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View Full Version : Antibiotics often don't help chronic Lyme Disease



4eyedbuzzard
03-31-2016, 16:12
http://news.health.com/2016/03/31/study-longer-term-antibiotics-wont-ease-chronic-lyme-disease/

Saw this article regarding a new NEJM report and thought it would be of interest as we hikers are all at a heightened risk of being exposed to/contacting this disease.

Just another reason to be proactive in preventing tick bites (Permethrin treated clothing, DEET, avoiding bushwhacking unless necessary, etc.), and if bitten to get treatment ASAP.

http://www.cdc.gov/ticks/symptoms.html

swjohnsey
03-31-2016, 16:23
Yet another psychosomatic illness.

rocketsocks
03-31-2016, 16:33
Yet another psychosomatic illness.your crazy!

Don H
03-31-2016, 17:02
Yet another psychosomatic illness.

So you're saying chronic Lyme Disease is not real?

MuddyWaters
03-31-2016, 17:08
Chronic lyme is life changing for some.

Mr. Bumpy
03-31-2016, 17:20
Yet another psychosomatic illness.

Yet another grandiose opinion, but hey, HYOH.

swjohnsey
03-31-2016, 17:57
So you're saying chronic Lyme Disease is not real?

It's right up their with chronic fatigue syndrome and PMS.

kayak karl
03-31-2016, 18:04
Yet another psychosomatic illness. My son has had it for 14 years. i have seen the symptoms first hand. you are an uninformed idiot.

kayak karl
03-31-2016, 18:11
Chronic lyme is life changing for some. My son may lose everything from it..including his life. it's so hard to watch.

Don H
03-31-2016, 18:18
My son has had it for 14 years. i have seen the symptoms first hand. you are an uninformed idiot.

I won't even respond to the person who considers Lyme a psychosomatic illness.

I have a friend who's son contracted Lyme and he nearly died from it. For some reason the bacteria went to his brain. I saw this 12 year old boy go from a healthy young man to being in the hospital near death. I saw him go from bed ridden, to wheel chair bound to barely walking with a walker. He also had severely slurred speech. 6 years later he's back to walking without aid and his speech has mostly returned but still has some mobility issues. His parents have spent over $200,000 on his treatment which was not covered by insurance.

swjohnsey
03-31-2016, 18:34
Lyme disease is real. Chronic Lyme is something else. Article couldn't even get the right kind of tick. I got anaplasmosis in 2011, put me in the hospital in Hersey, PA for a few days because it went untreated for about a month. I they can't find the organism in your body, if antibiotics are effective, it is probably your imagination or something else.

rocketsocks
03-31-2016, 18:53
My son has had it for 14 years. i have seen the symptoms first hand. you are an uninformed idiot.
Man I sure am sorry to hear that, I can't even imagine.

rocketsocks
03-31-2016, 18:56
I they can't find the organism in your body, if antibiotics are effective, it is probably your imagination or something else.im not sure if your just being sarcastic (as if to say doctors and insurance company's won't acknowledge this as an ailment/decease) won't or if ya really believe this?

Pedaling Fool
04-01-2016, 08:49
I wouldn't be so tough on swjohnseh even though he is wrong, but he does have a good portion of the medical community on his side. He is simply parroting what many medical experts say, but I can point to numerous long-held medical opinions (or "facts") that over time proved very wrong and I think that's the case with this issue of chronic Lyme disease.

Mainly because I feel like I also suffer from this phenomenon. I contracted Lyme disease somewhere in Virginia, but it wasn't diagnosed until Vernon, NJ, and only because a friend's wife made me go to a hospital. I probably wouldn't be suffering from it still today if I had gotten the antibiotics soon after the symptoms appeared, but that's not how I roll:D.

This issue really isn't much different than the UFO phenomenon. You have tons of credible reports (forget the reports from the non-serious), but the official response is that's basically imagination/mis-identification of known phenomenon. I know that analogy is going to cause many to :rolleyes: big time, but it's true.

At some point when you get enough anecdotal information there has to be something to it. That's not to say that a large amount of anecdotal information equals fact/data, but it means that there's a good chance the experts are missing something.

Miel
04-01-2016, 09:01
Ask him if he's an anti-vaccer, too.

