(Thanks to Pinetree for providing her success story and personal recommendations. This blog was written by her and edited by me (Cort))
A success story is always a remarkable thing to hear. Pinetree still has chronic fatigue syndrome (ME/CFS), she’s not ‘normal’ or cured, but a single treatment has made a remarkable difference in her life.
Pinetree was spending most her time in bed
A year ago, she was bedridden and needed help with just about everything; showering, cooking meals, shopping, tending to her hair, etc. Now her bed is for sleeping at night, she is able to care for herself, and is starting to look for a job. The brain fog, the headaches, the severe pain, the overwhelming post-exertional malaise, the depression are gone!
The really remarkable thing about Pinetree’s success is how simple, in the end, it was. After trying dozens of treatments, it took one substance which clicked physiologically with her and she was on her way.
Pinetree’s Story
Before she came down with ME/CFS Pinetree was an active person; surfing, playing tennis, going for bike rides and nice long walks on the beach. She was going to college part time and working full time doing hard physical labor, bending down, lifting things up, and carrying heavy boxes as a stocker at the Dollar Tree.
If there was a trigger, Pinetree believes it was either Epstein-Barr virus (EBV) infection and/or a series of car crashes. Tests showed she had very high levels of antibodies to EBV but they could not tell when she’d contracted it. If she contracted EBV recently, though, it could easily have triggered her ME/CFS. While children usually easily fight off an EBV infection, adolescent/adults have a much more difficult time fighting it off. The other possible incidents were two traumatic car crashes in which she walked away uninjured.
Supplements
She tried many, many different kinds of supplements with limited success.
After she became ill Pinetree did not stint on treatments. She did her homework and tried many, many supplements. They included L-carnitine, Carnitine complex (L-carnitine fumurate, Acetyl-L-carnitine, Glycine propionyl L-carnitine, and Acetyl-L-carnitine taurinate), CoQ10 in the form of Ubidecarone, R-lipoic Acid with Bioenhanced na-RALA, Magnesium Glycinate, Magnesium Malate, B12 in the form of Adenocobalamin, D-ribose, Branched Chain Amino Acids, Liquid Vitamin D, Multivitamin with 26 vitamins and minerals including silicon, lycopene, lutein, boron, vanadium and nickel, Vitamin B complex, lypo-spheric B- complex, PQQ, Rhodiola Rosea, Milk Thistle, Potassium Citrate powder, ENANA NADH, Oat Straw, Avena Sativa, Lemon Balm, Zinc Picolinate, Chamomile extract capsules, Acai capsules, Hops, combination Methylb12/ Methyl Folate with p-5-p lozenges, Olive Leaf Extract capsules, Grape seed, Whey protein Powder, Pea Protein Powder, Valerian Root extract capsules, Cranberry extract capsules, Turmeric Extract Capsules, Poppy Seed Extract Capsules, Fish Oil, Flaxseed Oil, Vitamin B12 injections from a doctor, probiotics, Coconut Oil Capsules, MCT oil, Panthenine, Niacinamide, Vitamin B1 by itself, Vitamin B2 by itself, Vitamin B3 by itself.
The ONLY supplements that produced any major long-lasting improvements were B vitamins, PQQ (pyrroloquinoline quinone), Coq10, and CBD oil. All other supplements either had no effect, made her worse, or were not worth the money.
She was still housebound and occasionally bedbound, and suffered from headaches, severe fatigue, back pain, and un-refreshing sleep but she was better off than she had been.
Her current supplement regimen is Vitamin B1 (Thiamin) 500mg, Vitamin B2 (Riboflavin) 100mg, Niacinamide 300mg (non-flush niacin), PQQ (pyrroloquinoline quinone), Magnesium Malate 325mg, Fish oil 4/day, Flaxseed oil 2/day, Zinc Picolinate 50mg, Multivitamin from Costco, B-Complex from Costco (3 a day, all taken in the morning), probiotics, and CoQ10.
(See Pinetree’s Supplement Suggestions at the bottom)
The Difference Maker: Cannabidiol – CBD Oil
She’d known about cannabidiol or CBD Oil for years, but until recently it was too costly to try.
Many people have tried CBD oil but have not gotten the results Pinetree has. She believes some may have simply made some mistakes along the way which prevented them from getting an optimal benefit.
Pinetree’s ME/CFS CBD Oil Tips ‘N Tricks
Bioavailability
CBD has different bioavailability rates. Bioavailability refers to the fraction of a substance that actually reaches your systemic circulation. That means that when you ingest, smoke, hold under the tongue (sublingual), or topically apply CBD, you are only getting a fraction of the CBD found in the product.
CBD Absorption rates:
- Orally (swallowing): roughly 5-20%
- Smoking/vaping: 40-90%
- Sublingual (under the tongue): 20-50% +
- Topically: unknown but transdermally, 70-90%.
As an example, if you take 10 mg of CBD oil, here are the amounts you will TRULY get with each method:
- Orally: 0.5 to 2 mg
- Smoking/vaping: 4-9 mg
- Sublingual: 2-5+ mg
- Transdermal topical: 7-9 mg.
Differences in the Endocannabinoid System
A person’s response to CBD oil depends in part on how their endocannabinoid systems respond to it. Some people’s endocannabinoid systems simply respond more efficiently to CBD oil (less oil is needed) than others. Plus, people who have never smoked weed nor taken CBD or THC may be less responsive at first as well.
A drop of cannabis oil
It’s important to note that most people will not feel the true/full potential of the CBD immediately because it needs to be built up in the body – a process that can take anywhere from 2 days to 6 weeks.
