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Mitochondrial tests and treatments

Dr.Patient

There is no kinship like the one we share!
Messages
505
Location
USA
I have patiently read through the posts on mitochondrial tests. I'd like to put together in one place these mito tests and treatments. Could you please post whether your mitochondrial tests (blood, biopsies, etc) if done, were positive or negative, and if mito treatments (co-q 10, NADH, carnitine, etc-not sleep, diet) helped or not,- if they helped, by how much and in how many months. Thanks everyone!
 

Sushi

Moderation Resource Albuquerque
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19,934
Location
Albuquerque
I had ATP, NADPH & Methione tested--all were quite low. This was not a commercial lab test but done privately by a biochemist at a commercial lab.

I tried the supplements you listed above plus D-Ribose for a long time but didn't notice any effects.

Sushi
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,079
Location
australia (brisbane)
Nad not nadh has given me a boost.

q10 recently increased my morning dose from 100mg to 300mg looking at further increases as this current increase is helping. Dropped the night time dose as it maybe to activating.

acetyl l carnitine 500mg has helped, initially too activating but now OK and will experiment with higher dose.

Creatine 5 to 10mg has helped some.

ribose I'm not sure about to try it again. Just not consistent mixing powders etc about to try pills at 3000mg twice a day.

pregnenolone which is a steroid also play an important part in mito function. Transdermal cream is what I have found useful, start low and slow as it can be very activating at first.

I think initially these supps can be over stimulating but this settles with time and dose adjustments etc. Again I think it may not be an individual supp that's working but the sum of the parts??

I haven't had any testing for mito function. It is just extremely expensive and works out cheaper for me to just try these supps. Health scope is the pathology lab that does this type of testing in Australia.
 

xrunner

Senior Member
Messages
843
Location
Surrey
Diagnosis: I was diagnosed with ME/CFS at the Royal Free hospital in London in '06, later confirmed at St Charles Hospital and privately. (this wasn't one of the question but you may want to compare apples with apples)
Testing: between '07 and '09 repeated blood tests at Biolab and later Acumen showing (for what such tests are worth) low atp, low magnesium, impairments recycling adp/atp, blockages in translocator proteins (adp/atp), low b3, low co-q10 and many other abnormalities and deficiencies I can't recall.
Treatment: magnesium, carnitine, d-ribose, co-q10, multimineral, multivitamin. (NADH tried it briefly bcause gave me extreme jitteriness).
After about nine months change of dr and protocol with a different all encompassing mitos support supplement (can't' remember brand), b12 injections, magnesium injections, phospholipid exchange.
Outcome: Before I started was moderately affected, got gradually worse and spent almost three years housebound. Stopped any mitos treatment at the end of '08.
I'm now recovered more or less 50-60% and can moderately exercise (thanks to other treatments).
 

xks201

Senior Member
Messages
740
None of the so called mitochondria booster nutrients helped me. And that's probably because in my opinion cfs is not resulting from a deficiency in those nutrients.
 

Gingergrrl

Senior Member
Messages
16,171
@Dr.Patient Excellent question and I will share what I have so far re: mito test/treatment.

My naturopath ordered some kind of mito functioning test kit for me but it has not arrived to her office yet. I do not know what it is called but as soon as I take the test, I will post all the info here.

I have been taking the following mito boosting supplements but just started recently so too early to tell how they are working:

D-Ribose (3x/day)
CoQ10
Liposomal Glutathione
Freeze dried acai berries
Vit C (2x/day)

I was unable to tolerate L-Carnitine and it made me agitated with insomnia.

My ND is recommending IV Glutathione but I have not tried it yet.
 

Dr.Patient

There is no kinship like the one we share!
Messages
505
Location
USA
Has anyone had any muscle biopsies that show or don't show any mitochondrial abnormalities? There is a nice thread here on muscle biopsies started by Snow Leopard, but no activity on that since 2012, thanks.
 

SDSue

Southeast
Messages
1,066
Early on, I saw a mitochondrial specialist and had a buccal enzyme analysis. My citrate synthase was 274% above normal, indicating mitochondrial dysfunction. No abnormalities were found in extensive!!! blood work.

I was put on a mito cocktail of 600 mg ubiquinone, 1,000 mg L-carnitine, 100 mg Riboflavin, and 600 mg ALA. I noticed no difference after 1 year. D-ribose made no difference, nor did any other of the dozens of supplements I've tried.

IV glutathione crashed me from a level 5 or 6 to a 1 or 2 within an hour. I've not yet recovered from that hit.
 

Gingergrrl

Senior Member
Messages
16,171
@Dr.Patient I have not had a muscle biopsy or seen a mito specialist.

@SDSue What is citrate synthase? Is that what Dr. Myhill tests for or something different? Also, what did the IV Glutathione do that made you crash so hard? My ND wants me to try it (I have not yet) and now re-thinking after hearing stories like yours! I am so sorry that happened to you.
 

SDSue

Southeast
Messages
1,066
@Gingergrrl43 There are a few of us (@Freddd, @maryb, @Sushi that I know of) who've had bad experiences from glutathione, but it seems that most get a benefit?

I'm no expert at glutathione, but it is my understanding that one of the troubles can be it's role in redistributing heavy metals rather than actually chelating them and removing them from the body. Perhaps someone more knowledgeable about how it affects methylation can chime in with more so that you can make an educated decision.

Prior to the IV, I was still functioning at about 50%, reduced to working just 2 days per week despite bad IBS, brain fog, PEM, etc. I flew to PA to see a "CFS specialist" who administered the IV.

By the time I left the clinic an hour later, I could not stand on my own and my brain was fried - I ended up crawling in the airport in a pretty demented state, unable to formulate the simplest of plans to help myself. A stranger helped me get to a nearby hotel. 3 days later I made it home. I have yet to recover above a 2.

I had blamed the travel until I learned more about glutathione. Perhaps it was the combination, perhaps it was coincidence. The world may never know.

Citrate synthase is used to determine % mitochondria with intact inner membrane. It is used as a screening tool - if results are negative, one does not have mito dysfunction. If results are positive, one is likely to have mito dysfunction.
 

Helen

Senior Member
Messages
2,243
@Gingergrrl43 There are a few of us (@Freddd, @maryb, @Sushi that I know of) who've had bad experiences from glutathione, but it seems that most get a benefit?

I'm no expert at glutathione, but it is my understanding that one of the troubles can be it's role in redistributing heavy metals rather than actually chelating them and removing them from the body. Perhaps someone more knowledgeable about how it affects methylation can chime in with more so that you can make an educated decision.

SDSue, did you have a genetest including GSTgenes ? (E.g. the detox profile if you ran the data from 23andme through the GeneticGenie program). If so, any mutations/SNP´s?

Apologize @Dr.Patient for a question to SDSue in your thread, but I am thinking of genedefects and lowered enzyme activity in the glutathione-s-transferases that could decrease conjugating capacity.
 

Sushi

Moderation Resource Albuquerque
Messages
19,934
Location
Albuquerque
Has anyone had any muscle biopsies that show or don't show any mitochondrial abnormalities? There is a nice thread here on muscle biopsies started by Snow Leopard, but no activity on that since 2012, thanks.

Since the type of mitochondrial dysfunction most of us have is acquired, I had read that muscle biopsies would not show it? True, false?

Sushi
 

SDSue

Southeast
Messages
1,066
When was your IV Glutathione done?
June 19, 2012 at 11:30 am. Infamy.

@Helen - These are the relevant SNP's. (Also, I think I carry a huge mercury load - HEAVY exposure as a kid.)
Screen Shot 2014-06-30 at 6.33.35 PM.png
 

Dr.Patient

There is no kinship like the one we share!
Messages
505
Location
USA
@Gingergrrl43 There are a few of us (@Freddd, @maryb, @Sushi

Prior to the IV, I was still functioning at about 50%, reduced to working just 2 days per week despite bad IBS, brain fog, PEM, etc. I flew to PA to see a "CFS specialist" who administered the IV.

By the time I left the clinic an hour later, I could not stand on my own and my brain was fried - I ended up crawling in the airport in a pretty demented state, unable to formulate the simplest of plans to help myself. A stranger helped me get to a nearby hotel. 3 days later I made it home. I have yet to recover above a 2.

I had blamed the travel until I learned more about glutathione. Perhaps it was the combination, perhaps it was coincidence. The world may never know.

This is exactly what worries me as a physician. People try things they hope will make them better, but end up getting worse. The fact that your crash started an hour after the injection strongly points to the IV as a culprit! I've seen people with Bell's score of 80 still going to places to get to a 100. IMO, only people who are bedridden can try these questionable treatments, such as the irreversible IV injections. Anybody homebound or higher can try reversible things such as pills they can stop if making them worse. As far as diagnostics are concerned, same thing, nothing drastic like exercise stress tests, (for some people, it's either that or starve, I know...). I know of several people who got better in 5-10 years, so if at all possible, friends, leave your bodies alone to heal.
 

Dr.Patient

There is no kinship like the one we share!
Messages
505
Location
USA
Since the type of mitochondrial dysfunction most of us have is acquired, I had read that muscle biopsies would not show it? True, false?

Sushi
There are some papers on Snow Leopard's thread that show abnormalities in CFS pts, May be you can post that thread here?
 

AndyPandy

Making the most of it
Messages
1,928
Location
Australia
Since the type of mitochondrial dysfunction most of us have is acquired, I had read that muscle biopsies would not show it? True, false?

Sushi
I had a muscle biopsy done in February 2012. The summary says "Non-specific changes in muscle".

The comments say "The features are non-specific in nature and do not explain the patient's symptoms. There is no evidence of an inflammatory or mitochondrial myopathy".
 

SDSue

Southeast
Messages
1,066
This is exactly what worries me as a physician. People try things they hope will make them better, but end up getting worse. The fact that your crash started an hour after the injection strongly points to the IV as a culprit! I've seen people with Bell's score of 80 still going to places to get to a 100. IMO, only people who are bedridden can try these questionable treatments, such as the irreversible IV injections. Anybody homebound or higher can try reversible things such as pills they can stop if making them worse. As far as diagnostics are concerned, same thing, nothing drastic like exercise stress tests, (for some people, it's either that or starve, I know...). I know of several people who got better in 5-10 years, so if at all possible, friends, leave your bodies alone to heal.
This is a great example of my ignorance (and denial) costing me greatly. I was looking for someone to address my thyroid and adrenals, and ended up in the hands of a well-intentinoned but inept physician.

Therein lies the grave danger of primary care doctors' ignorance on these disorders. It leaves us fending for ourselves in shark infested waters.