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Lazy8

Lazy8 Avatar

Location: The Gallatin Valley of Montana
Gender: Male


Posted: Jul 22, 2019 - 3:55pm

black321 wrote:
I'm surprised your friend received such aggressive treatment from Mayo; it's quite unusual and there would have had to be clear evidence the bacteria was found in spinal fluid and had crossed the blood brain barrier.  

Well, it did have a ten year head start...
black321

black321 Avatar

Location: A sunset in the desert
Gender: Male


Posted: Jul 22, 2019 - 2:56pm



 Lazy8 wrote:

Sorry to take so long getting back to this, busy weekend.

Yes, I think I'm right all the time. So does everybody. But when I argue about something I try to make sure I actually am, especially on topics like this.

If you claim that "The bigger conspiracy is why the CDC denies that chronic infection from Lyme disease, which is estimated to occur with 20%-30% of those infected, exists" Then a link to the CDC acknowledging that chronic Lyme disease (or at least chronic Lyme disease symptoms) exist is a reasonable response. An activist community arguing for a disease mechanism isn't terribly convincing, especially with so many spectacular fails in recent memory. Yes, people are suffering, maybe people you know and love, maybe even you. That doesn't give you better insight into the causes than a doctor who has spent a career studying the disease and its mechanisms.

And yes, I know someone suffering from chronic Lyme. A good friend of mine went ten years with an undiagnosed (and, of course, untreated) case of Lyme. He eventually took a year-long course of intravenous antibiotics from the Mayo clinic—he had so many IVs they surgically implanted a shunt into his arm to avoid irritating the injection site. It didn't kill him but it made him very very sick. He likened it to chemo. Wasn't cheap either.

He's much better now, and I attributed that to the treatment until I read the CDC pages on PTLDS. It sounds like he might have put himself thru all that for nothing.
 

No, I don't think I am right all the time.  By way of example, let me correct my mistake in the above quote.  The bigger problem is why the CDC denies that chronic infection from Lyme disease COULD exist.    The jury is still out...there is no conclusion to draw as to why some patients continue to suffer.  

My own insight is based mostly on those doctors who continue to provide research (see prior links) and treat those patients.  

I'm surprised your friend received such aggressive treatment from Mayo; it's quite unusual and there would have had to be clear evidence the bacteria was found in spinal fluid and had crossed the blood brain barrier.  
Lazy8

Lazy8 Avatar

Location: The Gallatin Valley of Montana
Gender: Male


Posted: Jul 22, 2019 - 1:47pm

black321 wrote:
I know you like to think you're right all the time, but this time...

You attempt to counter my argument that the CDC has it wrong with more links, back to the CDC?  Further, the "evidence" against long term treatment with antibiotics quotes studies of 3 months or less? Long term would imply 12 months or more. Yes, IV antibiotics are risky (mainly due to port infections), but oral antibiotics have minimal risk usually limited to mild allergic reactions and c diff (again, if one is mindful of gut health, this risk can be minimized).   Funding levels, given the growing # of endemic areas, has been lacking...maybe $20-$30m last year, though that has been starting to grow.
  
Do you k ow anyone with the disease who suffers?  As for patients asking a doc to do something...I'm not talking about a nervous mother looking for a script because their kid has another ear infection, but patients who are bed ridden, lost jobs, marriages, even their life. Again, the doc and patient should be deciding on the risks, not a  gov bureaucracy. Your comment about finding another doc implies further ignorance on the matter, as that is the overriding issue with people with chronic lyme, or even as you prefer, PTLDS: they cant find effective treatment. If you're honestly interested in this topic, do a little actual research...google even.  Here, found this in about 2 minutes:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6023324/
https://www.jhsph.edu/news/news-releases/2019/three-antibiotic-cocktail-clears-persister-lyme-bacteria-in-mouse-study.html
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6287027/
https://www.lymedisease.org/unh-research-confirms-lyme-disease-bacteria-biofilm-in-human-body/

Again, I'm not trying to convince anyone one way or the other about whether its a chronic infection, an autoimmune response, or nonviable artifacts of BB bacteria that the body continues to attack that cause the lingering symptoms...just pointing out the science is far from settled and its foolish to assume otherwise.

ps i'm not interested in the conspiracy nonsense....just trying to help patients.

Sorry to take so long getting back to this, busy weekend.

Yes, I think I'm right all the time. So does everybody. But when I argue about something I try to make sure I actually am, especially on topics like this.