To get better, longer lasting effects, take CBD oil every day. Remember that if stress on the body is sustained, then treatment needs to be sustained as well. This is especially true for people with chronic ailments such as chronic fatigue syndrome (ME/CFS).
Tolerance – It may be possible to develop a tolerance to CBD. That means you may not feel it as well as you did before with continued use. If you find that this is happening, use your CBD irregularly or discontinue use for an extended amount of time and this will help with tolerance.
Full Spectrum vs Isolated CBD Oil
As noted above, many more cannabinoids are present in marijuana and hemp than just THC and CBD. These cannabinoids work synergistically with each other and basically potentiate your CBD product so that it works better.
- Full Spectrum – Full spectrum means different things to different people, but it does mean that cannabinoids in addition to CBD (such as CBN, CBG, CBC, CBDA, CBDV, THCA, THCV) are present. By checking the potency lab results when buying full spectrum CBD products, you can tell what kind of cannabinoids and how many mg/ml of each is in your CBD product.
- CBD Isolate – means that your CBD product only has CBD in it. (Most isolates still do contain very trace amounts of THC, so be careful if you are getting drug tested. Make sure lab results prove a 0% THC content.)
- Using Sublingual CBD – If you take the sublingual route, Pinetree suggests that you hold it under your tongue for at least 5 minutes. All companies she knows say to hold it for 30 to 90 seconds but for her that is not enough time! She’s confident you will see a difference in holding it under your tongue longer. Her own personal, optimal time is 10-15 minutes for best absorption. You should experiment with the amount of time that’s best for you.
If you choose the sublingual route but find that you cannot hold it for longer than 1 minute, swish it around in your mouth. Your gums, cheeks, and other parts of the mouth can still absorb CBD. Fun fact: if your CBD product has coconut oil in it, coconut oil is an antibacterial which will help reduce bad breath!
Side Effects
Some people experience gastrointestinal distress with CBD products. If this is happening to you, do not be alarmed. Check your CBD product ingredients to see if there’s something in the product that could be causing it. Hemp seed oil, olive oil, and coconut oil are examples of carrier oils that can irritate the stomach. If you still have gastrointestinal stress with CBD, hold it in your mouth for the required time, then spit it out.
Be Safe – CBD is a drug. CBD may not work for everybody. Some people may be allergic to CBD or the carrier oil. CBD can have side effects. Even odd side effects can pop up at times. Discontinue use if you have side effects that are unbearable and consult your doctor.
BE CAREFUL AND BE AWARE. DO NOT TAKE MORE THAN 1,000MG CBD A DAY UNLESS YOU HAVE A DISEASE SUCH AS SCHIZOPHRENIA OR EPILEPSY. ALWAYS CONSULT YOUR DOCTOR.
Although there have been no (reported) fatal overdoses on CBD, and reports have confirmed doses of CBD up to 1,500 mg are effectively safe for humans, there have not been enough studies to prove it’s 100% safe in high doses for long periods.
- Take Extra Care When Smoking or Vaping CBD – Some CBD products can irritate the lining of the throat or irritate the lungs. Some have dangerous chemicals in them. Please educate yourself on vaping and smoking CBD.
- Research Your Brand – She’s heard scary stories and read scary articles about companies putting synthetic cannabinoids or synthetic chemicals into CBD vape and passing it off as natural.
Many CBD companies only test for potency. Because hemp is a known bio-accumulator, it has the ability to suck up toxins from the soil. If you want to be safe, check lab results for heavy metals and harsh solvents.
She uses 1 ml (which works out to about 20mg of available CBD) of CBD in the morning and 1 ml at night. Her body takes in about 40mg of CBD oil a day.
Encourage Testing
If you are using a CBD brand that works for you – but they do not test their products – she encourages you to reach out to those companies and gently encourage them to test their products. Those companies will receive more widespread attention and consumers will be more apt to buy their CBD products with labs.
Try Other Brands if Necessary
If you are getting undesirable effects from your CBD, do not give up. Different CBD brands affect people differently. Some CBD oils are uplifting; others are sedating. Keep trying different brands until you find the brand you like the best. CBD oils are not created equally. Do not assume a CBD oil will work even if “you have the best quality CBD around because you bought it from a clinic and the person who sold it to you says it’s very high quality”.
CBD is still in its infancy and we as consumers can change the industry by making sure those products are safe for consumption.
Remember, CBD is not federally regulated, so any company can throw oil/tincture in a bottle, or throw liquid in a cartridge, or make a topical, and claim it is lab-tested and that it has the claimed amount of CBD.
Pinetree’s Tips for Choosing the Best Supplements
CBD oil provided Pinetree her big breakthrough, but she did get help from supplements and tried a lot of them. Check out her suggestions for getting the best use out of supplements.
1. Focus – If you’re going to try supplements, focus on your two biggest problems (e.g. sleep and pain), research the supplements that are helpful for those problems, and try them. Don’t try to attack everything at once.
2. Carefully read labels – Different companies, for example, produce different kinds of B-complex. Company A has vitamin B1, B2, B3, B5, B6, B9, B12 while company B adds PABA to the mix. What is PABA? It is technically a B vitamin not found in most B-complexes. PABA may hurt or benefit you and could make the difference between no improvement and great improvement.
3. Don’t give up – Pinetree tried five different B-complexes from five different companies before she found one that worked for her. Even though technically she was buying the same kind of vitamin, the brand made a difference, perhaps because of its quality.
Quality
Pinetree reported that only two vitamin companies (Costco, Nature Made) come with the USP Seal which indicates that the product:
- Actually contains the ingredients in the declared potency and amounts listed on the label. Tests have shown this isn’t always true.
