British Lung Foundation

Update

Hi All, i have not written for some time, about 1 year i think, for 2 reasons. !. I turned off my email notifications as i am only interested in posts regarding COPD. 2. BLF received a complaint regarding my posts as i am using an illegal substance ( in the UK ) to treat my COPD, so i agreed with BLF not to mention it by name again. Those who don't know what i am talking about you will need to do a search via my name.

My FEV was 69% when first dx in 2015, increased to 78% in 2016 after i started the new treatment in December 2015. Stopped taking pharma medication 24th December 2015. FEV dropped to 71% in 2017 due to a chest infection. Just had my annual LFT and my FEV is up to 82%. Still not taking any medication other than my " illegal substance ".

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I have quit taking most of my medication already as I am afraid of the long term effects but am still struggling with sob with just a little excertion. I got some bug so am taking antibiotics and the dreaded Prednisone. Would like to maybe try but have no clue on what or where to get. I live in the us in Portland, Oregon. Any help would be appreciated. Jane

Edited by admin to remove email address. This is not permitted for your own safety. Please use personal messages if you wish to share this information. Annienell

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hello swerve, nice to hear from you and all I can say is wow. watched tv programme last night young girl with pain did you see it, she went to small persons convention in a America and cannot get hold of what would help her so much in this country, very sad. wish you love and god bless x

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Thanks. Did not see the programme as i am not in the UK.

Oh my goodness, how odd - only yesterday I was wondering about you! I'd been reading on a different HU forum about CBD oils, (they're legal and can be bought from legitimate herbalists in this country) - and you came to mind. Good to hear that you're still doing well, and remarkably well by the sound of it - are you still juicing too? Don't know if the oils available here are the same as those that you use but there seems to be a growing interest in them (as opposed to an interest in growing them😊) for all sorts of illnesses and 'conditions'. Good to hear from you again.

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CBD is good for pain issues but no good for COPD. yes, still juicing and now adding a lot more greens to the juice, cabbage, bok choi, spinach, kale, lettuce...whatever is in my fridge at the time.

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Mmm, thought that might be the case - was just hoping........

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Cbd oils in this country are made from pressed seeds and have no psychoactive effects the stuff being mentioned by others has a high THC content and are illegal .Id like to point out also that videos can be found portraying the supposed success of the substance that is being discussed there are just as many videos showing the failures, people make every claim under the sun for this stuff including a cure for cancer.Bob Marley died of lung cancer and ingested more of this substance than most people.In the 1920s a study was done regarding sugars and the fact that a lot of diseases need sugar to grow and cause health issues so if you are changing your diet to lots of green leafy veg etc and no sugar this combined with exercise would probably explain a lot of the health benefits that are reported by people, chlorophyll in green plants is shown by scientific double blind studies to help with oxygen transfer and cell regeneration.In my humble opinion I think I’d rather try the healthy legal option than an illegal roll of the dice, people are known to take very bad reactions to this substance also.

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It's hard to find any serious or unbiased information about the product we're speaking about. On the one hand there's plenty of evidence of its mind damaging effects and on the other - a few anecdotal accounts of its medicinal properties. I find it strange that in spite of its known harmful effects some people would like it to be made legal just for 'leisure' purposes (or, I the case of some politicians- tax purposes) but no one seems to be pushing for it to be tested for any medicinal purposes it may have. I don't much like the idea that because it has a damaging bad side we can't look for anything more positive.......in case of what? It's already too readily available to those who who know where look for it - if not how to use it. (Swerv doesn't ingest or inject). Without valid information from a professional source, I'll stick with my fruit and veg smoothies and juices but - I have an open mind, and would like to know more. If all prescription drugs were 100% safe and free from any damaging effects I might think differently.

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Hi Magpuss. You said "but no one seems to be pushing for it to be tested for any medicinal purposes it may have."

It is being trialed here in Australia as well as Israel and other countries, but mainly the CBD at present, and unfortunately not for COPD.

Nevertheless, momentum seems to be picking up with quite a lot of studies/trials going on.

Kevin

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Correct, Israel is the leading country into research on this subject.

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Can you please show me the medical studies from Israel I’d like to read them thanks.

Wow - thanks for the update Swerv. Congratulations on your amazing progress. Never sure why people complain about others who have a different opinion/way of life when they're hurting no-one x

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Thank you.

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Hi Swerv, good to hear from you again and brilliant to hear how effective the unnamed illegal substance (in this country!) has continued to be for you.

