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annagmay

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Reply with quote  #101 
>>>Does anyone know why they are calling it cystinuria?>>>

As mentioned, there is excess cystine (as well as other amino acids) in the urine which causes a dog to be at a higher risk of forming cystine crystals or stones in the urinary tract.

Anna

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Reply with quote  #102 

Marge, of course it was a compliment.  I will definately have my ugly bald head there at Bucks.  I might sneek in some bourbon shooters....  LOL  Wait, you probly don't know that story.  I will have to share it with you there.  TTYL 


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Reply with quote  #103 
Quote:
At this point, based on the current research Upenn is doing and also what I've read about the various disorders, I wouldn't feel comfortable assuming that a positive test for cysteine in the urine is definitely caused by the genetic disease referred to as cystinuria as we know it. (a mutation that affects the transporters in the kidney) or even homocystinuria (which is a mutation that affects the synthesis of methionine).


Kay,
in my opinion you are right not to be comfortable assuming its a genetic disease..
Upenn have already communicated that after 10yrs they cannot find a physical metabolic defect in Mastiffs, a gene responsible or a mode of inheritance. 

The way I understand it ...the problem with scientific research is that it is based on a theory..then they set out to prove it.

This is why after 10 yrs Upenn have come up with nothing.. prior research with Newfoundlands, which do have genetic cystinuria, simply does not apply to mastiffs.


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Reply with quote  #104 
Hi Anna...
 
Quote:

>>>So all these dogs are expected to be removed from the gene pool because they can metabolise normal levels of protein but cannot handle abnormal amounts of protein?>>>

 

I cannot speak for everyone and those opinions will be from one end of the spectrum to the other, but here in the United States the Mastiff Club of America's Health Committee and Cystinuria Sub-Committee “along with many MCOA members, non-members and other breed clubs” have a goal of supporting research that will lead to a DNA test for Cystinuria which will identify normal, carrier, and affected animals (depending on the actual mode of inheritance).  The DNA test can then be used to assist breeders when making our breeding decisions by helping us achieve our goals of selectively breeding for traits we desire and also assist us in trying to breed away from undesirable traits.

 

A lot of us also recommend and encourage breeders to make breeding decisions based on the individual dog or bitch’s temperament, breed type, and health status (based off of their known phenotype and genotype).  If a breeder has an otherwise exceptional dog that would add value to the gene pool, then they are blessed with the ability to freeze the dog’s semen for future consideration in their breeding program.  Unfortunately with known carrier bitches, these types of options are not currently economically available

.
 
The problem as I see it Anna with this response is that there is a huge presupposition that it is genetic and that UPenn will find a DNA test. UPenn have found nothing in the last 10 yrs to support this. Now the focus of their study is on diet.

The same thing happenned with hip and elbow displasia. There are those who insist its genetic and to not breed higher scoring animals.
I've just read an article recently published in the NZKC Gazette on a study of a line of  Golden Retrievers who consistently produced hip & elbow displasia. He took this line and and gave them vit c and lowered protein intake to 18-20% during fast growth stages and has successfully bred generations of elbow and hip dysplasia free dogs. It was a breeder who did the study and no doubt he was under huge pressure to 'not breed' the line on.
Until UPenn publish some findings, I feel breeding recommendations are quite premature.
 
Quote:

>>>geez..I'm over it...>>> 
 
Are you willing to translate that comment for us?  I'm curious if that has the same meaning in New Zealand as it does in the United States in case some of us do not understand you correctly. 

Anna


From the time I had my first litter I have made a personal commitment to testing the lines I have bought in. We do not have many of the tests you have in America, and testing we can do here is not listed on a register you can look up like you can over there. Most breeders down under have tested for hips and elbows, but thats usually it. PRA Dna testing has only just now become available in Australia, I could send away. I have tested for hips elbows, eyes (with an Opthalimist), vW, and had urine spun down in the past..but we just don't have alot of others available, that are certifed anyway. For instance I could have my vet check hearts and patellas..but have no idea if that constitutes being tested...as it does over there. 
 