WingedMonkey
04-01-2016, 09:32
Not that I necessarily agree with all swjohnsey says (seldom do)...but...what did happen to chronic fatigue syndrome?

Also look at how less giardiasis is reported and now it's Lyme that gets everyone sick, when it's not norovirus.

I lot of what hikers report is self diagnosed and I take it with a grain of salt unless they get a medical confirmation.

There may also be way to much self medication with out actual test results.

I do not make light of those with a real medical problems.

Hoofit
04-01-2016, 11:03
Yet another psychosomatic illness.

Well now....I went from climbing mountains with thirty five pounds on my back to not even being able to climb the stairs at my home, all within a matter of weeks..
Antibiotics and then more antibiotics sure helped me along with several years of recovery.
And I'll be back this summer to finish what I started, a thru hike to Katahdin.
I may be a little psycho but Lyme Disease is very real ...be careful out there !

Brewguy
04-01-2016, 11:26
I was just reading about this and how it is resistant to antibiotics. The article said they are having good results with using detox programs. For those of you dealing with it, try and find the article. I think it was on www.lewrockwell.com a few weeks ago.

tdoczi
04-01-2016, 11:37
i think its worth pointing out, that the words "chronic lyme disease" can mean several things, potentially.

#1) you actually do, for a medical certainty, have lyme. it went untreated initially, for whatever reason, and latent symptoms, different than initial ones, appear. these are real, and in a rare circumstance, can become very serious. this is real. no argument

#2) you had lyme, you got treated in a timely manner, but much later, despite officially being negative, you develop unexplained ailments that others have commonly attributed to lyme. this is a maybe proposition, at best.

#3) you have some weird unexplainable ailments. you discover that someone somewhere attributes these symptoms to having "chronic lyme disease." these symptoms are so numerous as to effectively be "anything wrong with you can possibly be lyme disease." this person remembers that they once went camping 3 years ago, during summer, in vermont, and decides what is ailing them is lyme disease. there is absolutely no clinical evidence to support this. they may even find a medical "professional" of some sort who backs them up.

this last one is, in plain english, total junk science.

Brewguy
04-01-2016, 11:41
https://www.lewrockwell.com/2016/02/christine-ross/worry-zika-virus/

Here is the link.

It explains how lyme avoids antibiotics and that the toxins it produces are what causes the symptoms.

tdoczi
04-01-2016, 11:43
https://www.lewrockwell.com/2016/02/christine-ross/worry-zika-virus/

Here is the link.

It explains how lyme avoids antibiotics and that the toxins it produces are what causes the symptoms.


how much do ya know about the guy who that site is named after? if you knew much, you might not be so quick to cite anything on his website. and this is from someone who likes the guy.

read any good 9-11 conspiracy theories while you were looking for that article?

Don H
04-01-2016, 11:57
My friend's son got bit by a small deer tick on the back. They believe he picked it up while cutting the grass. They noticed the red ring and the tick embedded. They went to the doctor who started antibiotics. He had the test which showed positive. Within two weeks he was hospitalized and the doctors were telling them he might not live. He still has effects today and this started 6 years ago. Call it what you want but the specialists he goes to calls it Chronic Lyme.

Brewguy
04-01-2016, 12:15
how much do ya know about the guy who that site is named after? if you knew much, you might not be so quick to cite anything on his website. and this is from someone who likes the guy.

read any good 9-11 conspiracy theories while you were looking for that article?

I know lots about the web site. There is a lot of good information there. If doctors keep saying they can't fix the problem then why not look for other means?

tdoczi
04-01-2016, 12:30
I know lots about the web site. There is a lot of good information there. If doctors keep saying they can't fix the problem then why not look for other means?


from that same website. more good information?

https://www.lewrockwell.com/2015/02/donald-w-miller-jr-md/more-dangerous-than-measles/

its humorous that someone likened (not for the first time on this board either) a "lyme denier" to someone who is anti vaccine. in truth, being anti vaccine and believing in chronic lyme disease seem to walk very much hand in hand.

Bronk
04-01-2016, 13:15
After all these years the CDC is still spreading misinformation.

