I can’t comment re: Pathogenes–I used compounded Diclazuril–but I can comment on the Immubiome. I saw no difference, and had a hell of a time getting my horse to eat it. Finally gave up about 3/4 through the container because it was a daily battle to get him to finish even with it slathered in molasses, peppermint syrup, mixed in two POUNDS of chopped alfalfa and molasses, etc. He just straight up stopped eating any sort of grain with even a quarter of the dose in it. I saw no improvement and decided the sheer quantity of sugar needed to get him to eat it couldn’t be good for him, either.
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Lol I also ended up throwing out a full container when I started my EPM journey. Horse is one of the least picky eaters I have ever had and I could not for the life of me get him to eat it. At the end of the day I have a hard time believing any unproven supplement will be a miracle cure anyway. Just keep loading them up on vitamin E.
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I have a friend whose mare is on daily levamisole for polyneuritis after having the most success with dec/lev for EPM. Her mare had been on the levamisole it for quite some time now, months, and anytime she tapers back, symptoms come right back.
There is a Facebook group I’m in with a vet that is not Dr Ellison…maybe they are colleagues or something. But has a lot of experience with EPM, and he pushes Dec/lev as basically the only treatment worth doing. A lot of people seem to have success but when I was deciding on treatment, the reason I started with Marquis was because it had testing done and had the best safety profile.
I feel like Protazil is very effective. My vet recommends doing a round once a year.
But honestly I put them all on Vitamin E regardless of if I’ve tested them, even if it’s just like 500 IUD.
I did the dec/lev for twice the recommended time which seemed to help the most. My mare also had polyneuritis in addition to her EPM. What’s seemed to help the most was treating her for Lyme and Anaplasmosis this spring along with adding a liquid vitamin E supplement.
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Do you remember what you treated her with for the Lyme and Anaplasnosis? So glad to hear she’s doing well!
9 days of iv doxycycline I believe. The protocol called for 7-10 but her catheter and her patience wore out at day 9.
I’m not super familiar with polyneuritis, but it looks like treatment is usually steroids. Given that steroids suppress the immune system, maybe they’re using the immune suppressive effects of long term levamisole to accomplish the same thing? But that doesn’t mean it’s safe or a good idea to use long term in every horse.
Yeah, there are certainly all sorts of places online where vets or doctors practice and tout medicine that is not evidence based. It’s always so tough to sift through because those groups either tend to be self selective toward supporters, or outright block/ban those that have a different viewpoint. All the groups believing ivermectin is the one true answer to covid come to mind.
There are a few things that stand out for me about the whole EPM drug thing:
The newer drugs that we do have data on–Marquis and Protazil–required blinded review of rechecks after treatment, and those blinded reviewers reported less improvement than the non blinded reviewers. Isn’t that amazing, how easily bias could impact the non blinded reviewers? These are vets that have specific training in neuro exams, presumably trying their best to be impartial, and they still thought the treated horses improved more than the blinded reviewers.
If blinding impacts the report of results so much, how on earth can we expect generalist vets who may or may not have specific expertise or interest in neuro exams to be unbiased, and even moreso if we’re expecting owners to report back on outcomes??
We just have no idea how decoquinate/levamisole compares to those trials, because it’s never been measured by the same yardstick. Dose and duration is apparently all over the map, and we really don’t even know what long term adverse effects might exist.
I think it’s … curious … that no vet grad student has run a well designed study to investigate. Ellison and this treatment option seems to be pretty much ignored by the main stream EPM literature, although that hasn’t always been the case.
Ellison has also published (most/all?) her work in a single journal. I’m not savvy enough to understand if it’s a pay for play journal, or if it’s really peer reviewed…but it’s certainly not where the other EPM work gets published, and that just raises more questions (esp along side the FDA letter that calls her entire study designs and conclusions not adequate.) That journal also isn’t picked up by pubmed, which…not all are…but just adds to the hmmmmmm level, ykwim?
To be clear, I am not saying that decoquinate/levamisole doesn’t work. I obviously don’t know. But we have just no data on it…on how well it works, or what dose should be used, or for how long, or what the risks are, or how it compares to our other treatments. It’s all just flying so blind, relying on anecdote that has such a heady risk of being very influenced by just a huge amount of confirmation bias.
