From Bedbound to Fit and Able in 14 Days: Effects of the Amazonian Medicine Kambo on a CFS Patient

[Biarritz13]

I don't have a background in science but can Opioid and Rituximab have something in common?


Endogenous opioid inhibition of proliferation of T and B cell subpopulations in response to immunization for experimental autoimmune encephalomyelitis.


Rituximab-induced T cell depletion in patients with rheumatoid arthritis: association with clinical response.

 

[Hip]

@Theodore
In general, I don't think you get quick responses when treating autoimmunity (except with steroids). So my guess is that because the benefits that kambo has on ME/CFS seem to kick in fast, kambo's mechanism of action is probably not related to autoimmunity.

Having said that, I found dermorphin temporarily substantially clear up a large patch of psoriasis within 24 hours, and psoriasis is an autoimmune disease. So who knows?



By the way the first study you cited refers to the opioid growth factor (OGF), and the opioid growth factor receptor. This is a different receptor to the mu-opioid receptor that dermorphin acts on.

LDN in fact has a number of effects, including acting on the OGF system, as well as the mu-opioid receptor.

 

[Little Bluestem]

I did not fancy making little burns of my skin in order to administer the kambo (this is the only safe mode of kambo administration), and I certainly did not fancy the extreme vomiting and diarrhea that kambo induces.

I believe he has taken it every week since 2012

 

[justy]

I have been offered Kambo treatments by a neighbour who is really into it. BUT quite honestly I don't think I am well enough to even consider this kind of experience. Others in the area who have tried the sessions at this persons house tell me that apart from the extreme purging from either end you also have a massive rise, then drop in blood pressure and you literally feel like you are going to die - not something I really want to mess around with.

 

[Biarritz13]

@Hip, I need to think about it...

@justy, why people in your area tried it by the way? Did it work the way they wanted?

 

[justy]

@Hip, I need to think about it...

@justy, why people in your area tried it by the way? Did it work the way they wanted?

Just the 'in thing' to try I guess... the person who has been hosting the sessions claims to feel better from various issues but doesn't seem any better to me. Others she says claim pain from arthritis disappeared etc. No one with M.E has had it here so far.

I am concerned that no one is being screened for serious health issues before they do this. even just Gallstones could be aggravated as the bile is forced through the system and out - they report lots of green vomit. If you had gallstones of any significant size, they could be pushed thpough the ducts and get stuck - you would soon be in ER.

Blood pressure rises and drops - risk of stroke and heart attack. I' m sure people do feel 'great' afterwards. Who doesn't after having a near death experience and surviving it!

 

[Wayne]

Nettle and bee venom share Formic Acid, Serotonin and Histamine. It may be this Formic Acid that gave you some benefits, what kind of benefits by the way?

HI @Theodore,

I've been really finding nettles to be a superb addition to my regimen. Here's a comment I found online by a man who I believe considers himself to be an herbalist (he's made some YouTube videos).

I like fresh nettle leaf/stem tincture for people stuck in sympathetic excess states - they're always on alert, and the sympathetic nervous system dominance has metabolic, immune and other more parasympathetic related functions inhibited. Anemone works in the moment like a charm, but nettle tincture long term does wonders.
​

It feels that this is what is happening for me. Drinking it helps me relax and significantly diminishes my sense of exhaustion and PEM, and improves my cognitive function. Adding it to coffee enemas seems to be doing something on an even deeper level. I've been discovering a number of things recently that have been helpful for me, and it's sometimes hard to know what effects are being caused by what.

But I can definitely say that I feel calmer and have better mental alertness since starting on the nettles. Both states seem to settle in when I drink the juice or the tea. Nettles is definitely a BIG factor for me at this time, but my best guess is it's probably not the Formic Acid that's giving me the most benefit. More than likely the serotonin and/or acetylcholine. Its chlorophyll and rich iron content seem to have improved the color in my face as well, possibly from blood improvements. Lots of articles online about what a great herb it is. In my mind, one that is ideally suited for pwME/CFS.​

 

[panckage]

For those interested Jox gave a bit of an update on kambo earlier this year:
http://kambo.me/smf/index.php?topic=493.0

 

[Infinite1]

I realize this is an older post. Just curious ran across this and found it very interesting.

