Time to say goodbye

Over the past few years I have noted that misinformation has become far more prevalent on the internet than actual information.  A person can painstakingly read academic articles, distill from them what is relevant and write about that and about their lived experience.  Or a person can just make stuff up, because they want it to be so, and write that instead.  More and more, I’m beginning to understand that most people cannot tell the difference.

I’ve been writing about CIL for ten years.  I wrote a lot about what I was going through with Louie back when he was still alive and these problems were ongoing, at a blog called “Save Louie,” and you can read about my experiences here.  The posts on that blog will give you a blow-by-blow account of what it was like ten years ago to try to save a dog with this disease.

After I stopped writing there, I started this blog, and continued writing articles to share with people what I had learned.  Back then, this was a frontier that had not been traveled successfully very often, and there was nothing online about it except a few articles that referenced some very outdated research.  I was working in a medical research department for a big university, which gave me access to scholarly journal articles in veterinary medicine (and human medicine, too).  I did a lot of research and was determined that other people with dogs that had this diagnosis would not need to go through the processes I had gone through to gather information, so I wrote articles about dietary needs, how to cook for them, how to care for them, what to watch for, when to not get discouraged.

I started a couple of online forums to try to create community so that we could share our experiences.  Then Facebook came along and made forums obsolete, because no one wanted to learn how to use a forum.  So Facebook it became.

Somewhere along the line, the lines between information and misinformation became blurred, and the misinformation on Facebook went from a trickle to a flood.  I began to notice more and more people coming to the Facebook group who demonstrated little to no willingness to learn about this disease, its treatments, its relationship to other related diseases, despite being encouraged to read everything on this blog.  Then I noticed a more recent trend to start labeling everything “PLE” and to start assuming that treatments that work for CIL will work for any protein losing enteropathy.

I honestly do not know where this has come from, but it has become difficult for me to keep up with the misinformation and the potential harm it can do.  When I see anyone whose dog is sick, I only want that person to understand better how their dog can be helped.  And when I see people coming to the Facebook group whose dogs do not have CIL being advised about treatments for CIL, it seems to me to be a big problem, and one with potential to do harm.  So I attempt to address these things by writing additional articles, and by advising everyone to read the articles in order to become better informed.

Some have done this, but many will not.  And to that, I say, that’s too bad.  Because I do not have the time to handhold everyone through developing an understanding of this disease so that they can help their own dogs or lead them through the flood of misinformation to a better understanding. What I’ve always tried to do is to provide information by writing articles with the idea that, if I wrote articles, people would be interested, read them and then make better decisions.

There are elements out there that seek to confuse you, because they have not done the research or lived the reality and are more concerned that their feelings were hurt because I or someone I know told them they were going to have a problem with trendy diets or something else they didn’t want to hear.  Let’s take raw feeding as an example.  I’m not anti-raw by any stretch, but raw diets are problematic for CIL dogs because you cannot eliminate enough fats from an uncooked diet, and because raw foods contain pathogens that these dogs, with compromised immune systems, may not be able to fend off. However, when I speak up about this, there’s always an outcry from people who are slavishly attached to raw feeding and view any attempt at reasoning through this as an attack on their preferred feeding method.

So sometimes people get offended and stomp off in the name of “freedom of speech” to start other groups where misinformation is welcomed.  And if someone wants to find their own corner of the internet and start a group where members are free to suggest you feed a raw diet to dogs with CIL, I can’t combat that.  I do know that dogs will die because of it, but at least they aren’t dying because of my group.

If someone wants to stomp off and start a group that throws all the forms of PLE together and suggests they are all to be treated the same, I can’t stop that, either.  Those people are free to make up anything they want, based on no research at all, and there are people who will gladly go with them.  And, as long as this group is open, I also can’t stop those people from coming back to this group and spreading the misinformation they’ve “learned” to our membership here.

I believe this is what has been happening in this group. The only cure for any of that is for you to get educated so that you will recognize fact from fiction.  I’ve always tried to keep those kinds of misinformed opinions to a minimum on the Facebook group, but  I really don’t have the time to police them anymore, nor do I have the energy or time to deal with the fights that they provoke, and I am not responsible for the health of your dog.  You are.  And if I can’t convince people to even read the information they need to understand what’s helpful and what’s harmful anymore, it’s time to let go.

Someone said to me recently that people just come here and ask questions because they are frightened and confused and just want answers.  Well, yes, that’s reasonable. And the answers they need are generally contained in the articles I have written, but you have to read them.  And I’ll admit that it’s hard to even know it’s there because there are too many voices shouting over each other on Facebook and not enough dedication within the membership to just putting the information in people’s hands.  I can count on one hand the number of times I’ve seen any good article reposted on the group, whether written by me or by anyone else.

So my conclusion is this:  Facebook is a terrible platform for support.  The better way to support this community is to just leave this information here on this blog so that people who need it can search for it and find it.  And that’s what I’ll do.

This is likely to be my last post here, unless something new occurs that inspires me to think about CIL again.  Louie’s been gone for six years now and my struggle with CIL is a fading memory.  This blog and connecting with the CIL community have been two parts of a rewarding  journey, but I have an active and busy life and I am ready to move on.  Louie’s legacy has been active for ten years and hopefully there will be a few who will stumble upon these pages and find them helpful in the future.  And if I ever read about a cure or a great new treatment for CIL, I will be sure to write about it here.  But I am no longer interested in maintaining a community under the mounting pressures of misinformation that is so prevalent on today’s internet.

To all whose paths I have meaningfully crossed here over this past decade, I thank you.  I hope someone else will take up this cause and carry it into the future.  And I hope it is someone with the knowledge to do it the way it needs to be done, and the fortitude to weather the tides.

Louie and I wish you all the very best.

 

 

PLE, CIL and the Diagnostic Process

The terms we use to describe this disease can be very confusing.  I want to try to use this post to clarify the terms PLE and CIL, and help you understand why your vet might have used both of these terms in making a diagnosis.

When your vet is doing the initial workups to try to figure out what’s going on with your dog, she usually will do some bloodwork.  When the bloodwork is run they’ll notice that the protein levels are low.  At this point, and depending on how low it is by this point, they’ll probably start suspecting a protein-losing disease of some sort.

Protein can be lost through the kidneys or the intestine and the blood test doesn’t tell them which, so now they need to narrow that down.  They’ll run more tests and/or make preliminary diagnoses based on other symptoms.  Once they determine that the protein is being lost through the intestines, they’ll make a diagnosis of PLE, which literally stands for “protein-losing enteropathy.”  What that diagnosis and phrase means is “protein loss from the intestine.”  Now we know where the protein is being lost from; we know what part of the body is diseased.  But it’s not the whole story.

At this point, they still have to figure out which *form* of PLE it is in order to know how to treat it, because there are several different ways the intestines can lose protein, and the different ways have different treatments. That’s when they start looking at the intestines via ultrasound to see what kind of masses or abnormalities are in there and, after this, they’ll perhaps suggest you do an endoscopy with biopsy to determine if the lymphatic cells are diseased or if other problems are present.  At this point they are looking to see if your dog has lymphoma, CIL, IBD or some other protein-losing disease.

Once this round of testing is complete they will refine the diagnosis to CIL and/or or some other intestinal disease.  And here is, I think, where it gets confusing.  You get the diagnosis of PLE first, and then when they narrow it down you get a more refined diagnosis of CIL (and maybe also IBD) that basically tells you what kind of PLE it is.  It’s this second diagnosis that tells your vet what your treatment options are.

Ultimately we end up with two diagnoses that describe the same disease.  You can more easily understand this if you think about having a diagnosis of cancer.  Your doctor might say, “you have cancer” but she might need to do more testing to determine where, in the body, the cancer resides, or exactly what form it takes.  So you have an initial diagnosis of “cancer,” but a later, more refined diagnosis of “non-Hodgkins lymphoma.”  The relationship between the terms PLE and CIL is very much the same.

I hope this clears up some of the confusion around these terms.

 

 

Symptoms: Disease or Meds?

Thought I’d take a few minutes to talk about a confusing issue surrounding symptoms.  Many of our CIL dogs are prescribed prednisone, a powerful steroid, which is notorious for a host of side effects.  Among the side effects that it can cause are abdominal distention (bloating) and hind-end weakness.

It’s a matter of some frustration that the disease of CIL itself can frequently cause similar symptoms.  When protein levels are low, fluid can accumulate in the abdomen or in other areas of the body, causing a bloated appearance.  Sustained low protein levels also lead to muscle wasting, since the body will compensate by leaching protein from muscle tissue.  This causes weakness, which can also look like a prednisone side effect.

So, what do we blame when we see these symptoms?  The answer is always in the protein levels.  These are very common disease symptoms, so a flare up is the more likely issue unless you know from recent testing that your dog’s protein is normal.

If your dog is showing either of these symptoms (bloating or muscle weakness), you need to have the protein levels checked as soon as possible.  Do not assume it’s a side effect of the medications, because cutting back on the meds at this point might be the exact opposite of what’s needed (and cutting back on prednisone without veterinary supervision can be life threatening).

Let your vet do the testing and advise you on what to do, and understand that if the protein is low it might involve increasing those steroids for a while.

Nobody likes the side effects of prednisone, but sometimes the choice is between that and a sick or dying dog.  Some dogs remain on it for life.  Under veterinary supervision, your dog’s dose of prednisone can eventually be tapered down to the lowest effective dose, reducing the side effects but maintaining enough therapeutic effect to keep the disease in remission for as long as possible.