John Hopkins study response - acknowledges more than the cdc will

I recent applied for a Psilocybin study for PTLDS (I know PTLDS is bs) that John Hopkins is doing.

I’m not in the Baltimore area so I believe that’s the main reason I was denied. However in their email they listed a slew of resources they recommended I look into (a lot of us know about these already here). I was genuinely impressed and I thought it was a positive thing to highlight that major medical provider recognized modern info that the cdc refuses to acknowledge. Times are changing.

Resources sent included -

OnLyme - www.onlymesupportgroup.com
Generation Lyme - www.genlyme.org
Global Lyme Alliance - www.globallymealliance.org (Support groups are listed under the tab “patient support”)
For support groups on Facebook, you can look up:
Maryland Lyme Disease Support Group
Lyme Disease and Co-Infections
Lyme and Pregnancy
Rise Above Lyme- Support, Education & Advocacy
Lyme Disease Group
Auto Immune Diseases & Lyme Disease: The Truth & The Solution
Lyme Disease: Treating with Cannabis
Additional resources are available here:
www.ilads.org
www.lymedisease.org
www.globallymealliance.org
www.aldf.com
www.lymeconnection.org
www.idsociety.org
www.lymediseasesupportnetwork.org
And finally, here are some books that may be of interest:
Living Beyond Lyme by Joseph J. Trunzo
Lyme Rage by Mindy Haber
When Your Child Has Lyme Disease by Sandra K. Berenbaum
Bite Me by Aly Hilfiger
Unlocking Lyme by William Rawls
Bitten by Kris Newby
Lyme Brain by Nicola Mcfadzean Ducharme
Believe Me by Yolanda Hadid
Why Can’t I Get Better by Richard Horowitz
A Twist of Lyme by Andrea Caesar

Hopkins might be using "PTLDS" as a "tool / accepted term" for conventional healthcare to acknowledge their lyme studies.

They cant be complete outsiders if they want regular healthcare to take them seriously.

So probably a good move....for now.

some good work done at Johns Hopkins

this particular study bothers me a little

psilocybin is currently a hot topic in research for treatment resistant depression, OCD and PTSD

so i wonder what the researchers underlying premise is for this PTLDS study

are they trying to demonstrate that PTLDS is in fact a mental illness - because it responds to a treatment aimed at mal-adapted thought processes - or are they attempting to demonstrate direct antimicrobial effects of psilocybin and its analogues?

if the researchers are psychologists or psychiatrists or even neuroscientists i think that would shed some light on it.

Oh wait...

Is psilocybin the compound in “Magic mushrooms”?

I kind of read over that important part.

Garzie said...
some good work done at Johns Hopkins

this particular study bothers me a little

psilocybin is currently a hot topic in research for treatment resistant depression, OCD and PTSD

so i wonder what the researchers underlying premise is for this PTLDS study

are they trying to demonstrate that PTLDS is in fact a mental illness - because it responds to a treatment aimed at mal-adapted thought processes - or are they attempting to demonstrate direct antimicrobial effects of psilocybin and its analogues?

if the researchers are psychologists or psychiatrists or even neuroscientists i think that would shed some light on it.

It could be a way to be more at peace and have greater acceptance of your illness. Psychedelic research is, in my view, most known for it's past research that has made terminally ill cancer patients lose their fear of death.

I could've sworn just a couple months ago the group at John Hopkins that is studying Lyme came out with a newsletter that said the symptoms are real and not in people's heads.

I think becoming mentally at piece with one's illness can possibly lead to an improvement in physical symptoms since stress can exacerbate symptoms. However, assuming Lyme is a physiological disease, the therapy shouldn't cure symptomatic illness.

MargaritaLyme said...


What is intriguing is that medicinal mushrooms are apparently helping Lyme patients brains in a way that improves their lives. Very interesting indeed.

i haven't seen anything so far that indicates that it is helping Lyme patients - only the study where they say they aim to find out.

i am all for people using psychedelics if they help

and i do not doubt that some Lyme patients are effectively traumatised by their illness - my fiancé was

just a bit concerned that any findings of usefulness in Lyme by psychologists will lead to more muddying of the waters in terms of them branding the disease a mental health issue - not an infectious disease that needs effective antimicrobial treatments - and that urgent cause could be put back another 10 years

Post Edited (Garzie) : 8/13/2022 5:08:03 PM (GMT-7)

I totally see where you are coming from Garzie. Reading John Hopkin's Psychedelic website shows trials for psychological things like you would expect suspect like stopping smoking, anorexia, anxiety, depression, alcohol abuse. The one other trial they seem to be doing for a pysiological disease is Alzheimer's. That study seems to be focused on the depression aspect of Alzheimer's.

The PTLDS study states:

"Researchers at Johns Hopkins University are studying psilocybin – a psychoactive substance found in certain kinds of mushrooms – to see whether psilocybin is safe and helpful for improving fatigue, pain, mood, and quality of life in people with Post-treatment Lyme Disease."

That is a little bit concerning now that I see their other trials and that wording. Makes you wonder if they are getting at Post-Lyme being a mental illness. On the flip side, their research into PTLDS has been looking at biological markers. A little bit of mixed messaging to me. Def don't want to encourage the it's in your head narrative. Would researchers/doctors try to convince cancer patients that they can mentalize their way out of cancer? What about other infectious illnesses?

I see your worry and I think it's validated. Still, I'm interested to see the results of this trial.

MargaritaLyme said...
Actually, this sounds more like cognitive behavioral therapy with the help of this compound. I’m sure it is utilized throughout the U.S. just as other therapies with very little impact on how LD is labeled.

again I am not sure that is the case

almost every person i speak to in the UK - and many on this board have had conventional doctors tell them their disease is all in their head - or just not been believed about symptoms - or been told they were hysterical etc etc

so this already is a huge problem - and the more messages that go out that this disease could be a result of some kind of mental health issue - and the less it is treated as an infectious disease with far ranging consequences and symptoms (including mental health issues) - the more this is likely to happen.

its categorised as a class A drug in most countries so finding a legitimate source will be unlikely.

one of the large pharma companies is synthesizing it for the use in the various clinical trials taking place around the world - but its supply will be highly regulated - to the trial organisers only

depending on the country you live in there may be the option to collect psilocybin species in the wild - eg liberty caps - which would arguably be safer - as you could at least then know what you are getting
although most countries have recently past laws making this also illegal.

the other route is cultivation from spores - eg of psilocybe cubensis and similar variants
as far as i know selling of spores is not in itself illegal in most regions - as they contain no psilocybin - and so companies are set up that do this.
cultivation is still illegal of course.

There is some chatter on the subject on readit and quora. Sorry, I didn’t save the links.

This compound is studied/utilized to treat PTSD sufferers as well.