- Does not contain harmful levels of specified contaminants such a heavy metals (e.g., lead and mercury), microbes, pesticides, or other contaminants.
- Will break down and release into the body within a specified amount of time. USP Dietary Supplement Verification tests products against federally-recognized dissolution standards.
- Has been produced according to FDA current Good Manufacturing Practices using sanitary and well-controlled and documented procedures; i.e quality controls are in place.
Pinetree believes that low quality vitamins are a major reason why some people get negative reactions or don’t see any significant improvements with their vitamin supplements.
Be Willing to Experiment with Dosage – typical dosages listed in the Supplement Facts are dosages for HEALTHY people. If you’re deficient in a certain vitamin or mineral, or your body does not utilize a certain vitamin or mineral correctly, you may need 2 – 5 times the dosage listed on the bottle. As an example, she takes 3 vitamin B-complex pills a day. Taking 1 or 2 a day does nothing but taking 3 a day makes a whole world of difference; she sleeps better. She actually gets refreshing sleep now (!) and wakes up feeling like she’s ready for the day.
Of course, start low and go slow, and work your way up. Be aware of possible side effects.
- Next up – a deep dive into CBD Oil – types to take for pain, how to use it, strategies for best use
- Check out Health Rising’s Cannabis / Medical Marijuana resources including How to use Medical Marijuana Without Getting High by Donna Gregory Burch
Q- I experience a “hangover” the next day after using CBD oil…feeling extra fatigue…… any “cure” for that side effect? Anyone? thanks so much.
I’ll be digging more into CBD oil in some books and video’s and will look for an answer.
CBD oil helps me sleep by really dry’s out my eyes.
I thought my severe EM/CFS may be the result of possible Lyme & a dis-barred physician recommended CBD orally for that.
Oh boy! Did my body react, even with very low doses!
I had major diarrhera & it did absolutely nothing for my ME/CFS symptoms.
I took it for maybe 2 months thinking it may be a herxheimer reaction, but apparently it wasn’t.
Caution is necessary.
Try it.
If you don’t see an improvements, stop taking it.
cannabis is a demulcent laxative per two of my herb books.
I’m not surprised that some people are having a bad reaction to it. That seems to be the case with every single treatment – what works for one person has horrible effects on another. The adage to start low and go slow comes to mind.
One thing I am learning, though, is the wide variability that exists amongst CBD strains and products. The efficacy differences can be huge. More on the next blog
Try taking your dose around 6pm to avoid the hangover feeling. Experiment with dose, more is not necessarily better.
So ‘queasy’ about all the info/misinfo regarding CBD et al. When will it all really be sorted out? and then, adding in the info/misinfo about all possible supplements, can leave ones’s mind in a daze!!
Its too high of a dose. Lower your dose
One thing to be aware of with CBD is that it lowers cortisol, and cortisol levels seem to already be low in people with ME. Low cortisol contributes to severe fatigue and when cortisol is low, the immune system ramps up (as cortisol is immunosuppressant). In my experience, too much CBD makes my fatigue much much worse. However a small amount I find incredibly helpful most of the time. I also have found that specific types of CBD are more helpful to me – a CBG rich formula is great for inflammation. Really helps my nausea and gut issues. So my suggestion is to microdose. It’s definitely worth trying out folks… But start low and build up very slowly. The half life of CBD is 2-5 days so it can build up in the system too. Im going to try vaporising it in small doses and perhaps only using it every second day. Vaporising seems to give a bit more control over dosage as one inhale on my vape pen is the same as half a drop of CBD. And vaporising has a slightly shorter half life than taking it orally .. good luck everyone xxxxx
I have ME/CFS and my cortisol has always been high. Everyone is different. Topical CBD works beautifully for me when my neck flares up – it is the best pain reliever I’ve found for acute joint pain. I also love CBD bath bombs.
Thank you for sharing info/story.
CBD oil is definitely helpful for nausea and headaches caused by my IVIG treatment, but it is not a cure for ME/CFS.
I take mostly Thorne Research products which have the highest standards in the industry – here is a description of their quality standards, which woukd be useful to compare to your favorite supplement company’s standards.
https://www.thorne.com/quality
Also, I believe the NADH product you referred to is by Enada, not ENAMA. While I found it more useful than the nicotinamide riboside products out there, LIAS Research NAD+ has been superior to either in increasing ATP production.
Did you have any effect of your IVIG treatment?
Be aware also that CBD also interferes with the cytochrome p450 metabolism in the liver, it therefore will cause certain drugs (in my case Topamax) to last longer.
Thanks Gregory, this can be crucial info! I have been tested for the CYP450 genome and know that that it causes difficulty metabolizing most pain and antidepressent meds. Fortunately, I have a psychiatrist who oversees my pain and anxiety related meds and always makes sure that any meds related to chronic fibro pain/ anxiety due to ramped up central nervous system stuff are compatible.
I did look at this and found that CYP2C19 and CYP3A4 were mainly involved with clearing CBD from the liver.
Unfortunately this does mean the levels of many pharmaceutical drugs can be affected which might well cause issues for some people. Not that I believe this is a reason not to try it but to be very aware that one’s regular medication might be affected.
I am steroid dependent and have to take thyroid medication so this is key for me.
I take a bunch of medications that are processed by the CYP enzymes, too, and to solve the problem, I used forms of CBD that bypassed the digestive system and went straight to the bloodstream. So I can’t use edibles, or swallow tinctures. I didn’t like the vaping choice, but that’s the way I went, because it had the least interaction with the liver enzymes. If you hold a tincture in your mouth, then spit it out, that should work as well, because you’re absorbing the CBD through the blood vessels in your mouth – it’s going to your bloodstream and bypassing the digestive system, so it doesn’t enter the liver, right? Are my ideas about this correct?
