Dealing with chronic pain
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Project Twenty21

Parrot123Parrot123 Member Posts: 52 Courageous
Hiya. My name is Will. I have battled Hodgkin lymphoma stage 4 using cbd oil. Can anyone tell me how I can get on this trial. As they have now found a lump in my Kidney. Any information at all wud b very much appreciated. GB Will xx

Replies

  • chiariedschiarieds Community champion Posts: 3,728 Disability Gamechanger
    Hi @Parrot123 & welcome to this community. I've been trying to look into this for you. Project Twenty21 seems to be saying, from what I can find, that they'll enrol 20,000 patients by the end of 2021 (hence the name) but focusing on just 7 disorders. See: https://drugscience.org.uk/project-twenty21/
    I've also been using CBD to help with my disorders, & researched about 18 months ago before trying it. I found that (mainly USA) studies were suggesting that CBD could be just as effective as medicinal cannabis for some disorders. Might I ask where you get your CBD from? I may be able to help you further with this, & will get back to you later.

  • Parrot123Parrot123 Member Posts: 52 Courageous
    Thanks very much 😊. I get my oil wherever I can. Will xx
  • chiariedschiarieds Community champion Posts: 3,728 Disability Gamechanger
    Hi @Parrot123 - Thank you for replying, Will.

    May I recommend this facebook page, 'Simply CBD Users Support:' https://www.facebook.com/groups/SimplyCBD/

    The information I learnt there really helped me to try CBD; how to start, & build up gradually to find the dosage that might help. They also correctly stress that many medications (& even over the counter ones you might buy) must be taken into consideration as to the timing of doses. This is because CBD is broken down by a complex of enzymes in the liver where over 90% of medications are also broken down. Therefore time gaps are needed (4 hours is recommended) between taking CBD & most medications, etc. to ensure you get the benefit of prescribed medications (& not an accidental overdose).

    Anyone taking CBD should really discuss this with their prescribing Dr, or a pharmacist. I discussed this with our GP's surgery pharmacist by telephone. If you feel uncomfortable with asking them, just go into your high street chemists, & ask to speak to their pharmacist. Ask if your medication, or any over the counter meds, or supplements you take, are adversely affected by the liver's cytochrome P450 complex (the liver enzymes I've mentioned above).

    I buy online from Simply CBD: https://www.simply-cbd.co.uk/ .....very reasonably priced & lab certified. The above facebook page will be able to say which of Simply's oils may be of a similar strength to what you're already taking, & suggest if you might benefit from going to a stronger oil if ever needed.

    I also vape CBD e-liquids from https://littlehempshop.co.uk. As these obviously do not go through your digestive system, they may help those who want to try CBD, but struggle due to taking medications needing a gap between taking these & CBD. They also sell hempy tea which again you can have any time.

    I hope some of this may help as far as CBD goes. Any other questions, please say.




  • Parrot123Parrot123 Member Posts: 52 Courageous
    Thanks you so much . I had Hodgkin lymphoma stage 4 so I need high levels of THC low levels of cbd. As. I was a nurse. Hodgkin lymphoma can come back usually in the first 5yeats. Got Hospital on Friday as they have now found a lump on my. Kidney. . Thanks so much for replying Will xx
  • chiariedschiarieds Community champion Posts: 3,728 Disability Gamechanger
    Hi Will, Sorry I was unable to help you. The only other thing I can think of is the Realm of Caring. This is USA-based, but will answer questions from anywhere; I have emailed them myself. They have done a lot of research on CBD.
    You are supposed to register first, which I had difficulty with twice. However from their home page, click to accept cookies at the bottom, then you'll see a 'Support' button, which if again you click on, this opens up a box where you can email them with your diagnosis & any current medications asking for cbd advice. You'll get an automated message, but they then usually get back to you in 2 working days. They'll recommend American cbd. The facebook page people I've mentioned will then convert that to one of Simply CBD's equivalents. Unfortunately they cannot recommend anything with high levels of THC or the site would be shut down. I do know several people facing diagnoses such as yourself are usually recommended to build up as quickly as they can to the black oil: https://www.simply-cbd.co.uk/product/simply-cbd-black-1000-10ml-30ml-50ml/. I've just searched the facebook page's for Hodgkin's lymphoma & this is what they would still advise.
    However, if you're able to source CBD with THC, I do understand you may not wish to try the above, but it does seem to have helped many otherwise I would not have said.
    Do keep having a look around here, & let us all know how you get on with your hospital appointment on Friday. Btw I was a physio, so it's very good to 'meet' you. :)

