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

Discussion in 'Alternative Therapies' started by Hip, Apr 27, 2013.

  1. Hip

    Hip Senior Member

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    A Medicine Called Kambo Transforms a Bedbound ME/CFS Patient to Reasonably Fit and Able in 2 Weeks

    I recently read some forums posts (see here and here) made by an individual named Jox who used the Amazonian Indian medicine kambo to successfully treat his severe chronic fatigue syndrome (ME/CFS). Jox was bedbound for often months at a time with the fatigue and malaise of ME/CFS, but astoundingly, within 2 weeks of taking kambo, he was back to near full health, and remains that way provided he takes kambo once a week.

    So kambo elicited a very significant remission from severe ME/CFS within just two weeks.

    I have corresponded with Jox, and I am certain his story is genuine. So I think Jox's discovery of the seemingly remarkable benefits of kambo for ME/CFS is certainly something that needs to be further examined.

    Kambo comprises the waxy secretions of the giant leaf frog (Phyllomedusa bicolor) found in the Amazon. This kambo medicine is usually administered by putting a dab of these secretions onto small circular burns made on your skin. The burns are created using a bit of smoldering wood; you then put the kambo directly on the fresh burns, where it is absorbed into the bloodstream. These burns are not really painful, and if done properly, only affect the top layer of skin; but they leave tiny scars that take 6 months or more to disappear. You can see what the skin scars look like here.

    Kambo can be bought online. It is sold in the form of "kambo sticks", which are flat, thin slithers of wood about 10 cm long and 1 cm wide onto which the frog's waxy secretions are collected. The dried waxy secretions on the kambo stick look like a very thick layer of vanish painted the wood. One kambo stick lasts a long time: it provides for around 20 kambo trips.

    Phyllomedusa bicolor.jpg . . . Dried frog secretions on a kambo stick.jpg
    The giant leaf frog (left), and the dried secretions collected from the frog on a kambo stick (right)

    Stomach acids disable the delicate active compounds in the kambo medicine, so you cannot take kambo orally. Sublingually does not work either. Kambo can be taken intranasally, but there are reasons why intranasal administration is not generally recommended (the Amazonian Indians have observed that intranasal kambo can sometimes precipitate a disease, whereas the burn method of administration they say is safe). The Indians also point out that the incorrect administration of kambo has occasionally led to deaths.

    Taking kambo is not for the fainthearted, because minutes after administering kambo, you start violently and profusely purging from both ends (vomiting and diarrhea at the same time) until there nothing left to purge, and even then, you still purge some. Plus your heartbeat races extremely high during this period, and your throat swells, and blood flushes to your skin so you look bright red. It is an extremely intense physical experience. During their first kambo trip, people may ask themselves "am I going to die?" Though aficionados consider the purging to be a purifying and healing process for the body. No mental or psychedelic effects occur with kambo; your state of mind remains unaffected. The whole kambo experience is over quickly: the most intense period lasts for only around 15 minutes or so, and by 30 minutes you are completely back to normal. After a kambo trip, people often report increased vigor, a sharpening of vision, relief from pain, and a reduction of any disease symptoms they may have.

    Jox found that it took two weeks on kambo (taking one kambo dose per week) before he was transformed from a bedbound state into being fit and able (fit and able enough to take a motorcycle vacation in Mexico).

    You can buy kambo sticks here and here. Though I suggest that you fully research kambo, and very carefully consider any risks that taking such a potent substance might pose, before you embark on any experiments. There have been a small number of deaths associated with kambo use, so anyone considering taking kambo is to an extent entering uncharted territory. Given the weak constitution of many ME/CFS patients, it may be inadvisable to take kambo. Note that a kambo trip should only be undertaken on an empty stomach.


    Taking Dermorphin Instead of Kambo

    I myself am apprehensive about the idea of taking kambo, and of going through this period of 15 minutes of intense vomiting and diarrhea (though Jox tells me that this really is no big deal, and Jox has taken kambo every week for a year now). Plus I don't like the idea of making little burns on my skin whose scars will remain for 6 months, particularly as Jox discovered that you must repeat the kambo dose roughly once a week (so that's a lot of scars), in order to keep the ME/CFS symptoms at bay.

