Trying CBD to Ease Symptoms in ME/CFS and Lyme

(photo courtesy of Delicious Living magazine)

I've been a bit absent from the blog lately, dealing with some serious crises with our son, who is 24 with ME/CFS, Lyme, bartonella, and babesia. While we are digging into the underlying causes and looking for solutions, we have found a treatment to ease many of his worst symptoms - CBD or cannabidiol, a component of hemp with none of the psychotropic properties of marijuana. I'll share our experiences and what we've learned so far.

He returned home temporarily after living on his own for a while, and we discovered he had some new and devastating symptoms. He's been suffering from anxiety, plus crippling stomach pains (we knew there was nausea and vomiting from a recent switch in Lyme treatment but didn't know about the pain). He's lost 40 POUNDS since January and could barely eat when he got home. We are already waiting for results of a comprehensive 3-day stool test plus a slew of blood tests, so we are still waiting on those to shed some light on cause of the stomach pains. We are suspecting ulcers now, based on his description of the symptoms (burning pain inside his stomach). We got him started with a psychologist recommended by a good friend, and are taking care of him at home and reassuring him that his only responsibility right now is to get well, and, of course, trying to feed him good stuff. 

We discovered CBD this weekend, and it is making a HUGE difference for him, so I wanted to share that plus see if others have any more info on brands, types, methods, etc. His anxiety is definitely easing since he came home, but we were away visiting family this weekend, and he woke up Saturday morning with severe stomach pains, unable to eat, plus bad joint pain from his Lyme. We had talked about trying CBD, so he found a dispensary two miles from his Grandma's house (we were in New York state) and asked if he could try it. My husband took him there while I was napping and got him a vape pen loaded with CBD. Within 5 MINUTES of the first dose, he felt great! Stomach pain gone, joint pain gone - it was absolutely miraculous. I got up from my nap and he was smiling and had eaten lunch - total 180-degree turn-around. He felt good and fully enjoyed the rest of the weekend and was able to eat.

Although I knew that many other patients - including many of the kids/teens/young adults represented in our Parents' group - have used CBD with success, I hadn't paid much attention to it before. My education on CBD began a few weeks ago when I read this article in Delicious Living magazine, ironically unaware at the time of our son's new symptoms. The article begins by explaining what CBD is:

"CBD (cannabidiol) is a component of hemp—a plant that looks a whole lot like marijuana. In fact, they’re both Cannabis sativa plants. The key difference? Hemp is grown to have a legal limit of less than 0.3 percent THC.

When people think of getting high on marijuana, it’s the THC (tetrahydrocannabinol) they’re thinking of: Marijuana typically has THC percentages in the teens.

In other words, nobody is getting stoned on CBD—it’s the clean cousin of marijuana’s THC.

While CBD and THC are very different, they are both plant chemicals known as cannabinoids. There are about 100 different cannabinoids in the cannabis plant (researchers are still counting)."

I recommend reading the rest of the article, as it was quite enlightening to me and refers to some of the research that's been done so far, as well as anecdotal evidence of the many uses of CBD.

Today, almost a week later, his disposable vape pen had run out, and he had some stomach pains this morning, so I ran to our local natural foods store and was happy to see they had a nice selection of CBD products AND someone on staff who was knowledgeable about them. I chose a mouth spray from Plus CBD brand in the lowest concentration and brought it home to him. He tried it right away, and it worked immediately, as the vape pen had, and eased his stomach pain enough that he could eat lunch with me! Only problem is that I got him the unflavored, and he says it tastes pretty bad, so tomorrow, we'll take it back and exchange it for one of the flavors (peppermint or cafe mocha) - our local store has a money-back guarantee and said we could bring it back if there was any problem! Amazon sells loads of hemp-derived products, if you don't have a local source nearby. This link explains the different terminology: CBD, hemp, marijuana, etc. and this link explains why Amazon sells products labelled as hemp but not as CBD.

A local friend suggested we go through the official Delaware dispensaries, so we will check with our doctor when we see her next week, but in the meantime, this seems to be working well. It's so important for him to be able to hold food down, both to gain some weight back and to get the nutrition in him (not to mention being able to take his meds!). Next week at our appointment, we will also get back all the results of the many tests and hopefully get to the bottom of what's causing his stomach pain, but in the meantime, this easing of symptoms is very important.

We are relieved and thrilled that the CBD is working so well, and we are seeing our son come back to life and seem like his old self, but I also have so many questions! Who else has used CBD, for which symptoms, and for how long? Is the vape pen or oil the best option? What other methods have you tried? Our son read that the vape pen is the fastest-acting but doesn't last long and that edibles will last longer (and obviously go right into the stomach). One problem with edibles is that many of them are filled with sugar (gummies, brownies, etc), and he is on a sugar-free diet due to chronic yeast overgrowth. The guy in the store said that the gel capsules wouldn't be as effective as the vape or oil/mouth spray. Would love to hear more from all of you brilliant people!

Please share your own experiences and/or questions in the comments. As we learn more, I will post it here on the blog.

1/19/20 UPDATE: Our son is still using CBD products, and they are still very effective in managing his symptoms--including nausea, headaches, joint pain, and anxiety--so that he can function (and eat!). He likes the CBD gummies because their effects last longer, though he still sometimes uses the CBD oil (just the oil now, not the mouth spray--he likes peppermint flavor). I still buy the same +Plus CBD brand of oil at the local health food store, but he buys the gummies at a local dispensary. He's found that they can vary greatly from one type to another in terms of strength, so it has taken some experimentation.