Discussion in 'General Treatment' started by Cort, Nov 8, 2010.
This just caught my eye from another website. Has anyone tried this combination of supplements?
His next post - making slow improvement provided he does not overdo it
Sounds a bit Myhill. Someone I was speaking to on-line sounded very similar to this, and also raved about Myhill's approach.
Two different people that I've spoken to who have recovered talked about graphing actometer results. I've still not tried it... not very Type A there. Both these other people spoke about 'burnout' rather than CFS, but it seems likely that there's some subsection of CFS patients with similar problems.
edit: he mention's Myhill's minerals in his second post. That sounds very Myhill!
I should really be doing that - graphing pedometer results - I know someone else who is slowly improving doing something like that.
I just searched Amazon for 'actometer' and nothing came up! Amazon is supposed to have everything!
Does anyone know where in the UK you can buy an actometer?
You could try to get hold of some second hand from the psychs - I believe they had a job lot of them which they decided not to use halfway through their last big study, presumably when they realised the actometers would prove that their CBT-based "improvements" didn't actually represent any increase in activity levels...
Just have to say that I think you're doing a Great job on this forum !!!
I suspect this is what's responsible for his improvement not all those supplements. He really won't be able to tell what's helping unless he looks at each supplement and his nutritional deficiencies individually. I may have missed something here but from what I read, he's now on the Paleo diet ... Myhill and Cordain explain why this works.
FWIW. I'm relatively new to the world of supplements but in my experience getting too much or too little of Nutrient A, B or C is counterproductive and can be dangerous. And trying to follow a protocal isn't realistic because it doesn't take into consideration what nutrients someone is getting via their diet, what their gut biology is and what their nutritional deficiencies are.
Since I started an exercise regime recently I was looking into what I might need to help with this. I bought CoQ10 only to have a bad reaction (eye pain) to it so that's out. So far, it looks like pacing, taking extra B's, Enzymatic Kreb's cycle chelates and drinking plenty of water and for me because my labs showed that I had too much mercury, some chorophyl to help me detox .. ... kow ... kow ... My muscles started recovering from any pain on their own within 24 hours a year or so ago but I can't remember if I figured out why right now ... it's been a loooong day ... for almost 20 years, my recovery time was weeks ... tc ... x
Very interesting Cort
Thank you for all that you do for us.
I find diet very difficult to figure but believe it makes a big difference.
I take 500mg acetyl-l- carnitine and 250 mg co q10 daily. I did take ribose but did not notice any effects and stopped the magsense when i had black out spell
I have had food sensitivity testing but think that some of the foods that test ok for me on the tests are not, so hard to figure, but then as my cfs doctor says- be careful of eating a specific food more then once in 4 days or you could develop an intollerence to it
Hi again Cort,
I was almost asleep . ... lol ... ok, I know that you're GF but I keep forgetting to ask you if you're aware of cross contamination problems ? And because you're sensitive to gluten, there's a strong possibility that other foods or chemicals are bothering you too. Most of the people I know who are sensitive to gluten or other foods, find that minute amounts of these can cause symptoms ranging from RA pain to ataxia to digestive problems to whatever ...
I've met a few who say that it isn't until the gluten, etc builds up in their bodies that they react too. Some celiacs I know can eat all those cross contaminated GF foods for awhile and then it catches up with them and they have to back off for a bit ... I'm this way with dairy. I don't react (dark circles around eyes) until I've been eating it for 3 days but then it takes 7 - 10 to undo the reaction.
I've healed quite a bit in the last 5 years so I can tolerate minute amounts of gluten without getting knocked off my feet for 3 weeks now but it still causes me to be tired for a few days to a week afterwards. Just a thought ... my body thinks it's 11 here so I'm off to bed ... tc ... x
I was an athlete in a former life (wish I could be reincarnated back there right now) and used many of those things and more. I've also used many of them post-illness. You will find that what helps you is specific to your biochemistry and work out. Acetyl carnitine made me jittery, ribose did nothing, co q 10 helped a little, and magnesium malate was essential. In general, many of the typical amino acids for sports were not helpful, but glycine, taurine and NAC were. Creatine is also helpful. Pre-illness I took things like ferulic acid, vanadyl sulfate, many antioxidants (vit e etc-improved aerobic capacity), but those don't seem to have the same impact post-illlness. I've discovered through blood testing that my viral titers go through the roof post exercise and my magnesium dips even lower (makes sense that anything you sweat out needs to be replenished including B vits). I am trying to experiment with taking some type of natural anti-virals post exercise to see if that will improve things. I think it's likely that the specific causes may be slightly differnet for everyone even though the end result is the same (as with so many other aspects of this illness). If anyone else has done something similar, then I would love to hear about it.
I have taken most of those. If it weren't for my supplements, I would still not be walking. I would be in bed since I have POTS. The d ribose, Lipoic Supreme, coq10 , and others have been amazing. The Lipoic Supreme heals nerve problems in feet etc, so it is valuable for my POTS. I am so thankful for my doctor that knows about supplants and how much I need.
Looking back on my time with CFIDS, I brought myself out of my first 3 year battle by cleaning up my diet (I mostly ate The Zone, no wheat, little dairy) and a few supplements. Looking back, there was a supplement called BetaGen made by EAS that I took, which contained L-glutamine, taurine, and creatine, which I think may have really been a big help in my recovery. Unfortunately, they don't make it anymore, but I did find something similar online the other day, but I can't remember the name of it. I'll have to find it again. It may be worth a shot.
hi Drex, if the diet worked before, have you tried it again?
I stopped gluten four months ago. I did a lot of reading about it.
No, I haven't. Why ? I don't know. I had my gallbladder out 4 years ago, and my digestive system (and everything else) has been a mess since then.
Having been a Personal Fitness Trainer before I became to ill to take care of myself I understand why someone would try this type of "treatment". But what it sounds like to me is that rest is important and becoming active leads to post exertional malaise. Sounds vaguely familiar...
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