Off to the Cleveland Clinic

The Stag girls are seeing Dr. Natowicz for mito work today. I'll keep you posted. That's Bella' Mia and Gianna.

Comments

[empowerenergy]

oh, regarding mitococktail... if you register at UMDF.org you can get access to this: MITO 101: A Primer for Physicians and Patients http://www.umdf.org/site/c.dnJEKLNqFoG/b.4585961/k.C6AC/MITO_101.htm
it has really basic info...

my standard cocktail is:
Carnatine
Coq10
Alpha Lipoic Acid
B2 (Riboflavin)
Creatine
Multi vitamins
Potassium (for deficiency)

here are more details:
http://www.mitoaction.org/blog/mito-cocktail

Hope that helps!

[empowerenergy]

hello,
I have mitochondrial disease. it seems to have been triggered following anaphylaxis to my last tetanus shot in 1996. I have a dx'ed thimerosal allergy (dx'ed via patch testing).

I've met Dr Cohen (Cleveland), Dr. Haas, Dr. Wallace, and several other doctors. Dr Cohen DOES recommend vaccines for mito patients. I was in a session last week where he recommended them and the "protocal" for reactions following in mito patients... I was a bit disturbed... :/

Dr. Haas and Douglas C Wallace seem more open minded about vaccines. (both are in CA). Dr. Wallace has an Autistic Child as well... Wallace spoke last week at Mitochondrial Medicine 2009: Capitol Hill http://www.umdf.org/site/c.piKYL1PHLtF/b.4915211/k.D658/fontfont.htm it was an EXCELLENT lecture. He's also very down to earth!!! :]

Douglas C. Wallace:
Director, Center for Molecular & Mitochondrial Medicine and Genetics, Biological Chemistry
School of Medicine Phone: (949) 824-3490
Email: dwallace@uci.edu

University of California
2028 Hewitt Hall
Mail Code: 3940
Irvine, CA 92697

Dr Haas:
http://neurosciences.ucsd.edu/biosx.php?pageid=RHaas

they cannot do "fresh" biopsies, but they can do frozen and genetics testing there!

[Managing Editor Kim]

Hi, Sondra. I think you'll enjoy meeting Dr. Natowicz. Enjoy the summer and it's always a treat to hear from you.

Best,

Kim

[sondra]

Kim this is of the same doctor i to be of set to see in the fall time too. I to be of going to check of the mito issues for self since been of a sickly sort of person much of the life of me and much unexplained issues of health, fevers and pains and such and yet for self did not have of the full of vaccines as todays kids get of them. so lack what created of this for me , but do know in the family of me there is of much dx and undx of spectrum issues.
sondra.... who forgot how to get of here.

[kim]

kim, your kids are so lucky to have you. i can't wait to hear more about their results from this visit. thank you for throwing your family under the bus to share. i know it's not easy. love from the south.

[Teresa Conrick]

Benedetta,

Sorry to hear about your husband's ongoing medical issues. Your family will be in my thoughts and hopefully these mysteries will all be solved.

Best,

Teresa

[Benedetta Stilwell]

Teresa
He is not better. He could only take the steroids for a short period of time. Off and on through out the years (during times of stress or a very hard day at work)he has an oxygen crises, that has ended him up in the hospital or emergency rooms. The last two year- his oxygen levels are staying around 87%. It is suppose to be 100%. He has been on oxygen for the last two years.

[Teresa Conrick--Thanks, Benedetta.]

Benedetta,

Thanks very much for sharing. This is interesting especially as this happened in 1992, a time when thimerosal was being increasingly used in significant quantities in many of our kids.

The genetic vs acquired is also pertinent as well as disorder vs dysfunction. There very well could be the question then - chicken vs egg - for any children affected.

Glad your husband is doing better.

[Benedetta Stilwell]

Hi Tereasa:
Dr. Shoffner was/is a genetist neurologist he left Emory Clinic and went to Clevland to work for a while with Cohen, now he is back down in Georgia - I am not sure if it is Emory clinic again or the University medical school.

My husband had a muscle biospy taken from his upper leg and upper arm. The biopsy was done at the University of Lousiville, but it has to be really fresh to get the correct test results. They put it on ice and shipped it to Emory clinic but did not last well enough during shipment for a correct test.

My husband had to go to Emory Clinic were they took a second muscle biopsy from the other leg and other upper arm. It does leave a scar and he refuses to let my son have one.

Dr. Shoffner did find a mitochondria disorder and then went through all the genes known, esp the inherited part from the mother and he found nothing was there.
Since my husband became completly well again when he took steroids, Dr. Shoffner concluded that it was environmental induced
and wrote this down on the test results. He speculated either something had damage the mitochondria or something was interferring with the function of the mitochondria.

My husband works as a polymer chemist and they were all thinking it was something he ran across in his job. Dr. Shoffner wanted my husband to come back down to Atlanta and go through some more tests to see if they could find the cause. We had never mentioned vaccines at all during this time because we knew (because of our children) you get further without mentioning vaccines. My husband did not go, he said he already knew the cause and he was wore out with it all.

CoenzymeQ10 was the only thing suggested to him by Dr. Shoffner.

