Antibiotics

[Cint]

For those reasons alone I'm very skeptical of his claims.

:agree:

 

[Cint]

He has earned the title of doc but as a vet. I just feel that being so insistent about it on a human health site is misleading.


Your opinion. Mine is he was rude but maybe we should stop with the name calling or neither of us have a right to call anyone else rude.

:agree: And I wouldn't let a dog Dr. treat any of my human disorders, although animals have been used in research for humans.

 

[Cint]

I've been waiting for a scientifically "proven" solution to my epilepsy for 30 years. Forgive me for not wanting to wait another 30.

In the mean time we try things and see if they do or don't work for us. We report back here so that everyone can share the knowledge.

If you are ready to just settle for "a sickness you like", that's your decision. I'm looking for a cure. I'm not giving up hope and I am willing to experiment with the unproven.

I think we are ALL wanting and waiting for a "cure" for our seizures. I've been seeking and trying numerous methods that have come and gone for over 30 years, still nothing to "cure" my seizures.

I would hope that CWE would be about supporting each other in our various experiments. For example I recently tried taking melatonin for my nocturnal seizures and found out that, for me it actually makes it worse. Yes that is just one anecdotal story but when lots start piling up here, people approach something like melatonin with more caution.

Yes, we do approach those anecdotal stories with caution. What works for one, doesn't necessarily work for another, especially when it comes to such things as this. ^

Yes, Dr. Symes has a collection of anecdotes from his work but when they start piling up, shouldn't that be interesting rather than sneered at because he doesn't have the grant funding for a huge trial? And again, he is never pretending that his work is anything other than what it is. Gathered wisdom from years of cases.

So Mr. Symes' work is just gathered wisdom without research?

In my working life I was a university professor. I know what constitutes good research and what is junk science. For every discovery that has made it through to the peer reviewed double blind placebo controlled level of truth , there are many others that aren't there yet. That doesn't mean they are junk, just that they aren't there yet.

I'm not going to sit on my hands waiting for a level of proof that satisfies you.

You never even bothered to say that you were glad the changes in my diet made on Dr. Symes' recommendations are working for me. Isn't that supposed to be what this forum is about?

I go to a University Hospital and am being treated for my E by a professor. On several occasions she has put me on a trial drug, so didn't know if it was a placebo or the real med. I've also made changes in my diet because I am also diabetic. None of that has "cured" my epilepsy. Nor has the surgery or the VNS. But I am still looking and hoping for something to stop my seizures. And I agree with Eric. I think all he is saying is be careful and take "with a grain of salt" what others say will "cure" you. One has to tread very lightly when it comes to epilepsy. It is a very mysterious illness.

 

[epileric]

I've been waiting for a scientifically "proven" solution to my epilepsy for 30 years. Forgive me for not wanting to wait another 30.

In the mean time we try things and see if they do or don't work for us. We report back here so that everyone can share the knowledge.

If you are ready to just settle for "a sickness you like", that's your decision. I'm looking for a cure. I'm not giving up hope and I am willing to experiment with the unproven.

I’ve been waiting over 50 years & have tried a lot of things. I’ve gotten tired of unsubstantiated claims so I tend to go with what’s been properly studied and feel that for the sake of accuracy it should be pointed out when claims are unsubstantiated. This doesn’t mean you can’t do what you (or anybody) wants.

I would hope that CWE would be about supporting each other in our various experiments. For example I recently tried taking melatonin for my nocturnal seizures and found out that, for me it actually makes it worse. Yes that is just one anecdotal story but when lots start piling up here, people approach something like melatonin with more caution.

Yes, Dr. Symes has a collection of anecdotes from his work but when they start piling up, shouldn't that be interesting rather than sneered at because he doesn't have the grant funding for a huge trial? And again, he is never pretending that his work is anything other than what it is. Gathered wisdom from years of cases. [/QUOTE]
Actually even when stories pile up we should be cautious. So many times large groups of people have been fooled by placebo effect. How long was it before someone actually realized that snake oil has no health benefits? There were tons of people who claimed snake oil cured them when it was nothing more than regression to the mean (they were going to get better anyway) or placebo effect.
That said, I do agree with you about the melatonin. I’ve tried it with the same result as have others.

All trials start off small so he’d need minimal money. The problem is that a lot of his claims contradict what has already been proven so I’m sure no study of his would be accepted. Also, all research is based on previous research & I’ve seen his claims but he never cites his claims. I can only assume they are his assumptions. My personal belief is that a study would disprove his claims and that’s why it’s not in his interest to do one but I could be wrong.

In my working life I was a university professor. I know what constitutes good research and what is junk science. For every discovery that has made it through to the peer reviewed double blind placebo controlled level of truth , there are many others that aren't there yet. That doesn't mean they are junk, just that they aren't there yet.

I am surprised that you’d learn what good Science research is as an English professor though if that’s true then you would understand how I might be reluctant to accept such unpublished anecdote as “research” especially when many of his claims have been disproven.

Some things might still be valid before reaching the double-blind study but I don't even see Dr. Symes basing his claims on proven data, let alone proving his claims.

I'm not going to sit on my hands waiting for a level of proof that satisfies you.

You never even bothered to say that you were glad the changes in my diet made on Dr. Symes' recommendations are working for me. Isn't that supposed to be what this forum is about?

I’m always glad when someone does better with their seizures, be it from their treatment, diet, placebo or any reason. This is a place where we should support each other and not call each other names, especially for things said over a year ago. I see nothing wrong with discussing treatments we’ve tried. I do try to keep the topic on the treatment and whether it works. I do however see someones training as very relevant to the treatment(s) they are suggesting. Please do the same rather than making me the topic of your posts.

If you are ready to just settle for "a sickness you like", that's your decision

You never even bothered to say that you were glad

calling you rude

 

[AlohaBird]

You two can dog on Dr. Symes all you want (pun intended). He is changing the lives of thousands of people and animals.

If you don't want to get the benefits of that, that's your choice.

Epileric, one has to write a dissertation to become a professor. That is a large scale research paper. And you have to take several classes about statistical analysis.

Dr. Symes does not pretend that his information is anything other than what it is. It is the research he has done (the same that we all can do which is why he tells people to look things up) plus the experiences he has gained in his practice over many decades.

You just can't resist one more little jab at me personally. And one more time of calling him Mr. Symes or putting the "Dr." in scare quotes.

After all, it's not like he is doing anything really scary to his patients like filling them up with all kinds of synthetic drugs that may interact or have long term side effects. That would be the neurologists.
Dr. Symes is just following in the footsteps of Hippocrates in saying let food be thy medicine. He is removing what are evolutionarily inappropriate food sources such as gluten grains, soy, corn, and cow dairy products.

That's not so radical or far fetched of an idea. After all, nobody ever died from a nutrient deficiency by eating more meat and veggies and less white bread.

And it works.

It seems to me that you both got stuck on the fact that he is a DVM and not an MD and stopped even considering his work at that point.
That's rather narrow minded, IMO.

 

[Cint]

You two can dog on Dr. Symes all you want (pun intended). He is changing the lives of thousands of people and animals.

If you don't want to get the benefits of that, that's your choice.

:agree:

After all, it's not like he is doing anything really scary to his patients like filling them up with all kinds of synthetic drugs that may interact or have long term side effects. That would be the neurologists.
Dr. Symes is just following in the footsteps of Hippocrates in saying let food be thy medicine. He is removing what are evolutionarily inappropriate food sources such as gluten grains, soy, corn, and cow dairy products.

That's not so radical or far fetched of an idea. After all, nobody ever died from a nutrient deficiency by eating more meat and veggies and less white bread.

Hippocrates oath is; "First DO NO Harm." And yes, some of the drugs the neuro and others prescribed DO harm, but then, so do some of the so-called good and "natural" foods. Plus with folks like me who also suffer from Type 1 Diabetes as well, we do have to watch out for things like anemia, and low Hemoglobin, not from drugs for E, but because of the Diabetes. If my A1C level is way down, I could end up in the hospital. And that could really be disastrous for me. It isn't as simple as you like to make it sound! Even low blood sugar can cause seizures. So I need an epileptologist and an endocrinologist to sort it all out.

It seems to me that you both got stuck on the fact that he is a DVM and not an MD and stopped even considering his work at that point.
That's rather narrow minded, IMO.

:agree: He is not a M.D. If I owned a seizure-alert dog, then I would maybe listen to Dr. Symes. That is factual, not narrow-minded. I need to stay safe and out of the hospital.

 

[lindsayschu2]

I have no clue about this doctor and as such will stay out of this debate. But Folate is instrumental in serotonin synthesis. From Herb, Nutrient, and Drug Interactions: Clinical Implications and Therapeutic Strategies, "Folate is involved in the synthesis of glutamic acid, norepinephrine, and serotonin and the detoxification of homocysteine to methionine."

 

[Keith]

I really like this recent 2014 study about how bifidobacteria in the probiotic VSL#3 raised vitamin B12 and folate levels while decreasing homocysteine in humans:
http://www.clinicalnutritionjournal.com/article/S0261-5614(14)00251-9/fulltext

There are a few other studies where VSL#3 was shown to improve insulin resistance.

How this relates to seizure threshold is pretty complex regarding serotonin levels. Consider the fact that 95% of the body's serotonin is in the gut, not the brain. When constipated, serotonin levels in blood are low, and I believe this correlates with seizure activity. High serotonin takes place in diarrhea, also associated with seizure activity. The trick is to stabilize serotonin by stabilizing the gut dependent on microbial balance in my view. Microbial imbalances may also lead to CO2 imbalances where CO2 sensors in the brain stem stimulate the serotonergic system in the brain which activates thalamocortical networks and glutamate receptors. Such is the gut-brain connection!!!

Cerebral folate deficiency (CFD) is associated with epilepsy. But there's controversy about simply supplementing folic acid; I'd have to learn more about it. I think Nakamova would be interested in that subject matter.

Another very cool association with bifidobacteria, perhaps especially B. longum, is BDNF levels where these bacteria were found to raise BDNF to protect from dementia. Decreased BDNF is also associated with epilepsy.
http://www.ncbi.nlm.nih.gov/pubmed/20600016/
http://www.neurology.org/content/75/14/1285

I know a few people trying the probiotic approach to epilepsy with good results so far. One of them is also using the prebiotic, Bimuno, which is GOS to specifically feed bifidobacteria. Here's another new paper showing how this prebiotic stabilized cortisol levels which control blood sugar where I believe hypoglycemia is a major cause of seizure and mental health problems:
http://link.springer.com/article/10.1007/s00213-014-3810-0

If anyone is considering trying this approach, I'd recommend purchasing the products directly from the manufacturers (the probiotic must be kept refrigerated) and beginning with very small doses to avoid bad reaction:
http://www.vsl3.com/ (I've heard the capsules are the best deal)
http://www.bimuno.com/ (original formula might be best)

 

[AlohaBird]

Actually Dr. Symes diet plan is almost indistinguishable from paleo. And paleo is, in my experience a great way to address diabetes while keeping blood sugar levels on an even keel.

When I took over feeding my dad in his later years, he had diabetes, scary high blood pressure, and was on several meds. Within a month on strict paleo the meds became unnecessary (even according to the doctor) and he had the blood pressure of a healthy young athlete and absolutely no sign of diabetes. He was in his 80s.

The doctors were flabbergasted. It works.

Yes, I know that's only an anecdote but it's my anecdote.
And yes, I do have a seizure alert dog who is my dearest friend. I just paid a couple grand to get his teeth fixed. And I know his vet is often more on the ball than my GP. A couple of months ago I was having trouble with swollen lymph nodes. My MD ran all the tests he could think of and got nowhere. (I was doing a moderate amount of freaking out since the nodes were right near my mastectomy site) Then the vet discovered that the dog also had swollen tender lymph nodes. He figured out that we both had a case of Bartonella (aka cat scratch fever) from having adopted a feral kitten with fleas. The human MD totally missed it.

So, yes, I do have a lot of respect for vets and the work they do. That vet cured both my problem and my dog's. I can see how Dr. Symes' work would lead him into those kinds of situations.

How could you watch your beloved pet having seizures and then, with the removal of certain food item the seizures just stop, and not have the thought, "I wonder if that would work on humans too".

He advocates removing gluten grains, corn, soy, and cow dairy from the diet along with all artificial flavorings such as MSG and Aspartame and concentrating on the more nutrient dense clean sources of produce and protein. Are you really going to tell me that this plan is somehow dangerous? No diet soda and cake. Heavens, we would have to be medically supervised for that.

 

[Keith]

My view of the mechanism for how Paleo and the GARD diets work is via flora shift. The simple act of reducing carbs shifts flora. The same may be true of the ketogenic diet, yet to my knowledge there are no studies about how the ketogenic diet shifts gut flora.

 

[AlohaBird]

One way that gut flora is altered by a ketogenic diet is that it is a much lower residue diet. The gut biome that thrives on insoluble fiber is out of luck. No more All Bran. (blech)

 

[lindsayschu2]

Supplementing with folate is tricky with anything but low to 'normal' doses, particularly for people with epilepsy. While meds tend to deplete folate, folate can also reduce the effectiveness of some meds. