Re: Carnitine & Coenzyme Q10 & immune stuff....

[Guest guest]

Hi Kassiane,

I do think a trial of CoQ10 and acetyl-l-carnitine would be

beneficial to you. Definitely everyone over 40 DOES need to

supplement CoQ10, but it has many potential benefits for you as

well. It is primarily known for its benefits to the cardiovascular

system, since it is a central enzyme involved in ATP production. It

helps combat fatigue, boosts immunity, helps with adrenal exhaustion,

improves general mood, sense of humor and stops feelings of sadness.

You definitely want to take acetyl-l-carnitine and not just plain l-

carnitine. The acetyl group helps it cross the blood brain barrier

by making it fat soluble and it can then enter the central nervous

system. The acetyl group can then be used to make acetylcholine.

ALC has a number of functions in the body, but what seems most

relevant to your situation is that it supports nerve transmission and

healthy nerve cell growth by reducing free radical damage. It also

helps break down and clear out beta amyloid plaques in the brain,

essentially keeping the brain free of " clutter " . Who needs clutter,

right? It also supports healthy liver function, facilitating detox.

> Aren't doctors fun? They throw you on one thing and another and

> make diagnoses and

> then they say " huh. Maybe some of this is caused by something

> mitochondrial or similar.

> Try L-Carnitine, and CoQ10, and see what happens. " Um, OK. No

> tests, just try the

> supplements and see if they help. Fine. Taurine helps the seizures,

> maybe this stuff can

> help too...its a doctor I trust...

>

> But does anyone know anything about them? At all? I can't find much

> that isn't either

> declaring quackery or declaring that EVERYONE needs them, I want a

> bit more of a

> balanced picture (can't imagine why!).

>

[Guest guest]

My daughter was ALWAYS sick but we boosted her immune system with Colostrum

suppliments. It is from cows but has no casein or lactose in it. Now my daughter

hardly ever gets sick!

Tina

[Guest guest]

Kassiane, have you seen a Naturopathic Doctor or a Classical Homeopath?

Prednisone is incredibly nasty stuff. It SUPPESSES your immune

response, pushes illness and disease INWARD. Homeopaths and

naturopaths say that the illness and disease have to find another way

out of the body, and that is often in the form of a different illness

or disease. A lot of people with auto-immune diseases have been on

steroids like prednisone for a long time.

Co-Q-10 is an antioxidant, and my primary care physician recommended

it to me to take daily. He recommends it to all his patients.

L Carnitine is, gee, what is it? An amino acid? A lot of families

with children with autism are using L-Carnitine. I've seen parents on

chat lists discussing a product called " Carn-Aware " , so it must have

something to do with neurology. (I don't have time to research it at

the moment--it's time to get my kids up and ready for school).

Here's a link to locate a Naturopathic Doctor:

http://naturopathic.lv0.net/DesktopDefault.aspx?tabindex=51 & tabid=59

And one to locate a Classical Homeopath:

http://www.homeopathy-

cures.com/html/referrals_to_homeopaths.html#Illinois-New

There are Naturopathic Doctors who use an Electro Dermal Screening

machine where they hook you up to a scanning computer that tells you

all sorts of information about what's happening inside you. The

machine runs some sort of current along your meridians and in about 20

minutes provides a report about all your organs and systems, what

toxins and meds are in your system, food allergies etc. Then the ND

uses that info to determine a course of treatment with homeopathic

remedies and vitamins and minerals.

Classical Homeopaths take your case in a face-to-face interview, and

the initial meeting can be long and involved. They take a detailed

case history and determine the one remedy that most closely fits your

case. These people have presented at ASA conferences about homeopathy

and autism: http://www.healthyhomeopathy.com/default.htm

Food for thought, anyway.

PennY

[Guest guest]

Penny,

Actually, Carn-Aware is L-carnosine not L-carnitine. Carnosine is a

dipeptide while Carnitine is an amino acid derivative. Carnosine can

benefit some people but it can exacerbate seizure activity and

hyperactivity in some kids, so you have to be careful.

> L Carnitine is, gee, what is it? An amino acid? A lot of families

> with children with autism are using L-Carnitine. I've seen parents on

> chat lists discussing a product called " Carn-Aware " , so it must have

> something to do with neurology. (I don't have time to research it at

> the moment--it's time to get my kids up and ready for school).

[Guest guest]

Kassi, I too be want to have of my life never had it but cant seem

to find it either. Been of sickly person all of life but as i to say

in tears to my doctor a few days back would like to experience what

it feels like to feel well. I to get glimpses every once in a while

but it is ever so brief. I to be sick more than well.

I to be thankful nothing found has been of a serious illness like

diabetes and or other things but constant infections over and over.

Mostly allergy related and female issues realted, and the migraines

and gut bloatings and such. All things that make me feel not well

all the time.

Was put on steriods recetnly and some eye drops to keep my eye from

constant tearing. The tearing stopped some yesterday , day 5 of the

seriods. The nasal can breath some better but stillnot well as it

agrivated the tummy so now the tummy keeps making loud sounds and is

bloated and gassy. Had diarhea from the medications yesterday so

much , much tummy pains that day.

