Mayo Clinic Connect
Has anyone used CBD oil or anything similar for use in relieving Neuropathy?
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CBD oil MUST have some THC to be so
Somewhat effective. I use the highest combo I can find which is available at dispensaries only. It is Care by Design which has 150% each CBD/THC.
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You are so right. THC must be present to activate the CBD component and to lift your spirits a bit. I have been using Care by Design for more than a year now. I use a 2:1 CBD/THC formula to begin my day. I don’t know what 150% CBD/THC means. Sometimes I add a dropper to my coffee and sometimes I just use it as a tincture after having something in my tummy. I find that It works really well at bedtime taken sublingually to ensure a comfortable sleep. Be safe, be well, and please enjoy your pain free moments.
Liked by John, Volunteer Mentor
I did. useless. However, I'm 84 years old with 30 yrs PN. Read somethere its more effective for people who have only had few years of PN. You have to read labels and make sure you are getting the right dose. No one can tell you how much to take. Start slow and build up from there
The main thing with CBD that you need to research is the Absorption rate and the bio availability. You have to remember that your body is made of more than 60% water and let's be real, (CBD) OIL and water do not mix so in most cases you are getting less than 6% absorption and bio availability for 3-4 hours. I have been using a product for about 90 days mainly for Plantar Fasciitis that has studies showing over 90% absorption and has a bio availability of 12 hours. Not only does it reduces the pain immensely, it also helps with sleep and anxiety.
I have a friend who's kid takes it for severe adhd and it has made a night and day difference
The main thing is MAKE sure you are getting a HIGH quality product. Unless you normally buy sushi from a gas station
What exactly are you using? What form and how much? And exactly where did you buy it (phone # please).thx
Maximum strength cream Lidocaine for topical is 5%. For me: completely useless
@gfisher100, @garydoys. The CBD oil that I am experimenting with at this time is located at the following link. I am using the Releaf Balm 3:1 THC to CBD. https://www.papaandbarkley.com/product/releaf-balm/#
I’m so glad to find this post. I am experiencing extreme burning in my feet from ideopathic peripheral neuropathy! I am very reluctant to start Gabapentin, as my PCP has prescribed. I live in Colorado so I can easily get CDB cream! Can you suggest a name brand and what exactly I should be asking for? Thank you so much!
Useless for me. My pain doctor just started me on drug called Buprenorphine. It's a low-grade narcotic. It's a patch that lasts a week. I have had neuropathy for 30 years, have tried different meds with decreasing results until 2 weeks I could only walk 15 feet without pain. The neat thing about this patch is that you put it on your skin where there is no hair (upper chest or arm) and it lasts for one week. You can shower with it. The downside is that it's expensive, but fortunately my insurance covered it. It is what's called "Transdermal". It migrates through your skin, goes directly into your blood stream. If you took regular narcotic You would have take much higher dose because it's absorbed in your stomach and is diluted there. I just started this yesterday. It has given me great relief. I'm on the minimum dose (5 mcg/hour). My pain was so I had it even if sitting down. The mcg dose has cut my pain 50-70%. When I see the doc next week I will ask if we can increase the dose. The stuff is really a miracle for me
posted by nkhan@sarah_leanne
My name is Nazir Khan. I am working for the UN as an international civil servant and am currently based in Harare, Zimbabwe.
In August 2017, I began to experience gradual onset bilateral symmetrical discomfort of my feet, which could be described as a heavy feeling. Gradually this progressed to a burning sensation along with numbness and pins and needles. My feet are very sensitive to touch. Since then the symptoms have been constant, and they have affected my ability to mobilize freely. I am no longer able to exercise. It is now 18 months later and my symptoms have not resolved. The symptoms of burning/tingling pain and altered sensation are rapidly progressing.
Since the onset of my symptoms, I have seen a large number of doctors in countries all over the world and have had a very large number of tests performed. My most recent assessment was done by Mayo Clinic Rochester.
There has been some conflict in opinion. I was initially told that my symptoms were possibly the result of spinal stenosis caused by degenerative disc disease. To fix the problem, I initially considered stem cell treatment, but ultimately a decision was made to undergo a course of two rounds of spinal platelet lysate injections in a clinic in Colorado.
However, according to the aforementioned more recent assessment in Mayo Clinic, my diagnosis appears to be a small fibre neuropathy.
I have not tried any medication yet but my symptoms are deteriorating rapidly. I am finding it increasingly difficult to walk because of the constant burning sensation, severe numbness and pain.
I am wondering whether my condition can benefit from the pain cream you mentioned in your post on Mayo Clinic Connect and if so how can I get it in Zimbabwe.
I think you had the right idea with stem cell therapy , I have researched this till it’s comjng out my ears , big pharmacy does not want to cure any disease , it would put a lot of people out of jobs , the last disease cured was polio in the sixtys … in a world with super computers we can’t find cures for disease now ? I have read with artificial intelligence that’ these compute will be able to solve and cure a lot of disease , artificial intelligence is moving along so fast Elon musk has stated he is worried about the pace of artificial intelligence . Check out the you tube video joe Rogan with Mel Gibson , I hope to hear from you soon
Very interesting! Would you mind sharing with the rest of the community the name of this product and where and how the rest of us might obtain it , and perhaps, benefit as you have done.
