Very Sensitive to Mitochondrial Supplements. Why?

[fngrpntr]

Second thought. Was your energy normal before this all began? I trace my illness back to a couple of major "flu" episodes in my 30's. Based upon response to treatment, and some blood work showing past infections, I am, after 30 years of slowly declining health & energy, actually recovering with high-dose Valtrex & various antibiotics. Herbal protocols (search Buhner and Zhang for these) have also helped, although after a year on herbs I developed allergies to them.

This might or might not make sense for you. Along with declining energy, I had frequent flu-like flare-ups which now appear to have been infections, since they have disappeared with treatment. But if I were you, I wouldn't rule out infections even without flare-ups. It could be that your immune system is still strong enough to keep an infection sub-clinical, but using up your energy.

The easiest way to test this theory would be to just try some herbal remedies. If you herx (get briefly ill from them before getting better), or simply begin to feel better, then you'll have your answer.

I used to be much more intolerant to all the "stimulating" fixes that you have talked about before I got onto these antimicrobrial protocols. It could be that the stimulating supplements were also feeding my infections---thus the reason for feeling better and then crashing. But now that I've been treating the infections for a few years (don't be frightened by this, I was much sicker than you are), I am able to handle the energizing supplements again.

 

[fngrpntr]

One more: I like this doctor as a resource for theory about energy dysfunction. Here is her post on the methylation cycle--a good overview:
http://www.drmyhill.co.uk/wiki/CFS_-_The_Methylation_Cycle

Also, she just wrote a book about mitochondrial disfunction. Of all the CFS docs, she is the one specifically researching energy production, and has developed testing protocols to figure it out.

"Diagnosing and treating Chronic Fatigue Syndrome: its mitochondria, not hypochondria"
by Sarah Myhill
http://www.amazon.com/gp/product/1781610347/ref=oh_details_o00_s00_i00?ie=UTF8&psc=1

 

[Sherpa]

I have recently started taking mega doses of 4 different B12's & am getting energy from that.

Do you eat red meat? Digest protein well? .

Great you are getting energy!

I do eat red meat now but I was vegaterian / vegan (terrible idea) for 15 years.

My serum tests show my ferritin and B12 levels as "normal" but I am responding well to B12.

I am taking just the Enzymatic "Energy Revitalization System" (with 500mcg of and it is really helping me)

 

[Aerose91]

Hey @Sherpa not sure if you remember me but we have spoken a bunch of times on the CureZone boards when I had adrenal fatigue as well. I ended up taking phosphatidylserine and it messed me up something terrible, ultimately ended up being M.E., I have been declining rapidly since then.

Anyway, being someone who was in the AF boat (still is) with you and now learning about this disease maybe i can give you some insight. I would definitely say you don't have CFS/ME which is an EXCELLENT thing. This disease is contrived from Satan himself. However, I feel like us AF people never heard anything about methylation but that could have been a huge help. I did the 23andme test and upon seeing my genetic mutations had one of those "aha, so this is why I'm as bad as I am" moments. Unfortunately it's a bit too late for me but I bet you would find some great benefit from seeing these results and then you would know exactly what to work on to get your detoxing back into full gear.

Another thing you may want to look into is phosphatidycholine. A lot of people with fatigue syndromes have great success with this and I'm currently working.with a doctor who is a big supporter of this therapy. The quick and ugly run down is that toxins and oxidative stress and restrictive diets wear down your mitochondria and cellular membranes which blocks some of the Krebs Cycle functions therefore impairing energy production. Replacing the raw materials will allow you to regenerate and get everything up and running again.

Methylation is complicated and trial and error it seems so you may benefit from trying the PC first and seeing how well that reduces your symptoms and causes less sensitivity to methylation supplements. You're on the home stretch man and I'm sure once you get this last piece of the puzzle in place you will be back to vibrant health you once had and the AF monster will be behind you.

 

[dannybex]

During periods of high stress I recently had a couple outbreaks of angular chelitis, a skin condition, that I read could be caused by folate deficiency.

Angular chelitis can be a result of many different deficiencies:

http://en.wikipedia.org/wiki/Angular_cheilitis#Nutritional_deficiencies

 

[stevesayshi]

I strongly recommend C60 in olive oil for the symptoms you describe. It is a super-antioxidant among other things. There are a few sites that sell it. Dosing is. .. pretty much unknown at this point. Lots of testimonials on longecity.org forums.