@Hip- Do you have any more updates about your Dermorphin experiment?

Just a pet theory of mine that is far from fully developed..Perhaps there is a pathogen present in many of those with CFS that creates endotoxins that binds and antagonizes various receptors throughout the CNS. In lay terms, finding a compound with a higher receptor affinity may be able to dislodge the endotoxin from the respective receptor. Endotoxins are not so exotic, although traditionally they have been associated with gram negative bacteria there is some evidence that other forms of pathogens may create LPS like substances, or when lysed their protein fragments could act in similar fashion. In LD herxing often occurs during treatment and for some things may not get better for quite some time, perhaps this isn't solely a result of immune system activation but rather some 'mucking around' with various receptors. This is actually analogous to what shoemaker has proposed for thyroid hormone resistance by using supraphysiologic T3 to clear the receptors.

This could help explain why using something like Kambo or other natural substances may have higher efficacy for some compared to a pure compound which only hits a single receptor or sub-receptor- it's simply casting a larger net. Additionally there appears to be a incomplete or transient remission or an alleviation of symptoms, where inevitably after a refractory period one must once again continue "therapy". If the underlying pathogen has not been addressed then this dynamic is exactly what you would expect- as receptors would be cleared and subsequently re-antagonized.

Lastly, it is of no surprise that the opioid system is a primary target of interest for this. Those with CRS related pathology often experience profound systemic pain and diminished salience of natural rewards, resulting in ahedonia, depersonalization, depression etc. Having opioid receptors effectively decommissioned or compromised to any degree would certainly have widespread effects down the entire reward cascade.

I think there is a way to address this and induce sensitization within the reward system to pull it back "online". However, as mentioned, until the underlying cause of the perturbation is addressed this is all just a band aid type fix.

 

[Infinite1]

Anecdotally I should mention that when suffering from a wrist injury awhile back I was prescribed hydrocodone I also experienced a similar reprieve from my symptoms beyond just the period when I was taking the medicine. Essentially the same benefits you mentioned, greater self awareness, reduction of anxiety and depression, almost complete resolution in CNS/brain inflammation sensations, more personable, goal-oriented mentality was back online etc. Hydrocodone is primarily a mu receptor agonist, but also hits delta and kappa receptors. Obviously I will research this a bit more before jumping into something like this, however clearly this may be a viable route of attack.

Just for everyone's reference I've been diagnosed with Lyme, Babesia Duncani, EBV, and Mycoplasma Pneumonia for the better half of a decade. So my experience may not necessarily be truly or solely CFS based.

 

[Paralee]

@Infinite1 et at, I have heard feeling better from hydrocodone on this forum often enough it makes me wonder if methadone would help CFS/ME sufferers.
I know there's a lot of members that don't believe in drugs as a route of improvement, but I'm having a hard time with what I have, I can't imagine being down and out for years and years knowing I had this.

I'm sure I'm wrong somewhere in my analogy but that doesn't let the fact that there is something to this going into the night without closer examination, FWIW.

I'm probably the last one that should be talking, though, I don't seem to have problems with addictions, for some reason. Methadone, I hear, is very addictive.

 

[Hip]

@Hip- Do you have any more updates about your Dermorphin experiment?

Unfortunately not. As mention in the first post, one single 100 mcg dermorphin dose significantly improved my brain fog, sound sensitivity, generalized anxiety disorder, brain inflammation feeling, sinusitis, and cold hands and feet, and these benefits lasted for 3 days (even though dermorphin's plasma half life is incredibly short: around 80 seconds).

However, on the 4th day, the very unpleasant symptoms of severe emotional flatness and some mild psychosis appeared, and lasted for one day. By the 5th day I was back to normal (both the good and bad effects of dermorphin disappeared by the 5th day).

