There is at least one member here who has used it with success, but I know from reading Dr. Valentine's forum not many have had any success with it beyond providing the horse with a vigilant exercise program. My vet agrees there is not much evidence that this should work and those who rave about it in fact never biopsied for EPSM in the first place so perhaps their initial symptoms came from a different cause. Two other vets I asked just made a face when I mentioned Dr. Kellon, FWIW...
Would love to find an easy cure! For now, we manage with oil...
candico how long was it before you noticed a difference when feeding the oil. We have been giving the horse 2 1/2 cups of oil for one month. Though the trot seems better the canter is not forward, almost four beat. We have not had a muscle biopsy just going by symptoms.
I very successfully manage a mare with suspected muscle myopathy with amino acids, including ALCAR. To candico's point, I have not done a muscle biopsy on the mare but she had enough symptoms pointing to myopathy that my vet was on-board with trying ALCAR. When we saw the dramatic improvement, noticeable in about 3 days, my vet decided to forego the biopsy as he did not want her to have the down time for recovery. Regardless, I have found Dr. Kellon to be very generous with both her time and knowledge. There is actually a EPSM group on Yahoo and if you join, you will find many owners willing to share their journey. You'll also find some links to articles supporting why the amino acids can be beneficial. Some horses with positive biopsies are doing well on ALCAR, some do better on oil, some do better on oil + L-Carnitine. While EPSM is rare in TBs, those who are positive with TB up close in the pedigree do seem to require some oil. My mare is an imported Hanoverian with no TB in the first 3 generations. Regardless of breed, Vit E & selenium seem to be important for these horses.
When I first suspected PSSM, I did try oil briefly and my mare did respond positively. However, when I researched further to understand why, I made the decision that amino acids were the best/safest alternative for us long term. High fat works by creating an insulin resistant condition in the cell, effectively blocking glycogen uptake. I did not want to further manipulate an already compromised metabolism. There seems to be a risk of IR with long term high fat diets. Too, horses on high fat typically crash several months into the diet change. The assumption is that they experience glycogen depletion.
For us, amino acids and a low starch diet are producing tremendous results. 18 months into the diet change, my mare feels like a normal horse. She was the nonFEI AA high point at our last 2 recognized shows and this is in very competitive S. CA. Her bloodwork is improved (muscle enzymes) and her symptoms are gone - no more muscle tremors & spasms, no more shivers and no more issues with picking up her hindfeet.
My vet reports that he is seeing more and more occurrences, especially in mares. I think there is probably much, much more that we do not yet know about the disorder. As is typical in the horseworld with a million different opinions, when Dr. Valentine is mentioned to the local vets here, eyes are rolled, FWIW...
Even with the oil I find that it takes much more patience and time to develop a good canter. They do seem to suck back and get crabby much more easily than your normal horse and any change in rider balance or driving seat, etc is rarely tolerated. I do find very frequent transitions help as in get a few strides of canter, then back to a good working trot where they are having to work hard... The canter gets to be the easier gait, if you know what I mean. Also cantering behind another horse can help motivate.
The oil just seems to stop the worst symptoms, tying up, parking out, poor topline, and the monster biting my butt attacks... Warm ups still are slowish though the go switch engages sooner.
Hope that helps. I am waiting for my BOT sheet to see how much that helps and will report back.
My mare used to park out in the cross-ties, do lots of stretching & groaning, stomp at flies that weren't there, her topline deterioriated, she became very goose rumped & appeared tucked up behind and her shoulder & hindquarter muscles felt like very coarse ropes in addition to the other symptoms like shivers & muscle tremors that I previously mentioned. Her canter, one of her special paces, deteriorated, too. She would slam on the brakes mid-work sometimes & looking back, I think she was on the verge of typing up in those instances. She was also a very, very heavy sweater. Since making the diet changes, all of these symptoms are gone & her '10' canter is back on both leads which feel very symmetrical. Her endurance and stamina are much improved as is her energy level. However, I am very diligent about her management. Unfortunately, we're in S. CA so no turnout which means that I get her out of the stall multipe times daily for working, equiciser, hand-walking, etc... I am careful with the warmup and make sure that she has plenty of time to walk before we begin our suppling exercises at the walk. She comes out so much more supple these days. At her worse, she felt like a wet dishrag and as though she were stuck in quick sand. I should also add that all x-rays & flexions are clean. Her lack of responsiveness under saddle just didn't fit with her tremendous personality, willingness, intelligence & desire to please, so I started researching & it led me to her symptoms pointing to PSSM.