If you claim that "The bigger conspiracy is why the CDC denies that chronic infection from Lyme disease, which is estimated to occur with 20%-30% of those infected, exists" Then a link to the CDC acknowledging that chronic Lyme disease (or at least chronic Lyme disease symptoms) exist is a reasonable response. An activist community arguing for a disease mechanism isn't terribly convincing, especially with so many spectacular fails in recent memory. Yes, people are suffering, maybe people you know and love, maybe even you. That doesn't give you better insight into the causes than a doctor who has spent a career studying the disease and its mechanisms.

And yes, I know someone suffering from chronic Lyme. A good friend of mine went ten years with an undiagnosed (and, of course, untreated) case of Lyme. He eventually took a year-long course of intravenous antibiotics from the Mayo clinic—he had so many IVs they surgically implanted a shunt into his arm to avoid irritating the injection site. It didn't kill him but it made him very very sick. He likened it to chemo. Wasn't cheap either.

He's much better now, and I attributed that to the treatment until I read the CDC pages on PTLDS. It sounds like he might have put himself thru all that for nothing.
black321

black321 Avatar

Location: A sunset in the desert
Gender: Male


Posted: Jul 18, 2019 - 7:14pm



 Lazy8 wrote:
They call it "Post Treatment Lyme Disease Syndrome".  There have been numerous formal studies of long-term antibiotic use; they are referenced in the the article and in citations below. They point out that those treatments are far from risk-free and have shown no better efficacy than placebo.

No doctor worth seeing would dismiss these symptoms as imaginary. If you get that response change doctors.

Lyme disease has had many millions of dollars spent on research. Sometimes we can't cure a disease, no matter how badly we want to. It isn't for lack of trying or because the callous CDC wants people to suffer or is part of some grand conspiracy, it's because the science isn't there.

Long-term use of antibiotics for acne is not something doctors are ok with—far from it.

A doctor can placate a patient's pleas to DO SOMETHING!!!  by prescribing more antibiotics—that happens far to often and has had some dangerous side effects. But it seldom cures the complaint, it just mollifies the patient while natural healing processes work on the problem.
 
I know you like to think you're right all the time, but this time...

You attempt to counter my argument that the CDC has it wrong with more links, back to the CDC?  Further, the "evidence" against long term treatment with antibiotics quotes studies of 3 months or less? Long term would imply 12 months or more. Yes, IV antibiotics are risky (mainly due to port infections), but oral antibiotics have minimal risk usually limited to mild allergic reactions and c diff (again, if one is mindful of gut health, this risk can be minimized).   Funding levels, given the growing # of endemic areas, has been lacking...maybe $20-$30m last year, though that has been starting to grow.
  
Do you k ow anyone with the disease who suffers?  As for patients asking a doc to do something...I'm not talking about a nervous mother looking for a script because their kid has another ear infection, but patients who are bed ridden, lost jobs, marriages, even their life. Again, the doc and patient should be deciding on the risks, not a  gov bureaucracy. Your comment about finding another doc implies further ignorance on the matter, as that is the overriding issue with people with chronic lyme, or even as you prefer, PTLDS: they cant find effective treatment. If you're honestly interested in this topic, do a little actual research...google even.  Here, found this in about 2 minutes:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6023324/
https://www.jhsph.edu/news/news-releases/2019/three-antibiotic-cocktail-clears-persister-lyme-bacteria-in-mouse-study.html
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6287027/
https://www.lymedisease.org/unh-research-confirms-lyme-disease-bacteria-biofilm-in-human-body/

Again, I'm not trying to convince anyone one way or the other about whether its a chronic infection, an autoimmune response, or nonviable artifacts of BB bacteria that the body continues to attack that cause the lingering symptoms...just pointing out the science is far from settled and its foolish to assume otherwise.

ps i'm not interested in the conspiracy nonsense....just trying to help patients.