I also think a lot about how my mare was knuckling over and clearly neurologic, but improved over 2-3 days entirely on her own (while we were waiting for the vet–she did get testing & treatment.) It freaks me out that if I’d skipped picking out her feet for a couple days, I very likely would not have seen anything wrong. And it makes me wonder, at least a little, if there’s an ebb and flow to symptoms, and if that might make identifying treatment “success” a little harder.
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I don’t disagree with anything you’ve shared! If it weren’t for my friend being between a rock and a hard place (basically put the horse down or try those meds) I wouldn’t have thought twice about cruising right past that group. Anything to me that’s THIS IS THE ONLY WAY is highly suspicious, and that is how that group in particular comes off. Having stuck around, it does seem a lot of horses do have pretty good success with that combo, but I’d feel a lot better making that decision to try it if it had thorough research backing it up. Why no one is doing to research is beyond me 
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Yes, totally! I just wish there was more data. Like goddamn, EPM is such a bitch, and this is a possible tool, can’t we at least actually study it so we can all make educated decisions on when and how to use it?? Why is that not happening?
And no shade to your friend, it’s fab she found something that worked for her horse. It’s not what I would try first either but after no success with other therapies? Sure, throw it at the wall and see if it sticks. When you’ve run through the more known entities, take that shot in the dark.
Ugh, one day we’ll know more. Hopefully!
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Completely agree. I don’t know how many months they did of both Marquis and Rebalance but they did several rounds of each and it wasn’t until they did the Dec/lev did they finally start seeing improvements.
If I knew what I know know, I would have pursued a different career path 
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This sounds spot on to my guy, waiting on radiologist report for the neck x rays we got. Any other notable symptoms your guy had? Was he aggressive or guarded over his neck area? I am trying to decide if it’s worth it to haul him to a clinic for more imaging or just retire. How is yours doing in retirement?
Thankfully he was/is never aggressive or guarded. That said, when he was in work, he would occasionally and randomly let out a buck or two and then scoot away. Trainer and I wrote it off to spookiness but in hindsight we have wondered if they happened because of a twinge or pressure on the nerves or spinal compression moment. At first I was reluctant to spend the $ on the myelogram, as I wasnt going to do any surgery. But then I wanted to really know what all was going on.
Even after the retirement decision was made, I discussed cervical injections with the vet but they felt there was too much going on to figure out where would be the “right” location or two to make him comfortable. So after discussion with my local vet, we decided to put him on prednisone permanently. It helps inflammation everywhere. First on pretty high dose, then gradually reduced. Though there are some risks to this medication, no problem so far; its been about 15 months. Some days he will get silly in turnout and then will be subdued/tired the next day. About 2 months ago he was showing some additional signs of discomfort so we upped the dose to fix that. He still displays some mild neuro symptoms. If they worsen in spite of meds, I will likely put him down.
In your case I would first see what you hear from radiologist. If its just a problem in a small area, i would definitely consider injections. Had an older (22) TB who developed arthritic changes C5-C7. Injections worked for him, lasted over a year and he was quite rideable. But many people say 2nd effort wont work as well or as long; I never did round 2. If things are more complex, it really depends on your budget, as the next option is likely the MRI/Myelogram and they are pricey, around $5k. They are required if you want to consider the basket surgery, which is VERY pricey and a lot of afterwork/rehab. All this also depends on what his job is/was and his age etc. My current guy is only 12 or 13, I forget, lol. If he had been 18 or 19, I would have just retired him without the added costs. These decisions never seem to be simple and honestly I feel for you have to deal with this. Its hard.
I am blessed with a 23 yr old Lusitano that I’ve owned for 11 years. The only time he’s ever taken a bad step was several years ago when he was brewing an abcess. And he is still playing with upper level dressage work. I need to ride, lol.
I can definitely see why you felt reluctant with the myelogram but also wanting to know all that was going on! So great that you found a treatment method that helps him enough to retire comfortably.
Its a lot of wait and see, its so hard. There will be a lot to think about. I don’t think I would have the chops to go the MRI/Myelogram route but like I said it is so tempting to just know as much as possible. Thank you for the kind words. I am so lucky I had a lifetime with my quarter pony who hardly had any issues. Never found that luck again unfortunately!
Yes, OP, and anyone else with a problem like this, pm me and I will help you. I had a horse with EPM diagnosed at UC Davis via spinal tap at age 5. He passed away at age 26. I have tried everything I could for him, he was rideable, happy and sound for many years but his care was a labor of love.
In short: Talk to Dr. Ellison at Pathogens. Even if your horse does not have EPM anymore, your horse may have a myelin degenerative disease. Mine did and he stayed on her drugs for many many years because he did better on them.