For what it's worth, I do use a BOT sheet. Despite being in CA, the overnight temps in the barn valley sometimes dip into the 20s during the rainy season. Because she is bodyclipped, I toss a medium weight blanket over top of the BOT during that time of year. My vet wants her warm vs. cold - she seems to be sensitive to when temps drop into the 40s and below. I also have access to a Vitafloor at our barn and she goes on it for 30 minutes daily. Adding this into her program improved/shortened the warmup by at least 50%.
Removing the amino acids from her diet results in reappearance of symptoms as soon as 3 days so I'm not ever trying that again. For now, she is doing great and schooling a solid 4th level, displaying super talent for collection with a nice piaffe & beginnings of passage, understanding the school canter & doing beautiful, huge changes. All of her shoulder freedom came back and her hindquarters muscled up again & no longer appear tucked up. While I was worried 18 months ago, I am now confident that she will be a lovely FEI horse and probably GP.
My impression is that there are many nuances to this disorder and successful management includes slight adjustments for the horse's specific circumstances - I became quite the detective & admittedly, mad scientist throughout this experience.
Forgot to add that I use a BOT quarter sheet during the warm-up this time of year as well. I also have an Equilibrium massage pad and mit which she seems to enjoy now - that wasn't the case in the beginning.
I do think FEI1Day has an important point in being vigilant. In hindsight I knew one horse that was very likely EPSM showing back in the late 80's, early 90's. He would tie up on occasion and just not great with the hind end as well as very sluggish and stiff to start. They fed him tons of grain, molasses, etc., to try and spice him up. He actually was entered in a Grand Prix before he did in a suspensory... My point here is that even though how he was fed wasn't good for his condition, the vigilance of a strict exercise program did allow him to progress. My one vet says the ones in much harder work do better than those who are ridden more casually. I do know a Grand Prix jumper with it as well as event horses...
My two do have some thoroughbred close up and muscle biopsy showed moderately severe changes. My suspicion however is that it comes from a certain G-line ancestor as I have run into others with that line and symptoms of EPSM. Funny how that line is known for being hard workers - perhaps because it was good for them! My two are never going to be destined for the ring as the one cannot be vaccinated without trying to drop dead... And the other has seriously severe ADD, although now at age 10 he is finally getting more focused perhaps because the work is more interesting.
To the OP, once you get past the initial hump, things do come easier. I think if they have been sore for some time they associate certain things with pain and can indeed have residual muscle soreness - I did have very good success with Sarapin for chronically sore muscle areas.
And FEI1day, glad to hear the BOT stuff helps. I've been trying the t-shirt myself and haven't noticed any benefits yet, but have used the back pad for one of my other horses and can see his SI area doesn't seem as stiff after a cold night.
I'm suspicious of a certain H-line TRAK improvement sire. Some day, I'll take the time to put my suspicions to keyboard and post in the breeding forum; although I'm not sure anyone wants to discuss the possibility, sadly. Given the closed TRAK studbook, I'm very curious as to what some muscle biopsy results would reveal.
I do agree that the beginning is the worst - it's overwhelming, frustrating and feels like an impossible situation to overcome. Perseverance! I've known an Olympic level eventer and a few GP dressage horses, 1 being a local international star, who have overcome. Your vet's perspective regarding the success rate vs. work load makes sense given what we know so far about the disorder. I think eventually we'll find, that there are variations of the disorder and that is why no 2cases seem to present or respond to management exactly the same. My mare is very sensitive to vaccines, too. We are careful in the timing and also proactively give her anti-inflammatories and adjust the work schedule accordingly. I know that for the following 3-5 days after vaccinating, we'll be doing a lot of walking & suppling and I don't get after her too hard for not being perfect in the bits of trot & canter that we do those first days.
Unfortunately, with the mare her vaccination issues are beyond the usual stiffness. Best case she just gets photosensitive vasculitis, and at her worst the vet called back with blood results asking first if she was still alive... Started with a bad reaction to intranasal Strangles vaccine as a weanling which was unfortunately required where she was pasture boarded. From her worst illness she does have reduced lung capacity as well. Fun. Anyway, with her we started with Valbergs diet recommendation, but even though we were definitely progressing in training, her bloodwork still showed she was still having muscle issues. So then we switched to Valentine's protocol which normalized her bloodwork. Have seen one who never showed evidence through bloodwork and symptoms in fact looked more neuro... And on top of that he was a non-sweater, Friesian. Not mine, though.
I do wish we could have a more open conversation about the lines that carry it. The labs doing the muscle biopsy must have some decent stats by now. Maybe one day we can organize a thread here on just the number of horses affected belonging to COTH members.
Ps. Have heard rave reviews on the Vitafloor and my gelding did benefit from the Eurocizer although partly due to the apparent adrenaline rush he was getting as he was absolutely terrified of it!