  • Parrot123Parrot123 Member Posts: 52 Courageous
    Awww Thank you 😊 that is lovely Will xx
  • Parrot123Parrot123 Member Posts: 52 Courageous
    Hello All,  I hope your all well. In these horrible times . Project  2021 refers you to a clinic in Harley St. Pay for a consultation. Then get it prescribed but you have to pay for the prescriptions. conned
  • Parrot123Parrot123 Member Posts: 52 Courageous
    Hello all, I hope your all well? I tried to join project 2021 but its private you have to get a consultation . Then pay a fortune for low levels . Hope this helps some of you 

    Take Care

    will
  • woodbinewoodbine Member Posts: 1,277 Disability Gamechanger
    hi @Parrot123 excuse my ignorance...project 2021 is?
  • chiariedschiarieds Community champion Posts: 3,728 Disability Gamechanger
    Hi @Parrot123 - & welcome to this great community, Will. I've looked into this before as another member posted about it, & I didn't know what it was about. In the meanwhile I had been taking cannabidiol (CBD) for some time. Prior to taking it I did some research, including reading some medical papers. The research is as yet fairly thin on the ground, & mainly from the USA. Apart from some severe disorders such as Dravet Syndrome (severe epilepsy in young children), CBD has been found to be just as effective as cannabis, & therefore without the THC psychoactive high. If you think you may therefore consider CBD, please let me know, & I can advise a little further.
  • chiariedschiarieds Community champion Posts: 3,728 Disability Gamechanger
    @woodbine - see : https://drugscience.org.uk/project-twenty21/   I'm not in favour of the 'medicinal use of cannabis' unless in the rare cases as I mentioned. CBD can help some people with pain, anxiety & depression especially, similar to some claims for cannabis. It's not a cure all, but, if taken correctly, I can at least vouch that it may help.

  • Parrot123Parrot123 Member Posts: 52 Courageous
  • woodbinewoodbine Member Posts: 1,277 Disability Gamechanger
    chiarieds said:
    @woodbine - see : https://drugscience.org.uk/project-twenty21/   I'm not in favour of the 'medicinal use of cannabis' unless in the rare cases as I mentioned. CBD can help some people with pain, anxiety & depression especially, similar to some claims for cannabis. It's not a cure all, but, if taken correctly, I can at least vouch that it may help.

    Yes sorry I read that thread after this one do'h ! I have to agree i'm not in favour of it at all, it's supposed to help people like me with seizures but from what I have heard/read only in the very worst cases and then it only helps doesn't cure
  • chiariedschiarieds Community champion Posts: 3,728 Disability Gamechanger
    Medicinal cannabis has been found to help in young children that have Dravet Syndrome; a rare form of epilepsy where they can have multiple seizures every day. I've found nothing that intimates it can help with other forms of seizures, unfortunately. And yes, whilst it hopefully helps, it doesn't cure in these young children.
    Unfortunately there's not much research about cannabis vs CBD. More known about cannabis than CBD. Research so far on CBD indicates it may help with pain, anxiety & depression. As it's supposed to help with 'homeostasis' i.e. putting your body back into balance, there are as yet wider unsubstantiated claims.
  • Parrot123Parrot123 Member Posts: 52 Courageous
    I have no choice as i had Hodgkin lymphoma stage 4b. Tried to get it prescibed. Drugscience puts you in contact with Harley street. I can't afford it :-(
  • chiariedschiarieds Community champion Posts: 3,728 Disability Gamechanger
    @Parrot123 - I remember you now from your first post. Your GP can't prescribe it I believe, but do you see a specialist who might have a better understanding? If not, perhaps try CBD as I know about some people who try this for cancer.
    In theory CBD could help, but as yet the reports are anecdotal. Unfortunately there's not yet enough studies on CBD, but there's certainly growing interest about in the medical community. If you want to try, I'm happy to advise if you wish.
    I believe you were trying CBD, but the quality & efficacy of this can vary. Obviously I'd like to make sure you were getting the best around. :)

  • Parrot123Parrot123 Member Posts: 52 Courageous
    Aww thank you so much. Very much appreciated x
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