BLOG DISCLAIMER

**DISCLAIMER** Please note: I am not a veterinarian, and the purpose of this blog is solely to educate, provide resources, and share Reo's story. In this blog, I will present research and information on the theories of SARDS to which I subscribe, along with my own narrative. If you think your dog may have SARDS, or adrenal exhaustion/Plechner Syndrome, please seek veterinary care right away!

If you are just beginning your SARDS education, I suggest you start with the blog post from August 22, 2011 entitled "SARDS Resources". If you'd like to know our trials, tribulations, and joys from the beginning, start with "But first...Reo!" and click chronologically on from there.

If you would like to read my suggestions as to how I would approach treatment for a newly-diagnosed dog, check the November 16, 2011 post "If I had another SARDS dog" (and then read my blog more fully for appropriate context).

Though we have decided to suspend Reo's retinal protection supplements in September 2012 (see September 16, 2012 post "Decision for Reo") due to the fact that she had very little remaining vision, I am still strongly supportive of our treatment approach, and know that it changed Reo's health and longevity in a positive way. Feel free to comment and ask me any questions - I am happy to help if I can!

Update: Reo became an angel on October 21, 2014. She had a profound kidney infection, causing acute kidney failure, and she was unable to recover. The contributing factors to her decline are covered in my February 16, 2015 blog post "Farewell to Reo".

Though I do not regularly update this blog any longer, much of the information is still relevant (though some of the links may be out of date). Feel free to join the conversation at "SARDS Dogs United" on Facebook.




Saturday, August 27, 2011

Second round of treatment

05/11/11 - Reo got her second injection today. Per Dr. P, we skipped the Vetalog (triamcinolone) and just injected 25 mg DepoMedrol.

05/12/11 - Reo has been quite restless in the early morning, usually between 12 am and 4 am. Doesn't seem to need to go potty or drink, but she just wanders around in the bed like she can't get comfortable. I'm sure her hormone levels are adjusting.

She's gaining some weight, finally, after losing a couple of pounds due to her inappetance. Even 2 lbs. is quite a lot for such a small dog!  Her mood seems to be pretty good lately.  She seems to have more confidence on walks.

I've noticed that Reo's pupilary light reflex (PLRs - when the pupils constrict in response to light) are quite good when she is outside.  Sometimes in fluorescent lighting, her pupils stay very large.  It is a bit confusing, but I've read that SARDS dogs can still have good PLRs even though they are totally blind.  Hmmm...

05/13/11 - Reo only woke up once last night - that is some progress, and sleep is wonderful!!  :)

Still giving Reo 4 meals per day of mostly rice and Wellness canned food.  I've been sticking to the "stew" formulations, as they seem to have the least amount of ingredients with phytoestrogens.  However, she still has  fairly loose stools these days.

05/16/11 - Reo is sleeping a bit better, but still wakes up once or twice in the night.  She usually has to have a bowel movement, which is typically runny.  She is straining quite a lot, with not much stool coming out, which makes me wonder if she has colitis or IBD.  So far, she hasn't had any blood present, or abnormal color, but sometimes there is mucous present.

As Reo has gained weight and is now in her target zone (yay!), I've cut back to 3 meals a day instead of 4, for weight maintenance.

Sean reported that he thought Reo could see a little bit today - she acted atypically when she was outside, including navigating the steps, tree, and fence as though she had vision.

We had a longer-than-normal walk today, about 45 minutes!  Really the first time that she felt like walking that long.  She was trotting out in front, and even pulling a bit, which is the first time she's done this since losing her sight (usually she'd be as close as possible to my feet).

05/17/11 - Reo's colitis-like symptoms are continuing, but I see no blood in her stool.  Lots of straining, very little stool, some mucous.

I decided to start Reo back up on the canned pumpkin.  It's not her favorite, due to her memories of my cooked food concoctions.  She didn't eat all of her breakfast this morning.  :(

I also wondered about the laxative effects that the Magnesium Taurate may be having on her, so I did a little research.  While Magnesium itself can be a laxative, Magnesium Taurate complex is not known to be a laxative, so I can continue giving it to her without worry.

Second EI-1 panel

05/10/11 - We got the updated results from Reo's EI-1 panel today!  Results are below in the far right column.  I wanted to keep a running chart of her results for comparison purposes:



Reference Range
16-Mar-11
30-Apr-11
Total Estrogen
30 - 35
35.19
35.15
Cortisol
1.0 - 2.5
8.43
7.03
T3
100 - 200
62.7
72.12
T4
2.0 - 4.5
0.87
1.15
IgA
70 - 170
50
53
IgG
1,000 - 2,000
722
754
IgM
100 - 200
74
76


She has made some positive improvement after 5 weeks on oral supplements, but with her numbers still looking like this, I am happy we are doing the injections.

Estrogen is going down, cortisol is going down (I suspect that the isomers of inactive cortisol are being cleared by the liver), thyroid hormones are going up, and Ig numbers are also rising.  This is all great news.

I shared these results with Dr. N, and stressed that Reo's initial cortisol was high, and she has been on additional cortisol supplements (1.0 mg per day) and her cortisol number is going down.  In my mind, the only explanation for this was that Reo's high cortisol number was due to the presence of cortisol isomers.

The treatment begins!

04/30/11 - Today is my 36th birthday, and I can't think of a better way to celebrate than to start down the path of health for Reo!

Dr. P, Dr. O, and I agreed upon a treatment plan of a series of 3 injections, spaced 10 days apart.

We met Dr. O today, and he took a blood draw for another EI-1 panel for Reo.  He also injected Reo with Dr. P's recommended doses:  0.3 mg triamcinolone (Vetalog) and 25 mg methylprednisolone (DepoMedrol).  The injections were over faster you than you could say "lickety split", and there was no turning back.  I can't believe it took us such a long time to find a vet to help us, for what seems like such a minor "procedure".

I'll be honest - I was exhilarated but also nervous.  I was crossing fingers and toes that my research had paid off, that Caroline and Dr. P knew what was best for Reo, and that I made the right decision.  Only time will tell...

05/01/11 - Last night was an awful night with Reo.  She was up every hour to drink and urinate - definitely displaying PD/PU.  These symptoms continued throughout the day.  After speaking with Dr. P, he told me to eliminate the triamcinolone from Reo's future injections, and just inject the DepoMedrol.

05/02/11 - 05/04/11 - Reo still awake frequently at night, usually every 1.5-2 hours.  It's hard on Sean and me, but I know it must be even harder on Reo!  Her appetite has been good over the past few days, and I'm still able to get some supplements into her.

