For those new to my blog, I started a treatment called Equilibrant a little over a month ago. This was at the suggestion of my doctor (Dr. C), who is one of the better known ME/CFS researchers on the West Coast. A summary of Dr. C's theory regarding immune imbalance and Equilibrant is here.
I'm not ready to declare the Equilibrant a resounding success, but I believe it may be working.
I am still ramping up the dosage. Each week, I add one more pill per day. Currently, I'm taking 5 per day, where the maximum dose--and Dr. C's recommendation--is 6.
Before the Equilibrant, my cycle of crashes and recovery was fairly predictable. I would typically experience 3-6 days of crash, followed by 3-6 days of recovery. And the cycle would repeat. Dr. C said that if the Equilibrant is working, the crashes would gradually become less severe and of shorter duration.
In the middle of May, I had a week-long crash that was just as severe and just a long as an average crash before the Equilibrant. But, if we take that crash out of the picture, I've had a pretty good 5 weeks. True to Dr. C's word, I've had many periods of recovery which were followed by what felt like the onset of another crash. But the full-blown crash would never materialize. Instead, a half-baked crash would set in, hang around for a day or two, and then lift.
Another hopeful sign is that I've experienced a brief start-up reaction every time I've increased the dose. Dr. C said this would happen if the Equilibrant was indeed nudging my immune system toward Th1. Within 3-6 hours of increasing the dose, I feel flu-like symptoms. The interesting thing is that the symptoms are a different "flu-like" feeling than when I crash. They come with muscle aches and tenderness in my neck, which is not what I typically experience when I crash.
Having said all that, I still think it's too early to attribute my modest improvements to Equilibrant. I've certainly had other good streaks before the Equilibrant, although maybe not this good. I'll update again in another month or so. Eventually, I'll have my Natural Killer Cell activity tested again, which will provide a more objective measure.
I will keep my fingers crossed for you Patrick
ReplyDeleteThank you my Aussie friend. And I, you!
DeleteThat is great news! I'll have to read up on this stuff. I haven't heard of it before. Would it be available through my own doctor or is this a special concoction?
ReplyDeleteBaffled, if you have a CFS specialist he/she might know about or provide Equilibrant, but I think it's still relatively unknown. I think you can order it from their website, but....here's where I put the obligatory: you're supposed to take it under a doctor's supervision. You could ask your doctor to look into it??
DeleteThanks for blogging about this. I'm still have such violent reactions to this medication. I tried dissolving 1/8 in water and taking 2 sips and still I felt unbelievably sick like you described. So I switch to take it at night b/c the sleepiness it gives me is unreal, but then it makes me feel even more that I "haven't slept all night". I'm going to consult my doctor, but I don't know how to take this med since the dose is so tiny and I can't tolerate it day or night. Just posting this in case anybody else reads it and had similar issues. Thanks Patrick. If I figure something out I will come back and post.
ReplyDeleteHi Chris. I'm sorry to hear that you're having such strong reactions to Equilibrant. That must be really frustrating. You're not alone though, I've read many others who've had a similar experience. I guess it's just different for everyone and may depend on the specific etiology of our ME/CFS. I wish you the best on your continued search to find something that works for you.
DeleteHey patrick... What is your take on equilibriant today?
ReplyDeleteHi Alex. I'm still taking Equillibrant (6 tabs per day) and I still think it helps modulate my immune system. I have fewer crashes than before, and they are more short lived.
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