    So my idea was to look at the active constituent compounds in kambo, figure out which of these compounds are responsible for the curative effects of kambo on ME/CFS, and then take the pure compounds instead. I hoped that a single compound might be providing the curative effects, and that this single compound on its own would be easier to administer, and would not induce purging.

    Kambo contains a number of active compounds (which are all peptides):

    Dermorphin — a potent mu-opioid receptor agonist.
    Deltorphin — a very potent delta-opioid receptor agonist.
    Phyllomedusin — a tachykinin which affects the salivary glands, tear ducts, intestines, and bowels; it contracts the smooth muscles, and contributes to violent purging.
    Phyllokinin (and phyllomedusin) — potent blood vessel dilators that also increase the permeability of the blood-brain barrier.
    Phyllocaerulein — which stimulates the adrenal cortex and the pituitary gland, causes a fall in blood pressure, causes tachycardia, and has a potent action on the gastrointestinal smooth muscle, and stimulates gastric, biliary and pancreatic secretions.
    Sauvagine — which stimulates the adrenal cortex, causes a long lasting fall in blood pressure, and causes intense tachycardia.
    Adenoregulin — acts on the adenosine receptors.
    Dermaseptin — a potent antimicrobial for both Gram-positive and Gram-negative bacteria, and antiviral for herpes simplex virus.

    My hunch was that the mu-opioid receptor agonist dermorphin in kambo may be playing a large part in this apparently effective kambo treatment for ME/CFS. So I decided to experiment with taking some pure dermorphin on its own.

    What now follows are the details of my experience and methodology in taking pure pharmaceutical grade dermorphin as an experimental treatment for my ME/CFS. This experimental treatment gave very promising results.


    My Dermorphin Experience

    I began by taking a single 100 microgram (mcg) dose of of dermorphin intranasally.

    As Jox found that a once weekly dose of kambo worked well to treat his ME/CFS symptoms, likewise, my expectation was that a once weekly dose of dermorphin would work in a similar manner. So I took this single dose of dermorphin, and then in the subsequent days, I was expecting improvements in my ME/CFS symptoms to manifest as a result.

    Interestingly, there were virtually no physical or mental effects whatsoever arising in the period immediately following this 100 mcg dose of intranasal dermorphin (unlike kambo, which induces profuse vomiting, diarrhea and significant tachycardia minutes after taking it).

    However, very noticeable beneficial effects did appear by the next day, and in the 3 days that followed this single dermorphin dose. These effects were as follows.


    Effects of Dermorphin on my ME/CFS Symptoms

    Positive Effects from taking dermorphin:

    • My chronic inflammatory sinusitis disappeared.
    • The constant sense of inflammation in my brain and head disappeared.
    • Chronic fatigue syndrome symptoms such as the brain fog (mental confusion), sensory hypersensitivity (the horrible autism-like over-sensitivity to sounds, light, etc) were noticeably improved.
    • My energy levels increased, but this was just a mild increase.
    • My generalized anxiety disorder (GAD) symptoms disappeared (I have GAD as a comorbid condition with my chronic fatigue syndrome).
    • A large patch of psoriasis I had on my leg for years substantially cleared up around 24 hours after taking the dermorphin, which was quite remarkable.
    • After taking dermorphin my constantly cold hands and feet (bad blood circulation and vasoconstriction) became warm. So dermorphin seemed to temporarily improve my blood circulation, though this only lasted a day or so.

    Negative effects from taking dermorphin:

    • In the 3 days that followed my single dermorphin dose, I felt emotionally and intellectually a little flat, especially the first day after taking dermorphin, but this mental flatness slowly wore off as the days went by.
    • Some mild insomnia.

    So for the first three days after taking this single 100 microgram dose of dermorphin, things were going quite well, and many of ME/CFS symptoms were noticeably improved. The only real downside was the emotional and intellectual flatness.

    However, on the forth day after taking dermorphin things turned bad, as I developed a state of mild psychosis, with severe emotional flatness, which was very disorienting. I have experienced days with mild psychosis symptoms before (I have anxiety disorder, and mild anxiety psychosis is not uncommon in people with anxiety disorder). However, I had not had an anxiety psychosis attack for a long time, and dermorphin seemed to bring this anxiety psychosis back.

    On the fifth day after taking dermorphin, most of these mild psychosis effects disappeared, and I was back to normal. But the good effects of dermorphin on my ME/CFS also wore off by the fifth day, so it was back to square one at that point.

