Re: How long before improvement with cocktail?

September 6, 2005

More than improvement, I noticed slowing of progression. Just as it

was impossible to know abnormal when I had never known normal, when I

added and increased dosage of some of the supplements, it was hard to

tell if improvement occured. I will take what I can get.

laurie

>

> Just wondering how long it took before people noticed improvement.

>

> Mom to the two best kids in the world!

> http://www.caringbridge.org/visit/thomasandkatie

>

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> Medical advice, information, opinions, data and statements contained herein

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responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

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>

September 6, 2005

I've been lucky that I've either gotten side effects or improvement

within a few days with supplements. The exception was adding the

multi B vitamins, where I didn't notice improvement but over weeks

noticed that I was more " edgy " and " jumpy " which resolved after I

went off it (could have been the brand I guess).

On the other hand, when I do forget a supplement, I also notice

relatively quickly, certainly within a few hours.

YMMV, my experience, I know I am weird even among the !

The thing is that the mito cocktail isn't an exact science, and I

don't think anyone is taking all 15 or so of the components. I also

recall people mentioning adding one supplement at a time, and not

seeing improvement or stability of symptoms until they were on

several components of the cocktail. 'Course there is the added

variable about what brand works best for each supplement (for which

person LOL)...

Take care,

RH

> >

> > Just wondering how long it took before people noticed improvement.

> >

> > Mom to the two best kids in the world!

> > http://www.caringbridge.org/visit/thomasandkatie

> >

> > ______________________________________________________

> > Click here to donate to the Hurricane Katrina relief effort.

> > http://store.yahoo.com/redcross-donate3/

> >

> > Medical advice, information, opinions, data and statements

contained herein are not necessarily those of the list moderators.

The author of this e mail is entirely responsible for its content.

List members are reminded of their responsibility to evaluate the

content of the postings and consult with their physicians regarding

changes in their own treatment.

> >

> > Personal attacks are not permitted on the list and anyone who

sends one is automatically moderated or removed depending on the

severity of the attack.

> >

September 6, 2005

My almost 17-year old started them about a week ago.

He's had more energy than he's had in months for the

last day or two. His head is still hurting really bad

tho. He's taking Carnitor, CoQ10, Vitamin C and a

couple of other vitamins in addition to his other

meds.

He's also just finally realized that he can no longer

do algebra--he finished a semester of the class before

he went downhill but just can't understand now. His

seven year old sister has a far better short term

memory and he is angry about the situation. Can't

blame him at all.

Mom to the two best kids in the world!

http://www.caringbridge.org/visit/thomasandkatie

__________________________________________________

September 7, 2005

Is your son taking B2? This has really reduced my headaches. It is

being used by the leading head-pain clinics. It usually either works

well or not at all according to one of them.

I wish him well with the headaches. My son was hospitalized 4 times

for his and couldn't function until they were under control. Your

son's memory problems might be related to the headaches. Just a

possiblity.

laurie

> My almost 17-year old started them about a week ago.

> He's had more energy than he's had in months for the

> last day or two. His head is still hurting really bad

> tho. He's taking Carnitor, CoQ10, Vitamin C and a

> couple of other vitamins in addition to his other

> meds.

>

> He's also just finally realized that he can no longer

> do algebra--he finished a semester of the class before

> he went downhill but just can't understand now. His

> seven year old sister has a far better short term

> memory and he is angry about the situation. Can't

> blame him at all.

>

> Mom to the two best kids in the world!

> http://www.caringbridge.org/visit/thomasandkatie

>

> __________________________________________________

>

September 7, 2005

--- Laurie Fitzgerald laurie.fitzgerald@...>

wrote:

>

> Is your son taking B2? This has really reduced my

> headaches. It is

> being used by the leading head-pain clinics. It

> usually either works

> well or not at all according to one of them.

>

My son has tried B2 and it hasn't worked in the past.

He's recently started the cocktail and we're going to

try B2 again. He's been hospitalized for headache more

times than I can count. He's only marginally

functional. He's had severe daily pain for about seven

years. His memory problems are due to his cognitive

decline. Between 2002 and 9/2004 his IQ fell almost 2

standard deviations (shouldn't fall more than 4-5

points and it fell about 25 points--15 points is a

SD). He's going to be tested again soon and I'm sure

it's fallen a lot more recently. He's lucky that he

was in the very high normal range to start.

Yesterday he finally admitted that he is no longer

capable of finishing algebra. He finished one semester

but can no longer go forward. He can no longer do even

the work he's already done.

Mom to the two best kids in the world!

http://www.caringbridge.org/visit/thomasandkatie

______________________________________________________

Click here to donate to the Hurricane Katrina relief effort.

http://store.yahoo.com/redcross-donate3/

September 7, 2005

Has your son tried the diet for headache control? There is a list

under files on the from the head pain clinic that really

helped my son.

laurie

>

> --- Laurie Fitzgerald laurie.fitzgerald@...>

> wrote:

>

> >

> > Is your son taking B2? This has really reduced my

> > headaches. It is

> > being used by the leading head-pain clinics. It

> > usually either works

> > well or not at all according to one of them.

> >

>

> My son has tried B2 and it hasn't worked in the past.

> He's recently started the cocktail and we're going to

> try B2 again. He's been hospitalized for headache more

> times than I can count. He's only marginally

> functional. He's had severe daily pain for about seven

> years. His memory problems are due to his cognitive

> decline. Between 2002 and 9/2004 his IQ fell almost 2

> standard deviations (shouldn't fall more than 4-5

> points and it fell about 25 points--15 points is a

> SD). He's going to be tested again soon and I'm sure

> it's fallen a lot more recently. He's lucky that he

> was in the very high normal range to start.

