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Using Bee Stings to Treat Lyme Disease

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Re: Using Bee Stings to Treat Lyme Disease

#31

Post by projectileboy »

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…

Nice post. One thing I’ll offer in defense of the “chronic Lyme” community is that if you have persistent medical issues that don’t have a quick solution (or else a well-established, very expensive drug), doctors in general will just not want to deal with you, which can be very frustrating. When people don’t get the help they need, they turn to one another, for better or worse.

Re: Using Bee Stings to Treat Lyme Disease

#32

Post by newnewpdro »

Someone on another HN thread about Lyme disease described curing their persistent treatment-resistant infection with a long fast.

I wonder if these folks who are stinging themselves have already tried something like that.

If memory serves it was a fast long enough to significantly weaken the immune system, to the point that the person said they were the sickest and weakest they had ever been in their life. Then when they resumed feeding, their immune system went into overdrive and cleared the infection.

Edit:

Found the comment

https://news.ycombinator.com/item?id=20494464

Their linked writeup seems to be down, archive.org:

http://web.archive.org/web/20190820205143/http://www.smashco...

Re: Using Bee Stings to Treat Lyme Disease

#33

Post by Ididntdothis »

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…

Your post shows the tension between science/medicine and the people who suffer from chronic problems. I know someone who had/thought she had Lyme’s. She ran from doctor to doctor, got dozens of different drugs and was often treated with disbelief. This while a person who had been pretty active before had repeated periods when she barely could leave her home or do anything else. It’s no wonder that these people try everything possible if regular doctors can’t help. What else are they supposed to do? When I taught yoga I met people with fibromyalgia or chronic fatigue. They all had stories of doctors questioning the validity of their symptoms. It seems if a problem isn’t documented in textbooks they have a tendency to deny its existence.

Re: Using Bee Stings to Treat Lyme Disease

#34

Post by GordonS »

obelos wrote: post #29
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 appear…

I had a look at the Wikipedia page for parvovirus B19, but I don't see many similarities to what chronic Lyme sufferers say; they generally complain of chronic pain that lasts for several months or years, not just weeks. Lyme sufferers also generally claim to have been bitten by a tick, and had them characteristic target rash, rather than a "slapped face" rash.

Honestly not sure what would make you think "Lyme" with the symptoms you describe.

Re: Using Bee Stings to Treat Lyme Disease

#36

Post by Vomzor »

PragmaticPulp wrote: post #24
moxie wrote: post #21

Earlier quoted context omitted.

> 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 kee…

There only have been a couple antibiotic studies, it's hard to get funding for more elaborate studies because of the controversy. Those studies ignore the research on biofilms and only gave antibiotics for a couple weeks. And even in those flawed studies there was a marked improvement in quality of life for Lyme patients.

Let's take the PLEASE[0] study for example. Although significant improvement in health was measured (on average 4.6 points on the SF-36 scale; 3 points is considered significant progress) the results were presented with the headline: 'Long-term use of antibiotics does not benefit long-term complaints of Lyme'.

While tens of thousands of patients have been cured by a cocktail of antibiotics taken for several months or sometimes years. This is also what the current in vitro research is showing. Lyme persisters can only be killed by a combination of antibiotics.[1] Like tuberculosis. And it's also what this data analysis of 200 patients shows.[2]

>We collected data from an online survey of 200 of our patients, which evaluated the efficacy of dapsone (diaminodiphenyl sulfone, ie, DDS) combined with other antibiotics and agents that disrupt biofilms for the treatment of chronic Lyme disease/post-treatment Lyme disease syndrome (PTLDS). ... Conclusion DDS CT decreased eight major Lyme symptoms severity and improved treatment outcomes among patients with chronic Lyme disease/PTLDS and associated coinfections.

And recently we have the spectacular results of Disulfiram.[3] A clinical trial is underway at Colombia University so we won't have offical results until 2021 but all signs point to it being a gamechanger. Lyme communities are full of people with miracle stories after taking Disulfiram.

[0]https://www.nejm.org/doi/full/10.1056/NEJMoa1505425

[1]https://www.jhsph.edu/news/news-releases/2019/three-antibiot...

[2]https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6388746/

[3] https://www.ncbi.nlm.nih.gov/pubmed/31151194

Re: Using Bee Stings to Treat Lyme Disease

#37

Post by caillancm »

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…

This is a great comment. A lot of what OP says is pertinent to other poorly-defined chronic diseases too.

As a community, physicians and researchers are really not capable of dealing with such conditions right now. As a result, large numbers of suffering people end up neglected and you have, for example, patients with chronic fatigue syndrome using anti-retrovirals off-label on totally spurious grounds.

Re: Using Bee Stings to Treat Lyme Disease

#38

Post by cjbprime »

The story reminds me of the people doing intentional helminth infestation (e.g. hookworm) as a treatment for issues like asthma and IBD. My sense was that helminth treatments are on pretty solid scientific ground -- of the kind where we don't have large N studies but that's only because it would be hard to get approval for them -- but maybe that's not true? Reading this article has me wondering if it's all just placebo and eventual recovery.

Re: Using Bee Stings to Treat Lyme Disease

#39

Post by cpncrunch »

chefandy wrote: post #30
ammon wrote: post #13

Earlier quoted context omitted.

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 discussio…

The problem is that most of these people who are diagnosed by "chronic lyme" actually have CFS (according to multiple studies). So, it's unlikely that any lyme treatments will work for these patients.

As for CFS, many people do fully recover from that (I have myself, for example). But going down the chronic lyme rabbit hole is unlikely to bring any kind of relief.

Re: Using Bee Stings to Treat Lyme Disease

#40

Post by Alex3917 »

PragmaticPulp wrote: post #24
moxie wrote: post #21

Earlier quoted context omitted.

> 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 kee…

> This is the problem with chronic Lyme communities: They fixate on the "what if", no matter how small the probabilities.

The chronic lyme people (e.g. ILADS) are often making recommendations that aren't based on solid evidence, but the reason they exist in the first place is because the CDC recommendations are also bullshit and the CDC isn't doing nearly enough to stem the epidemic.

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