We saw Dr. Lanz on 05/04, and she recommended we start Reo on Vetri-DMG.  This is a liquid supplement (it also comes in pill form), and a completely natural compound.  It supports the immune system (important for dogs who are on powerful steroids, as steroids suppress the immune system), promotes liver detoxification (also important for SARDS dogs with adrenal issues, who are clearing lots of excess hormone/protein), and also helps circulation and oxygen utilization.

You can read more about the benefits here:  VetriScience Labs Vetri-DMG
Though I initially purchased this from Dr. Lanz, I began purchasing it from Entirely Pets on Amazon.com in the 113 ml bottle, as it was much less expensive (about $30, and would last Reo and Leigh [also put Leigh on this!] for months).

05/05/11 - Reo only got up twice last night - I LOVE YOU DR. LANZ!!  I am certain that acupuncture makes such a difference for Reo.  She shows such great improvement in mood and sleep after a treatment, and would encourage any SARDS dog owner to seek out a veterinary acupuncturist to help soothe their dogs.

It's also been very valuable for me to have another vet's eyes on Reo's case.  Dr. Lanz is a "real" veterinarian, but she has a Chinese Medicine point of view, so I can share Reo's bloodwork, symptoms, etc. and know that she will give me her perspective from both the traditional realm and also the Chinese medicine realm.

Last night, I had a dream that Reo regained her vision!  :)  That was nice.  However, when she went outside in the morning, she crashed into our fence after getting lost, and I think she slightly scraped her eye.  :(

05/08/11 - Reo has been doing much better at night - only up once or twice, usually.  She continues to be very restless and wander all over the house.

She is still rather heat-intolerant, and pants quite a lot, even when Leigh and Tula are not.

Reo also continues to have inappropriate elimination - not in the house when we are there, but if we leave her in her crate, she will urinate.  It doesn't matter if it's 10 minutes (literally!), or 3 hours - she'll go in there.  Acting out?

A less-angry liver

04/26/11 - We got Reo's CBC back today, and the results were in a positive direction!

ALT - 1166 (normal 12-118)
Alk Phos - 1098 (normal 5-131)
Total Bilirubin - 0.8 (normal 0.1-0.3)

Though her values were still quite high, they came down quite a bit over the past week.  Since she was improving, I decided to move forward with the IM hormone injections, and I contacted Dr. O to move ahead.  I made an appointment for 4 days later.

I can't really say exactly what it was that made me go with Dr. P's injection protocol vs. Caroline's.  I indicated in a previous post ( Angry liver  )that Dr. P and Caroline suggest different injectables.  Dr. P's suggestion was much more aggressive than Caroline's, and I think my reasoning was that if Dr. O was okay with using Dr. P's suggestion, than I'd do it.  DepoMedrol is a potent and long-acting hormone injection, but I wanted to be aggressive and try and get Reo in balance as quickly as possible.

04/28/11 - As Reo's appetite was improved, I began trying to sneak some supplements into her meals.  She was tolerating the Nutrimin supplement and the Enteric Support .  I also tasted all of Reo's supplements myself - I found that the Cell Advance was very bitter, followed by the Phosphatidyl Serine.  The Magnesium Taurate was not bitter at all.  I decided to stick with the Magnesium and Phosphatidyl Serine, and hold off on the Cell Advance for the moment.

Friday, August 26, 2011

Phytoestrogens in dog food


As if things in my mind weren't becoming difficult enough to remember, Dr. P started cautioning me about phytoestrogens in food I was giving Reo (mostly sweet potato in the canned food I was giving her).  Remember that the EI-1 panel evaluates all estrogens in Reo's body, and Reo's total estrogen was quite high.  I believe that the high estrogen was responsible for nearly all of Reo's Cushing's-like symptoms.  I had never even thought that I may be putting more estrogen into Reo, which I definitely didn't want to do.

If you review the list below (which I compiled from various sources I found on the internet, not necessarily for dogs only), you will notice that a lot of foods contain phytoestrogens - healthy, nutritious food.  It is nearly impossible to feed your dog something that eliminates all of these ingredients.  But, I think that if you have a SARDS dog with high elevated estrogen, it might make sense to try and minimize the number of ingredients s/he is eating from the list below.

The first 11 ingredients are the foods most high in phytoestrogens, and should be avoided completely.  If you are following the home-cooked, grain-free approach, this won't be too hard, but many dog foods contain (sometimes high) amounts of flax seed or barley.

  • Soy.
  • Millet.
  • Barley.
  • Flax seed.
  • Lentils.
  • Kidney beans.
  • Lima beans.
  • Rye.
  • Clover.
  • Fennel.
  • Chickpeas (garbanzo beans)
If you are following the home-cooked, grain-free approach, consider trying to minimize some of the ingredients below.  You will probably not be able to find a truly nutritious meal for your pup that does not include some of these ingredients, but it's just some food for thought (forgive the pun!). 
  • Apples.
  • Alfalfa sprouts
  • Celery.
  • Parsley.
  • Beets.
  • Bok choy.
  • Broccoli.
  • Cabbage
  • Cauliflower.
  • Carrots.
  • Cucumbers.
  • Mushrooms.
  • Brussel sprouts.
  • Green beans
  • Seaweeds.
  • Garlic
  • Squash.
  • Collard greens
  • Onion
  • Pumpkin seeds.
  • Sunflower seeds.
  • Sweet potatoes/yams
  • Cherries.
  • Olives.
  • Pears.
  • Plums.
  • Tomatoes.
  • Prunes.
  • Barley.
  • Oats.
  • Brown rice.
  • Blueberry
  • Wheat germ.
  • Bulgur.
  • Brewer’s Yeast.
  • Black-eye peas.
  • Mung bean sprouts.
  • Navy beans.
  • Red beans.
  • Split peas.
So what the heck can you feed your high-estrogen dog?  I think about some of the things that Reo enjoys eating that aren't on the list, and they are cooked kale, spinach, canned 100% pumpkin, and white potatoes, and raw melon (cantaloupe and watermelon), papaya, peaches (no pits!), and raspberries.

When I feed proteins, I always purchase organic meat.  This means no hormones or antibiotics added, which is very important.  Fortunately, Reo is a small dog, and so it's not expensive to feed her in this way.  I could find a great supply of meat at our local farmer's market.  Some farms are even grinding organ meats in with their beef for pet food, which is excellent!  If your dog is bigger, consider a Costco membership if you don't already have one.  Costco carries organic/grass fed ground beef, organic whole chickens, and organic chicken breasts/thighs at very reasonable prices.  You can also find wild Alaskan red salmon filets fresh or frozen, which are also a great choice (you want to steer clear of farmed salmon like Atlantic salmon, which is very high in contaminants).  Cage free/organic eggs are excellent sources of healthy protein.  Try and scramble one up for your dog in the morning and see how s/he gobbles it down!

