly.
Of course - there are tests and also clinical judgement.

Henry wrote:There is no evidence that any of them have anything to do with the symptoms some ascribe to chronic Lyme disease anyway. That is just another myth.
I disagree entirely. I personally know people who, after being bitten by a tick, had bull's eye rash, positive tests for babesiois (parasitemia seen under microscope plus elevated antibodies), significantly elevated antibodies to bartonella, positive rtPCRs for bartonella, elevated antibodies to anaplasmosis - all at once after one tick bite - and came down with many different chronic symptoms, like debilitating flu-like fatigue, muscle-skeletal, neurological and other symptoms. And they got much better with antimicrobial treatment (treated longer than 4 weeks). The IDSA guidelines fail again, those guidelines look well only on paper, but in a real life they are very often uneffective. This is what happens when guidelines are made prematurely, whereas much more studies should be done and patients and their physicians should have a full, not one-sided, information.

Re: Christopher Smith's Lyme Disease Bill 2557

Posted: Mon 26 Dec 2011 14:46
by Henry
Tosho: None of the co-infections that you mention are all that mysterious and common. Recent published studies in the U.S. reveal that co-infections simply do not occur with very high frequency, i.e., greater that 10% --at best -- for 2 infections, much less for 3. When diagnosed and treated properly, none require treatment of more that 4 weeks. You are just speculating and guessing, which doesn't help anyone and only serves to confuse matters and perpetuate myths.

Re: Christopher Smith's Lyme Disease Bill 2557

Posted: Mon 26 Dec 2011 15:00
by Henry
Tosho: In the absence of proof that one has a Borrelia infection, some postulate the existence of other infections -- with absolutely no evidence-- to explain undiagnosed symptoms. There is no end to such speculation, which only serves to cause great harm to those who don't understand the science. It serves no useful purpose to engage in wild speculation which provides no answers.

Re: Christopher Smith's Lyme Disease Bill 2557

Posted: Mon 26 Dec 2011 17:00
by X-member
Henry, you wrote:
Tosho: In the absence of proof that one has a Borrelia infection, some postulate the existence of other infections -- with absolutely no evidence-- to explain undiagnosed symptoms. There is no end to such speculation, which only serves to cause great harm to those who don't understand the science. It serves no useful purpose to engage in wild speculation which provides no answers.
Henry, give us the info you talked about in another topic. You can do this here:

http://www.lymeneteurope.org/forum/view ... f=7&t=3536

And, Henry you can not say such things, because you can not know anything of any persons you don't know (and not even if you know them)!

And to talk about what it can be instead of Lyme, or both Lyme and something else is allowed, without your "wild speculations".

This I got via e-mail, and this is said by one of the most known Swedish neuroborreliosis-specialists:
Fästingar kan sprida många smittämnen
Translation (with google translate):
Ticks can spread many infectious agents

Re: Christopher Smith's Lyme Disease Bill 2557

Posted: Mon 26 Dec 2011 17:08
by X-member
Tosho, you wrote:
I would like to make one reminder. During all these discussions about Lyme disease being chronic or not it is very often forgotten that ticks carry many pathogens, and significant number of these different pathogens may be transmitted. Just recently appeared studies that treat bartonella as tick-borne disease (in contrary to the IDSA, who says it is not probable that ticks that carry bartonella can transmit it).
Here is some info from Sweden (CDC):

http://wwwnc.cdc.gov/eid/article/17/9/10-1058-f1.htm

Quote (from the link above):
Figure 1. Collection locations for rodents and shrews tested for Candidatus Neoehrlichia mikurensis and Bartonella spp. infections, southern Sweden, 2008. Prevalence of infection: Häglinge, n = 45 infections, 0% Candidatus N. mikurensis, 44.4% Bartonella spp.; Revinge, n = 623 infections, 9.3% Candidatus N. mikurensis, 33.7% Bartonella spp.; Istaby, n = 53 infections, 3.8% Candidatus N. mikurensis, 34% Bartonella spp.; Hemmeströ, n = 64 infections, 4.7% Candidatus N. mikurensis, 39.1% Bartonella spp.; Herseby, n = 49 infections, 12.5% Candidatus N. mikurensis, 45.0% Bartonella spp.
If someone is more interested in Candidatus Neoehrlichia mikurensis, you can read more about it here, too:

http://www.lymeneteurope.org/forum/view ... sis#p25361

Re: Christopher Smith's Lyme Disease Bill 2557

Posted: Mon 26 Dec 2011 17:12
by tosho
I am talking about people who contracted these infections and have laboratory evidence of having them.
Henry wrote:When diagnosed and treated properly, none require treatment of more that 4 weeks. You are just speculating and guessing, which doesn't help anyone and only serves to confuse matters and perpetuate myths.
Of course there are many situations when 4 weeks of treatment is not enough, so actually you confuse matters. Imagine living in an endemic area, being bitten by a couple of ticks, catching for example Bb, babesia and some kind of ricketsia, then leave it untreated for many months. You will not get cured with 4 weeks of treatment, this is simply ignorrant what you say. I don't know if you realise how horrible consequences have your way of thinking. Leaving a patient with active infections and misleading him/her that 4 weeks of treatment was enough is inhumane and immoral.