MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
Okay, so I finally bit the bullet, and shelled out $300 for an appointment with a cannabis doctor her in California.
This is basically one of the few totally legit doctors in my area of SoCal. There are no Jimi Hendrix posters on the wall. You meet with two doctors for an hour-- they are a bit more informal than most doctors, but it's all business. They looked up MCTD, and were doing literature review on the spot.
What we are trying is capsules of CBD oil -- there are three different varieties -- with a tiny bit of THC as a catalyst, because apparently the CBD does not work right without a trace of THC. The capsules are rated as #1 (which has virtually no THC) throught #10 (which is mostly THC). What I have been taking is one #3 in the early evening, and then a #1 early in the morning-- at 4:00 or 5:00 AM-- to improve mobility in the morning.
It's been 10 days.
I don't dare to hope, but it seems to be working.
I can sit down in my chair and bang out notes for five clients in a row. I did all my CEU units, passed every test the first time (and they were not easy.)
I had a great body boarding session-- though very short. I swam a half mile with virtually no range of motion issues, no problems with triceps, and zero feelings of fatigue.
Basically, I felt like a 58 year old instead of a 68 or 72 year old. It has not eliminated pain, but I don't want to eliminate pain-- that's existentially futile.
I suspect there are four different effects: A pain relief effect (which is mild), an antiinflammatory effect (which is quite significant), possibly and immune regulating effect (only a theory, but why is the brain fog better?) and some very vague psychoactive side effects.
I do not feel stoned. At all. I do notice a VERY mild self-consciousness that I remember from my pot smoking days-- but without the weird-head feeling of being stoned, I can't tell whether it's really the CBD/THC, or I'm just imagining it. If you had never used cannabis, you might never notice it-- or, if you were a regular user, you might never notice it. And I did have kind of odd visual effects the first day I started it, and vivid dreams one night.
But why is the brain fog better? How am I churning out so much work without feeling totally drained?
Maybe I am just between flares-- it's possible. I would need two or three months to be sure this is working.
And this is not cheap. We're talking two or three hundred bucks a month, though hopefully I can sip doses.
But this is the most hopeful I have felt in years.
I am basically in remission except for the dysphagia, which has become a separate issue. Now that I feel better, I am getting way more exercise-- skied four half days this seasons-- and I have to eat more, which I can't do, so I lose weight. Then I have to really work on my eating... set aside lots of time every day and eat incredibly slowly... and gradually put the weight back on.
I have some joint pains in my hands that are a vaguely worrying, and my right shoulder to my right bicep hasn't really felt right in over a year. But again, that's all kind of normal... the days when I had trouble getting out of bed, or worried I might fall because I was unsteady on my feet, seem to be behind me.
Muscle aches and pains are now transient and normal for a 59-year-old man. I am sore the day after skiing, the second day I am back to a light workout on the elliptical or rowing machine, the third day I feel totally normal. My headaches are worse, but I think that's due to my car accident last year, not the MCTD. I got a head cold a few weeks ago, was afraid I'd get sick for a month, but I threw it off in about 10 days-- not too bad.
<< different terpene profile between 2 equil matched (CBD,THC) samples may have a different effect on a specific type of condition for a user. >>
This would not surprise me, actually. What I am starting to think is that CBD is what is most helpful; the THC does work as a catalyst, but the "entourage effect" may be overblown.
I just notice the strangest things when I get up to 2:1 CBD to THC. A lot of the time, there is zero psychoactive effect, nada. Sometimes, I feel a little something. Once a month or so, I will *really* feel the THC-- but every time that happens, it's a different feeling. In January, I had one night when I felt very edgy on the way to the movies-- almost paranoid-- but once I was at the theater, I enjoyed the film WAY too much. In February, there was one night I woke up at 3:00 AM having these really bizarre hallucinogenic dreams. So then I will go back down to 4:1 for a few days, then go up to 2:1 maybe three days later and... I feel nothing. So I'll go write notes or work on spreadsheets for my business. Look at them the next day, and they're fine.