If you purchase liver to feed your dog, please make sure that it comes from organic/grass fed animals with no hormones/antibiotics added.  Remember that the liver is the clearinghouse of the body, and it's responsible for detoxifying and breaking down excess proteins.  You don't want to feed your dog liver from a hormone/antibiotic laden conventionally-farmed animal.  This includes dehydrated liver as dog treats (also suggested in the Levin protocol as a source of adenosine).  I couldn't find any commercially-available dehydrated liver (except from our local farmer's market) that specified hormone/antibiotic free, so I chose to feed Reo sardines as her adenosine source.

I realize that this post is probably overwhelming if you are just beginning your research about SARDS, because it seems like everything is out to get your dog, and it's so much to remember!  Take a deep breath and relax...and do what you think is best for your pup!

Searching for a new vet

So, Dr. N and I decided to part ways for this portion of Reo's treatment.  This meant I needed to find a vet who would be willing to do hormone injections.  Dr. P suggested that I contact NVDS and have them send me a list of veterinarians in my area who have submitted blood for the EI-1 panel test previously.  I did so, and there was only *one* vet in my city who had done so!  The other vets were predominantly in two other states.

I picked up the phone and started calling.  Most times I had to leave a message.  In order to try and get the vets to call me back, I told the offices that I had a dog with "atypical Addison's disease".  I explained that I got the vet office's name from NVDS as one who had submitted blood for an EI-1 panel, and I wanted to speak with the doctor about the treatments undertaken for these animals.

This was a long and frustrating process.  Many of the doctors never returned my calls - how disappointing!  Some doctors who did return my call, either didn't remember the patients for the EI-1 panel, or the patients didn't have similar issues as Reo.  My list of about 50 veterinarians was quickly dwindling.

I had a great conversation with one vet about 3 hours (one-way) from me, who was also a holistic vet.  He had had good success with Dr. P's treatment, and I was impressed that a holistic veterinarian would proceed with such a "radical" treatment as hormone injections.  He told me that in one case he used Caroline's injectable suggestions, and in one case he used Dr. P's.  In both cases the dogs recovered both their health, and some functional vision.  This was really encouraging for me!  He agreed to treat Reo if we could not find someone closer to us.  But, I easily would have driven the 3 hours, even in hindsight.  I was only becoming more and more determined to get Reo the help she needed!

Fortunately, the vet in my city called me back.  Dr. O spent several minutes speaking with me about his personal experience with Dr. P's methods for his (human) family.  He agreed that IM DepoMedrol injections are somewhat "unorthodox" according to traditional veterinary medicine, but that (to paraphrase) "I'm only human - I can't claim to understand everything, but am willing to try - let's do this!".  I honestly could not believe the relief I felt.

But, before we got the hormone injections, we needed to make sure that Reo was doing better.  Her liver needed to heal, and she needed to complete her round of Baytril.  If we could repeat the CBC and see some improvement instead of decline, then we would proceed with the injections.

04/20/11 - Upped Reo's Medrol dosage to 1.0 mg, on the recommendation of Dr. P.  I began to notice some  problems with Reo's bowel movements.  She seemed to be straining quite a lot, but not much waste being produced (of course, she hadn't really been eating very much).

04/21/11 - Reo went back to Dr. N for more fluids and a Baytril injection.  We confirmed our mutual respect for each other's position, and I told Dr. N that I was actively looking for another vet to help us with the injections.
Dr. N taught me how to do a sub-cutaneous injection, so I could give Reo her Baytril shot once a day for a couple more days.
Fortunately, Reo was back to eating again - she was definitely liking the Wellness canned food, even though I felt guilty for giving her canned.

04/22/11 - Reo had an accident in bed last night.  Again, just sleeping in a puddle of urine and didn't seem to be aware that anything was amiss.
On the advice of Dr. P, I switched Reo to 4 small meals a day, comprised mostly of carbohydrates.  This was to be easier on her liver.  Remember that the liver is responsible for breaking down protein, so if she were to get only 2 meals per day of mostly protein, this could be overloading her liver.  Based on her last CBC, I definitely wanted to go as easy as possible on Reo's liver.
I got some tilapia and cod filets, and some white potatoes and cooked it up for Reo.  She was not impressed!  I eventually figured out that Reo didn't like the white potatoes, so I switched to white rice instead.

Dr. P suggested a supplement called Nutrimin, which is a 100% natural, calcium montmorillonite clay.  I myself have taken bentonite clay in the past while on a nutritional cleanse, so it wasn't completely foreign to me.  I read the information below, and decided to order some for Reo.  I was particularly interested in the digestive/GI tract soothing, immune system support, and liver support that this product could offer.

You can find more about Nutrimin here:  http://healthypetnetwork.net/?p=900 and here:  http://www.healthypetnetwork.org/nutramin.htm

Reo's meal plan became 4 meals/day of 2 Tbsp white rice, 1 Tbsp canned food, and 1/4 tsp of Nutrimin (in addition to her hormone pills).  We had still abandoned all other supplements.

04/24/11 - Mood seems to be improved, and she even played with one of her toys today!
I was still noticing Reo straining when she tried to have a bowel movement.  Her stool was quite soft, but not runny.  Sean and I started calling it "soft serve", which may prevent me from enjoying such a cone again in the future!

04/26/11 - Started to notice Reo becoming very restless in the evenings.  She would just wander around the house.  She didn't need to go outside, have any water, etc.  She was just restless.
We went back to see Dr. N today to get some blood drawn for another CBC to check Reo's liver.  Over the past week, Reo's appetite definitely improved and she was eating, so I was hopeful that things would look better.

Thursday, August 25, 2011

A word about money

If you're reading this blog, you probably know that veterinary care is not inexpensive.  And, there usually comes a point in time where you have to make some tough decisions about what you can afford vs. the best treatment for your animal.  SARDS diagnosis is not cheap.  ERGs are not cheap.  Extensive bloodwork is not cheap.  Ultrasounds are not cheap.  Thankfully, we have pet insurance.

Sean and I have been policy holders of Pets Best Insurance since 2005.  The reason that I adore this company, and chose them over some of the other options out there is that there is no fee schedule.  You pick your plan and your deductible.  Once you meet that deductible, they will pay a flat 80% of your veterinary bill.  They trust you and your vet to make the right choices about care.  You don't have to worry about whether or not most things are covered (of course, there are some exceptions, but they're fewer than most other companies out there).  In the 6 years we have had our policy for our dogs, they have never once refused a claim.  This really gave us the flexibility to choose to do what we thought was best for Reo.

I'm not getting any kick backs from them, or anything like that, but I recommend them completely to my friends, and I recommend them to you - my internet audience.  Check them out for your animals.  They are an awesome company.