Over the past few months I have tried to learn more about cystinuria and take part in discussions.. not just here on this board. Nothing I have heard or seen in posts adds up..I have asked alot of questions.. and I find it quite incredible that people assume so much with so little or no information. I have always challenged this.
For example... it has been reiterated over and over again by various people that it has nothing to do with diet...and yet..after much poking and prodding... it seems diet is now the focus of UPenns study. Yet your response initially to Margarite Perrenouds article was that Dr Newman had been misquoted...

So in regards to being 'over it' I just feel it is probably best to wait and see what comes out of the published studies, anything else seems kind of speculative.
 


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annagmay

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Reply with quote  #105 

COLAuria or Cystinuria or whatever we want to call it, causes the same excess COLA to dump in the urine as it does in Newfies, Labs, Australian Cattle Dogs, and many other breeds.

 

Cystinuria in Mastiffs appears to be inherited because DNA analysis has collected information to support that theory and the pedigree analysis shows related dogs having the same phenotype, i.e.; littermates... 

 

I guess the bottom line is that excess cystine along with a low pH, high acidity in the urine increases the chances of cystine stone formation so if removing certain supplement from a C+ dogs diet and avoiding dehydration reduces the cystine levels back to normal & increases the ph, then that is good information to know to "help" reduce the risk of cystine stone formation.

 

The other message is the same as we have asked over the last 10 years is to submit urine samples on individual dogs and even better yet, on families of dogs and follow through with donating DNA via blood if any of them are C+.   Then in addition to that share other data such as diet, spay/neuter info, or whatever we feel might be helpful…. 
 
We are very excited that some breeders have begun submitting samples on complete families and we need more breeders to jump in and do the same.

 

Anna

 

=====================


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annagmay

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Reply with quote  #106 
A. We are making progress with Cystinuria research! Through genome mapping and pedigree analysis the researchers are finding significant leads on the genetics of the disease.

B. We will make more progress as breeders continue to coordinate research participation with entire families.

C. The diet study is to help identify dogs that normally would have gone undetected and hopefully will lead to a better diagnostic test and better preventative treatments.  Due to the genetic complexity of Cystinuria in Mastiffs, we have to look for environmental triggers and look more closely at environmental influences and treatment options.

D. Different gene mutations can cause specific diseases and not all of the same gene mutations cause the same disease in every breed of dog or type of animal including humans.  You can look up PRA tests on http://www.OptiGen.com and see that there are many different tests for many different breeds that will identify genetic PRA in dogs.  There are also different modes of inheritance among different breeds of dogs for the same disease.

Anna

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annagmay

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Reply with quote  #107 
Dr. Newman's misquote was that Danny had a genetic disease, Cystinuria.  When he controlled Danny's diet and water intake, he was able to help prevent him from forming UTI's and cystine sediments in his urine.


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Reply with quote  #108 
Thank you Anna for all the time you have devoted to finding out about Cystinuria and for work as the Health subcomittee co-chair!  It is important to our breed to have advocates like you that are willing to work with UPENN and disperse the information to other members of the fancy.

This is a very real disease that is plauging our breed and both research and education are what it is going to take for our future.  Working together with the resources we have and providing as much information and samples from our own dogs will help the cause as best we can.

Heather



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Reply with quote  #109 
Marge, of course it was a compliment.  I will definately have my ugly bald head there at Bucks.  I might sneek in some bourbon shooters....  LOL  Wait, you probly don't know that story.  I will have to share it with you there.  TTYL 

Thanks Chris :>)
Hell i don't want to go to bucks and get a thump on the noggin :>)
As for the bourbon ,Hmm I'm all ears :>)

But ill probably be up to the HotChoclate :>)
It will be great to see you all at Bucks again :>) .

This is a great discussion ,we have going on here :>)

So please keep it going .

Take care
Marge

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kaysti

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Reply with quote  #110 
"If you know of enough dogs that have been diagnosed with elevated homocystein, hyperhomocysteinemia or cystinosis... and they would like to participate in a research study, they would have to be willing to finance the study or find financial backing for the study, share pedigree information, share environmental information such as diet and supplements, and submit DNA samples... 