Pinetree’s experience is very interesting to read as I have recently started taking cbd oil for ME and FM but am still struggling with precise dosages etc. I didn’t realise so little of the total dose is actually absorbed ( After starting with 8mg and 10mg CBD oils I now take 15mg full spectrum twice a day but thrice is often a bit too much) so I will take her advice about holding it under the tongue for longer and adjust accordingly. So far it has had similar effects for me as for Pinetree but without the nasty side effects of prescribed painkillers like Lyrica and opioids. I am trying to manage with just paracetamol, basic multivitamins and the cbd oil. I should like to hear what other people’s experience is too as so often with ME/FM medicines are either far too strong or not absorbed adequately. Thank you Cort for editing and presenting Pinetree’s blog here and of course thank you Pinetree!
Hi Jennifer.
I’ve just bought my first 10ml bottle of cbd oil (though they call it hemp – I’m still a bit confused about the whole thing..
But my question is if I have an oil, how many drops do you take as a dose. It is talked about in ml so I’m not sure how that translates into drops.
Any thoughts appreciated!
Tracey
We’ll have a blog coming out on this soon Tracey. It’s rather complicated. It depends on what the CBD is placed in and how potent it is. In general start low and slow. If its a tincture 25-30 drops = about 1 ml.
Hemp and marijuana are two different plants, although they are in the same family. Hemp has a much lower percentage of THC, which is the psychoactive part of the marijuana plant that gets people high. CBD Oil made from the hemp plant has .3% THC (1/3rd of 1%). It is also available THC free. I agree that it is confusing. December 2018, Hemp became legal in the US and is under the Farm Bill of 2018.
Thank you so much for this post today. It is my birthday and I woke up with such unusual miserable sickness that I felt ready for the “end”. But the news from Pinetree was just what I needed to read. Thank you so much for recreating a sense of hope. I have been battling this monster for 34 years, sometimes with reprieves and usually with abject pain and exhaustion. But I am so grateful that you are trying your best to help conquer this scourge.
Sorry to hear you’re having such a difficult time Susan. This post is helpful for me as well because it demonstrates to me that there are things out there that are available that might REALLY be helpful. I never dreamed that CBD oil could be so helpful.
We’ll have an other CBD ME/CFS/FM success story coming up and stay tuned for an in-depth dive on CBD soon.
Meanwhile here are some birthday wishes coming your way! 🙂
Can you explain how Pinetree was able to take three doses of Vitamin B Complex without getting Vitamin B6 poisoning?
I tried a 16% CBD paste. I deteriorated signficantly. I am loathe to try again as it made me so ill.
Also, unless I missed it, I can’t see any info on how long Pinetreewax was ill before trying her vitamin supps and CBD? Thank you.
Any good leads on truly safe and effective CBD products and companies in the US?
I will have some information on that in the next blog.
Great article. I wanted to share that Cannimed is a company based in Saskatchewan, Canada that has high quality CBD. They do third party independent testing. They have a CBD oil that is 20 parts CBD to 1 part THC. My doctor flew there to check out their facility and was impressed.
Remember too that cannabis plants are grown in high humidity. This means mildew is possible. A few facilities in Canada were found using a banned fungicide – surely this is not just limited to Canada. The manufacturer really matters.
I agree with a previous comment on Thorne- very high quality, gluten free, soy free, no fillers which some people react to, tested independently.
Will your next blog show up on this site or do I need to sign up for it separately?
It will show up here but I recommend that you subscribe to the newsletter – lots of stuff coming down the pike.
I can recommend you the Swiss quality! You can shop in the US as well. https://formulaswiss.com/collections/buy-cbd-oil
I just posted this comment as regards my experience with CBD
I thought my severe EM/CFS may be the result of possible Lyme & a dis-barred physician recommended CBD orally for that.
Oh boy! Did my body react, even with very low doses!
I had major diarrhera & it did absolutely nothing for my ME/CFS symptoms.
I took it for maybe 2 months thinking it may be a herxheimer reaction, but apparently it wasn’t.
Caution is necessary.
Try it.
If you don’t see an improvements, stop taking it.
The CBD oil businesses are not regulated so who knows what you are getting in the oil or balm! You can google for information on the best products that do lab testing and removal of contaminants, I probably shouldn’t share this but I will – the best CDB oil is from Bluebird Botanicals out of Colorado. I receive it via mail here in Hawaii. I use it for sleep, pain and relaxation.
Thanks for sharing Amy!
After reading about Pinetree’s protocol, I’m ready to re-open up the drawer holding all the various cannabis products I have tried (and thought I have failed). I do know that usually herbal and supplement trials may take a while to ‘kick in.’ What I didn’t know was the bioavailability of each method. Guess I need to experiment some more…
As far as medical cannabis goes, low to no THC and CBD products are, for me, not very good for pain, but great for helping me get a good night’s sleep. Let’s see if there is more to get out of this helpful little plant!
As far as the other list goes, I can say I have tried almost all of them myself and find NADH and niacinamide are the supplements which give me the most rapid and energetic response (in addition to caffeine–which at this point I consider a ‘food’). I do also notice a response from ‘Energy Shot’ drinks, although many think they are not so healthy. As for prescription medicines, Modafinl and Amphetamine Salts ER also work (Adderall)–until they don’t.
I really hate to ‘gun’ my body to push though things–which I had to do for Thanksgiving cooking. Yesterday and today I am paying the price.
