Re: New here - Long post - possible complex 1

[Guest guest]

welcome Nikki.

I don't post often. I have two kids diagnosed with

Mito, but they don't know which one. it isn't one that

has been discovered yet, but the kids fit a mito

profile. my son is on a mito. cocktail....

riboflavin, carnitine, and co-enzyme q-10.

We started with just carnitine and immed. saw

improvements. Now with the whole cocktail...he is

stronger!!!!

Arlene

--- nikkinet@... wrote:

> Hello, This is my first post here. I am a 20 year

> old Female with a

> mitochondria disease that was just diagnosed. The

> doctors believe I

> have had it since birth, but it took them a long

> time to catch it.

> They are still working on which one it is, but think

> it might be

> Complex 1 or carnintine-something-carnitine. I cant

> remember the

> whole name. I will find out next month when I see my

> neuro muscular

> doctor which one it is. I also have Central Sleep

> Apnea, Seizures

> and a myopathy/myalgia that they think is from the

> Mitochondria

> problem. I use a wheelchair to get around, and my

> situation is

> progressive. Each year I have less and less energy

> and each year my

> muscles seem to get weaker. I use a Bi-Pap ST at

> night to help me

> breathe because of the Apnea, I use a SMART monitor

> to monitor the

> apnea, I use a pulse ox, and an o2 concentrator as

> needed, and an

> oxygen oxylite system during the day for fatigue and

> lack of o2. The

> docs are working on getting me a capnotmeter, a

> machine that measures

> how much co2 I am blowing off. The weakness in

> muscles is everywhere,

> but the doctors are really worried about my lung

> muscles and my

> heart muscles. I have a lot of lactic acid buildup

> that causes pain.

>

> I have several questions and hope maybe someone here

> can help. Is

> this condition common in children and adults or one

> specific group? I

> keep reading that there is no treatment and no cure,

> is that true? Do

> any home remedies or diets or anything help? Is

> there anything I can

> do to get more energy? The doctors have me on 6

> grams of Creatine to

> help with energy, but they told me that is not a

> long term treatment

> and could hurt my kidneys, they arent sure. It

> doesnt give me very

> much anyway, but significantly MORE than what I had.

>

>

> I am really grateful for this board and everyone

> here. Any help you

> could give me would be greatly appreciated. Thank

> you so much!

>

> Nikki

>

>

>

=====

beaniex5

__________________________________________________

[Guest guest]

wendy, you explained it very good. my family is affected. my sister and

mother were thin and very, very short. they died from this before it was

well diagnosed. i on the other hand have very few symptoms and am just now

taking the supplements.

Nikki, i was introduced to the group . they are doing some tshirts

for the mito conference coming up in san diego. maybe one of the leaders

can contact you?

Re: New here - long post - possible complex 1

> Hi Nikki.

> Welcome to the list. I don't know that I can help you with all of your

questions, but I can tell you that

> there is no one group of people that mito affects.

> Some kids are affected from birth, while other people don't show signs

until adulthood. Some people are

> very severely affected, while others are so mildly affected that it's

difficult to make the diagnosis. And

> of course, everywhere in between. Even within one family, there can be

that difference in presentation.

> And no two people with the same diagnosis will experience the exact same

symptoms and severity of

> symptoms, if that makes any sense.

> Along with that, it makes it impossible for anyone to tell you what will

definitely work for you. It's a

> trial and error situation, because the vitamins and supplements that help

someone else might not

> necessarily work for you. There is no cure for mito at this time. There

are supplements known within the

> mito community that have helped some people. Some one else is gonna have

to jump in here, though, because

> I never had any good results for with the supplements. As for

diet, that is something that is very

> specific to each person, and something that you will need to discuss with

your doctor. For example, we

> knew that fructose made my son's lactic acid levels skyrocket, so he was

put on a fructose-free diet, but

> that is not appropriate for everyone. Some people seem to have trouble

with carbohydrates, while others

> are okay with carbs, but don't do well with proteins or fats.

> Sorry I couldn't be more help, but I'm sure that someone more

knowledgeable than I can step in and help

> some, too.

>

> , momma to

> ^^ 12/23/98-6/9/00

> Pearson's syndrome and Kearns-Sayre syndrome

> (And Gracie and Adri too!)