 

[Sherpa]

Okay,... I think I answered my own question almost 10 months later. I think I am sensitive to mitochondrial supplements because I have so much oxidative stress-induced cell membrane damage. Stimulating "broken" mitochondrial structures with accelerating nutrients is agonizing and inflammatory. I have been taking NT Factor EnergyLipids and eating good fats - trying to repair the damage. I think it is making me less sensitive. The easy way for me to check would be to take 50mg CoQ10 and see if it caused me to jump out of my skin (like it used to) or not.

 

[Aerose91]

Okay,... I think I answered my own question almost 10 months later. I think I am sensitive to mitochondrial supplements because I have so much oxidative stress-induced cell membrane damage. I have been taking NT Factor EnergyLipids and eating good fats - trying to repair the damage. I think it is making me less sensitive. The easy way for me to check would be to take 50mg CoQ10 and see if it caused me to jump out of my skin (like it used to) or not.

It's quite possible. The other quality brand for cell membrane repair is BodyBio Phosphatidylcholine. It's the highest quality PC out there but it's very expensive. That's what my doc had me on (as well as a high sat fat diet) to repair cell membranes. Good luck to you

 

[Aerose91]

It's quite possible. The other quality brand for cell membrane repair is BodyBio Phosphatidylcholine. It's the highest quality PC out there but it's very expensive. That's what my doc had me on (as well as a high sat fat diet) to repair cell membranes. Good luck to you

Hey also FWIW, you can have your cell membrane integrity and lipid break down tested. I did, that's the first thing my doc went after and despite being a personal trainer and nutritionist, my lipid profile was waaay off and showed significant cell membrane degradation. Its a test done under the Patricia Kane protocol. It's close to a $500 test, so not cheap, but if you or your doc think it's worth it you can find a practitioner on Patricia Kanes sight. Very, very detailed test.

 

[aquariusgirl]

@Aerose91 .. what dose of PC were you on?

 

[Aerose91]

@Aerose91 .. what dose of PC were you on?

High, I had to taper up to 10,000 mg/day and that's where I'm staying indefinitely

 

[jason30]

I have read this thread with alot of interest.
I am pretty new to this all but because i have the same symptoms i am gonna start with Phosphatidylcholine and wonder if these 2 products do the trick as well?
http://www.iherb.com/Thorne-Research-Phosphatidyl-Choline-60-Gelcaps/18687
http://www.iherb.com/Jarrow-Formulas-Mega-PC-35-120-Softgels/236

 

[Aerose91]

I have read this thread with alot of interest.
I am pretty new to this all but because i have the same symptoms i am gonna start with Phosphatidylcholine and wonder if these 2 products do the trick as well?
http://www.iherb.com/Thorne-Research-Phosphatidyl-Choline-60-Gelcaps/18687
http://www.iherb.com/Jarrow-Formulas-Mega-PC-35-120-Softgels/236

Jason

In terms of quality those two are probably the best behind the BodyBio. I talked with my doctor recently about this since BodyBio PC is so expensive and if these were suitable alternatives. She said that PC should be at least 50% in order to make it through your GI tract without getting broken down. Those under will get broken down and you don't know if your body is reformulating it as PC or not. I trust her, but she is also bias toward BodyBio products because she likes me on super high quality stuff, but the BodyBio PC is ludicrously expensive.

Off the bat though I would say both of those brands of PC are definitely better than none at all.

 

[jason30]

Jason

In terms of quality those two are probably the best behind the BodyBio. I talked with my doctor recently about this since BodyBio PC is so expensive and if these were suitable alternatives. She said that PC should be at least 50% in order to make it through your GI tract without getting broken down. Those under will get broken down and you don't know if your body is reformulating it as PC or not. I trust her, but she is also bias toward BodyBio products because she likes me on super high quality stuff, but the BodyBio PC is ludicrously expensive.

Off the bat though I would say both of those brands of PC are definitely better than none at all.

Thanks alot Aerose91. Noob question, 50% of what?
Also, is Phosphatidylcholine always derived from Soy?

 

[Aerose91]

Thanks alot Aerose91. Noob question, 50% of what?
Also, is Phosphatidylcholine always derived from Soy?