Lazy8

Lazy8 Avatar

Location: The Gallatin Valley of Montana
Gender: Male


Posted: Jul 18, 2019 - 4:06pm

black321 wrote:
To the last two.  The CDC itself has no idea does not know they exact reason why morbidity persists after the 2-3 weeks...the cause of "post lyme syndrome" as they call it.  Persistent or difficult to treat bacterial infection is not unheard of (see TB and syphilis, another "similar" bacteria to lyme).   Again, there are the cyst and biofilm issues.   There have been no formal studies of long-term antibiotic use (beyond two-three months) in treatment, although there is plenty of clinical evidence it is effective.  I am not advocating for l-t antibiotics, but also don't believe its should be dismissed as the CDC recommends, particularly when so many are suffering.  Like any drug, long term antibiotic treatment has risks, c-diff being the most significant.  Meanwhile, the clinical evidence shows significant relieve in symptoms, if not cures, from antibiotics.  Shouldn't a doc and patient be allowed to weigh the risks?   For many who are bed ridden or worse, rolling the dice on a low prob case of c diff, assuming proper care of gut is also followed, seems like a chance most would take.   Interesting that docs are ok providing long term antibiotics to treat acne, but not lyme?  

As to Sir's wife's imagined suffering...that is the answer you usually get from a western doc, who are deficient in treating many chronic conditions.  The treatments offered to lyme suffers from most docs only address symptoms, usually poorly, and often further impair their condition.  Offering steroids to someone with a possible infection is probably not a good idea.

They call it "Post Treatment Lyme Disease Syndrome".  There have been numerous formal studies of long-term antibiotic use; they are referenced in the the article and in citations below. They point out that those treatments are far from risk-free and have shown no better efficacy than placebo.

No doctor worth seeing would dismiss these symptoms as imaginary. If you get that response change doctors.

Lyme disease has had many millions of dollars spent on research. Sometimes we can't cure a disease, no matter how badly we want to. It isn't for lack of trying or because the callous CDC wants people to suffer or is part of some grand conspiracy, it's because the science isn't there.

Long-term use of antibiotics for acne is not something doctors are ok with—far from it.

A doctor can placate a patient's pleas to DO SOMETHING!!!  by prescribing more antibiotics—that happens far to often and has had some dangerous side effects. But it seldom cures the complaint, it just mollifies the patient while natural healing processes work on the problem.
black321

black321 Avatar

Location: A sunset in the desert
Gender: Male


Posted: Jul 18, 2019 - 8:49am

To the last two.  The CDC itself has no idea does not know they exact reason why morbidity persists after the 2-3 weeks...the cause of "post lyme syndrome" as they call it.  Persistent or difficult to treat bacterial infection is not unheard of (see TB and syphilis, another "similar" bacteria to lyme).   Again, there are the cyst and biofilm issues.   There have been no formal studies of long-term antibiotic use (beyond two-three months) in treatment, although there is plenty of clinical evidence it is effective.  I am not advocating for l-t antibiotics, but also don't believe its should be dismissed as the CDC recommends, particularly when so many are suffering.  Like any drug, long term antibiotic treatment has risks, c-diff being the most significant.  Meanwhile, the clinical evidence shows significant relieve in symptoms, if not cures, from antibiotics.  Shouldn't a doc and patient be allowed to weigh the risks?   For many who are bed ridden or worse, rolling the dice on a low prob case of c diff, assuming proper care of gut is also followed, seems like a chance most would take.   Interesting that docs are ok providing long term antibiotics to treat acne, but not lyme?  

As to Sir's wife's imagined suffering...that is the answer you usually get from a western doc, who are deficient in treating many chronic conditions.  The treatments offered to lyme suffers from most docs only address symptoms, usually poorly, and often further impair their condition.  Offering steroids to someone with a possible infection is probably not a good idea.  
ScottFromWyoming

ScottFromWyoming Avatar

Location: Powell
Gender: Male


Posted: Jul 18, 2019 - 8:24am



 black321 wrote:


This one and the association with Plum Island research has been floating around for the past couple of decades.  The bigger conspiracy is why the CDC denies that chronic infection from Lyme disease, which is estimated to occur with 20%-30% of those infected, exists.   As a result, insurance will only cover 2-3 weeks of antibiotics for treatment (although some docs may go another round, 2 months is usually the max).  Chronic suffers are forced to take their health care into their own hands, without insurance coverage.   Too many simply believe they are "healed" and continue to suffer for years and often decades.   

 

The CDC doesn't say it doesn't exist, they say that the risks of taking antibiotics for longer than the 2–3 weeks brings a risk of greater problems. This is a page from Lazy's link that talks about Post Lyme Disease Syndrome

edit: too slow!
Lazy8

Lazy8 Avatar

Location: The Gallatin Valley of Montana
Gender: Male


Posted: Jul 18, 2019 - 8:18am

black321 wrote:
Seems to reinforce my point.  I'm not saying I know in each case whether it is an active infection, or some syndrome triggered by the infection, but there are ample studies confirming the bacteria goes dormant in cyst form (and can exist in that state for years), creates biofilm to protect against antibiotics, and that a persistent infection is possible.  In fact, I'm saying the science is clearly unsettled.