>

> Yesterday he finally admitted that he is no longer

> capable of finishing algebra. He finished one semester

> but can no longer go forward. He can no longer do even

> the work he's already done.

>

> Mom to the two best kids in the world!

> http://www.caringbridge.org/visit/thomasandkatie

September 7, 2005

Hi ,

Has your son had his ammonia level tested? That can cause short term

memory loss. I just got my Ph.D. and sometimes don't remember how to

tie my shoes or type, but now I have my ammonia levels mostly under

control.

You may want to ask specifically about short-term memory loss and

confusion episodes next time you guys are at the doctor. When I

first got symptoms, I thought that was the end for me as a student,

but I was lucky enough to get thorough testing and treatment.

Don't give up hope (algebra is fun BTW, labile emotions (anger

for no reason is an example) is also associated with high ammonia

levels:

http://my.webmd.com/hw/lab_tests/hw1768.asp

http://www.emedicine.com/med/topic3185.htm

Note that I technically have " non-hepatic encephalopathy " , as my

liver function is fine (multiple tests). They think it is either

from the mitochondrial disease, or from an undiagnosed urea cycle

disorder.

Take care,

RH

> My almost 17-year old started them about a week ago.

> He's had more energy than he's had in months for the

> last day or two. His head is still hurting really bad

> tho. He's taking Carnitor, CoQ10, Vitamin C and a

> couple of other vitamins in addition to his other

> meds.

>

> He's also just finally realized that he can no longer

> do algebra--he finished a semester of the class before

> he went downhill but just can't understand now. His

> seven year old sister has a far better short term

> memory and he is angry about the situation. Can't

> blame him at all.

>

> Mom to the two best kids in the world!

> http://www.caringbridge.org/visit/thomasandkatie

>

> __________________________________________________

>

September 7, 2005

I'm another fortunate one who has had striking improvement with supplements,

aka cofactor therapy, but each supplement has addressed specific groups of

symptoms, and some had negative effects.

Riboflavin (started 1988) provided major benefit for my myopathy. Active

muscle disease started in 1964, but by 1988 attacks of muscle breakdown were

occurring on average one every ten days. These attacks were incapacitating,

and sometimes I did not recover from one before the next one hit. When I

started riboflavin, there were NO attacks of muscle breakdown for 6 months!

Daily pain level went way way down. My son had the same response. Riboflavin

markedly increased capacity for activity, improved muscle strength and

reduced the constant muscle pain. It did not halt the downward progression,

but it put me way back up the hill. Mechanism: Riboflavin is a cofactor for

many of the metabolic pathways in beta oxidation as well as complex I in

OXPHOS. All those pathways are impaired in our case, so its not surprising

that we would be so riboflavin-responsive. However, riboflavin-responsive

patients are rare from what I've seen in the medical literature, but have

been reported.

Carnitor (started 1988) greatly improved another complex group of symptoms

relating to attacks of severe abdominal and kidney pain, swollen belly, rash

and no urine. These attacks started in 1980 and in the beginning occurred

4-5 times a year, generally coming in clusters and gradually becoming more

frequent. Carnitor produced marked improvement (but did not cure) the pain

and it reduced frequency. The effects were apparent within 48 hours. Also,

for 6 months prior to taking Carnitor, my stools had been pale gray--the

color of cement. Within 24 hours, normal color returned. Mechanism:

Levo-carnitine is necessary in transporting long-chain fatty acids into the

mitochondria in beta oxidation (fat metabolism) and it also buffers

acyl-CoAs which have toxic effects when they are present in excess---which

is thought to happen in my beta oxidation disorder. I also have a documented

partial deficiency of carnitine.

Klor-Con EF (rx potassium citrate and potassium bicarbonate started in 1998)

had a marked effect on neuropathic symptoms and boosted energy and muscle

capacity for activity. Within a week, the burning in my hands, shoulders,

face, scalp were gone. The burning returns only during severe crashes and

resolves eventually once general symptoms improve. Mechanism: I do have

documented low potassium going back to the early 80s, but potassium is also

a cofactor for many of my impaired metabolic pathways. The bicarbonate form

may also benefit by neutralizing organic acids.

Creatine and K-Phos Neutral (started 2004) significantly boosted muscle

capacity for activity and have made it possible to participate in online

groups again. Mechanism: In most neuromuscular disorders, the amounts of

phosphocreatine in muscle are abnormally low. Phosphocreatine is an

alternate source for ATP (muscle fuel) and becomes more important when many

metabolic pathways that would normally produce ATP are impaired. By boosting

both creatine and phosphorous (K-Phos Neutral), one can " bypass " the

impaired pathways and provide more fuel for muscle. I have also had low

levels of phosphorous in serum documented on occasion, which in itself, I've

been told, can trigger muscle breakdown.

I have a negative response to Q-10 (tried on many occasions, various brands,

doses, etc.) as well as a number of other supplements listed in the mito

" three tier " scheme.

I should add that before-and-after muscle biopsies have documented increased

ATP and nucleotides in muscle due to treatment. I've gone into detail just

to encourage some of you regarding the potential of supplements. IMO, most

PCPs tend to underestimate both the potential benefits and potential harm

from the use of supplements in mitochondrial disease. When specific

cofactors are used to address specifically impaired metabolic pathways, the

results can be dramatic. This treatment has nothing to do with the general

practice of " taking vitamins " although that may be beneficial for some

people too. The rationale of cofactor therapy is entirely different, and so

are the effects.

And yes, I do believe antioxidants (vit E, vit C, etc) are important for