A 50% or higher concentration of PC. The Jarrow is 35%, I'm not sure about the other one. BodyBio is 68% or something, Its the highest on the market but again, incredibly expensive.

Most sources are soy but you can find sunflower lecithin out there. I think pretty much all the best quality brands are soy though, it's probably the cheapest.

 

[jason30]

A 50% or higher concentration of PC. The Jarrow is 35%, I'm not sure about the other one. BodyBio is 68% or something, Its the highest on the market but again, incredibly expensive.

Most sources are soy but you can find sunflower lecithin out there. I think pretty much all the best quality brands are soy though, it's probably the cheapest.

That's clearly, thanks for the explanation.

 

[jason30]

I love powders so i go for this new product from Now: http://www.iherb.com/Now-Foods-Sunflower-Lecithin-Pure-Powder-1-lb-454-g/59514

 

[renski]

I found Quicksilver pure PC to be much more powerful in its effects then Sunflower lecithin or even Seeking health's optimal PC. Bodybio as well, these are liposomal so will be more effective. Lipophos forte is another option.

 

[gbells]

I'm a 37 year old guy. I have mostly recovered from AFS (adrenal fatigune syndrome) by following Dr. Lam's protocol of taking vitamins, doing yoga, meditation, low carb diets, etc. But I still have low energy. I would describe my present condition as mild CFS.

The apparent cause of my CFS is oxidative stress after 8 years of an extreme lifestyle (workaholic, athletics, partying). During this time I also used (not abused) stimulant ADD medication to help me work and study.

My main CFS symptoms are photosensitivity & PEM.

I am fairly strong - I work 35 hours a week, do hot power yoga, go on dates, etc. But on the evenings and weekends my mitochondria can't produce enough energy to do "extra" activities. I have to lay around and recover and can't live a normal life - only working, housework, exercise, rest - "surviving."

I tolerate Vitamins C, D, E and Bs... magnesium, ashwaghanda, licorice, thyroid glandular, astaxanthin... very well. I tolerate most supplements at normal doses except mitochondrial supplements. I seem to respond well to liposomal glutathione and glutathione promoting substances (NAC).

the standard CFS supplements produce more energy in my body... but they are many intolerable for one reason or another.

D-ribose - 750 - 1500mg works but is very short acting, causes unpleasant "crash" when it wears off very suddenly. The standard 5 gram dose is unbearably overstimulating.

Acetyl-L-carnitine - 500mg makes me anxious and WIRED... pacing, shaking, tweaking out. Yuck!

NADH - 2.5mg is tolerable and works occasionally, but taking it on consecutive days causes "tingling" in my extremities, and a "something just isn't right" feeling that is hard to describe.

Swanson Cardioplex - On Sunday at 10 am I took this low dose, Ribose-Carnitine-Q10-Magnesium pill and it shot my energy WAY up... enough to get me working on household projects. But by 3pm I totally ran out of steam. I was flagging, dragging and super depressed. I'm sure a re-dose would have fixed me, but I didn't like how fast it dropped off.

NAC - 600mg gives a gentle uplift in mood, libido, energy for several hours. Works as described, no bad effects. But not really strong enough to get my energy levels close to normal.

CoQ10 - Yesterday I took 25mg of liquid in the AM and it was AMAZING. I felt loads of energy rushing through my body, full of vigor. But by 5p.m. I was feeling anxious, overloaded & uncomfortable. It was a little hard to fall asleep. I woke up feeling a little bit frazzled (similar to over-exertion feeling) the next morning. Today I took 12.5mg of CoQ10 formula and it seems to be effective, but not overwhelming. I feel very good, spring in my step, positive, even caught myself humming & signing. I am really hoping that I can go "low and slow" with Q10 and tolerate it. Please God!


Based on my case history above - Can anyone please help or interpret why I may be having this sort of sensitivity reaction, what this means, what I should do or try?

Several herpes viruses disable the mitochondrial pathway so if you have one your body won't be able to effectively generate energy through that pathway. What I think is happening is that if you take a mitochondrial supplement then the cells probably won't utilize it and the supplement will just build up and overdose, causing the symptoms,

Regarding glutathione I think
Jarrow Formulas, S-Acetyl L-Glutathione, 100 mg, 60 Tablets
is more economical than the liposomal form. I use it and like it.