    So the effects, both good and bad, of a single 100 mcg intranasal dose of dermorphin seem to last for around 4 days.

    The unpleasant anxiety psychosis experience on the forth day was off-putting, and the general emotional flatness symptoms of dermorphin were not so nice. Though I think this bad experience may just be something particular to me, as I have had some mild psychosis symptoms before, due to my anxiety disorder, and I also suffer from a bit of anhedonia and emotional flatness in general. So these negative effects of dermorphin probably will not manifest in other people; they are probably just peculiar to me. Nevertheless, I have halted my dermorphin experiments for the moment.

    All in all, it seems that pure dermorphin may be a viable means of treating chronic fatigue syndrome.

    I am not sure how dermorphin compares to kambo in terms of effectiveness as a ME/CFS treatment, because I have not tried kambo as yet.

    Though dermorphin certainly has the advantage of being much easier to administer than kambo: you can easily snort dermorphin, thus no skin burns are required; there is no nasal irritation at all during or after snorting dermorphin; and there are no adverse physical or mental effects at all when you take dermorphin — you don't really feel anything when you take a dose of 100 mcg of dermorphin (the beneficial effects of dermorphin on ME/CFS only appear on the next and subsequent days).


    Important Note

    Note that dermorphin can cause fatal overdoses in microgram amounts, so you need to know exactly what you are doing before experimenting with pure dermorphin, and you need to be able to measure out tiny microgram doses very accurately, else you may accidentally kill yourself through overdosing.

    Intranasal doses of around 500 mcg dermorphin have been used recreationally (see the "trip reports" here and here), and these higher dose levels apparently do have psychoactive effects. Intranasal doses above 1000 mcg will likely prove fatal (remember, dermorphin is an opioid like morphine and heroin, and the lethal dose is not that much higher than the therapeutic dose). If administering dermorphin by injection, this drug becomes more potent still, and the lethal dose will be even smaller.

    Note also that dermorphin is a compound untested and unlicensed for human use. Chemical laboratories that sell dermorphin do so on the understanding that it is not to be used for human consumption or for human research. Thus the details given here are for information purposes only, and I do not advise anyone to take dermorphin.

    Having said that, several human studies with dermorphin have been performed (see here), and of course dermorphin is contained within the kambo Amazonian medicine.


    Preparing Dermorphin for Intranasal Administration

    I took dermorphin by snorting 100 micrograms of it intranasally. Full details of how I was able to measure out and snort this precise and tiny amount are as follows.

    I bought 5000 micrograms (mcg) of dermorphin powder from a chemical supplier (cost was $200). 5000 micrograms is about the weight of 50 tiny grains of sugar.

    To prepare this dermorphin for taking intranasally, what I did was mix my 5000 micrograms of dermorphin powder with a second inert powder, in a ratio of 250:1, so that each 25 mg of my powder mixture will contain 100 mcg of dermorphin. This then makes it easier to weigh out doses for snorting. For the inert powder, I used inositol powder (a B vitamin), as in my tests, I found inositol could be snorted without any irritation to the nose.

    Because dermorphin is a opioid like morphine, it is easy to overdose on dermorphin and kill yourself if you take the wrong amount. As little as 1000 mcg taken intranasally may kill you.

    Thus I was concerned that if my mixture of dermorphin powder plus the inert powder (inositol) was not very well mixed, I might run the risk of snorting up an overdose of dermorphin, as a result of having a non-uniform mixture. I took this possibility seriously, and came up with the following system to mix the powers very thoroughly:

    I placed my 5000 mcg of dermorphin powder, and 1245 mg of inositol powder, as two separate piles on the surface of a flat mirror. Then, to the dermorphin pile, I added 16 pipette drops of distilled water (about 1 ml of water), which turned my little pile of dermorphin powder into a tiny puddle of water on surface of the mirror. Dermorphin is highly soluble in water, and dissolved into these drops of distilled water immediately. I gave the water in this tiny puddle a good stir anyway, to make sure the dermorphin was fully dissolved in it.

    I then pushed the adjacent pile of inositol powder into this tiny puddle of water + dermorphin, using a Stanley blade. There was just enough water to soak into the inositol powder and turn the pile of inositol powder into a damp sludge. I thoroughly mixed this damp inositol powder sludge, so that the inositol powder was evenly damp. This ensured that the dermorphin dissolved in the water was evenly soaked into the inositol powder.