So, thanks, Pinetree, I’m opening my cannabis drawer again…
I’m fascinated by her supplement regimen. I wonder which ones help her the most. How much fish oil does she take? What do the Niacinamide 300mg (non-flush niacin), PQQ (pyrroloquinoline quinone) do? Thanks for any input.
Thanks Pinetree for going into detail. Details sure do make often quite a difference in success or failure.
As cannabis or their derivatives have good muscle relaxing properties for some people, and as one of my clear and gradual improvements directly resulted from techniques to relax my muscles I wonder:
Did you (Pinetree) or others who have good results with CBD had clearly more relaxed / less stiff muscles (with special attention to the upper back / shoulder / neck) as the early results almost immediately followed by less neuralgic pain and a clearer head?
IIRC, some people with ME get improvements in both pain and energy with muscle relaxing meds although in healthy people they are causing excessive sleepiness.
Thx for any response,
dejurgen
I haven’t tried CBD oil but have found high THC cannabis super relaxing and pain reducing.
I have a prescription for CBD but anything over 2 ml a day gives me restless legs at night so no sleep. The doctor said I needed to be on at least 3 ml a day.
For me Vitamin Bs keep me from being able to nap in the afternoon which is crucial for me.
Great article though!!!
I’ve had me/CFS for 15 years now. After doing much research, I tried cbd oil and I got terrible headaches from it. I also had the opposite affect and it made me anxious. Any specific brands to recommend? It’s so confusing out there! Always willling to try again.
Thanks!
I had bad anxiety too when I tried taking a capsule of the lower strength that Healthspan do here in the UK. It was obviously too much for me.
However recently they have just brought out a CBD oil with a dropper and this seemed ok for me but I kept experiencing dizziness. It turned out I had an ear infection developing and needed antibiotics so stopped the CBD oil to see if the dizziness improved. Its only 2 days since stopping it and I am still getting a bit of dizziness in the mornings so it might well not be the CBD oil. I am going to try again when I am off the antibiotics as I have a tendency for severe chronic migraines.
Some CBD products are good at reducing anxiety. More on that later.
I found normal recreational marijuana possibly significantly contributed to me developing ME/CFS when I was 17.
It was because in New Zealand the cannabis here is way too high in THC with low CBD. It’s well known that a certain percentage of people get paranoid smoking or consuming pot. I used to pretty much trip out on it. Eventually the paranoia was overwhelming and continued when not stoned. I believe that was the ‘stressor’ that upset my HPA axis and then a viral hit tipped me over into the awful world of ME/CFS.
However I would like to try CBD oil if I could get it in a pure form with very little or no THC.
THC in marijuana can often cause an increase in heart rate too, which is a form of exertion. So to those considering CBD oil, please don’t assume you’ll get it from standard cannabis or even cannabis oil. Your better off getting true tested CBD oil.
Or you could end up feeling worse. as THC inhances the senses in some people.
Also many people will say they never had this experience with standard cannabis or the oil, but that doesn’t mean it doesn’t happen. I’ve recently tried some a friend said was CBD oil and it made every sensation much worse. I could feel it had THC in it as I can’t stand that feeling. The flu like symptoms doubled in intensity. I know though that pure CBD oil does the opposite.
I stopped smoking the weed decades ago because of the paranoia issues but thankfully I’m not having those issues with high THC candies. It just takes a little bit to put me out for the night. I did take too much once – the night before an ME/CFS conference actually – and it amped my hearing to an incredible degree. It was really eerie…
Be aware that Hemp or CBD Oil is not legal to purchase in every state, Alabama being one of them, so check the legality in your state before ordering them, even if the products do not contain THC.
Been using the following for two months and noticed substantial improvement (after 30 years with ME/CFS and fibro but one brand doesn’t address all my issues so use two different brands but will add a third brand to address pain. Start low and go slow.
For sleep: Liposomal 3 squirts sublingual at night. https://www.prohealth.com/shop/p/prohealth-full-spectrum-hemp-oil-1-oz-ph512
For Anxiety and brain fog: 3 drops sublingual in the morning. 350 MG CBD Oil https://www.greenroadsworld.com (Recommended by rheumatologist who orders from this company)
For Pain and Anxiety: 350 MG CBD Oil 3 drops sublingual https://ambarygardens.com (Haven’t tried this one yet but my elderly relatives swear it relieves their arthritis pain and anxiety. They have completely gone off their regular pain medications within three weeks.)
Thanks for sharing that Pat and congrats on your progress.
Hi
The link to the liposomal for ‘sleep’ has nothing on the page? I dug out my CBC oil last night and took just two drops under the tongue, held it there for 10 mins (this was just prior to bed in the hopes of some desperately needed sleep). Mistake. I was up half the night, couldn’t sleep, wired, fretful and light sleep when I did dose off. I’m sure it was the CBD oil.
My question, can anyone recommend ‘which CBD oil to use/buy for sleep please? I have a dreadful time getting any ‘normal’ deep sleep, but can’t risk using this CBD oil I have again. I know some strains are better for sleep. I’m in the UK and sadly it’s not as easily available as it is in CA. Any guidance appreciated.
Hi. Have been dealing with CFS since 1985. I am male. Had a reactivation, and dealing with major symptoms for almost a year: major tinnitus, brain fog nerve weakness symptoms. Any suggestions what to take?
I have been looking into CBD oil here in Canada, waiting for my prescription to come. My doctor recommended a company that has been regulated for some years. So reading this blog has raised my hopes. After 15 years I figure most things are worth a try.