Anyways sorry you are so ill with many serious things andhope you

can be to find answers to you illnesses too.

Will you be at the national conference this year.

Sondra

[Guest guest]

Oops! I wasn't awake, was I? Thanks for the clarification. (We've

not used either L-carnosine or L carnitine nor Carn Aware).

PennY

>

> > L Carnitine is, gee, what is it? An amino acid? A lot of

families

> > with children with autism are using L-Carnitine. I've seen

parents on

> > chat lists discussing a product called " Carn-Aware " , so it must

have

> > something to do with neurology. (I don't have time to research

it at

> > the moment--it's time to get my kids up and ready for school).

>

>

>

>

[Guest guest]

Kassi, I'm sorry you're so sick. I think some of this is among your

list. When I kept getting sick last year (was on antibiotics 8 times

in 10 mos) I began taking beta-glucan (1,3-1,6 version Kirkman to be

exact), vit E, 2g vit C, and folinic acid. I did research each one at

the time. The beta glucan was originally referred from a friend who

had breast cancer. There is some evidence that it can trigger

auto-immune stuff, but I've already got psoriaic arthritis and i can

say I feel better now than then. The vit E helps lung tissues, and I

forget why I chose the folinic, oh yeah, 'cause I had been on

metformin for over a year and it's a fact (my comp is down or I would

link you to the actual page, I think it's the FDA or CDC site for

herbal stuff) that metformin zaps the folate from the body, and folate

keeps us healthy. Vit C i took just because it's vit C, lol.

HTH, I can reference this stuff in a few days, if hubby EVER gets my

new system going, he's gonna put my old hardrive with all my links in it.

HTH,

Debi

[Guest guest]

Someone posted on the abmd board that the carnitine works best if it's

a pharmaceutical grade, that it's not all created equal.

HTH,

Debi

[Guest guest]

Kassi,

I see that you didn't list zinc as one of your supplements. If you haven't

already, consider having your blood copper/zinc ratio tested. The ratio

should be 1:1 but many people have too much copper. If you do, you can

supplement with zinc, which may really really help with the colds! It did

with my kids, who were non-stop sick during the fall, winter, and spring.

Now, maybe they'll catch something once or twice a year, which is normal.

Keep in mind that it may happen, as in Sondra's case, that you have too much

zinc but it doesn't show on the blood tests. In that case, I'd recommend

that you let your body and senses be your guide. If adding zinc makes you

feel way worse, drop it.

Hope that helps,

Inna.

On 27 Mar 2006 18:19:23 -0000, Autism_in_Girls <

Autism_in_Girls > wrote:

>

> There are 25 messages in this issue.

>

> Date: Mon, 27 Mar 2006 06:49:57 -0000

>

> Subject: Carnitine & Coenzyme Q10 & immune stuff....

>

> Aren't doctors fun? They throw you on one thing and another and make

> diagnoses and

> then they say " huh. Maybe some of this is caused by something

> mitochondrial or similar.

> Try L-Carnitine, and CoQ10, and see what happens. " Um, OK. No tests, just

> try the

> supplements and see if they help. Fine. Taurine helps the seizures, maybe

> this stuff can

> help too...its a doctor I trust...

>

> But does anyone know anything about them? At all? I can't find much that

> isn't either

> declaring quackery or declaring that EVERYONE needs them, I want a bit

> more of a

> balanced picture (can't imagine why!).

>

> Also--my immune system is in the TOILET since starting prednisone for my

> pituitary

> failure. It's not even a high dose (5mg, my doc says it's the lowest

> effective amount he's

> seen in an adult), but still, whenever I go anywhere, I catch Bug Du Jour.

> This means that

> after gymnastics on Tuesdays, I spend till Friday with a cold or

> flu-symptoms or whatever.

> I spent 7 months being sick, the idea was to get UNsick!

>

> I figured here, people would know what's good for chronic immune problems

> (we are also

> getting an immunology referral, but those take AGES). Just stuff I can do

> or take, anything,

> would be really helpful to know about. Right now I'm gluten free,

> artificial-free, limited

> salicylates (tolerance waxes and wanes, most annoying) as far as diet

> goes. I take

> anticonvulsant medication, which I expect to switch Tuesday, but I'm good

> at drug

> interaction finding...and a snotload of supplements: alpha lipolic acid,

> MSM, a good

> multivitamin with b-complex, a good multimineral with no extra iron, extra

> magnesium,

> CoQ10, L-Taurine, L-Carnitine, extra vit. E & A, extra C when I'm sick,

> and fish oil for

> omega-3s. I also take shark liver oil when I'm sick, and just started

> colostrum. I'm going

> to turn into a pill!

>

> As far as anyone knows, is there anything else I can do? Since I've got

> diabetes insipidus in

> addition to central adrenal failure, I kind of pee a lot, hence all the

> extra vitamins.

>

> Sorry so long. I'm just sick of being sick. I want my life back, yanno?

>

> Kassiane

>

[Guest guest]

Kassi, I also thought of this for you:

JAQUELYN McCANDLESS, M.D., JULY 2005

LDN - LOW-DOSE NALTREXONE FOR IMMUNOMODULATION

Naltrexone is an FDA-approved drug used as an opiate antagonist for

treating opiate drug and alcohol addiction since the 1970's, available

in generic form as well as ReVia in 50mg tablets. At regular dosing,

usually 50mg a day, it blocks the euphoric response to opiate drugs

such as heroin or morphine. Opioids are known to operate as

cytokines, the principal communication signalers of the immune system,

creating immunomodulatory effects through opioid receptors on immune

cells. A popular immune classification method is referred to as the

Th1/Th2 balance; Th1 cells promote cell-mediated immunity while Th2

cells induce humoral immunity. The inability to respond adequately

with a Th1 response can result in chronic infection and cancer; an

overactive Th2 response can contribute to allergies and various

syndromes and play a role in autoimmune disease, which most ASD

children show on immune testing. From the 11-13-2003 issue of New

England Journal of Medicine: " Opioid-Induced Immune

Modulation…Preclinical evidence indicates overwhelmingly that opioids

alter the development, differentiation, and function of immune cells,

and that both innate and adaptive systems are affected. "

Bernard Bihari, MD, a New York physician studying the immune responses

in AIDs patients, discovered that a very low dose of naltrexone in

less than one-tenth the usual dosage boosts the immune system and

helps fight diseases characterized by inadequate immune function.

Low-dose naltrexone (LDN) tends to normalize the immune system by

elevating the body's endorphin levels and accomplishes its results

with virtually no side effects or toxicity; naltrexone is considered

very safe and has never been reported as being addicting. When this

tiny dose of naltrexone is given between 9-12pm at night the body

attempts to overcome the opioid block and the endorphins rise, to stay

elevated throughout the next 18 hours. Studies in human cancer

patients show that LDN acts to increase natural killer cells and other

healthy immune defenses against cancer. Restoration of the body's

normal production of endorphins in those with cancer or autoimmune

diseases is the major therapeutic action of LDN.

LDN had been studied in ASD children using from 5-50mg daily or every

other day in the early 90's; researchers were looking for opioid

antagonism. Panksepp and other researchers noted better results with

low doses; studies on higher doses were more equivocal in children,

with non-compliance due to the bitterness of the drug. Dr. Tyrus

at Coastal Compounding agreed to create a transdermal cream for

my study; that way we could adjust the dose easily (some of the

smaller kids did better with only 1-1/2mg), the bitter taste was no

problem, and it could be put on their bodies while they slept. The

cream is put into syringes, ½ cc provides 3mg for children or 4.5mg

for adults.

I completed an 8-week informal clinical study on 15 of my ASD patients

using 3mg of LDN transdermally between 9-12pm. Several adults

participated also, one with Crohn's Disease and one with Chronic

Fatigue Syndrome using 4.5mg nightly. Parents reported weekly; 8 of

the 15 children had positive responses, with five of these 8 having

results considered quite phenomenal according to their parents. The

primary positive responses have been in the area of mood, cognition,

language, and socialization. 5 of the children had equivocal results

and three children dropped out, one because of no response after 4

weeks, the others for non-drug related issues. Two small children

responded better when changed to 1-1/2mg dosing. No allergic reactions

were noted to the cream, with the primary negative side effect being

insomnia and earlier awakening when first taking it. The two adults

in the study had very positive responses; the Crohn's participant says

she has been in remission since starting LDN (almost 3 months now).

All my study children were on well-controlled dietary restriction. I

am receiving reports from the e-lists I monitor of about 5% of other

children having side effects such as irritability, agitation, and

restlessness, subsiding as soon as the drug is withdrawn. I am

querying these parents about gluten/casein/soy in diet, as this is

very likely withdrawal symptoms of opioid block. I suspect that

children on a strict GF/CF/SF diet are less apt to show this response.

I do not know the cause of the immediate positive

mood/cognitive/relating effects; it is unlikely the immune benefits

are showing this quickly. On other autoimmune groups, the evidence is

that the optimum immune response can take 4-6 months. I am hoping

LDN will be another weapon in our ever-expanding arsenal to help the

children get as immune-efficient as possible, and clinical responses

must be what we go on for now, as it will take time to get a research

study done. Evaluative lab tests show that the majority of our

children have autoimmune issues. In my opinion an intervention that

is effective, non-toxic, non-invasive and inexpensive is worth a try

to help our children get as immune-efficient as possible.

I want to thank my trusting patients who participated in the study, as

well as Dr. Tyrus at Coastal Compounding for helping devise a

successful form to use in our children. (Dr. has offered to

share his formula with any compounding pharmacist who wishes to call

him, ). I have started a yahoo e-list for reporting and

discussion of this intervention; Autism_LDN .

Jaquelyn McCandless, M.D. July 2005