    Then, using the Stanley blade, I spread the damp inositol powder sludge very thinly over a large area (say 20 cm by 20 cm) of the mirror surface. I placed a weak fan next to the mirror to blow a very gentle breeze over this area of damp powder, in order to dry it.

    After an hour or two, the powder seemed completely dry, and I used the Stanley blade to gather up this power into a pile. Just to be doubly safe, I mixed this pile of dry powder for while, using the Stanley blade.

    So now I had 1250 mg of a perfectly mixed inositol + dermorphin powder combination. I placed this powder mixture in a small container for storage.

    To administer dermorphin to myself intranasally, I just weighted out 25 mg of this powder mixture (I have a digital scales that measures down to 1 mg), and snorted it up the powder using a wide drinking straw. This 25 mg of powder mixture gives me a dose of 100 mcg of dermorphin.


    Speculation on the Mechanism of Action of Dermorphin as a ME/CFS Treatment

    Dermorphin's half life is extremely short: 1.3 minutes (ref: 1), so this drug will be pretty much completely out of your system 15 minutes after administering it. Yet from my observations it was clear that dermorphin created some potent, unequivocal effects that lasted up to 4 days after taking it. So somehow dermorphin is precipitating some long-term actions in the body, even though dermorphin completely leaves the body within 15 minutes.

    One speculative explanation I have for the long-term action of dermorphin in the body is based on the fact that opioids modulate NMDA receptor-mediated neurotransmission: this study indicates that morphine alters NMDA receptor-mediated neurotransmission in the nucleus accumbens, and these effects persist one week after morphine withdrawal. So morphine can create NMDA receptor effects in the brain that persist many days after the drug has left the body.

    Note that chronic NMDA receptor overstimulation is thought to play a role in chronic fatigue syndrome; thus the fact that opioids drugs exhibit NMDA receptor effects may help explain why these drugs benefit ME/CFS.

    Indeed, many ME/CFS patients have observed that mu-opioid pain relieving drugs such as oxycodone and hydrocodone noticeably reduce their neurological ME/CFS symptoms (see here); so this beneficial effect is not unique to dermorphin, and this means that some of the benefits of dermorphin / kambo might conceivably be obtained by taking other opioids such as oxycodone, hydrocodone or morphine.
    Last edited: Dec 14, 2013
    Nielk, cigana, Beyond and 10 others like this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hip

    Do we have a bravery award here? You certainly deserve it. Amazing story.

    So, it sounds like this would have to be an ongoing therapy, perhaps not correcting an underlying problem but mediating it?

    Are you going to continue with this? Do you know any researchers who might be interested in conferring with you and brain-storming? (Though brain storming is not a particularly attractive image for us!)

    Best,
    Sushi
  3. Hip

    Hip Senior Member

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    Hi Sushi

    As I have not yet mustered up the courage to take a full dose of kambo itself, with all the gut wrenching purging/purifying that this medicine entails, perhaps I don't yet deserve the bravery award for the moment!

    Yes, kambo does need to be an ongoing therapy: it seems you need to take kambo roughly once every 7 days in order to maintain the remission from ME/CFS. This is what Jox told me. If you stop taking kambo, he found that the ME/CFS symptoms start to return.

    It would not be so bad if kambo were a simple pill you could take once a week, but the fact that kambo induces all this vomiting for a full 15 minutes, and the fact that kambo needs to be applied via the burn method, makes this potent jungle elixir one medicine that you have to sum up courage to take.

    Having said that, instead of spending his life as a ME/CFS patient bedbound for several months a year, Jox is now able to live a near normal life, and has close to full remission from ME/CFS. So is this 15 minutes of purging your guts per week a price worth paying for your life back? That is perhaps the question here.

    I am going to continue with my dermorphin experiments, but I will give myself a break from it for few weeks.

    What I am really hoping is that dermorphin will be just as good as kambo, because dermorphin is very easy to take, with no ill effects at all at the time when you administer it.

    I certainly think that Jox's result, if replicated by myself and other ME/CFS patients, would be of great interest to some researchers. If I do manage to replicate Jox's ME/CFS remission with dermorphin (or with kambo, if I muster up the courage to take it), I will definitely write to some of the leading ME/CFS researchers.
    Tristen likes this.
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hip

    Could there be a way of "dosing" kambo to reduce the dramatic, unpleasant (and perhaps dangerous) immediate responses? Did Jox experiment with this?

