Using Bee Stings to Treat Lyme Disease • Hacker News Board

Re: Using Bee Stings to Treat Lyme Disease

#21

Post by moxie » Wed, Dec 04, 2019, 10:09 PM UTC

PragmaticPulp wrote: post #10

I spent some time in the Lyme disease communities after I tested positive for Lyme disease under the official two-test CDC criteria. The pop-culture version of Lyme disease discussed on the Internet has almost no resemblance to the actual medical science. There are a lot of people genuinely suffering unexplained symptoms, real pain, who are drawn into the seductive explanations of the “chronic Lyme” communities onlin…

> As for Lyme disease: The actual infection can be treated with a standard course of antibiotics. The infection does not persist indefinitely, although some people experience long-lasting effects after the infection is gone.

I don't think it's possible to make an absolute statement like this with 100% certainty given the current state of the art. Lyme is a spirochete, and there also seems to be real research suggesting it can grow biofilm to make it antibiotic resistant or resurgent.

There are patients who test positive under CDC criteria, take antibiotics, and never see a transition from IgM to IgG.

There are also patients who test postive under CDC criteria, take antibiotics, see a transition, but still experience symptoms (what you would call 'long-lasting effects'). In some cases patients in that situation have extreme gland swelling that when biopsied, seem to contain Lyme.

Like all of medicine, I think it's squishier than what you're describing. There is also a lot of crazy shit on the internet, but like you say, that's because people are genuinely suffering and have no alternatives.

Re: Using Bee Stings to Treat Lyme Disease

#22

Post by tokai » Wed, Dec 04, 2019, 10:18 PM UTC

PragmaticPulp wrote: post #10

I spent some time in the Lyme disease communities after I tested positive for Lyme disease under the official two-test CDC criteria. The pop-culture version of Lyme disease discussed on the Internet has almost no resemblance to the actual medical science. There are a lot of people genuinely suffering unexplained symptoms, real pain, who are drawn into the seductive explanations of the “chronic Lyme” communities onlin…

My aunt was sure she had chronic lyme. She used a couple of years of her life fighting her physician over it. Trying to get him to accept it.

Turned out it was lung cancer. When it was diagnosed correctly, it had turn metastatic and spread to most of her organs including the brain. It went really fast from there. I don't know how it could have turned out. But I'm certain that she would have had more of a chance, if she hadn't interpreted her symptoms through the distorted information she got online.

Re: Using Bee Stings to Treat Lyme Disease

#23

Post by gerbilly » Wed, Dec 04, 2019, 10:19 PM UTC

PragmaticPulp wrote: post #10

I spent some time in the Lyme disease communities after I tested positive for Lyme disease under the official two-test CDC criteria. The pop-culture version of Lyme disease discussed on the Internet has almost no resemblance to the actual medical science. There are a lot of people genuinely suffering unexplained symptoms, real pain, who are drawn into the seductive explanations of the “chronic Lyme” communities onlin…

> These people are desperate for relief, so they’re often cycling through 10s of supplements or quack treatments at a time. If they spontaneously go into remission, they’ll swear it was due to the supplements.

Can you blame them for trying to help themselves? I don't think any of them claim to be conducting scientific studies.

If I ever have a condition that medical science can't explain or treat, I might find myself clutching similar quack remedies myself, despite all my vaunted rationality.

Re: Using Bee Stings to Treat Lyme Disease

#24

Post by PragmaticPulp » Wed, Dec 04, 2019, 10:24 PM UTC

moxie wrote: post #21

PragmaticPulp wrote: post #10

I spent some time in the Lyme disease communities after I tested positive for Lyme disease under the official two-test CDC criteria. The pop-culture version of Lyme disease discussed on the Internet has almost no resemblance to the actual medical science. There are a lot of people genuinely suffering unexplained symptoms, real pain, who are drawn into the seductive explanations of the “chronic Lyme” communities onlin…