No, it doesn't.

sirdroseph

sirdroseph Avatar

Location: Yes
Gender: Male


Posted: Jul 18, 2019 - 7:34am

 black321 wrote:


 Lazy8 wrote:
black321 wrote:
 This one and the association with Plum Island research has been floating around for the past couple of decades.  The bigger conspiracy is why the CDC denies that chronic infection from Lyme disease, which is estimated to occur with 20%-30% of those infected, exists.   As a result, insurance will only cover 2-3 weeks of antibiotics for treatment (although some docs may go another round, 2 months is usually the max).  Chronic suffers are forced to take their health care into their own hands, without insurance coverage.   Too many simply believe they are "healed" and continue to suffer for years and often decades.>

Just on the off chance somebody actually believes this...
 
Seems to reinforce my point.  I'm not saying I know in each case whether it is an active infection, or some syndrome triggered by the infection, but there are ample studies confirming the bacteria goes dormant in cyst form (and can exist in that state for years), creates biofilm to protect against antibiotics, and that a persistent infection is possible.  In fact, I'm saying the science is clearly unsettled.  

 
Yea tell my wife she is imagining her struggle.
black321

black321 Avatar

Location: A sunset in the desert
Gender: Male


Posted: Jul 18, 2019 - 7:00am



 Lazy8 wrote:
black321 wrote:
 This one and the association with Plum Island research has been floating around for the past couple of decades.  The bigger conspiracy is why the CDC denies that chronic infection from Lyme disease, which is estimated to occur with 20%-30% of those infected, exists.   As a result, insurance will only cover 2-3 weeks of antibiotics for treatment (although some docs may go another round, 2 months is usually the max).  Chronic suffers are forced to take their health care into their own hands, without insurance coverage.   Too many simply believe they are "healed" and continue to suffer for years and often decades.>

Just on the off chance somebody actually believes this...

 
Seems to reinforce my point.  I'm not saying I know in each case whether it is an active infection, or some syndrome triggered by the infection, but there are ample studies confirming the bacteria goes dormant in cyst form (and can exist in that state for years), creates biofilm to protect against antibiotics, and that a persistent infection is possible.  In fact, I'm saying the science is clearly unsettled.  

Lazy8

Lazy8 Avatar

Location: The Gallatin Valley of Montana
Gender: Male


Posted: Jul 18, 2019 - 6:59am

black321 wrote:
 This one and the association with Plum Island research has been floating around for the past couple of decades.  The bigger conspiracy is why the CDC denies that chronic infection from Lyme disease, which is estimated to occur with 20%-30% of those infected, exists.   As a result, insurance will only cover 2-3 weeks of antibiotics for treatment (although some docs may go another round, 2 months is usually the max).  Chronic suffers are forced to take their health care into their own hands, without insurance coverage.   Too many simply believe they are "healed" and continue to suffer for years and often decades.>

Just on the off chance somebody actually believes this...

sirdroseph

sirdroseph Avatar

Location: Yes
Gender: Male


Posted: Jul 18, 2019 - 6:53am

 black321 wrote:


 sirdroseph wrote:

Yep yep.  Herbal is the way we roll! lol
 
Great.  Still recommend Buhner, if you've never heard of him.  Lot of folks peddling their "own" herbs or strategies out there.  The only thing he sells is that paperback, and has some good recommendations for sourcing bulk herbs.  Like this place :https://1stchineseherbs.com/

Better yet, he recommends growing them yourself.  
 
Already on it, we have been metriculating down the road to self sufficiency for awhile now, still have a ways to go but we're working on it!
black321

black321 Avatar

Location: A sunset in the desert
Gender: Male


Posted: Jul 18, 2019 - 6:46am



 sirdroseph wrote:

Yep yep.  Herbal is the way we roll! lol
 
Great.  Still recommend Buhner, if you've never heard of him.  Lot of folks peddling their "own" herbs or strategies out there.  The only thing he sells is that paperback, and has some good recommendations for sourcing bulk herbs.  Like this place :https://1stchineseherbs.com/

Better yet, he recommends growing them yourself.  


sirdroseph

sirdroseph Avatar

Location: Yes
Gender: Male


Posted: Jul 18, 2019 - 6:39am

 black321 wrote:


 sirdroseph wrote:

Starri disease is a close relative of Lyme and both of these diseases are absolutely life long debilitating, my wife has never been the same after being infected almost 10 years ago.
 