A book that I found really helpful is CBD; a patient’s guide to medicinal cannabis by Leonard Leinow andJuliana Birnbaum.
Thanks to Pinetree for the comprehensive info on the use of CBD and the list of supplements some of which I haven’t tried. I am very impressed with the list of what did and didn’t work. Keeping track of this when you were really struggling is so good, I envy your organization.
Thanks Cort for keeping the information coming on so many varied topics.
What brand are you using? My friend made her own CBD years ago which made me sleepy. She no longer does it. I need something that wakes me up enough to get out of bed. I’ve lost years of my life. Thanks
Do you know what dose the person in their article was taking? I’ve been taking 20mg/d and it is helping a bit, but the max dose mentioned in this post is 1000 mg!! Is there are greater benefit with very high doses?
Does anyone know the mechanism(s) by which cannabanoids help reverse symptoms of ME/CFS? Also, what specific benefits of CBDs have been reported by those lucky enough to experience them?
I will have something on how CBD is believed to work in the next blog. 🙂 Some progress was very recently made – https://www.thestar.com/news/cannabis/2018/11/24/researchers-smoke-out-the-genes-that-give-cannabis-its-kick.html?source=newsletter&utm_source=ts_nl&utm_medium=email&utm_email=99699F7B84D57A72F3DBAC48BDBFF279&utm_campaign=tmh_7305&utm_content=a04
There is an endocannabinoid system in the body that is new to discovery but is ancient in us. Similar to how endogenous opioids they we naturally make,the endocannabinoid system helps with pain and mood regulation. It also appears to reduce inflammation. It also helps with sleep. If people sleep better, it helps reduce pain, allows the body to heal more easily and inflammatory messengers are quieted.
I tried a very low dose of medical marajuana first, but the THC in it amped up my tinnitus to screeching level. I’ve been trying CBD hemp full spectrum now for two months, but had to start with one drop shaken in water spread over three days and slowly build to 3 drops of 300 mg. Under the tongue made me tense and caused intenseleg spasms. I put it on a banana slice and can handle that dose. I plan to try going higher slowly again. So far I’ve not noticed improvement with pain or symptoms.I’m giving it more time since jt’s only been about three or four weeks on this feally low three drop dose.
I’ve had a fairly major turnaround the last couple of weeks. For what it’s worth, the most recent changes were a Keto Diet two months ago (with daily blood testing to confirm ketosis), sub-lingual CBD for the last 3 weeks, and high-dose biotin for a week.
It is quite difficult running controlled experiments with a sample size of one desperate person.
My case was slow onset and short-lived severe episodes for a couple of decades, then being left bedbound about a year ago after an infection. Have the full gamut of symptoms- cognitive, particularly linguistic, insomnia, panic, muscle pain, and weakness to the point of physical collapse.
I’ve been slowly improving for a few months, going back to work part time mostly from home (I am quite privileged to be able to do that). But the last couple of weeks have been amazing. Left my wheelchair at home for the first time since I got it.
I can see something’s shifted from my Fitbit. My heart rate is 30 beats slower for just about any activity. I was hitting 120 just from standing up. For the last week it takes quite some exertion to get me close to my 95-100bpm anaerobic threshold.
What a turnaround! That Fitbit data is just amazing….all from a relatively simple if not always easy program. Good luck and please keep us informed.
Hi Anon,
Would you have been a hypothermia or at least low body temperature patient before? If so, would your body temperature have improved significantly these last 3 weeks? Did you experience a quick improvement (jump) in muscle relaxation 3 weeks ago?
thx for any comment,
dejurgen
I know this is sort of off topic but I wanted to say that just the plain CBD oil at the right dose is very powerful and beneficial in some cases.
Last week my 6 year old beloved Beagle Snoopy developed horrid seizures. He had 3 in 24 hours. Blood work was perfect but my vet wanted him to have scans and maybe an MRI which would have cost thousands of pounds.
I had by then Googled CBD oil for dogs and epilepsy and immediately started him on the lower dose capsule which contains 8 drops, one with his breakfast and one with evening meal.
Within 12 hours of the first dose he looked a different dog, more like his old self. He just had one minor seizure the first full day of the CBD oil. That was a week ago tomorrow and so far so good. We have back our normal lively Snoopy, nobody would know there is anything wrong with him and I am sort of pleased that I videoed his last attack, otherwise I think I might have dreamt it all.
Truly amazing stuff. There is no THC in this Healthspan product and I understand that they will soon be bringing out a CBD oil for dogs.
Sorry if I have annoyed anybody by posting his story I just wish it would do the same for all of us with ME/CFS.
Not at all Pam. That demonstrates the power of this oil when it works. A well-known brand of CBD oil called Charlotte’s Web (lots of stories on it) did the same for a young child. His horrendous seizures stopped.
Thanks for sharing that. 🙂
If possible, since Pinetree has tried out many different brands of supplements, could we find out the brands she finally found the most helpful? I think that would be a great service to the readers. There can be a big difference between one supplement’s bioavailability and another’s. She said she tried the Ubidercarone form of CoQ10 but is that the form she stayed with?
Dystonia symptoms (tremors), Headaches, and Sleep.
I’ve had ME for 23 years. I began having visible hand and arm tremors. I always have internal tremors when overdoing, but these symptoms are different. I know quite a few people who get severe dystonia. A good friend of mine who has been through pure hell with dystonia recommended CBD. Of all the most powerful drugs she has been given the CBD has worked well. Her case is severe and CBD hasn’t cured her, but it’s reduced her tremors and jerking.