Pets Best Insurance

An ANGRY liver, and Plechner consult

04/19/11 - Today, we got Reo's CBC back.  It was not good.  :(

ALT was 1990 (normal is 12-118)
Alk Phos was 2642 (normal is 5-131)
Total Bilirubin was 4.6 (normal is 0.1 - 0.3)

It seemed that Reo's liver was failing.  Things happened quickly today.  First, I frantically emailed Caroline about what happened with the bloodwork.  Caroline patiently explained that excess estrogen is very hard on the liver.  The liver has to work hard to break down excess estrogen, and so this was not a surprise.  Caroline helped me to realize that the elevated liver enzymes were a symptom of Reo's elevated total estrogen.

Dr. N completely abandoned any support she had for our adrenal exhaustion theory, and asserted that the Medrol and L-thyroxine Reo has been taking caused her liver failure.  She was also concerned that there may be a bigger problem, like cancer, and so suggested an ultrasound.  We scheduled the ultrasound for that afternoon.  In the meantime, since Reo hadn't been eating, they gave her some sub-cutaneous fluids.

I felt desperate.  I went home and filled out the consult form on Dr. Plechner's website.  Thankfully, Dr. P called me back in a matter of minutes.  I thought that perhaps Dr. N would be more willing to listen to Dr. P as he was a "real" DVM and has the most experience with Plechner's Syndrome/adrenal exhaustion than anyone.  Dr. P confirmed everything about Reo that Caroline had, and confirmed that under no circumstances do we stop giving Reo her Medrol and L-thyroxine.

Meanwhile, Reo was getting her ultrasound.  The results revealed the liver was normal size (good) but mildly inflamed (not so good).  Her gall bladder wall was uniformly thickened, which suggests an infection like cholangiohepatitis, which comes from bacteria in the intestine.

Notably, Reo's adrenal glads were normal size and shape.  This finally led Dr. N to abandon the theory that Reo had Cushing's disease (yay!).  All of Reo's other organs were "unremarkable" - for some reason, this term in the report makes me smile.  Spleen, kidneys, lymph nodes, stomach, etc. - pretty boring!

After these results, Reo got some sub-cut Baytril (antibiotic), Pepcid, and an anti-nausea medication.  When a dog has extremely high bilirubin as Reo, this can make her feel truly awful, and so it was no surprise Reo was anorexic.  Dr. N wanted to hospitalize Reo so she could have continuous fluids, but I decided not to do this right away until I could consider all of the options.  I promised to bring Reo back the next day for more fluids and medications.

I abandoned the "cooked food only" from the Levin protocol, and decided to give Reo almost anything she wanted, just to get her eating again.  I abandoned her supplements for the time being.  As soon as she got home from the vet, she ate some Wellness canned food and a few treats.

So, now what?

After talking to Dr. P and Caroline, they both suggested intramuscular (IM) injections of hormone.  By doing IM injections, it would completely bypass any absorption issues that Reo was having with the oral Medrol.  It also meant that Reo's body could come into balance much quicker than using oral supplementation.  I was on board.

Now, this is where it started to get confusing.  Both Caroline and Dr. P suggest one long-acting and one short-acting corticosteroid.  Caroline suggests triamcinolone and dexamethasone.  Dr. P suggests triamcinolone and DepoMedrol (methylprednisolone - basically the injectable form of what Reo had been taking orally).

I suggested this to Dr. N and she flatly refused.  She was now completely not on board with the Plechner's syndrome/adrenal exhaustion theory, and would not advocate the use of any steroid for Reo.  We appeared to be at an impass.

This was the most frustrating feeling to want a treatment for my animal that I was paying for, but have a vet not willing to help.  I said I would sign waivers, no matter.  So, I decided to cut ties.  I told Dr. N that I didn't want to compromise her ethics, and I understood I was asking her to step outside her comfort zone, but, we've started down this path, and I was committed to doing what I thought was best for Reo.  We parted with no hard feelings, but I told her that I would be calling around to find a new vet.

The search begins...

Tuesday, August 23, 2011

1 step forward, 2 steps back

04/09/11 - Today on our walk, I think Reo reacted to a squirrel in the distance.  It was maybe 100 feet away - I'm not sure if she could smell or hear it.  After that, her mood completely changed!  She was trotting out ahead of Leigh and me, and her tail was held high (not tucked like it usually is).  I didn't want to read too much into it, but it was pretty cool to see some of our "old" Reo back.  She also went up all the front porch steps with some encouragement (first time since losing her sight).

04/11/11 - Our one month "anniversary" of SARDS diagnosis
We are still struggling to get Reo to eat any breakfast, and now starting to have problems with dinner as well.  I had begun to put all of the powdered supplements in her dinner, as she wasn't eating breakfast - maybe it's too much powder?
Reo refused to eat her sulfasalazine in peanut butter this morning - had to force it down her, along with the Medrol and L-thyroxine.  :(  I tried to feed her only ground beef/organ meat, and she ate about 1/2 Tbsp.
At dinner, I removed all powder, and she ate some ground beef/organs and some chicken thigh.  I was able to give her her L-thyroxine and supplements in peanut butter after her meal.  Reo has absolutely zero interest in sardines lately.

04/12/11 - Reo refused all food this morning.  No peanut butter for her!  I had to force-feed the sulfasalazine, Medrol, and L-thyroxine again.  She HATES it, and fights, spits out the pills, and looks at me as though I'm torturing her.  This is hard.
Tonight, I wrapped her meds in a slice of Velveeta (yes, most definitely not the healthy thing!) - but, she ate them!!
I also spoke with Dr. N today - we discussed Reo's inappetance, and thought that maybe we could compound Reo's medications if she continues to refuse to eat.

Today, I stopped trying to give her Phosphatidyl Serine, in an effort to reduce the amount of things I'm forcing down her.

04/13/11 - Another symptom - Reo wet the bed at about 5:30 am.  She was sleeping and leaked out some urine - and was not aware that it happened.  I took her outside, and she had a long pee, so maybe her bladder was extra full?
She was not interested in breakfast again, but she ate her meds wrapped in Velveeta.  I took some pastured pork ribs out.  I haven't tried pork with Reo yet, so hopefully it will spark her appetite!
Later, at dinner, she wasn't interested in the pork.  She also was not interested in Velveeta or cream cheese for taking her meds - I had to force them down her throat.
I began to worry that she hadn't had any food today, so I offered her some Orijen kibble - she ate maybe a dozen pieces, so that was encouraging.