> As for Lyme disease: The actual infection can be treated with a standard course of antibiotics. The infection does not persist indefinitely, although some people experience long-lasting effects after the infection is gone. I don't think it's possible to make an absolute statement like this with 100% certainty given the current state of the art. Lyme is a spirochete, and there also seems to be real research suggesti…

> I don't think it's possible to make an absolute statement like this with 100% certainty

100% certainty is an impossibly high bar in any hard science

This is the problem with chronic Lyme communities: They fixate on the "what if", no matter how small the probabilities. Many of these patients might very well have entirely treatable yet unrelated disorders, but their fixation on the chronic lyme infection theories keeps them focused on the wrong treatments. Many doctors have tried endless treatments with high-dose antibiotics, but the clinical studies consistently show no difference vs. placebo. We all need to move on from the chronic lyme infection theory unless/until someone provides real evidence to the contrary.

> There are patients who test positive under CDC criteria, take antibiotics, and never see a transition from IgM to IgG.

That was me. I tested positive under the CDC criteria, but followup IgG tests were negative. I lucked into a very astute infectious disease specialist who was as up-to-date on the research as I could have hoped for, and she even took the time to walk me through the various theories and studies.

Re: Using Bee Stings to Treat Lyme Disease

#25

Post by Vomzor » Wed, Dec 04, 2019, 10:26 PM UTC

PragmaticPulp wrote: post #10

I spent some time in the Lyme disease communities after I tested positive for Lyme disease under the official two-test CDC criteria. The pop-culture version of Lyme disease discussed on the Internet has almost no resemblance to the actual medical science. There are a lot of people genuinely suffering unexplained symptoms, real pain, who are drawn into the seductive explanations of the “chronic Lyme” communities onlin…

During a panel at this years LymeMIND conference a representative from the CDC named Susanna Visser said that she and her team absolutely believe in persistent Lyme, and that the CDC website now acknowledges it on a basic level.

>Why some patients experience PTLDS is not known. Some experts believe that Borrelia burgdorferi can trigger an “auto-immune” response causing symptoms that last well after the infection itself is gone. Auto–immune responses are known to occur following other infections, including campylobacter (Guillain-Barré syndrome), chlamydia (Reiter’s syndrome), and strep throat (rheumatic heart disease). Other experts hypothesize that PTLDS results from a persistent but difficult to detect infection. Finally, some believe that the symptoms of PTLDS are due to other causes unrelated to the patient’s Borrelia burgdorferi infection.

"Other experts hypothesize that PTLDS results from a persistent but difficult to detect infection." https://www.cdc.gov/lyme/postlds/index.html

Re: Using Bee Stings to Treat Lyme Disease

#26

Post by refurb » Wed, Dec 04, 2019, 10:27 PM UTC

magic_beans wrote: post #7

kylek wrote: post #5

Earlier quoted context omitted.

Came here to mention Kambo as it was my first thought too. (Kambo has been used to treat lyme disease, as well. I doubt there have been any official studies unfortunately). Also, one doesn't _need_ to use saliva, that's usually only done due to lack of clean water in the amazon (Source: am an IAKP certified practitioner)

I've been told by a practitioner that saliva activates the kambo better than plain water, but who knows. I've been trying kambo for ulcerative colitis over the past year. My gastroenterologist is perfectly happy to have me take a variety of medications for the rest of my life , whose safety has only been studied over a six-month period. Western medicine gets the job done, it's true, but it's time to open our minds to…

Western medicine is just defined as medicine that has been through a rigorous clinical trial process that actually proves it works.

Until these Eastern medicine have gone through the same process, it’s just anecdotal evidence.

Re: Using Bee Stings to Treat Lyme Disease

#27

Post by ohyeshedid » Wed, Dec 04, 2019, 10:28 PM UTC

gerbilly wrote: post #23

PragmaticPulp wrote: post #10

I spent some time in the Lyme disease communities after I tested positive for Lyme disease under the official two-test CDC criteria. The pop-culture version of Lyme disease discussed on the Internet has almost no resemblance to the actual medical science. There are a lot of people genuinely suffering unexplained symptoms, real pain, who are drawn into the seductive explanations of the “chronic Lyme” communities onlin…

> These people are desperate for relief, so they’re often cycling through 10s of supplements or quack treatments at a time. If they spontaneously go into remission, they’ll swear it was due to the supplements. Can you blame them for trying to help themselves? I don't think any of them claim to be conducting scientific studies. If I ever have a condition that medical science can't explain or treat, I might find myself…

>Can you blame them for trying to help themselves?

I don't blame them for trying to find a remedy, I do blame those that take advantage of that.

Re: Using Bee Stings to Treat Lyme Disease

#28

Post by Someone1234 » Wed, Dec 04, 2019, 10:32 PM UTC

moxie wrote: post #21

PragmaticPulp wrote: post #10

I spent some time in the Lyme disease communities after I tested positive for Lyme disease under the official two-test CDC criteria. The pop-culture version of Lyme disease discussed on the Internet has almost no resemblance to the actual medical science. There are a lot of people genuinely suffering unexplained symptoms, real pain, who are drawn into the seductive explanations of the “chronic Lyme” communities onlin…

> As for Lyme disease: The actual infection can be treated with a standard course of antibiotics. The infection does not persist indefinitely, although some people experience long-lasting effects after the infection is gone. I don't think it's possible to make an absolute statement like this with 100% certainty given the current state of the art. Lyme is a spirochete, and there also seems to be real research suggesti…

> when biopsied, seem to contain Lyme.

What's this a reference to? And what do you mean by "seem" to contain Lyme Disease?

Re: Using Bee Stings to Treat Lyme Disease

#29

Post by obelos » Wed, Dec 04, 2019, 10:33 PM UTC

PragmaticPulp wrote: post #10

I spent some time in the Lyme disease communities after I tested positive for Lyme disease under the official two-test CDC criteria. The pop-culture version of Lyme disease discussed on the Internet has almost no resemblance to the actual medical science. There are a lot of people genuinely suffering unexplained symptoms, real pain, who are drawn into the seductive explanations of the “chronic Lyme” communities onlin…

Somewhat diverging from the topic, but I wonder how many “chronic Lyme” cases people self-diagnose are instances of parvovirus B19. I'm in the process of recovering from a B19 infection now, but had my kids not gotten it first and displayed the classic slapped-face rash of parvo, I would have almost certainly gone down the Lyme rabbit hole based on the signs and symptoms I've been experiencing. The spontaneous appearance of rheumatoid arthritis that lingers for weeks immediately brings to mind the colloquial notion of Lyme disease.

Re: Using Bee Stings to Treat Lyme Disease

#30

Post by chefandy » Wed, Dec 04, 2019, 10:52 PM UTC

ammon wrote: post #13

magic_beans wrote: post #8

Earlier quoted context omitted.

That's certainly true, but what other option do you have? When you have Lyme, you are an explorer in an alien landscape. Medicine has not caught up to the incidence of the disease, and people with Lyme must do something . They can't all just wait around in pain and misery for the FDA to approve a treatment.

Lyme disease is easily curable with a large course of antibiotics. Now, there can be complications that persist after the infection is cured (arthritis, cardiac issues, and - controversially - fatigue and post-treatment Lyme syndrome). But the infection itself is curable today.

You are technically right, but I find this pedantry counterproductive. When someone is simply frustrated by their lack of options to alleviate their suffering, inserting yourself solely to make sure they're using the rightest possible terminology while ignoring their actual point a) doesn't add anything of value to the discussion, unless the distinctions between any of these terms can materially advance the discussion, b) is plainly dismissive of people's distress, and c) probably incorrectly assumes that they don't actually know what they're talking about when many people who are experiencing the alleged long-term side effects of Lyme, such as my wife, use that word as colloquial umbrella term to describe their symptoms. They've probably read more about it than you have, but writing out "fatigue and post-treatment Lyme syndrome" gets old.