My husband had tooooo many tetanus shots. He was a very active young man and well --- from the age of 12 untill 28 he was probably receiving tetanus shots on the average of every three years. At the time it was recommended every 6 years. At age 28 after receiving a tetanus shot at work (just rountine) he passed out on the floor of our home and seized on and off all night long. At age 34 he stepped on a nail, and even though he told the doctors his problem they gave him yet another one. These reactions are puzzling, not ever reaction is the same, even in the same person. Three weeks afte taking the shot, he crawled up the stairs to tell me that every muscle in his body was killing him and he could not hardly move. It took four years to finally reach Dr. Shoffner.

In church last year, at a youth meeting I overheard two nurses who work at the health department talking shop. One was telling the other of a meeting at teh state capital that informed them that some people are still getting tetanus inspite of the vaccine so they have change the recommended dose from six years to three years!

Did anything here help you. I guess I could look up his test (we still have them) for anything specific. The test papers tell exactly what part of the Krebs cycle, ATP cycle or energy cycle that is messed up. I could look that up for you are interested.

[Teresa Conrick--Question for Benedetta]

Hi Benedetta-

You said "Dr. Schoffner dignosed my husband after his second tetanus reaction in 1992 with a mitochondia disorder not inherited but envioronmenatal induced (oxidation phosphorlation was the fancy name given)."

Can you elaborate on this? How did the doctor differentiate inherited vs environmental? Was thimerosal discussed?

Thanks much.

Teresa

[Benedetta Stilwell]

what is in the cocktail, when you find out please give us lots of details!!!!!!!!!

[Twyla]

Your daughters are indeed very beautiful!! And they look very interested in something. As if there is a lot going on in their beautiful heads! I'm glad your visit went smoothly, and hope that they will benefit from Dr. Natowicz's treatment! Good for you for exploring this -- my impression is that Dr. Natowicz's "cocktail" has helped many people with autism and mito disfunction.

[Kathy Blanco]

I have learned that femal autistics have much more "bad" biochemical problems then the boys. It makes sense, since the disorder is more rare in females...not saying it doesn't happen, but more rare.

Ask the good doc if there calcium levels are normal. Dr Walsh found ONLY GIRLS had high disordered calcium in the brain. Why is that?

[Kim Mack Rosenberg]

Kim, interested to hear which tests are now being recommended and what you learn. Another appointment with Dr. N is on my to do list -- we have not been there in two years and need to do a follow up. Dr. N is truly one of the most caring docs I ever have met. Keep us posted...

[Alison MacNeil]

The three muses.

[Benedetta Stilwell]

Dr. Cohen is a mitochondria doctor, right?I am thinking of the right doctor?

He worked for awhile with Dr. Schoffner who came up from Emory Clinic and who also pioneered studies in mitochonrial disorders. Dr. Schoffner dignosed my husband after his second tetanus reaction in 1992 with a mitochondia disorder not inherited but envioronmenatal induced (oxidation phosphorlation was the fancy name given).

The only thing Schoffner recommended was huge doses of Co enyzme Q 10. The insurance always was slow to out right would not pay for it. We ordered it out of San Diago. Orginally it was made from beef hearts but later made from fermented algae. We had to pay so much for it that I have considered trying to get the equipment together and making it myself. My husband just this year gave up taking it - said it did not seem to make much differnece.

However, yes - this dignosis probably saved my 17 year old when he was dignosed with epilepsy in 2003. I refused Depakote my and my husband asked me why on earth did I go along with the neurologist? What was I thinking? All I could say was your mother went down hill fast when she was given Depakote. Pretty sorry reply - I admit it. But my sweet husband did not say anything but got on his computer and looked up Cohen and Schoffner's website on mitrochondial disorders. It said that they did not know why (remember this was 2003) but Depokote was dangerous to these patients with mitorchondrial disorders.

Today 2009 I know it lowers L-carnitine levels. L-carnitine is what carries fat (maybe it was carbs I don't remember) across the mitochondria membrane.

A recent neurologist (2009) told my husband that it probably was an immune response messing up the energy cycle (Krebs, or ATP cycle) but they just did not know what!

I am sorry too much information and probaly -- well I hope it helps someone else out there.

[LJ Goes]

Gads Kim, you need to get those gorgeous girls on the cover of Spectrum. Or Newsweek, Time or People, with a feature story about their recovery :)

Our prayers and well wishes will be with you...

Best, lj

[gabriele spangler]

We saw Dr. Natowicz when our son was 17years old. He did all the tests and saved Johnny's life by referring us to Dr. Cohen who is treating him now. Dr. Natowicz is the only doctor I have ever seen that truely cares.Best of luck to you and your children.

[Gayatri]

Kim, your daughters look picture perfect! Would you share what tests were run and what kind of recommendations they make. Am curious about what they have to offer by way of treatment outside of the DAN! world.

[Jeanna]

Kim, We left the day after Autism one to visit Cleveland Clinic and hang with Dr. Ajay Gupta (epileptologist) and Dr. Natowicz. We were admitted for 3 nights, four days on the epilepsy floor- Dr Natowicz was fantastic and listened to every last word...i handed him a giant book (our vaccine case) and said "here you go"..he seemed grateful. We just got back some prelim info, we'll see, on to the next steps..EEG was abnormal during sleep- "BFEDC" not medicating at this time. Good luck and please post how it all turns out. Great chatting with you at Autism one, your girls are beautiful! Jeanna Reed