>

>

> nikkinet@... wrote:

>

> > Hello, This is my first post here. I am a 20 year old Female with a

> > mitochondria disease that was just diagnosed. The doctors believe I

> > have had it since birth, but it took them a long time to catch it.

> > They are still working on which one it is, but think it might be

> > Complex 1 or carnintine-something-carnitine. I cant remember the

> > whole name. I will find out next month when I see my neuro muscular

> > doctor which one it is. I also have Central Sleep Apnea, Seizures

> > and a myopathy/myalgia that they think is from the Mitochondria

> > problem. I use a wheelchair to get around, and my situation is

> > progressive. Each year I have less and less energy and each year my

> > muscles seem to get weaker. I use a Bi-Pap ST at night to help me

> > breathe because of the Apnea, I use a SMART monitor to monitor the

> > apnea, I use a pulse ox, and an o2 concentrator as needed, and an

> > oxygen oxylite system during the day for fatigue and lack of o2. The

> > docs are working on getting me a capnotmeter, a machine that measures

> > how much co2 I am blowing off. The weakness in muscles is everywhere,

> > but the doctors are really worried about my lung muscles and my

> > heart muscles. I have a lot of lactic acid buildup that causes pain.

> >

> > I have several questions and hope maybe someone here can help. Is

> > this condition common in children and adults or one specific group? I

> > keep reading that there is no treatment and no cure, is that true? Do

> > any home remedies or diets or anything help? Is there anything I can

> > do to get more energy? The doctors have me on 6 grams of Creatine to

> > help with energy, but they told me that is not a long term treatment

> > and could hurt my kidneys, they arent sure. It doesnt give me very

> > much anyway, but significantly MORE than what I had.

> >

> > I am really grateful for this board and everyone here. Any help you

> > could give me would be greatly appreciated. Thank you so much!

> >

> > Nikki

> >

> > Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

>

> Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

[Guest guest]

nikkinet@... wrote:

> I have several questions and hope maybe someone here can help. Is

> this condition common in children and adults or one specific group?

Hi Nikki, welcome to the list.

To answer your first question, there is no certain age group for this disease.

From what we know it is

genetic, most of the time, and can be apparent at birth, in some cases, or

gradually appear in childhood.

Some children appear to be healthy and normal, and then with their first

childhood illness become

symptomatic. There are also adults who either become symptomatic enough to get

a diagnosis in adulthood,

or gradually become symptomatic as they age, but can remember certain symptoms

from childhood that were

never evlauated or diagnosed. So there is a very wide range.

I have three children, aged 22, 19, and 12. All three are symptomatic in

varying degrees, but the

youngest is the only one that was biopsied. She was the most severely affected,

and after her diagnosis,

the others were presumed to have the same thing.

> I keep reading that there is no treatment and no cure, is that true?

No there really isn't an iron clad treatment, or cure that works for everyone.

But there are lots of

things that you can do to try to stave off the progression of the disease and

remain more stable.

Different things work for different people, and even when two people with the

same complex defect try the

same thing, they may respond differently. We have learned a lot along the way,

and much of what we have

learned has definately improved my daughter's quality of life. Things that were

originally thought to be

insignificant, we have learned to take more seriously and it's really made a

difference. Even though

there is no cure, there are some things that we do know can potentially make the

disease worse. There are

some things you can avoid, like MSG, possible dietary changes, certain drugs,

and getting overtired etc,

that can make your quality of life better. Anti-oxidents like Co Q, Vitamin C,

Vitamin E, Alpha Lipoic

Acid, are thought to help slow down the progression of the disease, and there

are other supplements that

can be helpful as well. Carnitine is helpful to many of those with mito, even

if they don't have a

deficiency. It seems to help the muscles work more efficiently and help with

some of the fatique. The

important thing is to work with your doctor, and remember to only try one thing

at a time. That way you

will be sure to know which is helping and which is making things worse. What

works for one, may make

another worse, depending upon where your defect is. We always add things slowly

and increase gradually.

One dose may be helpful, and a higher dose may be detrimental.

In our situation, with our defect at complex four, we have to be very careful

not to overload the system.