{edited} It's good to have a proper discussion with the substance clearly identified. It was always made clear as I remember that the substance is illegal in the UK so no-one was under any illusion. But this forum is world wide and it is legal in many part of the EU of which we are for the time being a member, and in many states of our great trading partner (irony here), the U.S. And other countries too no doubt. Although there are some mental health aspects to using the substance which shouldn't be lightly , besdismissed, the substance in general causes far less damage than legal substances like alcohol and hey! - cigarettes.

As most members will be aware, the decision in individual countries as to which substances are deemed legal or illegal is a cultural one, not one which is intrinsic to the substance itself. So I find this decision to censor it's name petty and unnecessary.

While it might not work for everyone, your experience of increasing improvement over quite a long period is important for us to hear, and important that people can see clearly which substance is responsible for it. Thanks for your post Swerv and please keep updating us - best regards from jean, who is this minute irritably swallowing yet more damaging oral steroids.

PS: in case anyone is in doubt, this is a reply about THC which is extracted from the marihuana plant.

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Hi Swerv

Just to clarify it was actually Health Unlocked rather than BLF who did not allow some of the posts/replies on this subject.

Thanks,

Ben

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HU? Ok, not good Ben, but good to get clarification, thank you. I will amend my reply.

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Thanks O2Trees .

NB

Replies which insult the integrity of administrators have been deleted.

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Ok,

Delighted to read that you are well. Thought you had left us. Nice to know you are still around as I miss your updates and gentle humor.

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Thanks.

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I think it is daft too not being able to mention the substance by name. Hopefully one day it will be legal in the UK. Nice to see you Swerv and I am glad you are doing well. x

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Thanks.

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I don't know of any ban on mentioning plant names. To clarify, following an earlier post some complaints were made to BLF but other complaints were made directly to HU who decided to take action and edit the post themselves as some replies contravened their terms of use.

Everyone should remain aware that HU have rules (Terms of use) which we all agree to as a condition of joining and which include:

Your contributions must:

comply with applicable law in the UK and in any country from which they are posted.

Contributions must not:

advocate, promote or assist any unlawful act.

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Good to hear from you Swerv, I was wondering how you're getting on.

I totally agree with 02Trees post. While I'm not going down your route (only because I have bronchiectasis and not COPD) as I don't think I'd benefit, I'm very interested in anything natural that will keep me healthy.

Glad you're doing so well 😊

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Greetings to you Swerv! I'm with everyone else here, so glad you've popped in on us, and that you're doing so well. I also wonder about you often.

I sent that first lady a message to inform her that your medication is legal in Portland Oregon. She she may need a prescription, depending on the strength she would use. I also recommended that she do a little research on her own just to be prepared.

Also, your diet is extremely healthy. Which is how I was able to control my asthma; I don't take ANY medicine either. But I had some allergies that I had to figure out by a strict diet.

You take care, and please don't be a stranger...keep in touch,

Gail

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I guess one difficulty is that some substances are illegal in some countries , and the punishment for possession can be extremely harsh .

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But as I understand it, HU's reaction is about here in the UK, knitter. And possessing for one's own use is often ignored or attracts just a small fine.

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Did you know that the not to be mentioned substance causes emphysema when smoked, severe mental health issues and as for it being a cure all there are no long term human studies to prove any of this it is all anecdotal claims and while it is known as a pain reliever it only opens lungs as it’s claimed to be a bronchodilator, if that’s the stance people want to take they’re are many illegal drugs that are bronchodilators in fact nicotine is a bronchodilator even though it’s not illegal.From What I’ve read a certain drug made from leaves found in Columbia is a far superior bronchodilator to the one you are speaking of yet I don’t see anyone discussing it’s Use as it would be insane to discuss such a thing.This is just MY opinion.

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Well I already mentioned mental health issues Sjm, but where it is decriminalised that is less likely as information about safe ways to use it can be shared.

Im aware that it can cause emphysema, partly as resin is sticky and people hold the smoke down longer than cigarettes to get a bigger hit. I know - I did it, and Im fairly sure my own copd was partly caused by that (as well as occupational pollution - a major cause - and environmental pollution - London, couldn't walk there at all before I decided to move - and cigs of course although no way was I a heavy smoker.

But there are safe ways to ingest it. Cocaine is pretty dangerous in many ways so that's irrelevant as it's not comparing like with like.

Pharmaceutical drugs are also dangerous in many other ways. We take them as we have no option and in the end it's a balance of risks. If I had another option I would be more than happy not to have to take potentially heart damaging bronchodilators and bone thinning, glaucoma- and diabetes-causing prednisolone. MY opinion!!