CamelMan
04-09-2016, 22:54
The biofilm / resistance thing is real: https://www.nlm.nih.gov/medlineplus/news/fullstory_157467.html

I remember a movie or documentary about this where an independent researcher / doctor discovered this is how it hides, but at the time it was considered a fringe theory.

tdoczi
04-09-2016, 23:31
The biofilm / resistance thing is real: https://www.nlm.nih.gov/medlineplus/news/fullstory_157467.html

I remember a movie or documentary about this where an independent researcher / doctor discovered this is how it hides, but at the time it was considered a fringe theory.

"university of new haven researchers" reported in the "european journal of microbiology and immunology."

youll forgive me if i dont stop the presses?

i mean really, can you find 6 things dubious about that article? i bet you can.

beware claims of magical bacteria that behaves in a way no other bacteria ever seen does.

Traveler
04-10-2016, 05:52
"university of new haven researchers" reported in the "european journal of microbiology and immunology."

youll forgive me if i dont stop the presses?

i mean really, can you find 6 things dubious about that article? i bet you can.

beware claims of magical bacteria that behaves in a way no other bacteria ever seen does.

I do not argue the issue of sources having low credibility and the need to have both higher credibility and more empirical data in this and other scientific information discussions. However, the last sentence above suggests bacteria is staid and unchanging. There was, at one point not long ago, the concept of a "super bacteria" developing, which was at the time comical to many. The research was correct however, and there are now super bacteria as evidenced by the emergence of Staph infections immune to common antibiotics and terribly aggressive.

Its not magic that causes bacteria to behave in a manner no other bacteria has, its evolutionary. That said, an article about this in an online magazine with UFO discussions and the latest conspiracy angles does not lend a high level of trust in the information.

Starchild
04-10-2016, 07:19
Not that I necessarily agree with all swjohnsey says (seldom do)...but...what did happen to chronic fatigue syndrome?...
CFS is a group of symptoms, not a cause. Some of the cause I believe it was found to be a symptom the Epstein Barr <sp> virus (or something like that), a very common one that most have usually under control of the immune system, but in some the virus gets a upper hand.

squeezebox
04-10-2016, 08:08
Yet another psychosomatic illness.
This guy is a serious idiot and needs to troll somewhere else.
But in a 180 degree way there's a good point about the longer you have Lyme the most serious it becomes, and can lead to permanent damage. Cognative damage happens it's not psycosomatic.
4 eyed's comments are best. Prevention, early detection, early treatment. Also keep in mind some people do not present with a bullseye.

rafe
04-10-2016, 08:46
I'm not a doctor and I don't play one on TV. I believe "Lyme" covers many specific illnesses, what's common is that they're spread by ticks.

Found & removed a tick on my shoulder blade last Saturday. It had probably arrived two days earlier on a walk through local woods while it was relatively warm. Doctor is advising "wait and see." As he has done on at least one other similar occasion. He doesn't seem overly alarmed. He didn't send me in for blood samples. I wonder sometimes if he's as proactive about this stuff as he could or should be. Partly my fault too, I didn't bother to tell him about it 'till Monday or Tuesday (four or five days after the bite.)

I think sometimes about that childrens' song, "There ain't no bugs on me."

CamelMan
04-10-2016, 09:45
Biofilms are real (https://en.wikipedia.org/wiki/Biofilm#Biofilms_and_infectious_diseases). I don't see what's wrong with the European Journal of Anything. It's cited by the NIH, which is also a pretty credible source.

Pedaling Fool
04-10-2016, 09:52
Biofilms are real (https://en.wikipedia.org/wiki/Biofilm#Biofilms_and_infectious_diseases). I don't see what's wrong with the European Journal of Anything. It's cited by the NIH, which is also a pretty credible source.It's true, they are real. I don't see why that's such a hard pill to swallow (pardon the pun:D). There are far more incredible things in nature.

tdoczi
04-10-2016, 11:54
Biofilms are real (https://en.wikipedia.org/wiki/Biofilm#Biofilms_and_infectious_diseases). I don't see what's wrong with the European Journal of Anything. It's cited by the NIH, which is also a pretty credible source.

do ten seconds of research on that journal, and more so, on the university of new haven. then compare it to other medical news, what sorts of institutes typically perform that sort of research and where that is usually reported and ask yourself why there is no similar study done and published by those institutes. or for that matter why no more respectful journal published this study.

NIH repeated it probably in some sort of catch all manner i would guess.

