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OldGreyWolf

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Reply with quote  #16 
Thank you Demoncleaner, I think this is what stood out to me the most: " she had never even HEARD of CVS, but she knew about CHS. that is what is disturbing to me. a real condition, that people actually suffer from, being less know than a completly speculative condition, linked to a substance that cannot be studied and with 80 years of disinformation and stigma associated with it."

My second or so round in the ER when my CVS symptoms first started showing up - ER doc asks if I've ever smoked pot or if I was a pothead. I admitted to trying it a couple times to calm my anxiety and have my legal card, but he said "Don't smoke pot. It's the pot making you sick." No mention of "CHS", OR CVS. It's a good thing my fiancee is a scientist and that comment didn't make sense to him either. A few hours on the internet and he pinned down "CHS", and led him to read on to CVS which is what I have been officially diagnosed with. (Yes, after a period of abstinence where the THC was completely out of my system yet the CVS was as terrible as ever). 

My theory is that they're trying to pin something on Cannabis, like they tried to do with schizophrenia (they tried to claim Cannabis use caused schizophrenia, but as use of MJ has skyrocketed, the rate of schizophrenia has remained completely steady. They then theorized schizophrenics were more likely just trying to self-medicate with Cannabis than any causal reason.) For a wonderful documentary on the history and reasons for current restrictions on Cannabis I recommend "The Union: The Business Behind Getting High". Incredible amount of information.
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OldGreyWolf

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Reply with quote  #17 
Free in HD on YouTube: "The Union: The Business Behind Getting High"

 
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islandman

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Reply with quote  #18 

 Thank you, demon cleaner, I just talked to my Doc about my illness, and my concern over all the weight I have lost...He said there is nothing he can do to help with that. Well..that stressed me alot...He doesn't have much experience with CVS..

 The few occasions I tried smoking, helped my apatite, I could eat like I use too...I am done worrying about CH..done done done...I am going to try it again, I am desperate to get some weight on...i look like a junky..lolI assure you I am not.

 I will keep posting, Keep up the fight.

                                                         Harry

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demoncleaner

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Posts: 277
Reply with quote  #19 

thanks for the link oldgrey, dont think i have seen that one yet.

 

the thing that infuriates me about CHS/CVS is the rate at which CVS patients are misdiagnosed to begin with. how many of us have been misdiagnosed, time and time again, put on ineffective/ expensive meds time and time again.  some of us, i am 40, have spent our ENTIRE LIVES looking for a diagnosis. for myself i went 39 years essentially. how many peeps have had thier gall bladders removed needlessly?

 

so you look at the rate of misdiagnosis allready, and common sense dictates that a number of these people that are being MISDIAGNOSED with CHS, are actually suffering from LEGITIMATE CVS and using cannibas as an effective tool in fighting it. so this further diminishes the pool of folks that are ACTUALLY suffering from this so called CHS right? i mean, i would go out on a limb and say that 30% or so would actually turn out to be legit cases of CVS.

 

if you take away the stigma of pot, and just say - recurrant unexplained vomiting, hydrotherapy, well, those things sound very familiar to most of us here. as Dr. F. put it himself, "some of the coping measures that CVS patients employ not only seem to help with nausea, but also counteract the intense anxiety that underlies and is caused by nausea. examples of these measures include "hydrotherapy" in the form of prolonged baths or showers, pacing about, attemting to smoke, and the use of marijuana".  for me, it is all of the above and it felt really good to see dr F. validate those actions, or in other words, im not wierd for wanting to do those things, its actually quite normal for those of us suffering to turn to such measures.

 

the problem i see with CHS is this: they still have not pinpointed a connection between the 2, that is, CVS type symptoms and herb.  there are a bunch of proposed theorys that simply fail to hold water for me:

 

 1. we are trying to thermoregulate with hot showers, due to cannabinoids screwing up our temp regulating center in the brain.  anyone who has suffered the pain of CVS vomiting knows that the LAST thing we are trying to do is thermoregulate. its rediculous. i take WARM showers for the most part, alternating with ice cold water on my head, and use intense heat only when in agonizing pain. it has to do with relaxing your body and cramp reduction, not trying to regulate you body temp with hot showers.

 

2. cannabinoids acumulate in body fat with heavy use, and then this causes an overdose condition that leads to CVS type symptoms. well, take a guy like me who has virtually ZERO body fat due to my CVS attacks, im sure many of you are in the same boat as me.