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Your speaking as if there are no side effects of using this substance there are plenty and as for strong pharmaceutical drugs you are well aware that I am not a fan, I have osteoporosis through prednisolone so I think I’m well aware of the side effects thank you and should someone show me a five year double blind study with humans that showed any benefits of this substance then that’s fine but there has been no such study done it is anecdotal evidence at best and for every video or case that you want to mention you’ll find there are just as many negative ones.I was trained as a laboratory technician many years ago and have researched this subject at length with a clinical eye and find the arguments given to be laughable in my opinion!!! While I believe in free speach I also feel the need to inform people as to both sides of this debate and not just the singular arguments that are being portrayed here.I would hate to see anyone here either be hurt, have their condition worsened or incur legal penalties or prison for partaking in advice given on this forum.This is purely my opinion and I don’t require you to agree we are all individuals and I merely want to point out that in any discussion for it to be relevant and helpful both sides should be discussed.

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No problem with hearing both sides.

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There has been mountains of research into this subject and in fact the leading country for research is Israel who are astounded that it is taking so long for countries to wake up to the healing qualities of this plant. It was only criminalized in the 30's because pharmaceutical companies could not make any money out of a plant that is cheap to grow.

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Can I please ask for the mountains of medical research you mention as I would be very interested in any double blind human trials over many years that proves the benefits as this is how medications are approved and as you state you use it as a medication I would like to read that as if this medical information is out there it could helps people

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So your stating that your an ex smoker of this substance and it probably contributed to your lung damage yet now your stating it should be decriminalised.I have a close friend who’s son hung themself after years of smoking this substance which led to more powerful drugs.

{edited}

I live in an area where residents battle against drug use daily in our community and see first hand the damage it does, the people who want it legalised are police officers, social workers etc this would create a nice new taxable income for our government which would fill the gap filled by the reduction in smoking in recent years and the loss of taxes due to this.Again just my opinion.I will not be commenting on this subject to you again as our opinions vary greatly.Enjoy your night.😀

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Im certainly not suggesting legalisation Sjm - decriminalisation for possession you must know is different. No government taxes can be made from a substance which is merely decriminalised. When this is so, advice about safe drug use can be given in a more open way, information circulated more freely and sad situations like that of your friend's son are more likely to be avoided.

Also, given the predominance and availability of prescription drugs and their noted dangers, anyone who feels they need to 'get out of it' can find legal options to do so. Im just making a general point here, not referring to the tragic death of your friend's son.

Generally speaking marihuana doesn't encourage crime in the way that crack or heroin addiction does. I have known many communities battling drugs and they are usually those ones.

Just for the record, {edited} I am in no way promoting use of cannabis/marihuana. That is for individuals to decide for themselves.

A good night to you too Sjm.

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Hi Sjm2121 the not to be mentioned substance causes paranoia this is a fact and has been proved

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Thank you on a mission x

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Sorry I posted the same twice the first time a message came up it had not posted

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If too large a dose orally is taken it can cause paranoia, however i take it differently. {edited} Allowing the lungs to open but without any side effects like a high or paranoia.

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Taking it orally can cause heart andblood pressure problems vomiting agoraphobia,ptsd, social anxiety disorder damage to the lining of the intestines and this isn’t through smoking it’s through taking it orally

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Smoking anything causes emphysema and i am not aware of any known mental issues. People around the world are using this plant for medicinal purposes not recreational.

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People are also getting false hope and still dieing while using this plant and others have had terrible reactions to it again I politely ask can you provide a documented medical trial of five years with humansthat proves what your saying??

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It’s known to cause social anxiety disorder and ptsd not to mention violent outbursts

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I can not believe what I am reading today. This is ILLEGAL in the UK end of.

Are you seriously telling me and other people that it would be either ignored or if you are unlucky attract a small fine.

{edited}

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Absolutely - it is not a class A drug. Nor is there any clear evidence that it is a gateway drug.

Attitudes have changed hugely in the last decade - see link. I realise it may be disquieting to those who have little knowledge about drug use, or who get their information from certain print media (?Daily Mail). And how many homes, marriages etc have you heard of that have been wrecked by alcohol?

Those who work with drug users and many police too are clear that decriminalision of cannabis would do more good than harm.

independent.co.uk/news/uk/c...

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2012: expert study advocating decriminalisation: theguardian.com/politics/20...

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Do you think you could explain a little further regarding as to how it is disquieting to those who have a little knowledge about drug use.

{edited}

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Interpretation: Smoking both tobacco and marijuana synergistically increased the risk of respiratory symptoms and COPD. Smoking only marijuana was not associated with an increased risk of respiratory symptoms or COPD.

cmaj.ca/content/180/8/814.s...