04/14/11 - Reo woke up quite early this morning, and threw up in the bed.  She wouldn't eat anything this morning, so used some cream cheese to force her meds down.
In an effort to get Reo to eat something, I went out and got some Wellness canned food, as well as Organixx and AvoDerm, in case she doesn't like the Wellness.  I begin to feel guilty offering her a commercial diet - this is not part of the Levin protocol.  Reo will no longer eat any beef liver, sardines, or salmon oil.
I also got some low-sodium deli turkey and liverwurst, to see if she could take her meds in this.
The canned food worked - she ate some turkey/sweet potato canned food right away for dinner!  And, she took all of her meds and supplements in the liverwurst.  Mommy wins - haha!

04/15/11 - Reo woke up several times during the night.  She drank a lot of water, had diarrhea about 2:30 am, and threw up a small amount.  She wouldn't eat anything for breakfast, and refused liverwurst and turkey breast.  I had to force down the sulfasalazine, Medrol, and L-thyroxine.
Sean reported that Reo seemed hungry around 3 pm, so he offered her 1 Tbsp of Orijen in warm water and she scarfed it down!  She ate a little bit of dinner - kibble and wet food.  But, I had to force all her post-dinner meds - she was really difficult tonight.

04/16/11 - Last night was tough.  Reo was up about every 2 hours for water.  She is so restless and doesn't want to stay in our bed.
Reo ate a few bites of kibble, but had to force her meds.  I feel pretty awful about Reo's condition right now. It sucks.  :(

04/17/11 - Another sleepless night.  She was up every 2 hours for water/urination.  I am becoming an expert at making a medication "bolus" in Velveeta and shoving it down Reo's throat.  It's not a good feeling, and Reo is starting to resent me!
Sean got her to eat about 2 Tbsp of kibble today, so that was something.  I forced her evening meds in liverwurst.


04/18/11 - Worst night yet with Reo!  :(  She was up every hour to drink or urinate.  She also leaked out some urine on me after I picked her up, which was strange.
Reo's schedule is totally off.  She is sleepy/tired at 6 am on, but insomniac at night.  How can we get her back on track??

(Note:  Insomnia is often reported by owners whose dogs have adrenal diseases, like Cushing's.  But remember - elevated estrogen can mimic the symptoms of Cushing's!)

Today I decided to take her to see Dr. N.  I learned that sometimes sulfasalazine can cause nausea in dogs, and we wondered if this couldn't be why Reo was unwilling to eat.  We agreed to stop all supplements except the Medrol and L-thyroxine, and repeat the CBC.  Dr. N drew some blood and sent it out.

Inappetance, and other symptoms

03/30/11 - Still having trouble getting Reo to eat breakfast, but in general, she eats dinner okay.  Reo is definitely experiencing PU/PD - drinking lots of water, we estimated about twice her normal consumption.
We also began to notice some loose stools, so we started feeding her ~1 tsp of pumpkin with each meal.

04/01/11 - It's the first of the month - what to do?  The dogs get their heartworm medication the first of the month, but the Levin protocol suggests removing any unnecessary toxins.  Because we live in a high-mosquito area, there is a huge rate of heartworm among dogs.  I decide that it is not worth the risk, and give Reo her Heartguard Plus chewable.

(Note:  I later learned from the SARDS dogs Yahoo group that ivermectin [such as Heartguard and Heartguard Plus] has been shown to cause blindness in high doses.  Again, wanting to maximize our chance for success with Reo, I got a prescription for Interceptor right away from Dr. N.)

04/02/11 -  Begin giving Reo her sulfasalazine, Medrol, and L-thyroxine in peanut butter separately, in case she didn't eat her breakfast.  I thought she could do without the supplements if necessary, but I wanted her to get the correct hormone dosage.

04/05/11 - Today I emailed Caroline Levin regarding Reo's Medrol dose.  I wasn't sure that the 0.75 mg dosage was helping her, so we agreed to lower it to 0.5 mg for another week to see how she does.  Caroline mentioned that Dr. N had called her to discuss Reo, and Dr. N was extremely skeptical and uncomfortable with the adrenal exhaustion theory and treatment.  This is a blow, and I begin to have the feeling that this isn't going to be straight forward.  At all.  :(

04/06/11 - Even after emailing with Caroline, for some reason, I kept thinking about Reo's inappetance and potentially low cortisol.  I decide to keep her at the 0.75 mg dose.  By the way, it is a huge pain to dose Reo at 0.75 mg, when all I can get is 2.0 mg tablets!  It requires some creative pill-cutting, let me tell you!

We had another appointment today with Dr. Lanz. Reo did well in her treatment, but was definitely more alert this time as the needles were going in.  She eventually relaxed and fell asleep.  I'm not sure if you can see the needles, but here is a picture of Reo during acupuncture:


I also discussed Reo's "stomach aliens" (this is what I call the gurgling sounds coming from her belly - when we hear these, Reo is not interested in eating), and inappetance.  We decided to start Reo on Standard Process Enteric Support.  This will hopefully help with her digestion and GI absorption (remember Reo's IgA number was very low).

It's worth pointing out just how important the gastrointestinal tract is for dogs (and people for that matter!).  A malfunctioning GI tract can have implications on the immune system, liver, and even the adrenal glands.  Therefore, Dr. Lanz and I thought that supporting Reo's GI tract was a good idea.  A likely cause of Reo's loose stool is that her colon was inflamed, and she was unable to re-absorb water.  If the water can't be re-absorbed by the colon, it will be expelled with her stools = loose stools.  We hoped that the Enteric Support, together with the sulfasalazine, would help to calm her GI tract down, and reduce any inflamation.

Acupuncture, and Levin consult

Over the next few days, Reo's symptoms continued - panting at night, PD/PU (lots of drinking and peeing), restlessness, depression (I swear, she hadn't wagged her nub in days...).

Unfortunately, she also started developing a new symptom - she was refusing to eat, usually breakfast.  I found myself putting all sorts of creative "mixers" into her food to get her to finish her meal.  Remember, Reo was on a lot of supplements/powders, as well as hormones, and I wanted to get all of them in her!  For a while, Grizzly wild salmon oil and/or an extra sardine seemed to do the trick.

(As I would learn later from Caroline, inappetance [refusing to eat] is a symptom of extremely low cortisol levels in the body.  Reo was in crisis.)

03/24/11 - Our first acupuncture appointment with Dr. Lanz!!  I'm sure I freaked her out with all of my crazy print outs, notes, list of medications/supplements for Reo, and frantic gestures.  I told her that I wasn't looking for acupuncture to help with Reo's SARDS per se, but I wanted to help Reo feel better emotionally, and get her supported as much as we could.  Thankfully, Dr. Lanz agreed to help us!

I described Reo's trouble sleeping at night, and mentioned that it was always between midnight and 3 am.  Dr. Lanz explained that in Chinese medicine, the body's "chi" travels through the organs on a set schedule.  Between midnight and 3 am, the organs active are the liver and gall bladder.  (Remember these two organs - they will become important later in our story!)  She focused her treatment on these two organs.  We agreed on a regular treatment schedule.

That night, Reo slept through the whole night.  I.  Could.  Not.  BELIEVE. It!  It was my first full night of sleep in a couple of weeks, and it was awesome!  I became an acupuncture convert right then and there (and shortly thereafter pursued treatments for myself, to help me cope with the stress/grief/anxiety I was feeling going through this situation with Reo).  The next day, there was a noticeable increase in Reo's energy levels.  She seemed more alert, and she wagged her tail - hurray!

03/26/11 - Today, we had our consultation call with Caroline Levin.  Having read her website word for word, and understanding it, I think this call was most beneficial for Sean. Caroline does such a great job explaining things in lay-person's terms, and she is so patient and encouraging.  It helped me immensely to know that I had her to lean on for support during Reo's treatment.

Caroline stressed the importance of a dual approach:  1) address the underlying adrenal exhaustion issues and 2) initiate retinal protection.  Caroline's research shows that about 20% of dogs can regain some vision when the protocol is initiated within 4 weeks of diagnosis.  Because we started the full protocol about 2 weeks post-SARDS diagnosis, we thought had a good shot.  Regardless of the vision outcome, I was highly interested in correcting Reo's adrenal exhaustion/Plechner's syndrome.  Anything else would be icing on the cake!

On the consult call, we agreed to up the Magnesium Taurate, and also increase the Medrol to see if we noticed a difference in mood/behavior.

Over the next several days, I struggled to get Reo to eat regularly.  I cooked new protein - all organic/hormone free turkey thighs, beef shank, eggs.  I concocted new veggie and fruit mixtures to find something palatable for her.  I added extra sardines, salmon oil, crushed beef liver, wild canned salmon, peanut butter - you name it!  Some of those things would work, but never a sure thing.  Reo was not enthusiastic about eating.

The Power Of The Walk
Despite Reo's inappetance, lethargy, and depression, I insisted that she go for (at least a short) walk, every day if possible.  I happen to be a fan of Cesar Millan "The Dog Whisperer", and am on board with his thoughts on the importance of walking your dog.  So, even though Reo was sick and hurting, I wanted her to walk. Walks are critical for dogs to feel themselves, and I think that environmental stimuli (birds singing, squirrels running, smells to sniff) can help "snap a dog" out of their funk.  Fortunately, there are some less-trafficked alleys and streets, which allowed me to walk Reo and Leigh in the middle of the street.  It was hard for Reo to deal with uneven pavement, curbs, branches, etc., but if she was on flat, clear pavement, she would trot right along.  I tried to get at least 15-30 minutes of exercise for her at least 3x/week.  Many times, Reo would sit down in the middle of the street, and refuse to go on.  I'd always wait for her, coax her, tug gently on the leash.  She'd always start up again - she just needed a minute to collect herself.  So, if your SARDS dog does this, be patient!  Don't pull, don't pick him/her up.  Just wait a minute or two, take a deep breath, and move on.

Monday, August 22, 2011

First EI-1 panel

03/21/11 - Today, we got Reo's bloodwork back from NVDS:




Reference Range
16-Mar-11
Total Estrogen
30 - 35
35.19
Cortisol
1.0 - 2.5
8.43
T3
100 - 200
62.7
T4
2.0 - 4.5
0.87
IgA
70 - 170
50
IgG
1,000 - 2,000
722
IgM
100 - 200
74


Remember that this test is highly sensitive, so even minor changes are significant.  She is severely out-of-whack for every analyte measured!  :(  


Like me, you may be surprised at Reo's very high cortisol number.  You may wonder, after all this talk of adrenal exhaustion, how Reo could possibly have high cortisol!  Well, if you read Dr. P's and Caroline's site thoroughly, you may remember that sometimes the adrenal glands, when stressed, make a mistake and instead of "true" cortisol make an isomer of cortisol.  An isomer of cortisol looks nearly identical to "true" cortisol at the molecular level, but the body can't use it.  The laboratory test cannot distinguish between active cortisol the body can use, and the inactive isomers of cortisol.  Dr. P also states that there is absolutely no reason for an animal to have both high estrogen and high cortisol.  If total estrogen is high, it means that cortisol is low, even if it doesn't appear to be.


Dr. P also asserts that if a dog's CBC reveals normal levels of eosinophils and lymphocytes (these are types of white blood cells), then the cortisol is likely inactive cortisol.  If the eosinophils and lymphocytes were present in reduced numbers, then the cortisol is probably active.  Since Reo's CBC revealed normal levels of both white blood cell types, I proceeded under the assumption that Reo's high number was inactive cortisol.  Most other SARDS dogs' EI-1 panel results that I've seen have revealed low cortisol (which you'll see later in Reo).


Another important consideration is that elevated estrogen can mimic all the effects of elevated cortisol.  I think this is very important, because so many SARDs dog owners report Cushing's-like symptoms.  In reality, it is probably elevated estrogen that is causing the symptoms.


You will also notice that T3 and T4 (thyroid hormones) are low.  This is important because thyroid hormones are essential to normal body function, as they regulate metabolism.  Excess estrogen can increase thyroid binding globulin (TBG), which binds thyroid hormone and renders it useless to the body.  In Reo's case, it was very important to supplement thyroid hormone (L-thyroxine, aka levothyroxine, aka Soloxine - they're all the same thing), so Reo's body had enough available to help her body function.


All of the immunoglobulins assayed were quite low.  IgA is important, because it helps the absorption of nutrients and molecules in the gastrointestinal tract.  With Reo's number so low, it means that she probably isn't absorbing nutrients or medication very well.  Because of this, Dr. N agreed to prescribe the Levin-recommended dose of sulfasalazine (commonly used to treat colitis in dogs).


I also want to mention that we got the results back from the ACTH test from the University of Tennessee.  Their T4 test showed Reo as normal, but TSH (Thyroid Stimulating Hormone, which regulates the thyroid gland and tells it what to do) was low.  The test results showed that Reo was above the baseline for Cortisol,  Androstenedione, and Estradiol pre-ACTH stimulation.  After ACTH stimulation, Reo was above baseline for Cortisol, Androstenedione, Estradiol, and both Progesterone and 17-OH Progesterone.  They reported that Reo's results "indicate presence of increased adrenal activity (significant)".  This lead Dr. N to conclude that Reo had Cushing's disease, maybe atypical Cushing's disease.


This image, taken from http://www.petcarebooks.com/pdf/overview_adr_exhaust.pdf, shows how these hormones fit with each other:


Standard tests usually measure only one estrogen compound: estradiol. However,the NVDS test is for total estrogen, which includes ovarian and adrenal estrogen as well as estrogens from environmental and food sources (such as soy - high in phytoestrogens).  Dr. P and Caroline think (and I agree) that this provides a more accurate measurement.  Therefore, we all recommend the use of the NVDS testing facility.


The take-home message from the University of Tennessee was inconclusive, as far as I was concerned.  Dr. N was so confused by this result, and still thought that Reo had Cushing's disease.  I did my best to explain that elevated estrogen is causing all of these issues, but I think Dr. N begins to doubt me...

Diagnosed, so now what? (Sourcing Levin supplements)

03/14/11 - After spending the entire weekend reading everything I could about SARDS and applying it to Reo, I came up with some ideas.  I immediately ordered Caroline Levin's "Living With Blind Dogs" and paid an exorbitant amount of money to get overnight shipping from Amazon.com! I called Dr. C and Dr. N to discuss my findings and ideas.  My theory went something like this:

I think Reo has adrenal exhaustion.  Her adrenal glands aren't making the correct amount, or correct type of cortisol, and I think she could have elevated estrogen.  Elevated estrogen is cytotoxic, and can lead cells to uptake too much calcium, which can lead to hyperpolarization of the retina (a fancy term that means Reo's retinal cells have a "Charlie Horse" and can't get electrical messages through to the brain).  If her retinal cells are hyperpolarized, this means no electrical signals can get through to the brain (flatline ERG).  If we can lower her total estrogen levels, and pump the calcium out of her retinal cells, maybe they can "relax", and get electrical messages through to Reo's brain before her body destroys her retinas permanently.

I wanted to get Reo's blood taken for the EI-1 panel from NVDS, and begin Caroline Levin's protocol immediately.  Dr. C, being an ophthalmologist, really had no idea about the endocrinology side of things, but he asked me to keep in touch on Reo's case.  Dr. N agreed to do the blood panel at NVDS, but as a compromise, she wanted to do an ACTH test on Reo.

The ACTH test is commonly used to help diagnose Cushing's or Addison's disease.  The ACTH hormone stimulates the adrenal glands to secrete cortisol, and by measuring hormone levels before and after the ACTH injection, it can help diagnose deficiencies or excesses.

I printed out LOTS of pages from Caroline's and Dr. P's sites for Dr. N, and highlighted key phrases, and made notes in the margin.  Dr. N reviewed all of this, and said she would help us try Levin's protocol, but a lot of the science seemed 'fringe' to her.  That was good enough for me to begin!

If you are interested in Caroline Levin's suggested protocol for SARDS dogs, please purchase the book "Living With Blind Dogs" (Second edition), or request a consult, so she can tailor her suggestions to your dog.

03/16/11 - Levin protocol day 1!
Though I had my doubts that Reo had some food sensitivities from a commercial diet, I decided to jump in with both feet and switch Reo to a cooked, homemade diet.  Reo has been on Orijen kibble "Regional Red" for quite a while - this kibble is grain-free, high-quality, and full of unique protein sources.  But, I love to cook, and thought it would be fun to cook for Reo!  I whipped up a mixture of ground turkey, wild canned salmon, and egg for her proteins.  For veggies, I made carrot, yam, apple, and spinach.  I cooked everything and then mashed it all up.  As a source of adenosine, I got some Bristling sardines packed in olive oil, and gave Reo one half of one sardine daily.

I ordered all of the supplements listed in Living With Blind Dogs.  Links to retailers on Amazon.com are provided to save you some time.  Some of the manufacturers suggested in the book, I couldn't find.

Cell Advance 440
Magnesium Taurate
Phosphatidyl Serine
(Make sure the phosphatidyl serine you purchase doesn't have Ginko biloba, etc. in the supplement)

Today, Reo had her blood draw for her EI-1 panel, and also stayed at the vet for a few hours for her ACTH test.  Dr. N also injected Reo with Levin's recommended dose of dexamethasone.  Dr. N would not inject the recommended dose of triamcinolone, as she felt it was too long-acting, and would be a risk without knowing Reo's bloodwork results.  Dr. N also prescribed Reo some Medrol tablets, but not the suggested L-thyroxine.

That evening, Reo was acting very strange.  She was awfully confused, very thirsty, and quite restless.  She drank a lot of water, and wanted to get up quite frequently at night.  I began to notice that most of her restlessness at night was between midnight at 3 am.

03/17/11 - So far, Reo seems to be adjusting to the cooked food pretty well.  Stool is normal, appetite is good.  Began Reo's hormone supplementation with 0.5 mg Medrol this morning.

I called Dr. N to see if we could get the L-thyroxine, but Dr. N felt uncomfortable prescribing this until we got the bloodwork back.  Hypothyroidism is one of the most common mis-diagnoses in veterinary medicine, and so I think she was being extra cautious.

Today I also begin to research veterinary acupuncturists in our area.  I wanted to find someone who would do home visits, as Reo was pretty tired already of vet offices!

03/18/11 - Started Reo on the Cell Advance 440 and Magnesium Taurate.  I opened the capsules and added the powder to her food.
Reo is very disoriented in the mornings - she can't find her way outside by herself to go potty.  The evenings are generally better for her.
At night, she is still waking up between midnight at 3 am, panting.  One of us gets up and takes her to some water, which she drinks enthusiastically (PD).  Began to notice an increased amount of urine (polyuria - PU).

03/21/11 - Started Reo on Phosphatidyl Serine

This marks 10 days since Reo's SARDS diagnosis.  Caroline Levin stresses that quick treatment is critical, so I hope that we are on the right track.  We have all of the suggested supplements, and the Medrol - we're waiting on the L-thyroxine.

SARDS Resources

SARDS is a complicated disease, and there are conflicting theories about the causes and treatments.  I personally, subscribe to the cause of adrenal exhaustion/Plechner's syndrome (I will sometimes use the two interchangeably), and believe in treating this cause.  I follow the work of Caroline Levin and Dr. Alfred Plechner, to whom I introduced you in my "Cast of Characters" post.  When doing my research, this theory just made sense to me when I thought about Reo's symptoms.

Reo never had any allergies, skin rashes, itchy skin, food intolerances, etc. that would suggest autoimmune issues.  I believe that SARDS and IMR (Immune-Mediated Retinitis) are two different diseases.  I do not believe that SARDS is an autoimmune disease, while I do believe that IMR is an autoimmune disease.  I won't talk too much about IMR or the IVIg treatment for SARDS, as these are not part of Reo's story.