 

3. certain cannabinoids are proposed to slow down gut motility. well, thats great, but most CVS sufferers dont suffer from slow motility, its usually the opposite, as in my case. you can set a clock by my movements, lol. when i vomit in the morning, my stomach is ALLWAYS EMPTY.

 

none of these theorys makes sense or hold up to scrutiniy. there may be a hypersensitive subset or something, but for the vast majority of people, herb will not result in these type of symptoms, at all.

 

further disturbing to me, is that the intial report that started all of this, one of the distinguishing factors they used was "heavy longterm use". now, years later, this is slowly morphing to "any use at all". it was never proposed that CHS was a result of casual use, only longterm heavy use.  but now when i walk into the er, its "do you smoke pot". not how much. not how often, its do you use? yes? well sir, you have CHS, stop smoking pot, this is causing all of your problems and we are not going to help you with pain meds. and thats where the stigma comes in. there is little to no science being done here. this is a blanket assumption.  all of these report claim that cessation resulted in a reduction of symptoms, but there if virtually no meaningfull followup being done on these patients. how are they one year out? how are they 5 years out? we dont know. if your doctor tells you, "stop smoking pot, there is something called CHS and this is causing your problems", this will have a powerful psychosomatic effect in a certain number of patients. CVS has as much to do with the mind and anxiety as the body. i remember the first time i vomited a substantial amount of blood during an attack, and literally, the shock of seeing that blood SHOCKED me out of my attack. it stopped, right there, like a bad case of the hiccups. this mind is powerful and a doctor telling you that you are causing all of this by smoking pot can be a powerful suggestion and this could bring about a short term improvement in symptoms. i want to hear whats become of these patients 2 or 3 years out.  has stopping smoking continued to work or did attacks continue to occur? we dont know. and untill we do know, CHS is just another way for doctors to misdiagnose the segment of CVS sufferers that also happen to use herb as an effective tool for fighting our illness. its like the ER doc i saw, after i said i smoked pot, she didnt even want to KNOW about CVS. she had allready "diagnosed" me with one question. "did you say hot showers? do you smoke pot? you have CHS."  just another way for doctors to dismiss and invalidate our pain and suffering.

 

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demoncleaner

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Reply with quote  #20 

@islandman

 

for me, thats where i feel like it is the most helpful for me. i too look like a junky, lol.  during my recovery phase where i need to eat , but honestly dont feel like eating at all. herb is a godsend for stimulating the appetite and helping to put the lbs back on between attacks. and it just helps to relax the body and keep the anxiety down. as doc said, beyond a 5 or 6 on the pain scale and i dont even bother when activly vomiting, but for all other phases, i find it to be such an effective tool. the fact that i dont have to put it in my stomach is such a huge bonus as well as the fact that it acts instantly via smoking or vaporization.

 

some of us on the board here use like nutrition drinks to help with the wieght, i started trying things like muscle milk and ensure based on recommendations from others here, might give it a shot, easy way to "chug" down some much needed nutrition.

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OldGreyWolf

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Reply with quote  #21 
Hmm, my link seems to have been removed. Anyway, a search of the movie on YouTube should net quick results for those interested. 

Cannabis has been used by ALL types of people in all walks of life for at least 3,000 years and NO deaths have been recorded due to Cannabis use alone. None. 

But, I'm tired of arguing, people need to educate themselves and quit repeating harmful misinformation. Willful ignorance is something I'm not tolerant of. Even the Stanford doctor who diagnosed me "warned" me about CHS. I'm sorry, but if you're subscribing to "Reefer Madness" style theories you have absolutely no respect from me, Stanford doctor or not.
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demoncleaner

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Reply with quote  #22 

the quotes from Dr. Lester Grinspoon, MD/Professor from Harvard Med school are worth the view alone. he has allways been one of my favorite advocates for rational marijuana policy. He is obviously a very intelligent man.  I love the way the movie ends with him speaking about his buddy Carl Sagen, another great mind and pot smoker and Lesters last line is gold.