    And maybe you could achieve the same thing as burning by scraping off a bit of skin?

    Sushi
  5. Jarod

    Jarod Senior Member

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    Amazingly detailed and well thought out post.

    There is a youtube video I saw of some guy finding a rare green frog in the amazon then scraping the secretions off of it to place in a burn just the way you described. However, he was doing it for an altered mental state.

    I'm not endorsing this frog treatment :(, just putting it up for information sake.

    edit: around 25 minutes the video details on how to "string up the frog" and "scrape it skin secretions". Part 3 of 3 shows putting the jelly in the skin burns and some of the effects. Think it might be the same frog according to whacky-pedia.



    Hip likes this.
  6. Jarod

    Jarod Senior Member

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    Another random video that claims frog secretions an treat bacterial infections.

  7. maryb

    maryb iherb code TAK122

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    Hip can I echo Sushi's post in saying what an amazing story. Your fantastic research and so well detailed.
    It would be great if you could find a way to administer the kambo without the burn. That also is the bit that would put me off - vomitting etc I could cope with once a week definitely, to lose these symptoms would be awsome progress.
  8. Wayne

    Wayne Senior Member

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    Hi Hip, thank you for your remarkable post. I have to say, with my brain fog, I would have to summon up a lot courage to try to mix the right amount of dermorphin, especially since the therapeutic dose is so close to the apparently fatal dose. Yikes!

    Your reference to Kambo's active compounds being peptides reminded me of a woman on the ProHealth board who posts often (I just noticed over 28,000 times!). She's apparently made substantial improvements in her health on a number of fronts by using what she refers to as "peptides". She's made many posts in the past year on her peptides experiences, with the following (quote below) being her latest. If I had the money, this would probably be one of my own top priorities to pursue.
  9. Enid

    Enid Senior Member

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    Strikes me this may be kill or cure, but generally reflects a total lack of of understanding of the basic chemistry the apparent "civilised" world fail yet to grasp.
  10. maryb

    maryb iherb code TAK122

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    Wayne I presume she means Oxford USA? would you know? looks like she is from the US.
    Never heard of anything remotely like this coming from the UK but if it, is well I never:)
  11. Dreambirdie

    Dreambirdie work in progress

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    Wow Hip! You certainly have cojones, to dive in and experiment with something like this. :aghhh:

    Fascinating research and self-experimentation. Good to see there were some significant benefits to be had. Feeling intellectually flat seems manageable as a negative side effect, but the "mild psychosis" symptoms do not sound like fun. I personally wouldn't feel comfortable with the possibility of mild psychosis. o_O.... OR the potential for a possible fatal overdose, in the event of getting a microgram or two too much of the dermorphin. YIKES!

    I will be curious to see how this all pans out in the long run. I am sure you will keep us posted.

    GOOD LUCK with it all.
  12. Hip

    Hip Senior Member

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    Yes, those were my thoughts also, Sushi. I thought that smaller daily doses of kambo, at a fraction of the full kambo dose that Jox takes weekly, might be below the threshold for precipitating vomiting and the other strong effects, yet still provide the therapeutic benefits of kambo.

    I have actually performed some initial experiments in taking small daily doses of kambo by snorting it intranasally. To snort kambo, I just scrapped off some the dried kambo from my kambo stick using a sharp knife, ground this to a fine powder using a mortar and pestle, accurately weighed 1 mg of this kambo powder, and then snorted it into my nose.

    I had been informed that snorting 15 to 20 mg of kambo powder would produce a full kambo trip, and I was aiming for a kambo dose that was well below the full trip, so this is why I opted for a 1 mg dose. It is very important to weigh kambo accurately if you are snorting it, because you could overdose if you snort too much kambo. (You don't need to weigh your kambo at all if you use the burn method of administration, because the burn automatically limits the kambo dosage).

    Within a minute or two of snorting this 1 mg of kambo powder into my nose, my heart rate shot up, with my heart pounding rapidly and strongly in my chest, and my face went absolutely bright red as the blood flushed to my skin (the red flushing of the skin produced by kambo looks very similar to a niacin flush).