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We conclude that regular tobacco, but not marijuana, smoking is associated with greater annual rates of decline in lung function than in nonsmoking. These findings do not support an association between regular marijuana smoking and chronic COPD but do not exclude the possibility of other adverse respiratory effects.

atsjournals.org/doi/abs/10....

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Marijuana burns at a much hotter temperature than tobacco and burns holes in the lungs causing emphysema this was explained at length to me by my lung specialist and copd specialist nurse as when quiting smoking I was curious as to the difference between marijuana and tobacco and how it damaged the lungs.This is scientific fact.

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Sure good to hear from you again Swerv and thanks for the update and am happy to know you are doing well.

I don't recall Swerv ever trying to push or convince others to follow his lead but only answered questions others had, so he was not really promoting what he was doing only keeping us informed as to his progress and experience.

What bothers me is there was someone on here the other day asking about taking hydrogen peroxide and defending their belief of it's safety. I am no expert on either but if I was to try one of the two "treatments" if definitely would not be the hydrogen peroxide. [edited]

Many countries are legalizing the other treatment so have to assume they believe it is safe to use and then it has to be up to the individual whether they feel okay trying or using it.

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Fabulous news Swerv, you are doing so well and it's such a shame you're unable to discuss what it is you are using. Well I think we all know but I believe different varieties come in to play. Sad because I'm such a keen gardener haha. Carry on staying well.

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Right or wrong, good or bad, take it or leave it - all individual choice. I, however, believe it is also my (our) choice to have the freedom of speech to discuss such matters and, in turn, to arrive at an informed choice. Glad you're doing well Swerv and thanks for the info O2trees.

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Glad if it was helpful frose :)

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On balance I don’t think the use of this plant would benefit me, & I certainly wouldn’t smoke it anyway, but if I thought I’d achieve the same benefit as Swerv has (good on you, Swerv), I wouldn’t care whether it was illegal or not, & I can’t imagine many people would really put that consideration ahead of their own health.

Sjm2121, isn’t the story of drug use in your community also just anecdotal evidence? Not that I’m saying it should be discounted.

Where I live, possession for personal use is, yes, routinely overlooked by the police because otherwise they’d have little time for anything else! But actually I think there is a strong case to be made for decriminalisation of this & other illegal drugs. The massive reduction in crime for a start, & the potential for education, & provision of safe, regulated supplies. Just my opinion.

I agree there should be no banned topics here. We’re all adults & should be able to discuss things in a civilised manner & reach our own conclusions. {edited}

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[edited]

No it’s not anecdotal in anyway when people in this country are already growing this to supply to the public causing gang wars and robberies the crime rates are soaring not declining and decriminalisation hasn’t worked in any country it’s been done in the crime rates always soar and violent crime always rises.People are robbed to pay for this drug.

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Then again most experts in the field believe this and other drugs are less harmful than tobacco or alcohol and should be decriminalised. Eg Professor Nutt of Bristol Uni (the “drug tsar”) & other scientists and criminologists. Prof Nutt, who had extensively researched the matter & gathered expert opinion before publishing his views, was sacked because they were politically unacceptable to the government. You might be interested in this article google.co.uk/amp/www.indepe...

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I assure you Hanne I’m very well versed on this subject I’d like to point out to you as I did to swerv people are taking this drug having false hope and still dieing or having severe adverse reactions to it so.And with respect the article you mention and your statement that the doctor was dismissed for his opinions just proves that his opinions could’ve harmed people

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In my view it just proves his views wouldn’t win the government any votes so it was politically expedient to sack him. However we’re moving a long way from thanking Swerv for his update and being pleased at his progress. I think we’ll have to “agree to differ” as to whether this product should be legalised or not 😊Nice chatting to you though.

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yes Been great talking to you as well

[edited]

have a nice night😃

It's probably a legal thing HU have to adhere to. They must have lawyers who advise what can be discussed and what can't. x

Hi Merv. Good to see you are still doing well.

It's nice to hear from you Swerv and even better to hear your doing really well.

Your choice of treatment is exactly that - your choice and given the horrendous side effects from legal drugs and the epidemic of prescription drug addictions currently sweeping the western world, I don't think anyone can justify denying anyone the right to use it.

There are no known deaths from it's use and it doesn't cause lung cancer (Although, Smoking it, is not the right way to use it anyway.)

Crikey, just what it does for severe epilepsy alone, is amazing.

Making money, is at the bottom of the reason it is stupidly classed as more dangerous than so called legal cigarettes and alcohol. xx

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