Have you tried the herbal route?  Stephen Buhner has a very good book for all sorts of cases.  

https://www.amazon.com/s?k=stephen+buhner+healing+lyme&gclid=CjwKCAjwscDpBRBnEiwAnQ0HQGLDo5hY1P8U0sjrjLGfZ9Y9cNz1yAx-TOchJfIOIyILtzoGMOUFeRoCAHYQAvD_BwE&hvadid=177111154999&hvdev=c&hvlocphy=9004542&hvnetw=g&hvpos=1t1&hvqmt=e&hvrand=16179037549015550837&hvtargid=kwd-5193089601&hydadcr=15527_9753833&tag=googhydr-20&ref=pd_sl_67ojx3vpn0_e
 
Yep yep.  Herbal is the way we roll! lol
black321

black321 Avatar

Location: A sunset in the desert
Gender: Male


Posted: Jul 18, 2019 - 6:30am



 sirdroseph wrote:

Starri disease is a close relative of Lyme and both of these diseases are absolutely life long debilitating, my wife has never been the same after being infected almost 10 years ago.
 
Have you tried the herbal route?  Stephen Buhner has a very good book for all sorts of cases.  

https://www.amazon.com/s?k=stephen+buhner+healing+lyme&gclid=CjwKCAjwscDpBRBnEiwAnQ0HQGLDo5hY1P8U0sjrjLGfZ9Y9cNz1yAx-TOchJfIOIyILtzoGMOUFeRoCAHYQAvD_BwE&hvadid=177111154999&hvdev=c&hvlocphy=9004542&hvnetw=g&hvpos=1t1&hvqmt=e&hvrand=16179037549015550837&hvtargid=kwd-5193089601&hydadcr=15527_9753833&tag=googhydr-20&ref=pd_sl_67ojx3vpn0_e


sirdroseph

sirdroseph Avatar

Location: Yes
Gender: Male


Posted: Jul 18, 2019 - 6:10am

 black321 wrote:


 ScottFromWyoming wrote:

PENTAGON MAY HAVE RELEASED WEAPONIZED TICKS THAT HELPED SPREAD OF LYME DISEASE: INVESTIGATION ORDERED

 
This one and the association with Plum Island research has been floating around for the past couple of decades.  The bigger conspiracy is why the CDC denies that chronic infection from Lyme disease, which is estimated to occur with 20%-30% of those infected, exists.   As a result, insurance will only cover 2-3 weeks of antibiotics for treatment (although some docs may go another round, 2 months is usually the max).  Chronic suffers are forced to take their health care into their own hands, without insurance coverage.   Too many simply believe they are "healed" and continue to suffer for years and often decades.   

 
Starri disease is a close relative of Lyme and both of these diseases are absolutely life long debilitating, my wife has never been the same after being infected almost 10 years ago.
black321

black321 Avatar

Location: A sunset in the desert
Gender: Male


Posted: Jul 18, 2019 - 5:47am



 ScottFromWyoming wrote:

PENTAGON MAY HAVE RELEASED WEAPONIZED TICKS THAT HELPED SPREAD OF LYME DISEASE: INVESTIGATION ORDERED


 
This one and the association with Plum Island research has been floating around for the past couple of decades.  The bigger conspiracy is why the CDC denies that chronic infection from Lyme disease, which is estimated to occur with 20%-30% of those infected, exists.   As a result, insurance will only cover 2-3 weeks of antibiotics for treatment (although some docs may go another round, 2 months is usually the max).  Chronic suffers are forced to take their health care into their own hands, without insurance coverage.   Too many simply believe they are "healed" and continue to suffer for years and often decades.   

ScottFromWyoming

ScottFromWyoming Avatar

Location: Powell
Gender: Male


Posted: Jul 17, 2019 - 4:08pm

PENTAGON MAY HAVE RELEASED WEAPONIZED TICKS THAT HELPED SPREAD OF LYME DISEASE: INVESTIGATION ORDERED


Red_Dragon

Red_Dragon Avatar



Posted: Apr 25, 2019 - 4:39pm


Red_Dragon

Red_Dragon Avatar



Posted: Feb 1, 2019 - 5:04am

NSA confirms everything is a conspiracy, conspiracy theorists not convinced
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