    However, at this low 1 mg dose of intranasal kambo, I felt only the very slightest sense of nausea, and I had only a very slight rumbling and movement in my bowels. But I was nowhere near vomiting, nor needing to defecate, both of which normally happen on a full dose of kambo. I experienced no dizziness either, nor any face or throat swelling, which again both normally occur in a full kambo trip.

    The effects of snorting 1 mg of kambo lasted for less than 5 minutes, before my flushed skin and my raised heart rate went back to normal. All in all, it was an extremely mild experience, and it evoked no fear or apprehension at all. Anyone could do this very light dose of kambo.

    More details of my experiments with taking kambo intranasally can he found on my thread on the kambo.me forum.


    Following my snorting 1 mg of kambo, no ill effects were experienced, except that the mucous membranes in my nose felt slightly sore for several hours, but this slight soreness is apparently normal, as kambo does irritate the mucous membranes. My nose was fine by the next day. I did not notice any improvements in my ME/CFS symptoms the next day, but I expect that with such small doses of kambo, you'd only notice improvements after taking many of these small doses on a daily basis.

    Potentially, such daily intranasal administrations of low dose kambo could be an effective way of taking kambo. It would certainly be interesting to see if, after a few weeks of low dose daily kambo, you would experience the same significant remission from ME/CFS as Jox obtained by taking the full kambo dose once every week.

    One safety concern with this intranasal administration is that the Amazonian Indians have found that individuals who snort kambo regularly can sometime acquire a disease which the Indians call the "frog's disease", and which they say is difficult to cure. However, the Indians say that the burn method of kambo administration is always safe.

    I have not been able to get any more details about the "frog's disease", but my hunch is that this disease is some type of infection picked up from the frog secretions. I would think that the skin of this giant tree frog must harbor some bacteria and other microbes, and that occasionally, this might cause an infection. One way round this problem might be to simply sterilize the kambo before intranasal use. (EDIT: I have now learnt that this frog's disease does indeed appear to be microbial disease: see the end of this post for details).

    Of course, the other approach is to snort pure sterile pharmaceutical grade versions of the compounds found in kambo, like my experiments in snorting pure dermorphin, which I presume carry no risk of the "frog's disease", and also avoid the purging (the vomiting and diarrhea) problems. I suspect it is mainly the phyllomedusin and phyllocaerulein compounds within kambo that cause the the violent purging, and thus when you take pure dermorphin alone, you don't experience any purging.


    A potential issue with daily kambo administration is that because kambo contains two potent opioids, dermorphin and deltorphin, and because the brain very rapidly habituates to opioids (tolerance build-up), this means these two opioids can quickly lose their therapeutic effect if you use kambo too frequently, and don't take a break from kambo (just like heroin addicts habituate to heroin if they take this drug too frequently, and then heroin loses its effects).

    In fact, the Amazonian Indians are well aware that kambo loses its effect if taken too frequently, and they point out that kambo should not be used too often. So although these indigenous peoples have no training in neuroscience or biochemistry, they are intuitively aware of the opioid tolerance build-up that can occur with too much kambo use, which temporarily renders kambo ineffective.

    Whether you would get this opioid tolerance build-up when taking daily kambo doses, I don't know. It's certainly possible. However, perhaps with sufficiently low daily doses of kambo, such small amounts may circumvent any significant opioid tolerance build up.

    I read on one website (but could not confirm scientifically) that it is actually the inflammatory processes in the burn wound that draw the active compounds in kambo into the blood stream. So one idea I had was to use some sort of skin irritating chemical to elicit the same inflammatory response on the skin, which might then also draw in the kambo. Though at the moment I cannot think of any suitable chemical that might inflame the skin like a burn, but without causing any lasting damage or scar.

    I agree, Maryb, the burning definitely puts me off too, more than the vomiting does. The burn itself is apparently fairly painless — you just use the hot ash at the end of a thin stick of smoldering wood to create the burn (and the diameter of the burn only needs to be 2 or 3 mm) — but I just don't like the idea of these scars that last for 6 months.
    Last edited: Dec 14, 2013
  13. Hip

    Hip Senior Member

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    Yes, it is a bit disconcerting using substances like dermorphin which can be fatal in microgram doses. I was always worried that my brain fog would lead me to make a mistake in my calculations or in my weighing out of this substance. Suffice to say, I took things very slowly and carefully, and quadruple checked all the steps I took, and always started with very, very low doses just as an initial tentative test.