X-Pat
04-10-2016, 12:52
do ten seconds of research on that journal, and more so, on the university of new haven. then compare it to other medical news, what sorts of institutes typically perform that sort of research and where that is usually reported and ask yourself why there is no similar study done and published by those institutes. or for that matter why no more respectful journal published this study.

NIH repeated it probably in some sort of catch all manner i would guess.

I did a little over 10 seconds of research and at first glance couldn't find anything wrong with either the University of New Haven (except that a Raiders coach is an alumn) or the "European Journal of Microbiology and Immunology", unless of course you doubt anything European on instinct.

Care to elaborate?

Pedaling Fool
04-10-2016, 13:06
do ten seconds of research on that journal, and more so, on the university of new haven. then compare it to other medical news, what sorts of institutes typically perform that sort of research and where that is usually reported and ask yourself why there is no similar study done and published by those institutes. or for that matter why no more respectful journal published this study.

NIH repeated it probably in some sort of catch all manner i would guess.I agree with X-Pat, above^^.

Furthermore, I'm not really sure what you're saying other than you think those institutions and the researcher (Eva Sapi http://www.newhaven.edu/faculty-spotlights/eva-sapi/ ) is crap.

It also seems like you're denying biofilms as a real phenomenon as evidenced by your above post (post #27), attributing them to 'magical bacteria':rolleyes:

I'm not sure if Lyme disease bacteria does have this ability to form biofilm, but regardless that doesn't prove that the research is bunk.

Look at how misunderstood Lyme disease is, so if you want to call Dr. Sapi's research bunk, than you might as well call it all bunk, since it's such a hugely misunderstood disease, just see here: http://www.cdc.gov/lyme/postLDS/


Notice in the last paragraph that they say what most medical experts believe...No one has a good grip on this disease, still a lot of research needed.



Excerpt:


It is not uncommon for patients treated for Lyme disease with a recommended 2 to 4 week course of antibiotics to have lingering symptoms of fatigue, pain, or joint and muscle aches at the time they finish treatment. In a small percentage of cases, these symptoms can last for more than 6 months. Although sometimes called "chronic Lyme disease," this condition is properly known as "Post-treatment Lyme Disease Syndrome" (PTLDS).

The exact cause of PTLDS is not yet known. Most medical experts believe that the lingering symptoms are the result of residual damage to tissues and the immune system that occurred during the infection.

Pedaling Fool
04-10-2016, 13:31
NIH repeated it probably in some sort of catch all manner i would guess.That wasn't the first time they repeated it


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108755/



Biofilms

Another mechanism of chronic infection involves the formation of biofilms.92 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108755/#b92-idr-4-001)–98 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108755/#b98-idr-4-001) These adherent polysaccharide-based matrices protect bacteria from the hostile host environment and facilitate persistent infection. Biofilms are responsible for a number of chronic infections, including periodontitis, chronic otitis media, endocarditis, gastrointestinal infection, and chronic lung infection.92 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108755/#b92-idr-4-001)–98 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108755/#b98-idr-4-001) Sapi and MacDonald raised the possibility of biofilm formation by B. burgdorferi, and subsequent work has demonstrated these spirochetal formations in culture and in the tick gut.99 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108755/#b99-idr-4-001),100 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108755/#b100-idr-4-001) Combinations of borrelial cysts and putative biofilms have also been noted in patient skin biopsies using focus floating microscopy.101 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108755/#b101-idr-4-001) Biofilm formation is dependent on cyclic di-GMP expression,102 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108755/#b102-idr-4-001),103 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108755/#b103-idr-4-001) and recent studies have shown that B. burgdorferiexpresses this regulatory molecule.104 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108755/#b104-idr-4-001),105 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108755/#b105-idr-4-001) Coordinated steps in the elaboration of biofilms have been demonstrated in other bacteria, and it remains to be seen whether similar molecular processes occur in borrelial strains and whether these processes play a role in persistent infection.106 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108755/#b106-idr-4-001),107 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108755/#b107-idr-4-001)

To date no antibiotic treatment exists for biofilm formation. However elucidation of the regulatory steps in the biofilm process should allow development of ‘designer’ antibiotics that interfere with this process.106 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108755/#b106-idr-4-001) It has recently been shown that mutations in genes that regulate biofilm development can interfere with the elaboration of new biofilms and also cause collapse of established biofilm colonies.107 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108755/#b107-idr-4-001) These findings indicate the potential effectiveness of newer antibiotics that target the biofilm regulatory process, suggesting a novel approach to treatment of Lyme disease and other chronic infections.108 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108755/#b108-idr-4-001),109 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108755/#b109-idr-4-001)

Uncle Joe
04-10-2016, 13:34
No one has a good grip on this disease, still a lot of research needed.