After gradually building up the dose of CBD my tremors have gone away. They only returned when I ran out of my brand and bought a very expensive one from a health food store whose owner said it works for people with MS. It didn’t work for me. I’m at 1000 ml and take it before going to sleep. It helps with sleeping too. Also, on occasion I will take a small amount for anxiety or a headache. I’m still mostly bedridden but I consider this a success story. Dystonia looks like Parkinson’s if severe. Hopefully, it will continue to work. It’s been about 8 months and still no tremors. I no longer get the terrible internal tremors either.
Very surprised by the negative reactions posted here. I don’t know what people are consuming, but CBD has been a life-saver here in California, where we have a lot of experience with it. I can now grow my own CBD and make my own tincture, and there is nothing better for chronic body pain from my point of view. Wishing everyone the best in their pursuit of health.
I agree Robert. Very surprised and sorry to read about negative effects for some folks. We are especially spoiled here in Humboldt County, CA, with a history of quality products grown and produced here. Going to sound like an advertisement down below, and am not connected to any products.
I recommend Care By Design CBD products if you are in CA. Even if you are out of state, there is a lot of info on the website: http://www.cbd.org. I think THC has helped me as much if not more than CBD over the years, for ME/CFS related pain, stress and irritability. Hope people don’t avoid it due to the old reefer madness BS. It appears to be an important component in CBD products.
My best experience with CBD has been with topical applications for addressing trigger point pain. Currently using a lotion made by Humble Flower Co. 100mg CBD + 50mg THC. http://www.humbleflowerco.com, also only sold in CA.
I am on a roll here in my 12th year, but it is an amino acid that is doing the trick for me right now: L-tyrosine (a.m.) + Phosphatidyl Serine to help my body produce dopamine is the biggest thing in my life since I tried Huperzine A a year ago. Researching MS symptoms led me to work on my perceived dopamine deficit. The malaise has been greatly relieved. I am motivated and upbeat, a lot of the time, instead of staring at the walls.
One day, recently, I told my husband that I did not feel well but did not care. Continuing to putter around the house, when I don’t feel well can often help shorten the relapse period. The other supplements I take: A great liquid multi-vitamin complex by Nature’s Way, Alive!, which is full of other good stuff besides the B complex I prefer in liquid form. It is “max potency” so I take 1/2 dose (1 TBSP) in the a.m.
I take fish oil, curcumin, K2 and CoQ10 capsules at lunch time. Sublingual L-theanine at bedtime. I took Ashwagandha (and still do occasionally) for anxiety, but now take Mugwort at bedtime and NO more anxiety. Also take magnesium capsules and sublingual D3 (6000mcg) and, my one prescription: 5mg of Zolpidem (Ambien). At first sign of neuro-inflammation I take an Aleve and repeat as necessary.
A great resource (my apologies if posted elsewhere): http://www.projectcbd.org
Also a link to an article about cannabinoid – drug interactions.
https://www.projectcbd.org/about/cannabis-pharmacology/project-cbd-releases-educational-primer-cannabinoid-drug-interactions
For my burning pain, I have tried for the most part to handle. CBD oil is what gave me my life back and I am so incredibly grateful for this. Unfortunately, CBD oil was the last one I tried and went through many school medicine. I actually think that Duloxetine combined with CBD oil worked well, but has now chosen to completely discard Duloxetine.
My dose is about 5 mg x 4. I will take four times a day.
Several of my doctor’s recommend, and use Papa & Barkley’s brand CBD oil.
Hello dear Cort and dear SEID/CFS friends,
Cort —
An idea which I am sure you have already thought of, for writing back to us about cannabis … and about supplements — if this is not too much work or trouble. Might you look back at your interviews with leading SEID/CFS practitioners to see about and list for us:
A. what types of supplements they most recommended because they helped their patients the most — (what companies they recommended, if any), & overall advice they gave their SEID/CFS patients re: using supplements. (For ex.: In your interview with Dr. Lapp upon his retirement, I remember he shared names of some supplements he usually recommended his patients take; then a commenter asked that he give more detail about his supplement recommendations, and he did.)
B. See (or ask anew) what they may have learned “best practices for SEID/CFS patients” re: — overall use/comments about CBD oil & other types of cannabis for SEID/CFS, which CBD oils found to be best for most, which other types of cannabis, what gives what side effects most often for SEID/CFS patients, ratios CBD vs TCH, amount per day and when, method used into body, how to get most absorption, best companies (third-party tested? approved labs?), least expensive companies, tips for saving $, in what states one can order what from companies online /or one can ask your dispensary to order for you, etc. etc.) that most has helped their patients.
Pinetree is just one patient … and we are soaking up the supplement & cannabis practices & learnings you helped her share. It seems both topics have caused this sampling of us to go through lot of bodily-difficult (and expensive) trial and error. Asking these most expert practitioners — who have each helped/followed hundreds even thousands of us — would give the most helpful info output for the least research energy put in.
~~~~~~~~~~~
I also offer a couple things…. For what they’re worth ….
(A) Two expert CFS docs recommendations for me re: supplements … & from one re:
cannabis also.
(B) Research I did on one aspect of cannabis
First: (A)
[ But …. IMPORTANT re: (A): The following Was/Is ***NOT*** MEDICAL ADVICE for anyone else but MYSELF. I only give this as one example of what two doctors advised one patient who has bedridden-level SEID/CFS & fibromyalgia & several additional sources of severe (esp. nerve) pain. To all reading this: It is important that your OWN doctor advise YOU. We each have VERY UNIQUE CONTEXTS, diagnoses, sensitivities, allergies, past health experiences, and on and on… .]
