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Does anyone here on Tacro use CBD oil to alleviate other issues? Everything I've read about CBD oil online makes it sound very benign, but my transplant pharmacist found a study showing that CBD inhibits a liver enzyme needed to metabolize Tacro, meaning it could have a similar effect to grapefruit in terms of increasing drug concentrations in the blood, possibly to toxic levels. This was a study done in rats, not humans, and there are no anecdotal cases to my knowledge of anyone having Tacro toxicity due to CBD. Does anyone have any info on this? Thanks. 

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  • Although I cannot answer your question, Colorado has had legalized recreational MJ for a while. Part of the deal in legalization was a research piece. The University of Colorado in Pueblo is the research center. It may be a good place to keep an eye on research.

    Institute of Cannabis Research | Institute of Cannabis Research | CSU-Pueblo
  • Hilary , thank you for this information. I have been hearing a lot of good things about this. Also, I agree about the doctors not addressing how you feel. When I mention my fatigue, muscle aches or tremors my neph tells me I should see a doctor who can address my depression / anxiety . It's frustrating . Be well. Mary
  • Hey, I was doing loads of reading about this cause there are so many studies about CBD oil and how it can kill cancer cells and prevent them. Also it can prevent transplant rejection ... They just made synthestic CBD for anti rejection. Sent all of these to my transplant Drs and they said no. Not gonna take a chance on my own, but I think it could be great. But western medicine takes it time...
    • Can you send me the article/study about CBD preventing rejection? I've never heard of that before. 

  • I have tried several unapproved products but always tell my transplant team what I believe will help me.   What has worked me, may not work for others.

    I have tried L-lysine with Great success when the anti viral drugs that most transplant patients take do not work.  I once had a viral load of 15,000 copies of EBV and brought it down within 2.5 weeks to 250 copies. Once I stop taking Lysine or reduce the amount, I need to increase it to keep myself at a baseline number.

    • I am probably the only one with an organ transplant who has taken large dose of L-lysine. Because I am the only one I cannot say if it will work for anyone else.  If no drug can help your EBV then I would not take more than 500mg per hour and do not take a lysine that contains fillers. I bought the brand NOW that has no fillers added as it is pure Lysine.

      Since my viral load is normal or what I call a safe number, I only take no more than 1500mg in total per day. That means 500mg in the morning, 500mg in the afternoon etc..  If I start feeling symptoms of EBV, I will increase my dose and go for labs to confirm.

    • I meant to say to keep my viral load to an acceptable level.  I can tell how I feel and currently, I believe my viral load is below 500- zero copies as I have no symptoms.

  • I do believe that CBD oil acts as an immunosuppressant.  I do not think it will increase your TACRO levels but it could put you at risk for fungus if the company that is selling the CBD oil does not go through the proper testing channels.

    Which company are you buying it from? I would talk to your transplant team to see if they can support you and to check your blood work for any fungal infections that could possible set it.

    May I ask what issues are you trying to alleviate? 

    • What are your EBV symptoms? I was told EBV doesn't necessarily mean you have mononucleosis. I've had active EBV for a few years now and they've never given me any anti-virals to treat it; my understanding is that it won't make a difference. My last copy count was a little over 3,000. I was under the impression CBD boosts the immune system, but not significantly. The company I'm most likely to buy from is Charlotte's Web, they seem very reputable and they have third party testing for molds and funguses, etc. My team is not willing to do anything, they don't care about my wellbeing, truly, and have proven that time and time again. As long as I'm alive I'm a statistical success for Tufts, and that's all that matters. Quality of life is irrelevant to these people. I've been to two other nephrologists and they're all the same, they only care about the kidney. They don't care that I have EBV and a hemoglobin of 8-9 for two and a half years now, and when I "complain" about my quality of life and feeling worse than I did on dialysis they recommend antidepressants. It's a joke. 

  • I see you in Florida, be careful going outside. I have had skin cancer 5 times since my transplant. It was squamous cell.
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