What has helped improve your energy the most?

[place]

This question is ask nearly every year and it is amazing to see its progression of treatment.

1. T3, thyroid meds

2. Gluten free and dairy free diet

3. Ldn( which I think gets the thyroid working better )

4 supliments: vD, l carintine, b12 protocol, d ribose, coq 10, anything supporting methylation.

4.5 potassium- I give it its own line as if I feel sluggish, brain fog; tired not myself, I take 600mg and I’m back in the game immediately.

5 . light box therapy during the winter.

There is more but .... these are my go to’s

 

[hamsterman]

Similar to Inester7
1) Pacing (with a heartrate monitor). (that's the biggie)
2) LDN (helped with brain-fog)
3) Supplements (Creatine, COQ10, BCAA).. (not 100% certain here, but seemed to improve endurance)
4) Better sleep management (Still an ongoing battle... but at least I've improved here)
5) Corticosteroid assisted Exercising. (A bit radical, but so far has solved my POTS, and reduced my heartrate for other activities)

 

[Bander]

After a crash, the only remedy that works for me is spending most of the day resting in bed preferably in a darkened room for many days in a row (sometimes weeks or months), which supports the idea of pacing to prevent that, as others have mentioned. For energy, nothing has come close to the boost I got from switching to a ketogenic diet. For memory and concentration, Ritalin works best for me (I take the time-release version called Concerta).

 

[place]

@hamsterman , I have always thought pacing with heart rate would be the best. How do you do it?

 

[Learner1]

Valganciclovir
LDN
T3/T4
Hydrocortisone
B12 and other methylation supplements
PolyMVA
NT Factor
NADH
IVIG
HBOT, UVBI, and ozone
Staying as fit as I can by pacing exercise (weight lifting and careful walking) with heart rate

 

[hamsterman]

@hamsterman , I have always thought pacing with heart rate would be the best. How do you do it?

There is a great facebook page here... https://www.facebook.com/groups/ME.CFS.HRM/

Its really geared towards helping the non-techie people. Many of the documents and how-tos available there are geared towards the polar A360 and A370.

It's a bit daunting at first... but you'll get the hang of it.

 

[pattismith]

Idebenone for awhile worked like nothing else. I thoroughly recommend it.

Having a probable mito disease, I don't tolerate Ubiquinol, so I consider trying idebenone...

Keenly, would you tell me what was your intake, and if t is available online (and maybe the brand name of the drug?)

 

[keenly]

Having a probable mito disease, I don't tolerate Ubiquinol, so I consider trying idebenone...

Keenly, would you tell me what was your intake, and if t is available online (and maybe the brand name of the drug?)

Hi
It is very difficult to get now because Pharmaceutical companies want to make it a drug. Instead of it costing a customer a few hundred dollars, they will make $30,0000 year for it.

I used 500mg a day and it worked BRILLIANTLY, nothing has ever come close.

 

[pattismith]

I started Idebenone 45 mg x2/day a few days ago.

it is amazing!

I was under Azythromycin treatment for my bronchitis, and side effects were showing up as usual (muscle weakness, pain, bad taste in the mouth...

30 min after I took Idebenone, all these symptoms were gone!

My husband was under the same antibiotic and had a metallic taste, he tryed idebenone and it went away!

This means that idebenone can rescue ion channels impairments, which might be very important for all the ME/CFS patients;

It's at less as important as thyroid hormons I think!

 

[Learner1]

Hmmm... seems it exists in Europe but not in the US.

How do you think it works differently than ubiquinol or ubiquinone? Studies seem to support use in mitochondrial disease.

 

[pattismith]

Hmmm... seems it exists in Europe but not in the US.

How do you think it works differently than ubiquinol or ubiquinone? Studies seem to support use in mitochondrial disease.

