Freddd - have increased energy on your protocol!

[Freddd]

Update - well, I crashed yesterday, my regular CFS crash, still recovering today. I only did a little bit extra than I usually do. So it appears my stamina has not increased, although I felt better.

I don't know if I'm back to square one or not. Am going to continue with Freddd's recommended supplements and just see what happens. It's rather discouraging, to put it mildly. I would give anything to know what's going on.

Mary

Hi Mary,

Boy oh boy. I have been through this whole business and crashed over and over. No matter how good I was feeling, I had no more capacity than the day before. It made my wife quite angry when I said how much better I was feeling yet couldn't do a spec more work. I found that I had to hold the increase to a tiny fraction. I started over again and again. Finally I got it. I had to start with what I knew I could do, and increase the distance (walking) a tiny amount to begin with. After I got up to about a mile ambling along, I started increasing intensity. Again I started out at one house lot (driveway distance) walking faster and increasing it each day by one more lot. It is especially important to have the potassium, maybe 2-3 tablets twice a day for starters because as you exercise you will begin to repair and restore your muscles. You will never notice 1% change a day, any more and you risk a crash. Once I knew it was time to stop I had gone too far and was already doomed to crash. The adb12 and carnitine and so on are very important too. Don't overdo. Start lower and increase slower than you ever had any inkling you could do so little more. It adds up.

 

[Mary]

Freddd - I think it may be something else- a variation of DOMS?

Hi Mary,

Boy oh boy. I have been through this whole business and crashed over and over. No matter how good I was feeling, I had no more capacity than the day before. It made my wife quite angry when I said how much better I was feeling yet couldn't do a spec more work. I found that I had to hold the increase to a tiny fraction. I started over again and again. Finally I got it. I had to start with what I knew I could do, and increase the distance (walking) a tiny amount to begin with. After I got up to about a mile ambling along, I started increasing intensity. Again I started out at one house lot (driveway distance) walking faster and increasing it each day by one more lot. It is especially important to have the potassium, maybe 2-3 tablets twice a day for starters because as you exercise you will begin to repair and restore your muscles. You will never notice 1% change a day, any more and you risk a crash. Once I knew it was time to stop I had gone too far and was already doomed to crash. The adb12 and carnitine and so on are very important too. Don't overdo. Start lower and increase slower than you ever had any inkling you could do so little more. It adds up.

Freddd - I'm beginning to think something else may be at work here. Here is something I posted on the ProHealth board today:

Since my latest crash (after a brief burst of energy from a new methylation/B12 protocol), I have been wondering why certain supps (l-carnitine, carnitine fumarate, NADH, malic acid and calcium pyruvate) have all helped me with energy, but only temporarily, and I always end up back at square one. Rich addressed this issue in a post earlier today (see "Rich -increased energy on Freddd's methylation protocol").

So this morning I thought I would look at the problem from a different angle - instead of trying to find things to increase energy, I began to wonder if exercise itself might be the problem - that byproducts of exercise might be what is causing "post-exertional malaise [actually, acute exhaustion - I hate that word 'malaise', so innocuous for such a devastating condition!]".

I know this will not be new information to many of you, but it is relatively new to me as I didn't pay much attention when people posted about this a few years ago.

I first read a little about lactic acid build-up, which I've heard a lot about before in relation to CFS, but then read that lactic acid is not the cause of DOMS (delayed onset muscle soresness - also delayed onset fatigue! in athletes).

Anyways, I then came across an article about "DOMS" and it sounded remarkably similar to what happens in a CFS crash - fatigue and soreness which can hit 24 hours after exertion and last for days. Recommendations for alleviating this condition are proteolytic enzymes and beta sitosterol.

Here's the article. It's really quite interesting.

http://www.bodybuilding.com/fun/south127.htm

A few years ago someone - I think it was catseye? - posted about a product called Extra Energy Enzymes which was supposed to help a lot with PEM. I tried it once, I think I reacted badly, may have been detoxing, who knows, but still have the bottle and am going to try it again - will start with 1/2 a tablet and work up gradually if possible.

Also, as I know many of you are aware, proteolytic enzymes are supposed to help with FM pain and also arthritis pain. I won't have any input on that as I don't have FM.

Mary

 

[Freddd]

Freddd - I'm beginning to think something else may be at work here. Here is something I posted on the ProHealth board today:

Since my latest crash (after a brief burst of energy from a new methylation/B12 protocol), I have been wondering why certain supps (l-carnitine, carnitine fumarate, NADH, malic acid and calcium pyruvate) have all helped me with energy, but only temporarily, and I always end up back at square one. Rich addressed this issue in a post earlier today (see "Rich -increased energy on Freddd's methylation protocol").

So this morning I thought I would look at the problem from a different angle - instead of trying to find things to increase energy, I began to wonder if exercise itself might be the problem - that byproducts of exercise might be what is causing "post-exertional malaise [actually, acute exhaustion - I hate that word 'malaise', so innocuous for such a devastating condition!]".

I know this will not be new information to many of you, but it is relatively new to me as I didn't pay much attention when people posted about this a few years ago.

I first read a little about lactic acid build-up, which I've heard a lot about before in relation to CFS, but then read that lactic acid is not the cause of DOMS (delayed onset muscle soresness - also delayed onset fatigue! in athletes).

Anyways, I then came across an article about "DOMS" and it sounded remarkably similar to what happens in a CFS crash - fatigue and soreness which can hit 24 hours after exertion and last for days. Recommendations for alleviating this condition are proteolytic enzymes and beta sitosterol.

Here's the article. It's really quite interesting.

http://www.bodybuilding.com/fun/south127.htm

A few years ago someone - I think it was catseye? - posted about a product called Extra Energy Enzymes which was supposed to help a lot with PEM. I tried it once, I think I reacted badly, may have been detoxing, who knows, but still have the bottle and am going to try it again - will start with 1/2 a tablet and work up gradually if possible.

Also, as I know many of you are aware, proteolytic enzymes are supposed to help with FM pain and also arthritis pain. I won't have any input on that as I don't have FM.

Mary

Hi Mary,

There were some researchers here in SLC a few years ago looking at lactic acid as a marker for FMS as one of the causes of muscle pain. I spent 16+ years with unrelenting lactic acid burn in my muscles. In the symptoms list as it is currently posted there are quite a few different muscle pains. Aside from the adb12, l-carnitine fumarate, Alpha lipoxc acid, d-ribose, and various cofactors I am not sure what will help. My long term burn was gone 10 days after starting adb12. However, it took two more years of careful exercise before the tendency to crash suddenly with just a small excess of exercise was gone. I hadn't used my muscles much for 16 years. They were atrophied and unrepaired after exercise damage. They were very easy to overexercise even though they didn't feel bad beforehand. It took a lot of careful rehab work to build them up to the point they acted normally again. I don't know if you will find something that will help. It would be good to find such. I was informed about dibencozide by the body builder community. I know that if your muscles are responding like mine and those of many other people who have been through this successfully, that even when energy feels better, there is no more capacity there at first. This capacity can be built up. If you can find a better way to do it great. If not, be careful, as each crash is a setback and can take a couple of weeks to recover from. Be careful.

 

[aprilk1869]

According to this article on LEF, people with conditions such as Fibro potentially need between 15 and 30 g of D-Ribose a day spread out over the day in 5g servings.

For those of you you've never tried D-ribose, it's naturally very sweet so it's easy to mix in with fruit juice. So buy it in bulk powder form rather than tablets.

 

[Mary]

Freddd - thanks for the info. I have learned that I have to stop doing whatever I am doing before I begin to feel tired, if I want to avoid a crash. I am going to continue with your protocol - at least I am tolerating it much better than the simplified methylation protocol! And I am going to try adding the proteolytic enzymes and beta sitosterol in small amounts, see if I tolerate them as well. A blood test done by Dr. Sarah Myhill about a year ago indicated I had a lot of cellular debris, I'd have to look it up to see exactly what it said, but there was just a lot of crud, really unusually high amount in my cells or blood and I am hoping that these enzymes will help clear it out.

Mary