I had asked UPenn about looking into this in Mastiffs since some lines actually could have an issue of traits similar to mental retardation and I was told they are looking at dogs with elevated cystine other amino acids in the urine not cystein and not elevated cystine in the blood or intestines or eyes and that would require a separate study.


http://www.med.uiuc.edu/hematology/PDF%20Files/Hyperhomocysteinemia.pdf

If on the other hand if the current research study shows a significant number of Mastiffs that do not show the same gene mutations and pedigree analysis data but have NP C+ results, then I'm pretty sure that could possibly lead to a new Grant or possibly a new recall on food &/or supplements."


 

Hi Anna, yes, this is very good info to know. Basically it sounds like UPenn is limited in the testing and research that they can do.  If further diagnostic tests are needed, then the C+ dog owner needs to ask for this and fund it, or a new research study needs to be started. I personally feel that more diagnostic testing is needed to rule out other conditions!

If it is homocystinuria(methionine) or another genetic condition (similar to x-linked hypophosphatemia) or even nutrition that is causing elevated cysteine in the urine, and UPenn is limited in their research and unable to rule these out, we will NEVER find out the genetics or reasons behind this, unless further measures are taken.

Is there any possible way that the owners and/or breeders could do a database (anonymous if necessary) that lists age of first positive test, number of positive tests, number of negative tests, any diet or supplement differences during those time periods, whether they actually formed stones or not, diet during stone formation, diet and supplements that seem to prevent stone formation..

ANY and ALL other seemingly unrelated health issues such as any growth issues/valgus, bone/cartilage abnormalities, cataracts, chronic diarrhea, trouble gaining weight, lymph issues such as chylothorax, etc...

Also list any additional diagnostic testing done and the results, for example... presence of homocysteine in the blood, serum albumin and blood protein levels (low?), Protein levels in the stool and other tests to rule out gastrointestinal malabsorption, additional kidney testing to rule out other types of glomuremular disease(haven't thought about that much but it could be a possibility?)

Pedigree info, if people would be willing...

I know UPenn is asking for all this, but I feel a public database would be beneficial.  The mastiff community as a whole has an advantage over any research that any scientists could do - and that is years and years of collective experience and a greater, more intimate knowledge of the mastiff breed and it's health issues, whether they seem to be related to cystinuria or not.
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kaysti

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Reply with quote  #111 
Some sites for various testing labs that do amino acid testing in humans,  just thought it was interesting info:

http://www.metametrix.com/content/DirectoryOfServices/0012AminoAcids40-Urine

http://www.greatplainslaboratory.com/home/eng/urine_amino_acid.asp

http://www.lifesteps.com/gm/Atoz/ency/amino_acid_disorders_screening.jsp

On this page, check out all the disorders that can cause increased total urine amino acids!!! :

http://www.nlm.nih.gov/medlineplus/ency/article/003366.htm
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toadhall

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Reply with quote  #112 

Quote:

I have recently read an article published in the OEMC journal..Mastiff Legacy..Autumn/Winter 2008 issue, written by Marguerite Perrenoud.

Marguerite Perrenoud spoke at length with Dr William Newman, who heads the Health & Research Committee for the MCOA, and states in her article that he shared the following information;
..excerpts from article;

2)The condition is seriously aggravated by the BARF diet and/or large   amounts of chicken.
 
3) Dr Newman like myself (and my late mother who was first connected with mastiffs in 1932), says never feed Mastiffs chicken in any form(as chicken contains cystin). Any 'meal' fed to mastiffs should be checked to see that there is no trace of chicken present. ( Dr Newman mentioned he avoids soya for mastiffs too and I found this interesting because I always advise there should be no soya in their diet or supplementation)
 
6) Some Mastiffs may not have true cystinurea, they may be developing the crystal - a combination of eating too much chicken and of being given an acid diet.
 
 ..what do you make of that?



This was my original post Anna
...so point 6) is not what you were referring to as being misquoted by Dr Newman, but rather something about Danny...
Quote:
Dr. Newman's misquote was that Danny had a genetic disease, Cystinuria.  When he controlled Danny's diet and water intake, he was able to help prevent him from forming UTI's and cystine sediments in his urine.

