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Jean:

Thanks for the info. I received IV Depakote in the ER back in November and felt awful for 2 days ~ I don't have a mito diagnosis, but am in the process of testing. Where did you find the info one what Mito pts should avoid?

Kerry~

Hailey 4 yrs Mito & FOD

Brenna 3 yrs Mito & FOD

-----Original Message-----From: Jean Shepherd Sent: Friday, March 19, 2004 1:24 PMTo: Mito Subject: Deafness following a course of aminoglycoside class antibioticsA few years ago this subject went around this list and I contributed a summary of an article I have in my possession, given to me by my friend who is an audiologist. I went hunting for this post and had to do some digging to find it as it was 1999 that I wrote it and fortunately I kept it!While it makes sense for *all" Mito folk to avoid taking the aminoglycosides class of antibiotics, just as it makes sense for all Mito folk to use the special protocol for anaesthesia and to avoid the use of Valproic Acid (Depakote) etc ..... it makes sense because *SOME* of the Mito folks have dire reactions. I mean .... why take the chance?How I wish that one of our well known Mito doctors would add to our articles we can download and take to our doctors by writing an article about the issue of contraindicated drugs for Mito folk. I expect they are unwilling to take this risk of omitting something, especially since problems with these drugs seem to be on a hit or miss basis!!!!That having been said ... this article was written by two doctors doing research on the subject. As you will read ... the listing of aminoglycosides as being "ototoxic" is a responsible way of looking at them: however, I read from this article that the ototoxicity is quite specific. Jean*********Deafness following a course of antibiotics. The article is called "Mitochondria and Risk of Deafness" by Tim P. Hutchin and Gino A. Cortopassi of University of California. It was published in the American Journal of Audiology, Vol4, - 1059-0889/95/0401-0012 in March of 1995.It is written in quite technical language, but the essence of the article is as follows:Certain antibiotics (aminoglycosides) perform their antibiotic function by inducing errors in bacterial protein synthesis, eventually causing cell death. Drugs mentioned are amikasin, neomycin, and streptomycin.The bacterial cell is entirely cytoplasm; its DNA is not packaged into a discrete nucleus as in mammalian cells. Mitochondia are believed to more closely resemble bacterial cell than mammalian, making them a possible target for aminoglcosides.A rare genetic trait which cofers hypersensitivity to aminoglycoside antibiotics, and is inherited maternally, exists in the human population. These humans, when exposed to therapeutic levels of aminoglycosides, develop significant hearing loss. A mitochondrial mutation occurs in 100% of family pedigrees *with a trait for hypersensitivity to aminoglycosides*. The mutation is referred to as 1555o degree. Genetic screening could find this mutation prior to administration of the antibiotic, thereby preventing the risk to these sensitive individuals. Their findings show that if the mutation has occurred in a family, it remains linked to that type. This group of mtDNA is rare in Caucasian populations, but more frequent in Asian. A warning sign for doctors of this problem would be the occurrence of deafness after antibiotic (aminoglycosides) use to multiple individualsin a family. This can be tested for 1555(o) with a hair or blood sample and the avoidance of these drugs for positive families through the maternal inheritance pattern could be effected.The researchers listed above are willing to test, at no charge, as many hair or blood samples because they are interested in the distribution of the trait. I took him up on his offer several months ago – Dr. Gino Cortopassi responded to my Email promptly and gave me the results quitepromptly too. I found his Email address through the University of Southern California's web master, but unfortunately, that address left when I got my new computer. Gino A. CortopassiInstitute for ToxicologyDept. of Molecular Pharmacology & ToxicologySchool of PharmacyUniversity of Southern CaliforniaThe address given is Los Angeles, but I believe it is the Campus that I found him.sol8air@... wrote:

It is my understanding that the aminoglycoside antibiotics *only* affect *hearing* in the *very specific MtDNA deletion A1555G

Gentamycin is ototoxic to everyone not just people with MITO. I don't know about specific deletions, I was told by Dr. Saneto that MITO kids in general should never recieve: Gentamycin, Tylenol, Ringer's Lactate, Gas Anesthesia (I have the name written down somewhere of the specific anesthesia drug to avoid) because these and some other drugs put added stress on the mitochondria and/or damage mitochondria and increase symptoms. I always gave my kid Tylenol until last year when he told me "by the way don't give her tylenol". Then he gave me the list. It was a surprise to me. kjmom of De-Arbra age 16Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions.

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Kerry;

Unfortunately, the info you are looking for, as I said, has not, to my knowledge,

been tackled by a credible Mito doctor yet.

