LymeDisease.org and MyLymeData results

As some of you may be aware, for a few years now Lymedisease.org have been running a program called MyLymeData to encourage lyme disease patients to record and share data on their experience of this illness, symptoms treatments etc to aid research efforts into the disease.

This can be valuable – as the numbers involved are generally much larger than can be achieved with actual controlled trials - so the data has useful numeric power compared to anecdotal reports and can in therefore provide some insights into things like what treatments work best etc

They have now started to publish the results of analysing this data
This article looks as what proportion of patients used which treatment approach and how many reached remission
https://www.lymedisease.org/antibiotics-for-lyme-disease/

It’s a 5 minute read with most of the data presented as easy to follow graphics so I encourage you to take a look.
The three main takeaways from this initial analysis are:

Chronic Lyme disease patients who improve substantially more often:
• Use antibiotics as part of their treatment approach
• Take antibiotics for more than 4 months and often for more than a year
• Rely on LLMDs to oversee their care

To my mind the following chart was very telling – if you look at the darkest blue bar – the patients who recovered – you can see the percentage that got their health back starts to go up significantly after 4 months of antibiotics and is much higher still in those that treated with antibiotics for over a year

https://www.lymedisease.org/images/lyme-disease-antibiotics-treatment-duration-patients.jpg

This kind of exponential response is indicative of an underlying relationship between treatment duration and full recovery

Of course, antibiotics are not the only therapy possible- just the one for which we have the most evidence, and in fact the majority of patients who did well also used alternative therapies.

Whether this means they had a material impact on the outcome – or are just indicative of people with lyme being willing to try anything to get better is not possible to say from this study – but perhaps they will do more looking into other treatment options in the future

I would be interested in one that evaluated things like Rife or HBOT for instance

I should highlight that these are essentially observational studies – so while numeric power is good – observational studies cannot prove things like cause and effect - but can indicate associations and trends

All the best

its quite interesting, thanks for posting garzie! I guess people who have classic lyme pain, can progress with marijuhana. More as a painkiller, not as an treatment... Its crazy also how detoxing mercury effectiv is... im not sure if they missing SOT or is it the Electromagnetic therapy? Im missing parasites clean, would be nice to see. But in generals this charts are awesome also the one with the ABX makes me kind of hope! Thanks for posting and updating!

hi RW

yes, i agree - 41% seems on the high side for non responders - but i think we should consider that this is an observational study of people who signed up voluntarily from a group of people who were self identifying as chronic Lyme sufferers ( ie members of the lyme disease.org community )

as such - people who got lyme - got treated early - and recovered wouldn't tend to be represented in that sample group - so would not be in the 59% of responders. yet they clearly responded.

also the majority of people who did get chronic lyme - but treated with long term antibiotics and then recovered are unlikely to be still spending their time on lymedisease.org or filling out surveys - as most people will be keen to get back to living a full life, earning and income, raising a family etc and generally making up for lost time.
so again these responders are likely to be dramatically underrepresented in the sample group as the sample method effectively excludes them.

in addition, people who tried antibiotics for a few weeks - felt awful and stopped - would presumably report that they did not respond. which is true - but after only such a short trial is not perhaps a good indicator of true effectiveness.

the list goes on - for example - did they just take one antibiotic as is often prescribed by primary care physicians - we know people with chronic lyme typically need combinations for effective treatment

overall we have to bear in mind that this is not a study where researchers get two groups of people - give one group a controlled treatment - and the other group a controlled non-treatment

instead its a self reported survey type study - so there is just some kind of questionnaire that people complete in their own time.
This means that the answers given ( and then later represented in the data and charts) are simply whatever each individual interpreted the question to mean.

so for instance - on the medical marijuana question - when asked if they found medical marijuana an effective treatment - respondents could interpret this to mean - did it make them feel good- or simply was it effective at getting them stoned. we have no real way of knowing.

i think there may be some in-vivo research showing antimicrobial properties for cannabis - but most plants make some kind of antimicrobial compounds - and i think the quantity needed to get anywhere close to the lab experiments concentrations in a humans would render most people catatonic. so my guess is most of those responses reflect more the fact that people report they feel better when they smoke cannabis - rather than its actually acting as a powerful systemic antimicrobial.

these ins and outs of interpretation are actually quite interesting - as with any study - context is everything.

your LLMD sounds pretty rational to me - i hope you can find a way to tackle the infections without provoking undue immune reactions - or ways to make them more manageable.

all the best!

Your theory on all makes sense. Some of it I had considered and some of it was a new thought. Thanks. The lack of a controlled study was one of the things I had not considered or the people who may have felt bad and given up early.

As far as the marijuana, that was my thought - that it worked only to make them, temporarily, feel better. Like taking an Advil for muscle or joint pain. In this case , the "joint" takes care of the pain.

Still good information and leaves one with thoughts to be considered. And the thoughts of my LLMD are ones you had mentioned before and we had discussed. You mentioned it even before he did.

It's all trial and error. Just have to get out of the error portion.

This data is interesting but take it for what it’s worth. Without any kind of control it’s the same as perusing thru this forum and forming a conclusion. As a matter of fact, an observation I’ve made in this forum is that a lot of us aren’t always consistent in treatment. I’ve read many times here, “x herb/antibiotic seemed to be working but I ran out and never refilled”. If that person were to state they didn’t achieve success using that treatment, would that be accurate data?

What I’m saying is, don’t let a negative aspect of this data get you down. It’s more of a poll than a study. Keep doing what you’re doing and beat this regardless of which direction you have chosen.