I also created an immune stabilizing herb blend for him through trial and error. Happy to send you some if you are interested.
Green grass or natural vitamin e remain key. At least 2500 IU a day but I kept mine at 5,000 IU because that is what helped him.
If you can get your hay and pasture tested and balance your vitamins and minerals to it, it makes a big difference.
Linda Tellington Jones groundwork and peripheral wrapping help a lot.
Be aware that your horse may be immune compromised. Things like vaccines and wormers may need to be spaced out and chosen carefully.
The very best horse, I wish he were still around, every day with him was a gift.
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Ugh, going through this right now. My horse has likely had epm for 5 years. My vet kept approaching his issue (twisting right hind) as a mechanical lameness. Many exams and injections and diagnostics later, she suggested retirement. I knew something else was going on, and felt like my vet was writing off all the other symptoms that were developing over time (dragging toes, difficulty going down hill, crossing hind leg on a circle, very touchy sensitive, like I could barely groom him and he had never been like that, depressed looking, ulcery behavior, chronic rainrot) I asked for bloodwork and an epm test before retiring and he came back 1:4000. I did not do the spinal tap, since he had so many symptoms. So I am in my 2nd month of Protazil and vitamin E and the twist has almost completely gone away along with his mood being better, toe dragging better, and sensitivity to grooming, but he still is not comfortable when I get on his back. I think he has nerve damage and now I am wondering if that will ever go away. Has anyone dealt something similar? I don’t know what to do next. I have spoken with new Bolton and am debating an appointment, but don’t want to spend money if there will not be a solution. I have wondered about the Dec/lev treatment to see if it helped, but one thing about that Facebook group is I had posted on there initially asking if the twisting movement looked neurologic, and after I had seen improvement on Protazil, I tried to share a comment and video and it never posted, so I tried again a few days later and it did not post again. That led me to believe they delete comments of success with other meds. Who is that helping?? That made me more reticent to try the Dec/lev. My vet is not a fan since it is not FDA approved. Does anyone have thoughts on how to help improve the nerve damage my guy seems to be experiencing? I have him on Vitamin E and Immunebiome Spine and Nerve. And he is getting acupuncture. I have no idea if the supplement is doing anything. I have thought about trying the equiband stuff. One other question what immune boosting drugs have people used. I asked my vet about just the levamisole and she suggested EqStim instead. Neither are confirmed to work and it looks like the EqStim shot is only effective for a week. That seems like an expensive route. Any thoughts are appreciated.
EPM recovery takes a long time. I hand walked over poles for the first 2-3 months of treatment and then tack walked with lots of poles/hills/hacking for a couple more months after that.
It’s terrific that you’re already seeing improvement but it’s still early. As you mentioned, even once the active infection is under control (which often seems to take longer than a couple months itself), you’ve still got lingering nerve damage that will take even longer to heal. Nerves do repair, but it takes a long time. Vitamin E is proven to help but other than that it’s just time!
If you’re seeing improvement on Protazil I would keep him on that rather than changing to dec/lev. My vet sometimes uses a short dec/lev course at the end of a full Protazil treatment to clear out any stragglers that may have been resistant to the Protazil, but different vets definitely have different opinions.
Thanks so much for your reply. Yes, we do lots of long-lining, including over poles and little x’s, hand walking around the farm and thank god for the nice weather, we have started walking the fields and hills. Fortunately, he was never really ataxic. It is so hard when everyone keeps asking, “are you going to ride him today?”
Have you tested him for Lyme, anaplasmosis and any other tick born diseases? My epm mare initially improved on the dec/lavamisol although we had to treat a couple times and for twice as long the second time. She was also diagnosed with polyneuritis. About a year after her epm treatments we tested her for Lyme etc kind of on a whim since we thought her hyper sensitivity to touch was either behavioral or residual superficial nerve sensitivity from her epm. Turns out she had both Lyme and Anaplasmosis. 10 days of antibiotics and almost all of the hypersensitivity to touch was gone.
If that’s all negative and the vet thinks the prontasil has done all that it could, I would ask of you could try the dec/lavamisol before retiring.
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He started balking to being ridden 2years ago. We tested for Lyme then and again the following year. We actually pulled and held blood to test again depending on how the epm test came back. I may go ahead and have her run that. He has actually never tested positive for Lyme, but he did have Ansplasmosis once. It turned around very quickly with antibiotics.