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Reply with quote  #113 
HI ,
I guess we can ,talk about this till the cows come home :>)
I would like too, say ,Breeders should ,not hide or be embarrassed .

If they have a Mastiff, come back positive .Because those that did test .
Once was enough ,now we learned its not .

Those that only bred to tested Bitches and Males .
Also had no idea ,A side from those ,that knew all the time .their stock ,was positive .

It is or was not your fault ,i think up until now ,most of us felt ,it was not out there as much as what we are seeing ,now !

So no one should point fingers ,If it comes out ,as it did awhile back on another board .


Hey it happened !no ones fault ,no one knew
Its better to just say ,Ill have all of my stock tested period.

And none from that litter will be sold as show ,only as pets .
At a reduced price hopefully :>) with a Spay neuter .


I would think ,this way ,no one has or can say a thing . But trying to put blame else where ,is truly not right .
Trying to hide things in the Dog world just don't work :>)


It will always come back to bite you in the Arss :>)
Lets just try and find something on this Cystinuria ,so we can again have a healthy breed .

And remember one Test is not enough ,a negative today ,might be a Positive tomorrow

Hopefully ,by next year ,we will have something too go on
I dont feel we should not test ,because we dont have answers yet. I do think we should go along with a Postive is a Postive ,and not breed ,either side of the pedigree .
Untill we find out for sure , Hell we can have a lot of pups out there ,with Cystinuria . Before we even find out they are postive

I myself feel ,if you have a  Dog that came from a litter that had postive Brothers . But he comes back a Negiative .
I would not breed back to His pedigree ,or the Bitches .

Id go way out ,now is that  a help ?? Probly not

But at least you tried ,

Marge

 

 


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Reply with quote  #114 
Just to clarify Dr. Bill Newman's position. This is a quote from him from a recent email to me where we were discussing this issue.

 "Now U of P is looking at diet as a problem which I have been
>
maintaining for years that the diet exacerbates the underlying
> condition and can be used as a means of helping or hurting.
> I still firmly believe that chicken, it by products , poltury and soy
> are not good but good all natural food and vension fish and beef.
> Also no one pays attention to the amount of water ingested( maybe two
> gallons a day) and the acidity of the urine which are both very
> important.
>
It still goes back to the fact that the disease is inherited and
> recessive so it can occur ..."
(underlining emphasis added.)
Posted by permission, Dr. Bill Newman, 2/24/2009

The point I believe that he is making is that this is an inherited trait but can be made worse or better by diet and water intake in treating a C+ boy but cannot change the fact that he IS C+. He believes it is a genetic issue, period.

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Reply with quote  #115 

Well it is wonderful to see so many now becoming interested in Cystinuria and wanting to get some answers!  This is what we need!

 

With that said, I need to add a few comments.

I understand people want to believe there are false positive, I of all people want to see this.  As for those of you who don't know, my lines have been affected with cystinuria.  My Hall Of Fame bitch Tangee produced 3 boys from her first litter (which she produced 3 litters before we had any C+ offspring), needless to say, we are devastated!  We have been testing our breeding stock and offspring before we placed them (tested @ 7 weeks, till recently finding that is of no use) for 10 years now.  When we bred Tangee’s mom (also a Hall of Fame bitch) we made sure the sire was Cystinuria clear as was our girl Val, as well as other tests and getting the sire’s breeder to PRA DNA his sire and dam to clear him of PRA (as that was recently found!).  So this is to just say we have been testing for years, for MANY health problems!

When we found that we had C+ boys, we contacted ALL littermates and notified them as well asked them all to submit urine and blood to UPENN, this told us there were a total of 3 C+ from that litter.  In comment to some of you; what I have been reading in previous posts, I must add:

NONE were being fed raw.  NONE were on high protein diets.  ALL were on different diets.  NONE were on supplements (that I was made aware of).  All were very conscious to keep their dogs on low protein diets as I recommend for our large breed of dogs.

So with some thinking that its diet/supplement related, this shoots that down with my experience.  Sounds more genetic to me, as they are all brothers!