I bought it from USA, as here in my country it is only available in hospitals for some very limited indication (leber optic neuropathy which is a mito-D);

it works the same as Ubiquinol, and Ubiquinol has already shown ability to rescue some channelopathies in anecdotal reports.
But I can't tolerate Ubiquinol (strong headache within 1 hour after intake), whereas I can tolerate very well Idebenone, which I can't explain for now!

 

[Carl]

For me, not changing what I consume made the biggest difference in many years. I ate a very strict diet with no changes. I have high IgE antibodies to everything I consume which test have shown. Not altering the foods and times eaten/drank resulted in little tiredness, no brain fog and coupled with other treatments no coldness of hands and feet, no PEM and few symptoms except for a shifted body clock. I did have fairly low blood pressure of around 85/49 with a slow pulse which I think was caused by a herb that I take. My digestive system permeability is very high, most likely a lot higher than most on this forum.

Whenever I added any different foods/drink I would experience exhaustion and it could take days to recover the eating pattern and stop the tiredness.

While doing this I could walk several miles/day with no problems. Change my eating and I would crash. This is most likely due to Increased Digestive Permeability and my bodies reaction to large food molecules entering my blood stream. Eating so strictly seemed to allow my body ie immune system to adapt and accept the large food molecules entering my blood stream. This might be an IgE antibody adaption and it worked very well for me. I also did not have any recognised kidney function reduction which for a T1 diabetic is very good.

I have never got much out of D-Ribose, I do have some but there was something about it which I did not get along well with, although I cannot remember why.

For those who use D-Ribose, I did come across something somewhere online which I quote. If you enclose this in quotes and search google many links will show up:

It has been found that when D-Ribose is combined with malic acid and magnesium, there is a synergy that results in greater noticeable energy.

 

[mari_gold]

This means that idebenone can rescue ion channels impairments, which might be very important for all the ME/CFS patients;

That's so interesting @pattismith. Do you know of any research or publications stating that besides the anecdotal reports you mentioned here?

it works the same as Ubiquinol, and Ubiquinol has already shown ability to rescue some channelopathies in anecdotal reports.

 

[pattismith]

That's so interesting @pattismith. Do you know of any research or publications stating that besides the anecdotal reports you mentioned here?

Hypokalemic periodic paralysis are genetic channelopathies (calcium or sodium channels), and the report is here:

http://forums.phoenixrising.me/inde...alysis-channelopathy-with-coenzyme-q10.56835/

 

[raghav]

@pattismith Are you undergoing tests for complete blood count and liver functions frequently while on Idebenone ? What dosage are you on it now ?

 

[pattismith]

@pattismith Are you undergoing tests for complete blood count and liver functions frequently while on Idebenone ? What dosage are you on it now ?

I do follow my blood count but I didn't think about liver function, do you think I should?

I take 45 mg twice a day and take an extra 45 mg when I feel weak.

I'm waiting for my next delivery to increase my daily consumption on a regular basis

 

[raghav]

https://www.1mg.com/generics/idebenone-211370?q=IDEBENONE It says you should be tested for liver functions also.

 

[pattismith]

https://www.1mg.com/generics/idebenone-211370?q=IDEBENONE It says you should be tested for liver functions also.

Thank you, It's a very informative link.

"Common side effects of idebenone
Nasopharyngitis, Cough, Diarrhoea, Back pain"

I get no side effect for now (unlike with Ubiquinol), but my intake is very low, so I will have to pay attention to it if I increase my dose. (Intake for LHON and FA are very very high)

 

[raghav]

@pattismith Did you get increased energy from day one or did it take a few days to improve ? I have started with 45 mg two tablets taken together.

 

[pattismith]

@pattismith Did you get increased energy from day one or did it take a few days to improve ? I have started with 45 mg two tablets taken together.

I can't say, because I took it together with T3 and started everything at the same time.

I was fine but as I tryed to increase T3 and Idebenone, I got worse, so I have to restart everything and to do it slower.
(I will wait a bit before restarting idebenone because I want to better understand how T3 is working for me at first.)

I was taking Idebenone 45 mg twice a day at first.

Let us know how it goes for you!