 

 "I mean, you cant sustain a lie like that forever"

 

that movie does a great job of hitting most of the major bases and is highly recommended for anyone who is not familiar with the history of how this plant was demonized and is interested in learning more in terms of truthful information. things like where the myth about killing brain cells actually stemmed from. and people believe this stuff like its fact. I say it all the time, if you want to know the truth, you have to look into it yourself, because if you rely on what your fed by the gov, the media, the doctors, your going to wind up totally ignorant on the subject and just be guilty of perpetuating the lies. and that goes for CHS as well. im being lectured by a MD, in an ER about having CHS and this person has not even read all the reports on CHS when asked. I have, ive read every one published to this date. I knew more about both CHS and CVS and this doctor knew virtually nothing about either, but was willing to misdiagnose me and lecture me on my lifestyle, preaching from a pulpit of ignorance. and i payed good money for that

 

to this day, its still the most effective tool i have in my CVS arsenal short of opiates, which are allways a last resort for me. 

 

 

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OldGreyWolf

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Posts: 33
Reply with quote  #23 
Very glad you liked it. As I said, more people need to educate themselves. Dr. Lester Grinspoon is actually a personal hero of mine. His blog is often a fascinating read too. Educate yourself. <3
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islandman

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Posts: 17
Reply with quote  #24 

 Hello, my doc started me on cipro yesterday, between that, and phenergan, plus a little herb...I ate the best meal I have in weeks...I am feeling better.

 The herb didn't help much with the discomfort...but the fact I ate a real meal, had a great effect for my mood..I document everything.I have a whole CVS portfolio...lolI

am keeping a close eye on what I take, and how it works...placebo effect or not...I am convinced it helped me.

 I too am avoiding opiates. Has any one herd of Marinol ?

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OldGreyWolf

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Posts: 33
Reply with quote  #25 
All Marinol is is 100% THC. That psychoactive compound is only ONE of the 30-ish cannabinoids or so found in the actual plant. Another beneficial one is CBD, or cannabidiol, which is excellent for pain management. I personally stay away from sativa-dominant strains, which can exacerbate my anxiety.
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demoncleaner

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Reply with quote  #26 

marinol....is a joke, and a bad one. marinol is SYNTHETIC THC. THC was the first cannibinoid that was isolated and is the virtually the only cannabinoid that has had ANY research done on it. THC is the main PSYCHOACTIVE cannabinoid in marijuana. it is NOT the main MEDICINAL cannabinoid. in the last decade or so, there has been alot of work on both CBD and CBN.  there are around 70 known cannabinoids at this point, with more being discovered every year, remember, you cannot research this plant.

 

here's the deal with marinol. it is the perfect illustration of our ludicris policy on marijuana in this country. big pharma cannot patent a PLANT. so what does big pharma do? it produces a synthetic version of THC and gets a PATENT on it, so that they can make money on it. and here is where it gets truely rediculous. marijuana is a schedule one drug, that means "no acceptable medical use". this despite the fact it is approve by voters in 14 states as being "medicine" for a HOST of conditions, and has been used medicinally for 1000s of years. and where is marinol scheduled? schedule 3. it is utterly rediculous. what are you tested for on a pee test for marijuana. thats right. THC. the same schedule 3 substance thats is ok if it is produced by big pharma, but its schedule 1 if it comes up hot in your pee from smoking pot. and it has no "medical use", that is of course, unless big pharma produces it.

 

and it gets even better. marinol DOES NOT WORK. and that is becuase marijuana is a COMPOUND of over 70 differant cannibinoids depending on strain, etc. these cannabinoids all interact with each other to provide an overall effect, which can vary tremendously from strain to strain. as old grey stated, sativa dominant strains tend to be very "up" and can cause anxiety in certain users, while indica, cbn, cbd dominant strains help with sedation, relaxiation, sleep and pain relief. high THC strains are not necessarily strains that are appropriate for the type of issues that CVS patients deal with. and THC, served pure and unbuffered by the other cannibinoids that help to diminish the anxiety effects of pure THC, is not effective medicine.  its no differant from all the synthetic cannabiniods being released as "spice" and other products. there is a host of problems when you individually refine these substances and remove them from thier natural compounds. substances that are not toxic when buffered by other substances that they are naturally bound with , become toxic when super refined and purified and taken out of thier natural context.  its like coca leaves. natives chew and have chewed coca leaves forever. no problems. but you take that substance, super refine it into cocaine or crack and its a real problem, lol. 

