I rarely do this, but I am recycling a post I made on a forum for this blog post because I think it's useful enough to share with a wider audience. This post was in response to a question by another poster who asked if anyone was doing a self-help version of the K-PAX trial.
A supplement manufacturer, KPAX, is or was conducting an ME/CFS drug trial in which they combined the stimulant Ritalin (a drug typically used to treat ADD and ADHD) with KPAX's own immune stimulating supplement. Some well-known ME/CFS researchers have theorized that the combination of Ritalin and certain other mitochondrial-support supplements (which are found in KPAX's supplement) may have a "synergistic effect," boosting the immune system and mitochondrial energy.
My take on this:
I have been and continue to be unwittingly doing a similar protocol. I happen to be taking all the ingredients in the KPAX Immune Support supplement independently (but not packaged exactly as KPAX does). Instead of Ritalin, I'm using Adderall. My understanding is Ritalin and Adderall are closely related and used for the same purpose, but I don't know if they would be considered interchangeable for the "synergistic" purposes of the KPAX trial, so take this with a grain of salt.
Also, I don't take the Adderall every day...maybe 2 or 3 times a week. At first, the point of the Adderall for me was to cut through the brain fog. Then I noticed that every time I took it, I had a way above-baseline day. But I figured that was because Adderall is a stimulant and is therefore making me feel* like I have more energy without actually improving my health.
Then after a while I started to noticed that if I was semi-crashed, or had inflammation, or shortness of breath, or flank pain, or sore throat or any of the many other symptoms I get with ME/CFS, they would go away or be greatly reduced when I took the Adderall on top of the other mitochondrial supplements (which I take every day.) I also noticed that the health & energy improvement usually continued the next day, even after the Adderall had long since worn off.
So now I'm starting to suspect that the Adderall may be doing more than just giving me the illusion of feeling better. I think it may actually be making me better. I am, of course, proceeding very cautiously but I love having Adderall in my bag of tricks. Basically any time I need or want to have a good day, I can have one instantly. The temptation is strong to just take Adderall every day, but I'm not ready to go that far.To be clear, I am not advocating the use of Adderall, I'm just relating my own experiences recently. Adderall is still a heavily controlled substance and the risk of addiction is apparently strong with this drug. Other patients have also expressed the concern over potential adrenal burnout if an ME/CFS patient become too reliant on Adderall.
I should also point out that I've never tried Adderall when I'm in a truly deep, serious crash. Instinct tells me that would not be a good idea. Also, Adderall has been useless to me against the types of crashes that are due to me catching a cold or another bug, but it has been somewhat effective when I get a flare-up of regular ME/CFS symptoms.
What mito supplements are you using and in what dosages? Thanks!
ReplyDeleteI will try to answer that in a future post. I would take quite a bit of time to explain...
DeleteDear Patrick, I found a link to your blog on the website of a dutch ME/CFS research institution. As I started to read, I was immediately impressed by your writings. The information you share with your readers and the way you express and open yourself, I find inspiring. My girlfriend is diagnosed with ME/CFS when she was only 12 years old. (Now 20). With many ups and downs she is fortunately still able to do things, although facing the known harsh limits and long 'recovery' periods. She's following an education which goes relatively well. It is somewhat comforting to see many similarities in the things you struggle with, knowning she's not the only one. I try, ofcourse, to help her in any way I can with these struggles. We cry a lot but fortunately we still laugh a lot too. I'll continue to read your interesting blog, and I hope your health will increase over time. Greets from the Netherlands, Jake.
ReplyDeleteJake, thanks for your message - I always particularly enjoy connecting with people from other countries through the ME/CFS community.
DeleteI can't imagine how difficult it would be to have contracted ME/CFS at age 12. Your girlfriend has my sympathy and my admiration for continuing to pursue education and other goals. Keep doing your best to help her. Every patient should be so lucky as to have an advocate like you.
By the way, if you're looking for an excellent blog written by a patient advocate, you might want to check out http://cfspatientadvocate.blogspot.com/ The writer of that blog has a daughter with severe ME/CFS. His blog is the real deal - excellently written with a fascinating perspective.
Hi Patrick, I totally 2nd your experience, even if it is 1 year late. I have been suffering from chronic fatigue for 6 years. I have been able to work full time for 3.5 of the 6 years, but just barely able to function. Shopping would send me over the edge with push and crash symptoms, every time. Walking over 15 min. ditto. Crash and brain fog symptoms frequently. I have not wanted to go on Ritalin for ADD because of all of the bad stuff I have heard, but decided to use caffeine as a Ritalin replacement (and because I like soda). Since I now work for a vitamin company, I started taking all the stuff I could think of for mitochondrial support and added high level anti-oxidants and anti-inflammatory supplements, as well as probiotics for IBS. When I tried to cut the caffeine my brain fog would be so bad, I would not be able to function. (Note: Brain Fog with ADD, what a bizarre combination!)
ReplyDeleteI noticed improvements the more supplements I added, especially the antioxidants/anti-inflammatory for 5 months. The run over by the bus morning torture and the more severe CSF problems slowly disappeared.
But once I saw the KPAX formulation, I tweaked my regimen to match and upped my caffeine usage. I have been doing a KPAX match for 1.5 months, and have noticed huge improvements in everything. Although I still have chronic fatigue crash pain/brain fog, it is not as severe. Orthostatic intolerance issues also are diminished. This week I woke up and for the first time in 5 years, I was able to take a walk in the morning for 30 minutes, instead of lying in bed trying to get over the pain, and I experienced no crash...at all!