Lyme disease. Org protocol survey poll results

I noticed this polling on Lyme disease. Org and wondered if people's experience here matches agrees or coincides with the results from this polling?

https://www.lymedisease.org/mylymedata-alternative-lyme-disease-treatment/

I was surprised that people only noticed positive effects from stem cell therapy in 3% of cases. I also was surprised how many people tried "medical marijuana," considering it's illegal in most places still, and wonder how many people might have been referring to CBD instead. Also surprised at how many people have access to hyper-thermia and hyperbaric oxygen treatments; I have no idea where I would access this type of care, nor have they been recommended to me. I like knowing that 31% of survey respondents use alternative therapies exclusively.

I have tried about half of these therapies, and I think in all cases I have found them to be helpful. Has anyone tried one of these therapies and noticed no real difference or only a small difference?

It's definitely interesting to see which treatments are the most popular. Also interesting how much things change by state. I'm very glad that data is being collected about these things!

The research design of this survey is flawed, from a scientific and statistical standpoint. For example, I strongly suspect that a lot of people who reported negative "side effects" from rife were referring to herxes, and not technically side effects. And "effectiveness" isn't defined, either (i.e. I suspect that people rated saunas as "effective" because they feel better from a good detox, whereas they might rate an herbal protocol as "effective" based on its ability to control the infections - two very different definitions of "effectiveness"). Lots of apples and oranges.

I definitely want to see a more in-depth, fine-grained survey about these things. For example, there are different types of acupuncture, which will have different goals and different effects. Ditto for different herbal protocols, types of homeopathy, etc. And someone who has acupuncture three times will have a different experience from someone who goes regularly. And of course there are many therapies that aren't listed.

Hi, Girlie. Yes, a lot of states (in the USA) now have medical use legality, but many of those only allow it for a few conditions, so it might still be hard for folks with Lyme to access legally. I don't know how widespread the restrictions are these days, honestly, as I'm in a state with legal medical and recreational use.

What's interesting about the survey to me in this regard is that people might have been rating cannabis they used medically but had to buy illegally (so perhaps it has been cut with fillers or other products, and not reliable dosages) or they could have been rating CBD oil (which is made from CBD and other terpenes from cannabis but does not contain psychoactive substances like THC and thus for medical research purposes would be different from medical marijuana). I know it's an informal survey, though, and I should give less thought to the research design!

saraeli said...
Hi, Girlie. Yes, a lot of states (in the USA) now have medical use legality, but many of those only allow it for a few conditions, so it might still be hard for folks with Lyme to access legally. I don't know how widespread the restrictions are these days, honestly, as I'm in a state with legal medical and recreational use.

What's interesting about the survey to me in this regard is that people might have been rating cannabis they used medically but had to buy illegally (so perhaps it has been cut with fillers or other products, and not reliable dosages) or they could have been rating CBD oil (which is made from CBD and other terpenes from cannabis but does not contain psychoactive substances like THC and thus for medical research purposes would be different from medical marijuana). I know it's an informal survey, though, and I should give less thought to the research design!

I tried the cbd in 2016 and it did nothing for me... but several people did get good results - retired LLMD Murakami has been studying it for a few years now.

Marijuana is legal now in my Province - and can be purchased in stores - but people are saying it’s not as good as the weed they used to buy from other sources - it’s dry and crumbly apparently - not as fresh.

I have no idea what they’re talking about . Lol. 😬