Hello @carryme, welcome to Mayo Clinic Connect. Thank you for posting. I too wish stem cell treatment was available but it's really not there yet and there have been no documented clinical trials for stem cell therapy for treating neuropathy that I have seen. I went to a meeting last August at the Minnesota Neuropathy Association where we had a guest speaker talking about stem cell therapy. There are a lot of areas where it is a viable treatment and offers a lot of excitement for those that can afford it and get it but neuropathy is not one of them. I've attached my notes from that meeting. Here is part of the notes on stem cell therapy for neuropathy.
Outlook for Treating Peripheral Neuropathy
— Stem cell transplantation remains largely at the pre-clinic stage
— Proper stem cell homing and migration remain a concern
— Stem cell transplantation has shown some benefit but is still inferior to nerve repair with conventional techniques
— Pre-clinical and eventually clinical studies comparing different types of stem cell are needed
— Optimal Schwann cell differentiation has yet to be achieved A little explanation for the last bullet:
The Wound Microenvironment Reprograms Schwann Cells to Invasive Mesenchymal-like Cells to Drive Peripheral Nerve Regeneration
The repair Schwann cell and its function in regenerating nerves
Here are a few more articles:
FDA Warns About Stem Cell Therapies (Nov 2017)
Concise Review: Stem Cell Therapies for Neuropathic Pain (from 2013)
I would love to see some clinical trials on stem cell therapy for peripheral neuropathy or any neuropathy for that matter. @carryme are you able to share a little more about your diagnosis?
Hello John ,
I am so happy to come to this group and make your acquaintance .
Out of all the groups I have joined you sir seem to be the most knowledgeable !
You are right about stem cell therapy .i see no one on the news claiming to be cured from any stem cell treatments . I came across a you tube interview with joe Rogan and Mel Gibson claiming that Mel Gibson’s 90 year old father who had every imaginable problem that a 90 year old could have .he had stem cell treatment and Mel Gibson claimed his father had recovered . I just didn’t understand what motive Mel Gibson would have to promote the stem cell therapy after all he’s a multi millionaire .
You mentioned nerve repair using conventional techniques . Could you share some more about that ?
I had an accident in the gym 11 years ago that put me in the hospital for 4 days with severe back pain , my back pain subsided and the only issue I had was nerve damage going through my groin into my inner left knee . For all 11 years it felt as if my knee was going to explode . I had going to PT and the physical therapist could actually see my shorts moving when the nerve would jump at my knee , last year I started feeling the tingling and numbness in my left Foot and started to have back and hip pain . The hip pain became so bad I opted for back surgery after my back surgeon told me it would fix me right up in all actuality it made things worse .
Now I have the tingling and the numbing in my right foot and sometimes in my hands .
I will post some of the links I have come across regarding stem cell therapy in my next post and hopefully we can discuss this even more , I do know that I came across a recent you tube video from the Mayo Clinic on stem cell therapy . I’m I remember it was dated this January
Unfortunately I’m not allowed to post links as of right now but the one that you might want to look at on YouTube is Joe Rogan interviews Mel Gibson
I know that these are controversial but I believe we as a group can move things ahead faster .
The one that gave me the greatest hope is the Mel Gibson interview . Just for the life of me could not understand why some one like him would come on a little pod cast show and promote this treatment
I truly believe big pharmaceutical can not let any of these stem cell treatment to come about
I just came upon one interesting you tube video regarding stem cell treatment as John has mentioned stem cell is controversial but you might want to check out the joe Rogan interviews Mel Gibson .
I’m hoping to create a dialog so members can look into more of this
There is also a you tube video with the Mayo Clinic docs from 10 months ago
You might want to search for that one too
Let me know what you think
Hi @carryme, I'm glad to electronically make your acquaintance too. I'm really not that knowledgeable but I do like doing my own research when it comes to things that impact my health or could help me. I think we all need to do our own research and be our own advocate.
Sometimes when things sound too good to be true they probably are…color me a skeptic and I really like Mel Gibson. Here's another link to the interview you mentioned from another perspective.
Deconstructing infomercial-like Joe Rogan stem cell video with Mel Gibson
Here are a few references I use to evaluate a new treatment that sounds too good to be true.
Quazar's guidance about avoiding scams and snake oil cures
FDA's Health Fraud Page
NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
The over the counter vitamins and minerals I take to help my neuropathy are not a cure. As far as I know there is no cure for neuropathy. That said, the protocol I take has helped my symptoms and seems to have stopped or slowed the progression and to me that's a win. Here's a link to my small fiber peripheral neuropathy journey in an earlier post on Connect that has a link to where I found them and what they are:
Best advice I have is to never give up hope, keep asking questions and learn as much as you can about your health condition.
Asking questions and networking is what I intend to do.
There was also a link from the Mayo Clinic on you tube .
It was about 10 months ago .
They weren’t talking about cure . I believe about moving forward with clinical trials .