So with working with UPENN, we took it a bit further to try and figure out where it came from, THIS IS WHAT THEY NEED FROM BREEDERS, we tested (submitted urine and blood) most all of Tangee’s Brothers and half brothers to see if there were any positive boys, all are Negative.  So with the x-link theory, obviously this came from Tangee’s dad otherwise mom would have produced a son here and there!  Then we also asked our offspring that are ½ brothers to our C+ boys to test.  Anyhow, I can go on and on with all the related dogs we have gone to and asked them to submit blood and urine, DID THEY ALL DO IT, NO!  Of my 3 C+ boys, did they all submit blood, NO!  But I did ask, I am pushing to get a test designed and without the cooperation of breeders and pup owners, we will remain in the same place we are 10 years from now as well.

I tell you this because had I not been encouraging my pup owners to test, this may not have been diagnosed.  If they had not been diagnosed, UPENN wouldn’t have the whole Windfall Mastiff family to use in their research.  THIS IS WHAT THEY NEED!!!  Do I hope they are wrong in this being a problem in the breed, SURE I DO, but doubtful that is the case.  So we are proactive in trying to find the answer, trying to help find the gene to end this disease.

So if you don’t at least test your dog, you aren’t helping to fix the problem.  If your dog is C+ and you don’t want to believe it, that is fine, but give them your dogs blood and urine and any possible littermates so that you can prove this isn’t a disease that is  problem in our breed.  But with more dogs info maybe the answer won’t take another 10 years to find.

May I end with thanking Anna May for supporting me from the day I learned the news!  She immediately called UPENN for me and helped in getting me info I needed to help in educating my pup owners!

 

Jan


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Teresa

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Reply with quote  #116 

Thank you Jan for adding this. We just all need to take this seriously and stop making excuses for NOT testing. It takes real courage to address this issue head on instead of trying to hide from it! Kudos to Jan, Anna May, Bill Newman and all the others trying to put this health issue to rest. It only take testing and research, but it takes everyone helping!


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kaysti

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Reply with quote  #117 
There are known x-linked genetic disorders which cause amino acids in the urine.

http://en.wikipedia.org/wiki/Dent%27s_disease

If it's assumed that the issue in mastiff is "classic genetic Cystinuria" as seen in Newfs, or a version close to it, and UPenn is looking at those certain genes.... how are they ever going to find it, if it turns out to be a completely different x-linked disease (and completely different gene mutations) causing cysteine in the urine?

Just a thought.





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Reply with quote  #118 

They already know that it is NOT the same gene mutation that Newfies have.


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kaysti

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Reply with quote  #119 
I'm aware that UPenn knows it's definitely not the same gene mutation as the Newfs (SLC3A1).  If it were the same gene mutation, we wouldn't be having this conversation.

But are they looking in the same "gene family"?

http://ghr.nlm.nih.gov/geneFamily=slc
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Reply with quote  #120 
Jan, may I use some of your post for our OVMC website? I am trying to put together a page on cystinuria and I am struggling.
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Reply with quote  #121 
It was asked if UPenn is looking at the SLC3A1 gene in Mastiffs.  Yes, they have looked at and are continuing to look at both the SLC3A1 and the SLC7A9 genes a long with the X Chromosome and other genes.  They are doing a complete genome mapping scan of Mastiffs using the SNP Chip technology, so they can find common &/or suspicious mutations on C+ Mastiffs!  It is a HUGE project and one that we are very thankful that they are continuing...  This information was shared in the 2008 MCOA Cystinuria Annual Report which I've attached in a separate post on this thread.

PLEASE.......

Participate in the Cystinuria Research with UPenn.  We need everyone to test their Mastiffs and retest their Mastiffs.  If your dogs come up C+ on the NP urine screening test, please contact UPenn and submit blood samples along with pedigree information and other information that you believe might help them such as diet, supplements, medications, spay/neuter status...  If there are other traits that your C+ dogs have that you believe might be useful for the researchers to know, please share that information with them.

If your Mastiff has actually formed cystine stones or crystals, then the blood is even more valuable to the study.

If you can provide urine & blood samples a long with the other requested information and data from close relatives of C+ Mastiffs, then that will also be a TREMENDOUS help to the study!