Some of these supplements work, but too much can be worse than not enough. We

already know there is a

" bottleneck " at complex four, and if we over do with supplements, we can

potentially make that bottleneck

worse. So we proceed cautiously with any changes or additions. Having said

that, however, we have seen

great improvement with the addition of some of these supplements. They have

really made a difference for

my youngest child, espeicially. She was, until this year, homebound schooled,

and is now attending school

full time.

With my daughter, keeping fluid retention to a minimum has helped her

respiratory issues dramatically. We

treat her symptomatically and now things are more stable than they have ever

been. Manipulating her diet

also makes a huge difference in her energy level, and we all respond

impressively to CoQ and Carntine,

with regard to energy and endurance.

> Do

> any home remedies or diets or anything help? Is there anything I can

> do to get more energy?

I would highly recommend that you talk to your doctor about carnitine. It's

definately worth a trial, to

see if your energy level improves. Although it is a prescription drug, used to

treat fatty acid disorders

as well as carnitine deficiency, many mito patients benefit from it.

Also look at your diet, my kids have always done better with frequent small

meals and snacks during the

day. This helps stabilize their blood sugar, and using a high protein or corn

starch snack at night helps

to get them thru the night time fast. Previously, fasting at night, was causing

them to wake up in a

deficit and they were considerably more weak, and less energetic in the morning.

Our family responds with

more energy, to a diet higher in protein, and less carbohydrates during the day.

But that is a very

individual thing. You have to see what you can tolerate and what makes you feel

better.

I am of the opinion that diet is a lot more significant than anyone realizes.

However, there are vast

differences in what people with mito tolerate. Some cannot tolerate high fat,

and do better with more

carbs, others like us, do better with low carbs and higher protein. It all

depends upon what type of

defect you have and what you can metabolize. Sometimes trial and error is the

only way to learn.

> The doctors have me on 6 grams of Creatine to

> help with energy, but they told me that is not a long term treatment

> and could hurt my kidneys, they arent sure.

I have been told that this only improves the energy situation for a matter of a

few weeks, so it is best

only used during periods of crisis. Long term use not only yeilds little

benefit, but as you mentioned,

can put your kidneys at risk.

Jeannine

[Guest guest]

Dear Nikki,

I am a 28 year old female with mito disorder (undiagnosed). My youngest daughter has undiagnosed mito disorder (probably Complex II,but they are also testing for fragile X) she had grand mal seizures at birth and she has a patent ductus arteriosis which will be closed via a catheter on Jan. 29th. My first daughter has Complex II. She had grand mal seizures and apnea in infancy, but is doing fine right now on her meds. She looks and acts like a totally typical child, but she has had her share of health problems (Atrial Septal heart defect and Kawasaki's disease), and I fear that she will have problems in the future. But none of us know what the future holds. I was told that the seizure disorder I had in infancy was probably caused by the mito disorder and I just passed it right on to my kids. I never had any other symptoms until recently, which I am not sure are related to the disorder!

, but I am assuming that they are.

I developed a severely underactive thyroid after the birth of my second daughter. I am at 150mcg of levoxyl and still haven't leveled out. I also take a very low dose antidepressent which helps me sleep and takes away my migranes (elivil). I recently started working out and focus primarily on weight training, and I haven't felt this great in a very long time (although it takes me longer than most people to recover from a strenuous workout and I get a little bit cranky in the process of muscle recovery!) I also take creatine, co Q10, and carnitine. I also supplement with vitamins C, E, B complex, L-lysine, tyrosine (helps with co Q10 absorbtion), calcium, magnesium, and other basic vites. I try to drink lots of water and eat small snacks throughout the day to keep my energy level up. Still, there are days where I feel like my eyes just want to close and I am not functioning to my full !

potential. I have yet to get a diagnosis, but I am thinking that maybe it's better this way (for me anyway). I think if I knew my worse case scenario, I would tend to drift towards it and worry or feel depressed most of the time. I just try to act like it won't get any worse, and take care of myself the best I can. I pray alot too!

I wish the best for you in your situation. I really hope you can find the help you need right now. The most important thing is to surround yourself with very supportive people.

Best Wishes,

Jayne Nelsen (Carly, Complex II, and Madelyn, undiagnosed)

[Guest guest]

Jayne, you are doing great things for yourself and your children. Keep it up.

Virginia, Emma

Virginia M. Buchanan