Some one shared a link with me where we could start an online petition to hopefully bring some more awareness and I know there are more important causes but you never think about it untill it effects you .
I would be glad to start a petition if others would be interested ,the one petition would go world wide . It’s at change dot org …
I know this sounds tribal considering the worlds problems but again you never know . Please let me know if you or if any one is interested , and maybe some suggestions on wording
@stulerner As many people are coming here for advice, I feel it necessary to clarify one thing you said in your post: "It's a low-grade narcotic." My major was doctor of pharmacy and I tend to get pedantic when it comes to stuff like this so please don't take offense; with the current opioid epidemic, I feel it's necessary to make sure correct information and proper education are made available.
Buprenorphine is a partial opiate agonist (why some people think it's safer, less strong than other opioids). To give an example of the difference of partial agonists and full agonists, consider marijuana and synthetic cannabinoids known on the street as 'Spice' : THC in marijuana is a partial agonist at cannabinoid receptors and once concentrations reach a certain level, no more drug binds to receptors (no one has ever died from just marijuana). 'Spice', or synthetic cannabinoids are often full agonists, and the more one takes, the more hits receptors and it causes fever, psychosis (anecdotes from nurses and ER staff describe extreme aggression, dissociation, and cannibalistic actions [those stories you hear about high people taking bites out of their significant others are not urban legends, they're real and a major reason why the product that was once available at gas stations is now illegal). This is NOT a perfect example… the fact that buprenorphine is only a partial and not a full agonist DOES NOT mean that it is safer and unable to kill you. Any number of factors can cause it to be fatal such as respiratory depression from mixing it with other CNS depressants, being abused/being taken by an opiate naive patient, and the list goes on. I'm sure your doctor and or pharmacist counseled you on this, but be sure to dispose of the used patches appropriately by folding them (adhesive and drug side in the center) and disposing of them in a manner that prevents them from accidental exposure to anyone or from trying to abuse them. You'd be amazed what desperate people who are addicted to opiates will do to avoid withdrawal.
Even though buprenorphine is only a partial-agonist, its affinity for opiate receptors (how strongly the drug binds to the receptor) is so strong that a patient taking buprenorphine who finds themselves in severe pain from an accident or needing surgery, commonly used opiates like morphine cannot knock buprenorphine out of the opiate receptor and will have no effect. For this reason, ERs and hospitals have been known to keep an opioid called sufentanil on hand. Sufentanil is 500-1,000 times stronger relative to oral morphine (fentanyl is 50-100) with a stronger receptor affinity so that it can knock buprenorphine out of the receptor and provide analgesia to the patient. This is a very complex issue for anesthesiologists as it's not an every day issue they run into, nor does every hospital carry sufentanil. They need to take into account a patient's weight, the dose, route of administration, and length of time a patient has been on buprenorphine (possibly even obtaining drug/drug metabolite concentrations from blood/urine if time allows and the situation calls for it).
Sublingual buprenorphine is 40 times stronger relative to oral morphine; not a 'low-grade narcotic' by any means (and the term 'low-grade narcotic' is misleading; it's not medically descriptive nor is it a term that medical professionals use. It's vague and can lead one into, wrongly, thinking it's describing strength, binding affinity, risk, side effects, abuse potential, addiction potential, etc. It does not attempt to describe any one characteristic of any opioid and is dangerous). It carries the same risks, addiction/abuse potential as other opioids. To compare, oral oxycodone is 1.5 times stronger than morphine.
(Sublingual absorption of medications, very generally speaking, is similar to transdermal in that it bypasses the gastrointestinal system and is absorbed into the blood stream.)
Buprenorphine is expensive and often needs a prior authorization as it is not usually covered by insurances (I started off on sublingual buprenorphine until I had to switch insurances). Double check with your insurance company if a doctor says they submitted a prior authorization and it was denied… mine is an isolated case (I've worked in pharmacies since I was 16 [I'm 32]), but the doctor who prescribed it for me was understaffed and I found out from my insurance company that he/his office did not submit a prior authorization despite telling me he did and it was denied.
Many people think sublingual buprenorphine is Suboxone (Suboxone is buprenorphine AND naloxone and used for opioid dependence; solo sublingual buprenorphine (Subutex) does not have the opioid antagonist naloxone in it).
It's awesome that transdermal buprenorphine (Butrans) has provided you the level of pain relief that it has! I hope you don't take offense to my post or think I was singling you out to pick on. I just joined this group, and have made similar posts as I worry about misinformation being spread; most especially when it's referring to opioids.
For more information on transdermal buprenorphine (Butrans), talk to you doctor, pharmacist, and/or navigate to butrans dot com.
(I have never worked for a pharmaceutical company in case anyone had concern I may have a conflict of interest; I neither promote, nor discourage opioid use in patients who are deemed medically and psychologically appropriate for them and without a personal or family history of addiction of any kind. Before taking or discontinuing any medication, talk to your doctor/doctors and pharmacist about their risks versus benefits, any contraindications you may have, adverse reactions you may experience, and potential interactions with other drugs, food, or supplements you may be taking).
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