It is these unpleasant symptoms that made me stop pursuing further experiments with dermorphin. Unfortunately I suffer from significant emotional flatness (aka: blunted affect) and anhedonia anyway (and in the past suffered from some mild anxiety psychosis), so I am prone to these symptoms. However, for ME/CFS patients who are not prone to such symptoms, dermorphin or other opioids might be a viable experimental treatment. If I ever manage to fix my emotional flatness and anhedonia, I may try some further dermorphin experiments.


But I should say that scientifically my experiment was a success, in that it indicates that dermorphin can significantly improve ME/CFS symptoms, and demonstrates that dermorphin is likely the main component in kambo responsible for the huge improvements in Jox's ME/CFS (kambo transformed Jox from a severe bedbound ME/CFS patient, to someone with just mild ME/CFS).

Just a pet theory of mine that is far from fully developed..Perhaps there is a pathogen present in many of those with CFS that creates endotoxins that binds and antagonizes various receptors throughout the CNS. In lay terms, finding a compound with a higher receptor affinity may be able to dislodge the endotoxin from the respective receptor.

Very interesting idea.

The idea of a compound with higher receptor affinity dislodging some gunk from the receptors sort of makes sense. Though in a quick Google search, I could not find any endotoxin or other toxins that bind to opioid receptors.

However, if you look at this table of autoantibodies that have been detected in ME/CFS, you see that mu-opioid receptor autoantibodies are found in 15% ME/CFS patients (and as the table shows, many other types of receptor are also targeted by autoantibodies in ME/CFS). So it could well be that through autoimmune attack, some ME/CFS patients have autoantibodies stuck onto their mu-opioid receptors.

The anti-autoimmunity drug rituximab seems to be completely curing one third of ME/CFS patients who are treated with it, so this is very good evidence of ME/CFS being an autoimmune disease, at least for a subset of patients.

 

[Research 1st]

I am surprised at the positive interest in this peculiar story that appears nothing more than demonstrating the placebo effect, however, people are desperate and will try anything other people claim makes them better. So lets see if the likelihood of this 'bedridden to fit and able' recovery is genuine and even relevant to people with organic CFS.

What we appear to have:

1) A story written on text on a screen. So entirely unsubstantiated. The patient may not even exist and if they do, they remain a username on an Internet forum. So that's a non starter then for legitimacy. If someone was 'cured' they would go to the TV networks and newspapers, after all, they are now healthy are nothing affects their health.

Lets be kind and pretend this person is real. OK, they are real. Next point of investigation for legitimacy

2) So we have a genuine person, diagnosed without a test (to know why they are sick) - so any reason including psychiatric remains, until a test for 'CFS' is developed: statistically, the outcome of any claim for any treatment is all over the place including pharmaceutical grade drugs. This is the curse of CFS, but doesn't make the problem go away unless objective changes are observed. They haven't been, it is a claim of feeling better with no evidence, in a diagnosis where nothing needs to be proven wrong in the first place.

3) I can also recover in 14 days with HIV drugs if I chose to believe I have a retrovirus, but it doesn't mean I have/had one or that the class of drugs have any effect. The same goes for romancing a frog's DNA. To prove my belief I need to prove I have a new infection, prove I have a negative effect from this (known inflammatory markers), prove these markers diminish by taking the drug, and reproduce this effect in others, in many countries.
None of this was done by the mysterious username of ''Jox''.

I also note, unlike CBT or GET, by complete fluke, the substance ingested by ''Jox'' just happens to have been barely studied, making the credibility of the story to the gullible, more robust (if you exclude science).

Conclusion:

From the weak, non science based assumptions of a 'claim' some people blindly now believe this means CFS (any reason for unexplained tiredness) is now legitimately associated to this substance. People can believe what they want and should be allowed to be as long as it doesn't harm people. Here is my issue, I worry about people getting access to this wonder drug of nature and eating it.

The problem here as CFS patients are often hyper sensitive or even allergic to many things we don't know if the substance is safe, or if the story has negative psychological effects should it turn out to be bunkum. We also don't know if the 'experiment' ever took place, or if the person ever existed, of if their interpretation of 'CFS' is the same as ours. (Many claim to have CFS who are clearly mentally ill). Ultimately, this is why we require science, or the claim remains null, be it an amazonian frog or a new Lyme disease busting antibiotic in a test tube.

