I've been added to the group, and am not sure what I think of it yet. I've never had the issue in any of my Dobermans yet - so have very little knowledge about it. My dogs all are related to the one dog everyone seems to be blaming - I've had prostrate issues at middle age, but know that is what it was.... not cystinuria.

The one thing I have not seen yet (and I realize it is a new list), is anyone mentioning that they have spoken to the owner or breeder of dog they seem to be blaming. He lived to almost 13, and has produced good longevity. I don't like closed groups that are formed where blame is seemingly thrown around - it never seems to end well in my experience. Maybe this group will be different - but until the owner or breeder is informed, it just smacks of a witch hunt to me. Sorry - feel free to change my mind.

 

Wow... I am so confused.

I don't participate in Facebook. Could someone please explain what is going on?

Thanks
John
Portland OR

 

I was added to the group a few days ago too. I am not familiar with the disease but I'm interested to know more. Thank you for posting here on DT

 

Before I saw the thread started on DT I received a private post (on DT) and since in 60 years I've never had a Dobe dx'd with cystinuria I answered it privately asking why they had opted to invite me to the private list.

Mary Jo--if you'd like to tell me privately who this private group is pointing fingers at I'd be very interested to know who it was.

I told them that although I had never had a dog dx'd with cystinuria that I did have a dog whelped in the late 90's who was dx'd with hermaturia (a similar but not identical condition which shows with blood in the urine often with no evidence of infection where crystals may form but they are not cysteine crystals but to a more ordinary crystal which may show up secondary to in infection OR as a primary cause of an infection.

I've talked about this several times on DT when blood in the urine in males came up because my vets systematically tracked down a probably cause and developed a specific treatment--right out of human medicine which worked--the dog was on a special diet and supplement for the last 8 years of his life.

Cystinuria sounds a lot more like something that is common in cats (mostly males) which is known by a variety of names--Pandora syndrome is the very common one--there is quite a lot about it available on the internet.

Since my hematuria dog was not sired by a dog who was ever in the popular sire category and his dam was not from a main line show line I'd be interested in knowing who the indighted dog is.

Gotto go feed the clinic cats but I'll come backi and check in on this later.

dobebug

 

Hi Mary Jo,

Have you read any of the pinned posts or announcements in the group? No one dog or pedigree is the cause of this disease which has been reiterated several times in the group. This is not as uncommon as you think. I have been very open about my boy and his diagnosis, surgery, recovery and nutritional plan. We are working with Penn Gen to identify a genetic marker for this disease so we will not have even more cases than we already know of. There is no witch hunt. And yes, the owner you are referring to was notified back in 2012 when my boy was diagnosed and was willing to participate at that time if we could get a study going. There were not enough cases back then.

I just posted a really great article by Lori Hunt, DVM that explains it very well. Please read it when you have a chance.

 

Hi DobeBug,

I was trying to contact a different member. I think you actually liked their post on here and I clicked on your name accidentally.

 

Hello there!
I logged in today to post a new thread asking if anyone has ever dealt with Cystine Crystals/Stones, and I happen to see this thread. I don't have FB so I am not able to join that group, but my 2-year-old was diagnosed with the disease about two months, and ended up having several stones removed from his urethra & bladder last month. It has been absolute hell these last couple of months. So far the 3 vets I've spoken with about it (and who have seen him) have never dealt with, or seen, cystine crystals or stones and so they don't know anything about them. I've been doing so much research on the disease since I found out about it, reading several articles that have been written by veterinarians who have seen and treated the disease, but unfortunately when I talk to the three vets here about the advised treatment plans I've read about they have all told me that they don't believe that and are trying to treat the disease as regular bladder stones.
I am feeling so discouraged and alone right now with what to do for him. I don't feel I have any kind of backup or help with my boy and avoiding further stones.
Can anyone offer any kind of advice or help for me?
I'm not sure if it would be better for me to post a new thread about it or not asking for help.

 

You are not alone. Please join Facebook if only to join the Doberman Cystinuria group. We started the group 6 days ago and have people contacting us everyday with stories just like yours. You may also call the Millstone Animal Hospital. Dr. Koster is knowledgeable and would be willing to speak with you or your veterinarian.

 

Thank you, I will look into Millstone and see what kind of help Dr. Koster can provide. I may have a friend join the Facebook group for me as well.

 

Just curious.... My father , now 92 yo, for years used Lithotripsy on his patients with stones. Obviously, he was a Urologist.

Isn't that or similar technology available today with cats and dogs?

John
Portland OR

 

Bug, the purpose of the group is to find more cases of Cystinuria in Dobermans. We are trying to get a genetic test for the Disease as several other breeds have already done. The Facebook group is to educate owners and breeders. There were some common links in pedigrees of affected dogs - which supported the belief that it was a genetic problem. I have searched the archives and found a couple cases on the Doberman Talk Forum from previous years. No witch hunt - just a group of Doberman Breeders and Affected Doberman Owners working together with a passion to minimize Cystinuria in our breed.
Sophia Koster, DVM

 

Hi 4My...

Welcome from the Pacific NW.

Hope you join us in many conversations here.

John
Portland OR

 

Hi Sophia,

Thanks for the explanation--I was initially curious how my name had come up so that the new group had actually sent me a private post before the initial post had showed up on DT.

Actually it was many years ago that Michelle Santana asked you for your opinion as to what was going on with my hematuria dog--his crystals (when there were any) were just ordinary struvite crystals--you had recommended that his vets discuss the problem with a repro specialist before considering neutering (which is what was being considered at the time). You pointed out the obvious--saying that it was important to know where the blood was actually originating--DUH! Turned out it was from the bladder and not from the prostate and as I've said before a special diet and supplementing with glucosamine stopped the hematuria and he lived his life happily intact with no further issues.

dobebug

 

John, to answer your post about lithotripsy (using shock waves to break up stones)... It can be done. It is time consuming, and still requires anesthesia. Availability iss limited. Use of this method in dogs can be problematic with large stones and a large numbers of stones. Regular cyststotomy is still the treatment of choice for stone removal in dogs.
Sophia

 

My just turned 4 yr old intact European dobe was just diagnosed with cystine bladder stones. He has about 18+ small stones in his bladder and the vet has never seen this before in a Doberman. He recommended diet change to shrink and hopefully pass but up on researching he mentioned castration as it is hormonal caused my intact males (type 3) since he wouldn’t be genetically predisposed. I prefer not to castrate as it may not be the solution to resolve long term but hope a diet change can shrink them small enough to pass and then keep tight monitor on his urine ph…. If they don’t pass we will have to do surgery…. Can anyone shed some light on what works!?

 

See my post below yours #17

 

In 2018-2019~ My Male Doberman, at the age of 4, was diagnosed with Cystinuria-Bladder Stones- Inherited Genetic Disorder that can be Life Threatening. He was actually neutered one week before he started bleeding and unable to urinate. Ran him into ER Animal hospital in Naples Fl that diagnosed him "Cystinuria", I agreed to bladder surgery to remove stones. Was told he would be on a "Special" Diet the rest of his life. I never changed his diet, he recovered and never produced another stone~5 yrs later. Unfortunately the Veterinarians were not familiar with Cystinuria and did not know how to treat my dog after his surgery.
I had to find answers and put out a search for Cystinuria and joined a Yahoo group where I found One Doberman that was Diagnosed Cystinuria and his Breeder asked me to Join a new group she started on FB "Doberman Cystinuria" Group. As I would find out in a short time this Breeder had my Male's 1/2 brother.
As word spread about this Inherited Genetic Disorder I came to find my Dog's male sibling had the same Diagnosis as did another 2 Males that were 1/2 siblings to my male, same Dam different Sire.
The Dam had 2 litters then she was spayed. In each litter the Dam produced 2 male pups (Total 4 male pups) with Cystinuria, the Dam was the carrier.
According to UPA Neutering the Male Doberman diagnosed with Cystinuria is Curative, no special diet needed.
There are other breeds of dog's that Neutering is Curative for Cystinuria and other breeds it is not.

 

tbar--we appreciate your information, but Eurodobe1 only made this one post on Dec. 9th, and never showed up again. The rest of this thread is fairly old, so it will be closed per DT policy, but it will still show up if someone searches the topic. They can continue on to the facebook group if it is still active.