    Interesting story, but I am not sure why she does not specify what she is taking. Millions of substances are classed as peptides. Many human hormones are also peptides. Perhaps she is taking some type of human growth hormone peptide? It would be interesting to know.

    Thank you Dreambirdie. Will definitely keep everyone posted.

    Yes, the mild psychosis was yuck, and I want to figure out a way of preventing this occurring. I think this mild psychosis was probably an idiosyncratic response that may not arise in other ME/CFS patients, but its occurrence in me has placed an obstacle in my path.
  14. Wayne

    Wayne Senior Member

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    Just to let you know, Mikie has posted VERY extensively on her peptides injections on the ProHealth Message Board over the past 1 1/2 years or so, and has given a fair amount of details. As I remember, some of this is proprietary information, so she doesn't know herself some of the specifics. --- Here's a link to some SEARCH Results. Her first post on this is at the top of the search results, dated December 13, 2011.

    maryb - I'm almost certain she's referring to Oxford, England. I think there may be a bit of controversy around it. As I recall, the practitioners who are getting remarkable results using peptide injections are trying to patent some of their work, and certain "forces" are trying to prevent this from happening. Perhaps it's the same age old problem of mainstream medicine trying to protect their turf from effective lower cost alternatives, but I can't say for sure. Whatever the reason, it's apparently not becoming as widespread or as well-known as its proponents would like. Wouldn't it be a great experiment to have a 100 or so pwCFS try it?
  15. Hip

    Hip Senior Member

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    Do these peptide injections have a trade or brand name, Wayne, even if their content is a proprietary trade secret?
  16. SickOfSickness

    SickOfSickness Senior Member

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    I wonder if she knows or posted. From a quick google, she gave her doc name and also said:

    "Peptide injections come from a lab in Europe which works in conjunction with Oxford University. These injections have been used in Europe for 35 years with excellent results and virtually no side effects. They are not FDA approved here in the U.S."

    "Evidently there are some other types of peptides being used but are different from what I am getting."

    "Last count, there were only about 25 docs doing this in the US."
  17. Wayne

    Wayne Senior Member

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    I edited my above post to included the following, but thought I'd repost it:

    Here's a link to some SEARCH Results. Her first post on this is at the top of the search results, dated December 13, 2011.
  18. jeffrez

    jeffrez Senior Member

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    Wow, now they're going from "miracle cures" that won't really hurt you - like "specially ionized" water, or harmless amounts of B2 - to things that will make you puke and vomit your guts out and potentially kill you. Not saying that if there's an underlying neurobiological cause something like "kambo" couldn't effect that, but the desperation is getting crazy.

    Does anyone really believe that such a thing is going to be a permanent "cure," even if it does help temporarily? Wouldn't it be more prudent to wait until some responsible researchers or clinicians find out what the active ingredients or principles are here and learn how to administer it more safely and effectively?

    Shuddering to think of desperate CFS-ers rushing out to buy some "online kambo" and actually dying from it. Safe to say that if it is possible to go "from bedbound to fit in just 14 days" with something like this, then there probably are safer medical options already in existence. But overall, in its current form (online "kambo," "reduction of any disease symptoms they may have") it sounds like mostly another snake-oil thing, sorry - and potentially a very dangerous one.
    peggy-sue, barbc56 and Calathea like this.
  19. Wayne

    Wayne Senior Member

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    jeffrez - Sort of searching my memory here (wish me luck) o_O But didn't you have an experience a few years ago with neurofeedback, or something like that, that gave you almost instant remission for a couple of days or so? But when you went back for your next treatment, it all reversed, and you again had CFS.

    Whether this was your experience or not, I thought it was a pretty dramatic story of what might be possible with a therapy that can in some way alters our brain and/or neurological processing. Dr. Jay Goldstein's extensive use of drugs to accomplish a similar thing was able to give "temporary" relief to many of his pwCFS. Some was for only a short while, others experienced relief for years.
  20. jeffrez

    jeffrez Senior Member

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    Yes, good memory, in fact - complete but temporary remission with neurofeedback. Like I said, I'm not dismissing the possibility that if there's a neurobiological cause that some component/s of the kambo could cause a remission - temporary or not. The difference is, neurofeedback isn't likely to kill you!
    Calathea likes this.

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