MCOA Cystinuria Committee Goals
  • Develop a DNA test for Cystinuria in Mastiffs
  • Develop a more sensitive Cystinuria screening test for Mastiffs
  • Develop better treatment options for Cystinuria
  • Establish better preventative treatment options in Mastiffs.
  • Gain a stronger understanding of Cystinuria in Mastiffs both with genetics and at the molecular level
Of course there are other goals such as educational outreach and encouraging screening dogs before breeding...  but those bullet points pretty much sum up the key focus areas: diagnosis, mode of inheritance, treatment, and prevention of stone formation.  We believe we must be pro-active and involved in assisting the researchers and veterinarians for the best interest of our dogs and the future of our breed...

Thanks for the kudos that some of you have posted, but those kudos need to go to those that are screening your dogs for Cystinuria, participating in the research studies and encouraging others to do the same.  Of course UPenn deserves HUGE KUDOS for their hard work & dedication in continuing to work on this for us as well as for their financial support with the genome mapping studies...  I can't thank Dr. Newman and the Canine Health Foundation enough for their work in creating the AKC/CHF Mastiff Donor Advised Fund and for financially supporting the Cystinuria Grants... 

Thank YOU for participating in Cystinuria Research & for looking out for the future of Mastiffs!!

Anna

PS....
if you don't test, then you don't know!

===================


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Reply with quote  #122 

A. We are making progress with Cystinuria research!

Hi .
Ok , I went to court today ,and while there ,A Top breeder Mcoa Member .
Was also there ,and sat beside me ,we started talking about ,Cystinuria .

She said She had a Male come back positive ,But She was told by Dr,Geiger .
He was only borderline ,since he had just a small amount in His Urine ,so to retest him ,And again was told it could be His food !

Second test he was a negitive

Now I said ,You know that's Crap ! A positive is a Positive ,Nope She said Not what Geiger said !!

And that the Health Committee  did not know what they were talking about .
And that we should go to another Lab .

Now If a Top member ,of the MCOA feels this way ,or is completely lost in a cloud ,that does not know ,about Cystinuria .

Iam going to say this ,First of all Maybe Ole Doc Geiger ,should just not respond to questions ,asked of Him .

Since we read here and else where , from the Lady's on the Cystinuria list .
Along with Anna May ,and Jan .about testing and the results , and a positive is a positive etc.

And then Geiger's comes up with all together different answers .

So i for one , will no longer donate ,any Money or anything to the Danny Fund ,or the Mastiff Picnic .

Until some one that knows ,for sure about this ,has the right answers .

Cause it sure ,gets tiresome ,to argue with someone that should know ,since She is in the MCOA ,but then Geiger comes along .
And tells them something else , So I do hope somehow ,you all can come together  and get a straight story .

Until that happens ,and everyone is on the same page .

I will no longer be , giving anything to the Cystinuria fund .

Why give money ,to something no one knows anything about ??

I will say keep testing ,that's all we got !! But until we start getting some straight answers ,My hands will be kept in my Pockets .

I was truly applaud at this Members answers ,not only about the Cystinuria ,

But of those that are explaining it And to day ,i have to say i was ashamed to even admit ,i was a MCOA member .

I wont be one after this year i can tell ya .

Marge





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Reply with quote  #123 
Anna , thanks for posting first hand information.

Marge, this has been my point all along...

-the nitroprusside test is not robust

-there is conflicting information from those with first hand experience of cystinuria and those 'managing' the information. Possibly Geiger is either an idiot or, he actually knows something. Personally I presume he must have an inkling of something..hes been working with this research longer than 5 minutes and obviously has access to all the information. Dr Bill Newmans has been quoted saying 'Some Mastiffs may not have true cystinurea, they may be developing the crystal - a combination of eating too much chicken and of being given an acid diet.' I am sure he has a position as others have posted...but putting all the bits of information together its quite possible this is in fact feasible..some mastiffs may not have true cystinuria.

-there are also more questions than answers to date, with environmental factors like diet playing a larger role than was originally indicated. 