I mentioned Depakote because I have been around these lists for a long time

.... and I have friends in the Mito world who have lost a Mito child to Depakote

hepatotoxicity (liver damage which happens very *quickly*) and another friend,

whose child required a liver transplant as a result of Depakote hepatotoxicity.

Definitely, if you are already using Depakote (Valproic Acid) regular lab

checks on liver enzymes is a MUST!!!

I mentioned Anaesthesia because Drs. Cohen, Shoffner and DeBoer have written

an article about that. In that article there is the start of a list of Mito

"no-no's". Here is the link to that article .... <http://umdf.org/pdf/mitoane.pdf>.

Incidentally, this article mentions caution with Nitrous Oxide (in the chart

at the very end) and some dentists use this drug to reduce patient anxiety!

From personal experience, I (and other Mito adults) have had trouble with

the Diabetes, type 2, medication called Metformin (which lists, as a rare

side effect, Lactic Acidosis). I have also had trouble with Glyburide,

which is the usual (and very old) medication and is now used as an alternative

to or in conjunction with Metformin as a treatment for Diabetes, type 2.

I have checked out the information, posted recently, that Glyburide affects

the body's ability to produce Co-Enzyme Q10 and found it is correct according

to Raj Chopra of Q-Gel's Epic4health.

I have also had an *immediate* reaction to Ringer's Lactate (Lactated Ringers)

so can speak personally to verify that reaction does happen to this drug,

which is in relatively standard use in hospitals as the liquid medium for

IV medicating. It is possible that your reaction to the IV Depakote was

a "double whammy" of Depakote AND Ringer's Lactate.

It pays to check <http://rxlist.com/> and type in any new medication.

It also pays to make friends with your local pharmacist!!! I am starting

to think that if it mentions any RARE side-effects .... start asking questions

and be careful lest the rare individuals just happen to be Mito folk!!!

Jean Shepherd, List Owner

Adultmito list

PS .... Sorry .... long answer to a short question! Hope this helps.

Kerry Tobin wrote:

Message

Jean:

Thanks for the info. I received IV Depakote in

the ER back in November and felt awful for 2 days ~ I don't have a mito

diagnosis, but am in the process of testing. Where did you find the info

one what Mito pts should avoid?

Kerry~

Hailey 4 yrs Mito & FOD

Brenna 3 yrs Mito & FOD

Deafness following a course of aminoglycoside

class antibiotics

A few years ago this subject went around this list and I contributed a

summary of an article I have in my possession, given to

me by my friend who is an audiologist. I went hunting for this post and

had to do some digging to find it as it was 1999 that I wrote it and fortunately

I kept it!

While it makes sense for *all" Mito folk to avoid taking the aminoglycosides

class of antibiotics, just as it makes sense for all Mito folk to use

the special protocol for anaesthesia and to avoid the use of Valproic Acid (Depakote) etc ..... it makes sense because *SOME* of the Mito folks

have dire reactions. I mean .... why take the chance?

How I wish that one of our well known Mito doctors would add to our articles

we can download and take to our doctors by writing an article about the

issue of contraindicated drugs for Mito folk. I expect they are unwilling

to take this risk of omitting something, especially since problems with

these drugs seem to be on a hit or miss basis!!!!

That having been said ... this article was written by two doctors doing

research on the subject. As you will read ... the listing of aminoglycosides

as being "ototoxic" is a responsible way of looking at them: however,

I read from this article that the ototoxicity is quite specific.

Jean

*********

Deafness following a course of antibiotics.

The article is called "Mitochondria and Risk of Deafness" by Tim P. Hutchin

and Gino A. Cortopassi of University of California. It was published

in the American Journal of Audiology, Vol4, - 1059-0889/95/0401-0012 in

March of 1995.

It is written in quite technical language, but the essence of the article

is as follows:

Certain antibiotics (aminoglycosides) perform their antibiotic function

by inducing errors in bacterial protein synthesis, eventually causing cell death. Drugs mentioned are amikasin, neomycin, and streptomycin.

The bacterial cell is entirely cytoplasm; its DNA is not packaged into

a discrete nucleus as in mammalian cells. Mitochondia are believed to

more closely resemble bacterial cell than mammalian, making them a possible

target for aminoglcosides.

A rare genetic trait which cofers hypersensitivity to aminoglycoside antibiotics,

and is inherited maternally, exists in the human population. These humans,

when exposed to therapeutic levels of aminoglycosides, develop significant

hearing loss. A mitochondrial mutation occurs in 100% of family pedigrees

*with a trait for hypersensitivity to aminoglycosides*. The mutation

is referred to as 1555o degree. Genetic screening could find this mutation

prior to administration of the antibiotic, thereby preventing the risk

to these sensitive individuals. Their findings show that if the mutation

has occurred in a family, it remains linked to that type. This group

of mtDNA is rare in Caucasian populations, but more frequent in Asian.

A warning sign for doctors of this problem would be the occurrence of

deafness after antibiotic (aminoglycosides) use to multiple individuals

in a family. This can be tested for 1555(o) with a hair or blood sample

and the avoidance of these drugs for positive families through the maternal

inheritance pattern could be effected.

The researchers listed above are willing to test, at no charge, as many

hair or blood samples because they are interested in the distribution

of the trait. I took him up on his offer several months ago – Dr. Gino

Cortopassi responded to my Email promptly and gave me the results quite

promptly too. I found his Email address through the University of Southern

California's web master, but unfortunately, that address left when I got

my new computer.

Gino A. Cortopassi

Institute for Toxicology

Dept. of Molecular Pharmacology & Toxicology

School of Pharmacy

University of Southern California

The address given is Los Angeles, but I believe it is the Campus

that I found him.

sol8air@...

wrote:

In a message dated 3/17/04

7:37:44 AM Pacific Standard Time, mitoscottie@...

writes:

It

is my understanding that the aminoglycoside antibiotics *only*

affect *hearing*

in the *very

specific MtDNA deletion A1555G

Gentamycin is ototoxic to everyone not just people with MITO.

I don't know about specific deletions, I was told by Dr. Saneto that

MITO kids in general should never recieve: Gentamycin, Tylenol, Ringer's

Lactate, Gas Anesthesia (I have the name written down somewhere of

the specific anesthesia drug to avoid) because these and some other

drugs put added stress on the mitochondria and/or damage mitochondria

and increase symptoms. I always gave my kid Tylenol until last year

when he told me "by the way don't give her tylenol". Then he gave

me the list. It was a surprise to me.

kj

mom of De-Arbra age 16

Please contact mito-owner

with any problems or questions.

Please contact mito-owner with any problems or

questions.

Please contact mito-owner with any problems or questions.

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Thanks for all the info and links Jean!!

-----Original Message-----From: Jean Shepherd Sent: Friday, March 19, 2004 4:58 PMTo: Mito Subject: Re: Deafness following a course of aminoglycoside class antibioticsKerry;Unfortunately, the info you are looking for, as I said, has not, to my knowledge, been tackled by a credible Mito doctor yet.I mentioned Depakote because I have been around these lists for a long time ... and I have friends in the Mito world who have lost a Mito child to Depakote hepatotoxicity (liver damage which happens very *quickly*) and another friend, whose child required a liver transplant as a result of Depakote hepatotoxicity. Definitely, if you are already using Depakote (Valproic Acid) regular lab checks on liver enzymes is a MUST!!!I mentioned Anaesthesia because Drs. Cohen, Shoffner and DeBoer have written an article about that. In that article there is the start of a list of Mito "no-no's". Here is the link to that article .... <http://umdf.org/pdf/mitoane.pdf>. Incidentally, this article mentions caution with Nitrous Oxide (in the chart at the very end) and some dentists use this drug to reduce patient anxiety!From personal experience, I (and other Mito adults) have had trouble with the Diabetes, type 2, medication called Metformin (which lists, as a rare side effect, Lactic Acidosis). I have also had trouble with Glyburide, which is the usual (and very old) medication and is now used as an alternative to or in conjunction with Metformin as a treatment for Diabetes, type 2. I have checked out the information, posted recently, that Glyburide affects the body's ability to produce Co-Enzyme Q10 and found it is correct according to Raj Chopra of Q-Gel's Epic4health.I have also had an *immediate* reaction to Ringer's Lactate (Lactated Ringers) so can speak personally to verify that reaction does happen to this drug, which is in relatively standard use in hospitals as the liquid medium for IV medicating. It is possible that your reaction to the IV Depakote was a "double whammy" of Depakote AND Ringer's Lactate.It pays to check <http://rxlist.com/> and type in any new medication. It also pays to make friends with your local pharmacist!!! I am starting to think that if it mentions any RARE side-effects .... start asking questions and be careful lest the rare individuals just happen to be Mito folk!!!Jean Shepherd, List OwnerAdultmito listPS .... Sorry .... long answer to a short question! Hope this helps.Kerry Tobin wrote:

Jean:

Thanks for the info. I received IV Depakote in the ER back in November and felt awful for 2 days ~ I don't have a mito diagnosis, but am in the process of testing. Where did you find the info one what Mito pts should avoid?

Kerry~

Hailey 4 yrs Mito & FOD

Brenna 3 yrs Mito & FOD

-----Original Message-----From: Jean Shepherd Sent: Friday, March 19, 2004 1:24 PMTo: Mito Subject: Deafness following a course of aminoglycoside class antibioticsA few years ago this subject went around this list and I contributed a summary of an article I have in my possession, given to me by my friend who is an audiologist. I went hunting for this post and had to do some digging to find it as it was 1999 that I wrote it and fortunately I kept it!While it makes sense for *all" Mito folk to avoid taking the aminoglycosides class of antibiotics, just as it makes sense for all Mito folk to use the special protocol for anaesthesia and to avoid the use of Valproic Acid (Depakote) etc ..... it makes sense because *SOME* of the Mito folks have dire reactions. I mean .... why take the chance?How I wish that one of our well known Mito doctors would add to our articles we can download and take to our doctors by writing an article about the issue of contraindicated drugs for Mito folk. I expect they are unwilling to take this risk of omitting something, especially since problems with these drugs seem to be on a hit or miss basis!!!!That having been said ... this article was written by two doctors doing research on the subject. As you will read ... the listing of aminoglycosides as being "ototoxic" is a responsible way of looking at them: however, I read from this article that the ototoxicity is quite specific. Jean*********Deafness following a course of antibiotics. The article is called "Mitochondria and Risk of Deafness" by Tim P. Hutchin and Gino A. Cortopassi of University of California. It was published in the American Journal of Audiology, Vol4, - 1059-0889/95/0401-0012 in March of 1995.It is written in quite technical language, but the essence of the article is as follows:Certain antibiotics (aminoglycosides) perform their antibiotic function by inducing errors in bacterial protein synthesis, eventually causing cell death. Drugs mentioned are amikasin, neomycin, and streptomycin.The bacterial cell is entirely cytoplasm; its DNA is not packaged into a discrete nucleus as in mammalian cells. Mitochondia are believed to more closely resemble bacterial cell than mammalian, making them a possible target for aminoglcosides.A rare genetic trait which cofers hypersensitivity to aminoglycoside antibiotics, and is inherited maternally, exists in the human population. These humans, when exposed to therapeutic levels of aminoglycosides, develop significant hearing loss. A mitochondrial mutation occurs in 100% of family pedigrees *with a trait for hypersensitivity to aminoglycosides*. The mutation is referred to as 1555o degree. Genetic screening could find this mutation prior to administration of the antibiotic, thereby preventing the risk to these sensitive individuals. Their findings show that if the mutation has occurred in a family, it remains linked to that type. This group of mtDNA is rare in Caucasian populations, but more frequent in Asian. A warning sign for doctors of this problem would be the occurrence of deafness after antibiotic (aminoglycosides) use to multiple individualsin a family. This can be tested for 1555(o) with a hair or blood sample and the avoidance of these drugs for positive families through the maternal inheritance pattern could be effected.The researchers listed above are willing to test, at no charge, as many hair or blood samples because they are interested in the distribution of the trait. I took him up on his offer several months ago – Dr. Gino Cortopassi responded to my Email promptly and gave me the results quitepromptly too. I found his Email address through the University of Southern California's web master, but unfortunately, that address left when I got my new computer. Gino A. CortopassiInstitute for ToxicologyDept. of Molecular Pharmacology & ToxicologySchool of PharmacyUniversity of Southern CaliforniaThe address given is Los Angeles, but I believe it is the Campus that I found him.sol8air@... wrote:

It is my understanding that the aminoglycoside antibiotics *only* affect *hearing* in the *very specific MtDNA deletion A1555G

Gentamycin is ototoxic to everyone not just people with MITO. I don't know about specific deletions, I was told by Dr. Saneto that MITO kids in general should never recieve: Gentamycin, Tylenol, Ringer's Lactate, Gas Anesthesia (I have the name written down somewhere of the specific anesthesia drug to avoid) because these and some other drugs put added stress on the mitochondria and/or damage mitochondria and increase symptoms. I always gave my kid Tylenol until last year when he told me "by the way don't give her tylenol". Then he gave me the list. It was a surprise to me. kjmom of De-Arbra age 16Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions.

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