I won't lie - this is a TON of information to digest, and it is completely overwhelming.  It can be highly confusing, not to mention highly frustrating, especially if you don't have a background in science/anatomy/physiology/biochemistry/ophthalmology!  Please feel free to post questions in the comments and I will help if I can.

Please remember that I'm not a veterinarian, and in no way do I try to discredit anyone's research, theories, or experiences.  I just want to present Reo's story, from my perspective, in a way that makes sense to me, in hopes of helping others!  While I may not be an expert on SARDS, I am an expert on Reo and her treatment, and that's why I'm writing this.

Let me be clear about one very important point.  It is highly likely that your veterinarian, and even your veterinary ophthalmologist, does not have any experience with treating SARDS.  It is also highly likely that he or she has not read any research, or is not familiar with the treatments available to SARDS dogs.  This very fact is infuriating, frustrating, and downright puzzling, but I know that veterinarians and doctors can't know everything about all diseases.  The key is, they need to be open-minded enough to educate themselves so they can help you and your dog.  It is absolutely critical that you are an advocate for your dog, and if you want to pursue treatment, you must be willing to find a veterinarian to help you.  You must do so quickly, because the health of your dog depends on you!

Please read the links below to find out more information about SARDS and IMR.

Wikipedia
Always the best place to start for a general, overview definition!

Caroline Levin, RN
Her site was (and still is) my bible in many ways.  There is a wealth of information and research on this site, and if you are the owner of a newly diagnosed SARDS dog, I suggest you read each and every link on this site!  Take notes, and jot down questions you may have.
Caroline's research articles have a "plain English" translation, and so it makes it easy to read about the symptoms, testing, and treatment that these dogs underwent.  Having this information will help you to communicate with your veterinarian.
This article in particular is a nice comparison of the adrenal exhaustion vs. autoimmune theories of SARDS:

I highly recommend a consultation with Caroline, if your dog was recently diagnosed with SARDS.  She can help you understand this disease, and suggest treatment for your dog.  You may email her to set up a consultation time at consult (at) petcarebooks (dot) com

Dr. Alfred Plechner, DVM
Dr. P's site is also a wealth of information.  While both he and Caroline subscribe to similar theories about adrenal exhaustion, they sometimes use different terminology, and suggest different treatments.  Dr. P hasn't done as much research on SARDS specifically like Caroline, but Dr. P has helped over 150,000 humans and animals during his career.  He has also published several books and articles.  To me, his website helps put everything in perspective, as it is "bigger picture" than just SARDS dogs.

I do suggest that you read each and every page on Dr P's site, using the navigation links on the left.  Again, take notes, and jot down any questions you may have.

Bonnie Sue the Scottish Terrier's mom wrote an extremely interesting article on her experiences, including Levin's and Plechner's theories, Dr. Grozdanic's theories, and IVIg information.  It is very well-written, and a great overview of Bonnie Sue's story.  It should be required reading for any dog owner, let alone SARDS dog owner!

I highly suggest a consultation with Dr. Plechner, but he typically requires that your dog already have the EI-1 panel from NVDS (see next entry).  Dr. P treats Plechner Syndrome/adrenal exhaustion quite aggressively, and not all vets will be willing to undertake his protocol (this was my personal experience), so be prepared.  However, Reo is living proof that his treatment WORKS, and isn't your dog's health worth it?  You can fill out the consultation request form on Dr. P's site:  http://drplechner.com/consultations.php

National Veterinary Diagnostic Services (NVDS)
This laboratory will perform a critical blood test to help diagnose your SARDS dog's underlying adrenal issues.  Caroline Levin reports that 98% of all dogs diagnosed with SARDS have adrenal exhaustion.  Therefore, it is of utmost importance that your dog is diagnosed and properly treated!
NVDS performs the most sensitive test, and is recommended by both Caroline Levin and Dr. P (please note that neither is affiliated with the laboratory, but just endorse their testing).  The needed test is the EI-1 panel (endocrine-immune 1 panel) and reports on total estrogen, total cortisol, thyroid hormones, and immunoglobulins.  This information, taken together, will help diagnose your dog.  Your veterinarian may want to send the test out to the University of Michigan, or the University of Tennessee.  I suggest that you push for the NVDS test, as it is more sensitive, and measures all of the analytes which are important to diagnose your dog.
This lab can also be very helpful if you need to find a veterinarian in your area who may have used Dr. Plechner's or Caroline Levin's protocol in the past (some individuals have had success [like me], and some individuals haven't had much success, but it's worth a try if you are desperate to find a vet who'll help you!)

Print out the forms on the website, and bring them to your veterinarian.  Your dog's blood sample should be spun down, and the serum shipped via overnight on ice packs to be kept cold.
http://national-vet.com/

SARDS Dogs - Adrenal Exhaustion Yahoo Group 
This is a group that I started, and is intended to be a safe place to learn about and discuss adrenal exhaustion/Plechner Syndrome, and the specialized treatment for this disease, following the recommendations of Dr. Plechner and Caroline Levin.  Members are encouraged to share their own experiences and make suggestions to other members that need help (keeping in mind that we are not veterinarians, and our suggestions should be discussed with a vet!).
http://pets.groups.yahoo.com/group/SARDSdogs_AE/

SARDS Awareness
A site that talks about some of the differences between SARDs and IMR.  I personally do not agree with all of the information on this site, as it is heavily weighted toward IMR and the associated IVIg treatment from Dr. Grozdanic at Iowa State, but it is a good resource nonetheless.  Unfortunately, it is not regularly updated, but if you are interested in learning more about IVIg therapy, including Dr. Grozdanic's treatment protocol, it is on this site.

SARDS Dogs Yahoo Group
This site was a great support to me when Reo was first diagnosed - the members are very knowledgeable and helpful about SARDS, IMR, IVIg, and blind dogs.  If you need suggestions about how to help your blind dogs cope, this is the place to visit and pose your question!
http://pets.groups.yahoo.com/group/SARDSdogs/

Blind Dog Info
This page is a collection of stories from owners whose dogs were/are affected with SARDS.  Sometimes it helps just to read others' experiences.
http://blinddog.info/sard.htm

There is also a message board, which you could find useful.  It covers other topics than just SARDS.
http://blinddog.info/msgbd/


After spending countless hours on these sites, perhaps consulting with Caroline and/or Dr. P, and getting your dog's blood test back from NVDS, you may come to the same conclusions that I did:
My dog has adrenal exhaustion/Plechner's Syndrome.  My dog's adrenal glands are not making the cortisol s/he needs, and they're making adrenal estrogen instead.  These high estrogen levels are toxic to my dog's cells, including his/her retinal cells.  High estrogen levels also mimic the symptoms of Cushing's disease.  My dog is sick, and s/he needs help immediately!

So...forward we go!