That's why we should be vigilant, in my opinion at least, to make sure we aren't lead down paths that lead to worse illness, or considerable disappointment (stress) of a claim for therapy or treatment.

 

[Hip]

The patient may not even exist

Odd that you are questioning the existence of this person, especially as Jox can be contacted by PM, and you can talk with him by PM, as well as converse with him on the kambo.me forum. I did both, and I asked a lot of questions, in order to verify his story. When people post on the PR forum, do you also question their existence?

This is the curse of CFS, but doesn't make the problem go away unless objective changes are observed. They haven't been, it is a claim of feeling better with no evidence, in a diagnosis where nothing needs to be proven wrong in the first place.

If you read Jox's account, you see that objective changes were observed: Jox had previously been bedbound with ME/CFS, and after the kambo treatment, was able to go on a motorcycle vacation. That is an objective observation of a huge increase in physical ability. Jox also lists several other objective physical changes in his symptoms, detailed in this post.


Note also that it is not just Jox who has experienced benefits from kambo: if you read this post earlier in the thread, you see that several ME/CFS patients appear to benefit from kambo, according to an experienced kambo practitioner named Galega who I communicated with on the kambo.me forum (on the threads and via PM).

And these practitioners who offer kambo treatment say that:

current uses of Kambo are: depression, Chronic Fatigue Syndrome, candida, migraine, allergy, AIDS, diabetes, cancer, Parkinsons, rheumatism, addictions, detox and many others.

And of course I also observed clearcut improvements in my brain fog and other ME/CFS symptoms after taking dermorphin, one of the active ingredients of kambo.


Nobody is suggesting that this use of kambo to treat ME/CFS is established science, nor that kambo is safe. Rather, is an area for possible exploration, and something that may throw some light on the biochemistry of ME/CFS.

 

[Infinite1]

@Paralee - Just to be clear I don't believe this is going to be as simple as popping some pain killers from time to time, although I could be wrong. No doubt this will need to be approached with caution even for those without a proclivity to addiction I'm sure it could be a slippery slope. Luckily like you I've also never had any issues, so I am more confident about experimentation than many others, I think.

The intent for this type of "therapy" would be two fold. First we've covered to some degree, namely, to "clear the gunk" out of the receptors. As Hip mentions we would expect to have documented somewhere that a type of endotoxin does exist that would potentially bind to this receptor, perhaps there is not one that exists that has preferential binding but rather some affinity. In order to have any legitimate scientific methodology we would need to know what we're working with, so I suppose this this post is more a form of mental masturbation- albeit still worth effort

OK, all jokes aside. For any semi/permanent resolution some physiologic changes would be needing to take place. Unfortunately using a potent opioid you would typically run into the tug-a-war with homeostatic driven reductions in post synaptic receptors respective to the drug ingested. However in a few select circumstances I think the opposite may be possible

1) The opioid drug induces an overall sensitization effect. Drug sensitization has always been an interesting phenomena as it somehow over rides the massive numbers of feedback/feedforward loops and redundancies that exist in the neural circuitry. Keep in mind that CFS is a maladaptive physiologic change in response to some form of stress that is maintained by virtue of the exact same feedback mechanisms that are intended to keep homeostasis...Unfortunately the mechanisms of sensitization are far from clear. My overall understanding is it is more likely to occur if:

a) a stronger dose is used without a ramp-up otherwise habituation may occur. Keep in mind this is a bit dangerous and I'm speaking more theoretically.
b) a varying schedule of administration is utilized, meaning not every day at 10AM you take the dose. Some days you would take it others not, any pattern in the timing would need to be minimized and co-varying dosage would be vital.
c) ideally the environment should be different for each dose, look up conditioned place preference. The perception of external environmental cues essentially primes the system and offsets the induced effect. This is the same mechanism that underlies tolerance and habituation
d) a compound is chosen that hits multiple receptors rather than one discrete sub/receptor. In particular I think we would need something that hits the delta receptor and not just mu. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3832215/

2) The hope is that the increase in tonic opioid levels would lead to a self sustained system. I could see this possible if the induced perturbation caused an ability to optimize external environmental rewards; e.g. beginning a workout regime, getting on top of finances, change in personal/relationship interaction/dynamics.