 

marinol is just one example of how big pharma hinders advances in medicine rather that helping with advances in medicine and one of the prime examples of the hypocricy of our marijuana policy. if its not synthetic, if its not a pill, if its god forbid a /gasp! PLANT!!!! AHHHHHHH!....its not medicine. we have made some real advances thanks to pharmaceuticals over the last 100 years, but in many ways we have also taken a huge step back as well as a huge leap into the unknown, dismissing 1000s of years of empirical evidence when it comes to natural, plant derived medicines in favor of the latest greatest synthetic pill.

 

i know a gal that has a marinal rx for her MS. She also smokes. she said the marinol is completely and utterly ineffective. where one or 2 tokes helps her tremendously. marinol is a joke created by big pharma that completly misses the point and is about one thing and one thing only. $$$

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OldGreyWolf

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Posts: 33
Reply with quote  #27 
Just happened to watch this - it's even better than "The Union". I love how they have that one doctor naysayer and just about everything he demonizes about Cannabis is refuted scientifically. Also - Cannabis as a medicine had been LEGAL (and widely used) in the US up until 1930-something. It has been legal and known for treating medical problems for far longer than it has been illegal. 

"Clearing the Smoke (2011) - full length PBS documentary about the history and many uses of medicinal cannabis. Includes plenty of footage of Dr Lester Grinspoon - one of the original champions of medical marijuana, who remains a highly respected advocate to this day."

As I assume my link will get taken down, please do a search for "

Clearing the Smoke: The Science of Cannabis - Full Documentary"

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islandman

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Posts: 17
Reply with quote  #28 

 Hello, this is for all CVS ers.... I am lucky enough to live in a state with medical weed.. I have just become a patient of an oncologist here...I have found a very strong..pure indica glycerin has been amazing..I cant explain the science..but it is a concentrated honey like liquid..I have a tea spoon in the morning, and a couple of hours later..my rotten guts..feel decent..given up two RXs..going well.

 

 Anyone interested can google, and find all the info..I only throw this out there, because it has worked...The thing is. by eating it..it changes its chemistry...it doesn't take you high ( great for work )...but stays all day.

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demoncleaner

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Posts: 277
Reply with quote  #29 

hey island, can you please post back to the thread from time to time if you think about it about how that is workin out for you after a couple, few months?.  i was talkin to a guy a few years back who had gone to canada and procured an oil based cannibas preperation, and had had some great experiance with it with his wife. i have had very little experiance with eating herb beyond childhood brownies, primarily due to the economics of it, cooking requires alot more herb/dose, and until a few years ago untill gold skyrocketed, at 300/oz, it was the same price as gold! lol. but its definatly a much stronger "body" effect with eating vs. smoking, and that body effect is just what we are after alot of the time.

 

i really wish alaska had a better medicinal program, especially since it has been protected to some degree for decades under state constitution privacy laws, alaska literally was the forerunner in decrim, but unfortunatly lays far behind what is taking place in other states with a large populace. ak is about 600,000ish, and ALOT of military transients. (10% of our current afghan deployment is based in AK).  it is practically impossible, especially when considering the size of the state and travel, to find a doctor to rx.  there are literally a handfull, and our state list is in the low hundreds.  to put it in perspective, i saw the other day that colorado had around 100,000 immediatly after their med intiative passed.  additionally, and most importantly, we have no dispensaries which make things like edibles economically viable for patients to try. also, being able to sample a great number of strains and actually know exactly the strain you are getting is sooo important when it comes to using and choosing the proper herb as medicine.

 

island, are you going to a local dispensary for the glycerin? if so, can you aslo pass along any information on strains that you might find help our particular list of common compliants? thanks for sharing with us

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islandman

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Posts: 17
Reply with quote  #30 

 Demoncleaner, I live in New England, our medical weed system, is not like calorado, i wish it was as simple as walking into a store..lol  We have caregivers, people we designate as our grower, we are alowed 6 plants, they grow for you, for a fee to cover expenses....they say. It has been hard to find a true quality straine...I will keep you up to speed as i progres.

 The glycern...is home made.. I am not sure how..you will get better info from google..honestly. I can only atest to how well it has worked for me...day 3, no puke pills..lol  That is a victory in my book,

 

 As far as strains for my CVS ...I have only found two so far...Kalishnakova...Green Krack....I am excited to try white widdow.

 

 Take care.

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