Again, the doctor wants me to take this three times a day, and go up to 4:1 in the morning and afternoon and 2:1 at night, but that's crazy. I don't need that much. Yes, there are days when I can feel the MCTD trying to flare up between doses at mid-day. The usual symptom is I start to trip over the doggie gate, or bumping into things more-- it's more muscle function than muscle pain. On those days, I take a few sprays of 4:1 in the afternoon in addition to the usual doses, and I'm fine. Don't need to do that every day.
It's crazy expensive and I am glad I can afford $50 a week for this crap. I'm probably spending over $1,000 a month on health care, so I'm very grateful I'm able to work. I have to work full time to cover that and my nut... glad I saved money when I was healthier. So far so good!
I'm going to try it again today. This does mean taking a third dose of CBD-- one in the late afternoon-- but I've been using the capsules with almost no THC in them. I guess I am nervous about taking so much CBD... I am worried it might be like Sinemet for Parkinsons, that it will only work for a few years, and the Norco-- despite what you hear about the opioid epidemic-- never seemed to stop working for me. I sort of understand how people get addicted to it, but I've really never wanted to take it more than once a day.
It was funny, in my AA meeting when I talked about this, the heroin addicts could not believe I did not experience any withdrawal. But I really didn't. There is a big difference between taking opioids as directed, and taking them recreationally, I guess.
It would be wild if I could get down to using Norco only a few times a week, and eventually only for the worst flares! Honestly, I think what's going to be tough is going past five days on, two days off Norco-- in other words, not taking it on the days when I have to work. Writing my notes in the evening is VERY hard on some days, it's hard to keep my eyes open, and they feel like they are hot coals burning in their sockets.
But I'm going to go very slowly with this, take it one week at a time. It's also possible that the CBD could just drive the illness into an extended remission-- who knows? Neither MCTD nor CBD has been studied well enough. Wish me luck!
Mary Ann
I am suspecting that the CBD is not perfect... I am experiencing pretty severe fatigue now. I don't know if the MCTD is breaking through or if it's a side effect of the CBD-- fatigue was VERY bad on Sunday, the day I took CBD instead of Norco.
Like last week, I had zero "typical" effects of hydrocodone withdrawal-- no cravings, certainly, no stomach problems or sweating or scratching or whatever. There was a vague sense of missing something that was roughly similar to skipping cigarettes or when I'd stop drinking for a day (ha! almost never until 3 years ago!) but the sensation was, like, maybe 10% as strong.
I did feel that the extra CBD made me kind of sleepy, though, and for the first time I wondered if we are tampering too much with a system that is working.
Bummer about Tennessee and MJ, though not a big surprise. I lived in Cumberland County for a summer, which was dry-- I remember the whole thing: no hard liquor except in private clubs or moonshine (which was, at least from our source, excellent.)
I wish we could all find a happy medium with these laws and regulations. Weed is TOO legal in California; I wish they could crack down on people getting stoned in their cars. I am so sick of morons blowing stop signs and red lights to make right turns, not even slowing down, not even looking, and I am completely convinced it's dope and texting.
I have very, very little muscle and joint pain and my movements are much more fluid *except* at around 2:30 to 7:00, when the morning dose of CBD is wearing off.
I have two competing theories: 1) I have built up a tolerance to it. I'm hoping it's not that; my second theory is 2) May and June are just the worst months for symptoms because the humidity here is so intense.
This morning was a classic example-- I could not sit up in bed, had to roll onto my side and then pull my knees to my chest. Not too bad, other than dislodging the dogs, who tend to use us as furniture. Walking very slowly, not steady on my feet, should really have a cane. Before I look out the window, I know what I'm gonna see-- heavy fog. Sure enough, there it is. Damn, I hate fog!
Dosed at 5:15 or 5:45 or something. Definitely felt better by 7:00 but whoa, not even close to normal. On other bad days, I have dosed three times instead of twice, and that almost always works (it's just crazy expensive.) So it obviously helps.
The THC has almost zero psychoactive effect except the first day in the week that I take a #4-- on that day, I don't work in the evening.
So CBD/THC is extremely helpful for movement and stiffness.
It is very helpful for muscle pain.
It is very helpful for brain fog, memory, and sense of direction. I just don't lose my phone anymore for more than five minutes, I don't have moments of disorientation when driving, it's totally weird, I expected the opposite.
It is only slightly helpful for headache or joint pain.
It is useless for dysphasia (trouble swallowing).
Hope that's helpful.