If you look up effort discounting this is what I'm speaking of; a reduction in behavior repertoire due to a loss of willingness to engage any any behavior that requires any form of significant effort because of the reduced ability to experience any form of reward in doing so. Each and every decision we've ever made has been a result of our internal evaluation of effort to payoff, whether it be intrinsic or extrinsic. It's essentially an algorithm that is calculated by neural constructs, weighted nodes, all determined by network communications. Unfortunately with CFS pain and fatigue tends to mask all else, which is essentially like being punished at all times, and in particular in those where effort has been put forth. As classical conditioning dictates soon you will no longer wish to perform that particular or even similar actions, not because of laziness, but because our bodies are hardwired physiologically to conserve resources in the absence of reward. This in my mind is precisely a state of learned helplessness.

In this case the hope would be a neural kindling type of effect would be elicited and reinforced by engaging in particularly rewarding interactions. Unfortunately you can't just sit on the couch and take a pain-killer otherwise you're rolling the dice which direction this goes..

 

[Paralee]

Thanks for your reply @Infinite1 , unfortunately Hubs has the TV blaring and I'm having a hard time staying in my skin. I'll have to re-read later, now where's I put the sticky tabs? It looks interesting but I'm going batso, you wouldn't believe this noise.

 

[Hip]

As classical conditioning dictates soon you will no longer wish to perform that particular or even similar actions, not because of laziness, but because our bodies are hardwired physiologically to conserve resources in the absence of reward. This in my mind is precisely a state of learned helplessness.

Myself I am not a big believer in the idea that ME/CFS and its comorbid illnesses involve a conditioning of the psyche, such as learned helplessness. This is because when you read the accounts of ME/CFS patients who are suddenly thrown into full remission (either through treatment or sometimes spontaneously), they never have any trouble with fully and immediately engaging with life. Rather the opposite in fact: they jump right back into life with gusto.

 

[roller]

aaahahahaha....
the logic behind the procedure is hilarious.
though, very good thinking

the trick is the burn.
and the location.

but its too little to help really.
except perhaps its done weekly, but the scars may be bad?

 

[Infinite1]

Myself I am not a big believer in the idea that ME/CFS and its comorbid illnesses involve a conditioning of the psyche, such as learned helplessness. This is because when you read the accounts of ME/CFS patients who are suddenly thrown into full remission (either through treatment or sometimes spontaneously), they never have any trouble with fully and immediately engaging with life. Rather the opposite in fact: they jump right back into life with gusto.

It's really not that black and white; it is something that resides within the psyche but also in the physiology. For all interactions within the environment there are paralleled dynamics occurring at the neural level. Everything that I was speaking to is on the subconscious level, thus it's not that there is a conscious choice taking place but rather there is a reduction in perceived behavioral actions/options that may exist at any given time. For example: After having previously burned myself touching a hot stove I would not consider stepping onto the stove to get my Cherrios in the top cabinet, even if I'm unsure whether the stove is on.

A resolution of the pathology would be like removing a road block and I would also expect a near spontaneous rebound in behavior as well. This is not something that is necessarily top-down driven.

Thanks for your insights in using the dermorphin, it seems for your particular physiology it may not be an optimal compound but was still a good proof of concept and something to build from.

 

[Infinite1]

aaahahahaha....
the logic behind the procedure is hilarious.
though, very good thinking

the trick is the burn.
and the location.

but its too little to help really.
except perhaps its done weekly, but the scars may be bad?

Yea, the logic is solid and scientifically validated but not overly realistic for most to employ.

I think you're right the "method of ingestion" of kambo itself would become a robust predictive cue of the cause-effect contingency...and in addition not something that many would be willing to perform.