My new expert integrated CFS doctor (who, at least one year ago, was among the top rated on HealthRising’s list of the 11 best nationwide) recommended the following for me:
Re: SUPPLEMENTS: My doctor liked the supplements I was already on:
* FibroCare via TyH (To Your Health — recommended source by Dr. Teitlebaum, who did a successful I think smallish study using FibroCare),
* CoQ10,
* Multi-vitamin w/ minerals,
* D-3,
* Fish Oil,
* B-Complex-50 (all the B’s).
(Due to cost, I had pared down to these, after originally being on others like Alpha Lipoic Acid, Calcium, pills w/ vegetables’ powder in them), — & I also had previously taken:
* NADH (via Enada),
* Vit E &
* L-Carnitine — which, along w /
* CoQ10,
… were the set of 4 — recommended to be taken together — by my former older CFS expert doc who had co-led the small study that revealed NADH’s being an effective treatment for CFS patients.
This new expert doc wants me to soon add:
* Curcumin (Merivia) via Thorne Labs (said curcumin can de-tox you, so you might
feel worse for awhile before better),
* Drenamin for Adrenals,
* Armor Thyroid for Thyroid, … and …
* to try B-12 injections (I tried one time, felt no change)
* to start getting both my Multi-vitamin & my B-Complex-50 from Thorne Labs, as well.
Re: CANNABIS: — This CFS expert doc is all for my using cannabis for my severe pain, and advised me to take a ratio of 80% CBD to 20%THC.
For what it’s worth — now (B):
I share the following Aug-Oct 2018 informal research findings, for anyone who:
** really needs to use cannabis (e.g., for me, to lessen/eliminate severe nerve pain),
— but ALSO —
** really needs to lose weight, i.e., must avoid any cannabis that causes “munchies.”
I discovered there are 4 things you can look for … if you want to use cannabis, but stay clear of “munchies”:
1. To the best of my understanding, CBD use does not tend to bring on “munchies,” in contrast to THC use … which does.
2. Pinetree refers to the “full spectrum of cannaboids.” One of them — called TCHV — suppresses appetite. But few products now contain TCHV: the ones that do — to the best of my findings — are only in smokable “flower.”
3. One of the many parts of the cannabis plant are called “terpenes.” One type of terpene — called humelene (sp?) — is appetite suppressing. Products with humelene are about equally as hard to find now. They’re often at low percentages when found.
4. You can google “appetite-suppressing cannabis” and find several sites with articles on this topic. They list names of cannabis (just about always in “flower” form) that have been found to LEAST prompt munchies. Many names are on several lists, such as “Durban Poison” and “Blue Dream.”
Before I learned a lot of this I tried an oil under my tongue, and the day AFTER had nonstop munchies from hunger it was impossible not to relieve. Now I am trying a pill with 8.8 mg CBD and no THC, and have had no munchies from this. For whatever reason, I am almost never hungry nowadays!
Best to all,
Alden
Cort,
You said that you will do an article on various commercial brands of CBD oil for ME / CFS and fibromyalgia. I am eagerly expecting that. thanks in advance.
🙂 Thanks for the interest. It’s underway – a rather big job!
Hi Cort, this sounds like it’ll be a REALLY useful document/article! Is it still planned/in development?
Where is the best place to subscribe to, to be sure to catch it when it comes out?
Thanks 🙂
Thank Mike. Yes it is. It should be out in a week or so – after I replace my lost Kindle. Simply subscribe to the blog – see upper right subscription widget – and it will appear in your mailbox. 🙂
Cort please send link of your article
Very interesting and informative post. Health is the most important part of life nothing is more valuable than good health and massage is very good for healthy life specially the use of Cbd and hemp oils are very beneficial.
In 2018 many customer asked us why do we put CBD into CBD gummy, CBD lollipops, CBD candy since it has so much sugars kinda defeats the purpose for sleep for instance.
So in 2019 we have adopted CBD flower into our inventory allowing for those whom DO NOT want all the sugars or coconut oil in their diets to consume CBD flower which is the most purest and organic form to use CBD.
#ChronicBOOMDelights
Not all CBD brands are created equal. I’ve done a lot of research and specifically went with one kind because it’s third party tested, grown in US, organic, was FDA approved, and has the purest ingredients no added oils or fillers that dilute the CBD. anyway if you want more info feel free to email me at jbostwick@ymail.com
This is truly a miracle in a bottle! I can’t even tell you how many testimonials I get from customers and friends including my own relief from restless sleep and anxiety.
I’d like to take this article a bit further. If I could suggest to the patient, taking 200mg modafinil and b12 in the morning and cbd in the evening. Cut back on sugar, drink plenty of water.
Alternative medicine are more accepted now a days due to it’s promising results unlike pharmaceutical medicine, alternative medicine don’t give negative effect such as kidney and liver problems when it comes to long term use. As for my alternative medicine usage, I use medical marijuana. Different strain has a variety of uses and effect depending on your needs. You may check this blimburnseeds.com/grizzly-purple-kush-auto
very informative blog about cbd pinetrees cbd..thanks for sharing this with all
Thanks for sharing this.
Thanks for sharing useful information. keep sharing
thanks for sharing this story, I’m very interested.
We are noticing some similar results in our research when ingesting CBD as well as Delta 8 THC. With the amount of money this industry brings in I do believe in the next ten years alternative medicine will be able to remove a lot of underlining health issues that big pharma has caused. Spot on with your findings. Thanks for a great read.
Thanks for sharing this
One of the first things I did when I started buying supplements was get a subscription to consumerlab.com. They test many supplements for the things referenced above. They are now starting to feature CBD!