Complete BS! Clearly there are experts right here on WB who understand this disease fully and if consulted could explain the nuances of this disease to doctors. :D

rafe
04-10-2016, 13:38
Lyme disease is real. Chronic Lyme is something else. Article couldn't even get the right kind of tick. I got anaplasmosis in 2011, put me in the hospital in Hersey, PA for a few days because it went untreated for about a month. I they can't find the organism in your body, if antibiotics are effective, it is probably your imagination or something else.

It turns out that some of the tests for Lyme don't test for the organism, but for your body's immune response. And the immune response may be triggered by other stuff going on, or by vaccines you've received.

A few years back I had a bout of Bell's palsy, accompanied (preceded) by severe pain in my jaw and temple (so maybe it was Ramsey-Hunt, whatever.) Come to find out that's one of many symptoms of Lyme. The palsy symptoms cleared up quickly, but there was neurological damage that messed up my balance on that side. I've learned to live with it, but the effect is permanent.

tdoczi
04-10-2016, 16:17
I did a little over 10 seconds of research and at first glance couldn't find anything wrong with either the University of New Haven (except that a Raiders coach is an alumn) or the "European Journal of Microbiology and Immunology", unless of course you doubt anything European on instinct.

Care to elaborate?


care to cite one piece of other significant, widely accepted and noteworthy piece of research associated with either institution?

or maybe im just biased because my sister attended UNH and i know it well. theres nothing groundbreaking going on there. they havent scooped the countless numbers of far more reputable and noteworthy bastions of medical research in the country with research that for some reason only a very specific, narrowly focused medical journal in europe would publish.

when you find a study done by something like an ivy league medical school published in JAMA, let me know.

tdoczi
04-10-2016, 16:20
Notice in the last paragraph that they say what most medical experts believe...No one has a good grip on this disease, still a lot of research needed.



Excerpt:

actually, wat theyre saying is no one has a good grip on the reported lingering effects that may not even be lyme disease.

actual, real, confirmable lyme disease i think everyone has a fairly good grip on.

X-Pat
04-10-2016, 17:03
care to cite one piece of other significant, widely accepted and noteworthy piece of research associated with either institution?....

Actually, I really don't.
I don't have any knowledge or opinion about either the university or the publication. You seemed to have an opinion and I just wanted to know more.

Carry on.

tdoczi
04-10-2016, 17:37
Actually, I really don't.
I don't have any knowledge or opinion about either the university or the publication. You seemed to have an opinion and I just wanted to know more.

Carry on.

i work in academia, therefore know how academia works and take academic things with the proper grain of salt. people with academic jobs need to publish. not because they made some sort of discovery, not because they have anything important to share, but because it is their job to publish. no matter what. period. other academics give them the opportunity in various journals they run. its a huge self serving circle.

it makes sense someone doing medical research in CT and needing to publish something would look at lyme disease. because they did it and someplace put it in print doesnt really amount to much.

CamelMan
04-10-2016, 18:56
Hey, that huge circlejerk is our "science"! Just look at these nice people (http://www.nhregister.com/article/NH/20151011/NEWS/151019914). They look completely legitimate. Is there something about them in particular that makes them less than credible? Should they be from Hahvard or have a million dollar grant from GlaxoSmithKlineBlahBlahBlah to count as real science? :p

Speaking of grains of salt, right now I'm in the middle of reading Waterlogged, which debunks myths about sports and hydration that were perpetuated by the Gatorade Sports Science Institute. (Claims that were adopted by ACSM and that you'll see people acting on all the time, btw.) Even though I agree that the profit motive makes Gatorade's claims immediately suspicious, just as the drug these people are testing--and your point about pressure to publish--does for their claims, the author of Waterlogged still provides actual evidence that the claims are bogus. Otherwise all he would have is a polemic.