The ramifications for the breed and for breeders is really serious....we all should be asking lots of questions! We should all be left with no doubts about how we deal with this.

Anna you say at the bottom of you post
PS....
if you don't test, then you don't know!
I don't mean to be disrespectful, I understand its your role and that you are asking for more urine samples and bloods for the research to carry on.. but based on the current info I would say
if you do test, then you still don't know!
and that is the most frustrating part I think. You can test and test and test and not be 'clear'.
It is not a simple or cheap exercise to test when you live outside USA..and timing with shipping is a big issue (as I found out). It would be good for breeders in other countries to test..but I can't really see it happening until as Marge says, things get straightened out, but also I think until there is a more conclusive outcome.

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Teresa

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Reply with quote  #124 

I'm going to post this one more time, then I give up. Dr Newman is being misquoted. How do I know this? I just got this email from him a couple of days ago! PLEASE READ IT CAREFULLY as he has has tried and tried to get his point across, but keeps being misquoted.
Just to clarify Dr. Bill Newman's position. This is a quote from him from a recent email to me where we were discussing this issue.

 "Now U of P is looking at diet as a problem which I have been
>
maintaining for years that the diet exacerbates the underlying
> condition and can be used as a means of helping or hurting.
> I still firmly believe that chicken, it by products , poultry and soy
> are not good but good all natural food and Venison fish and beef.
> Also no one pays attention to the amount of water ingested( maybe two
> gallons a day) and the acidity of the urine which are both very
> important.
>
It still goes back to the fact that the disease is inherited and
> recessive so it can occur ..."
(underlining emphasis added.)
Posted by permission, Dr. Bill Newman, 2/24/2009


Please note that he says diet exacerbates the underlying condition (he does NOT say "causes" C+). He also states "It still goes back to the fact that the disease is inherited and
> recessive so it can occur"...
  He does believe that a C+ boy can be kept symptom free (kept from forming stones) by diet, water intake and correct pH. He does NOT believe that any of the above prevent C+ status.
The point he is making is that this is an inherited trait but can be made worse or better by diet, water intake and urine pH.

As for Geiger, it appears to me he is in charge of the testing lab, but is NOT the researcher in charge:

PennGen Laboratories

A not-for-profit genetic testing branch of the Section of Medical Genetics.

Dr. Giger/PennGen
School of Vet Med
Univ of Pennsylvania
3900 Delancey St
Rm 4013
Philadelphia, PA 19104-6010

Ofc (215) 898 8894
Lab (215) 898 3375

Fax (215) 573 2162

 

The individual heading up the research itself is:

Paula Henthorn Ph.D.
Associate Professor of Medical Genetics
3900 Delancey Street
School of Veterinary Medicine
University of Pennsylvania
Philadelphia, PA 19104-6010

 This may be why we are getting conflicting answers. Meanwhile, please do not stop working on the research (and donating). It really is our only hope and I know Dr. Newman has put a CONSIDERABLE amount of his own money into the research (AND other as well). We owe it to our wonderful breed and to those who have put so much of themselves into finding the answers to this issues...



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annagmay

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Reply with quote  #125 
Please do NOT contact the researchers at UPenn unless you are going to participate in the research by submitting blood samples or make arrangements to donate kidneys.  They are very busy and need to stay focused.  The kidney donations have a special protocol which requires fresh frozen & overnight delivery with no added preservatives... 

Dr. Henthorn is the principal researcher for the genetic end of the study which is financially supported through the AKC CHF.

Dr. Giger and Angie are looking at the molecular and pathological end of the disease which includes diet...  Angie runs the majority of the NP urine screening tests and works very closely with Dr. Giger and Dr. Henthorn. 

The initial diet study is NOT financially supported at this time, but they're doing it to help all of the owners and breeders that want more answers into the roll diet plays with the disease.  They are also hand selecting participation in the initial diet studies which they hope will lead to a more sensitive urine screening test and offer more information on possible treatment options & preventative treatments with the disease.  Right now they do NOT want to be contacted by the Mastiff Community for participation in the diet study as they are still working on and fine tuning their initial proposal and study protocol.

Thanks,

Anna

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Anna May
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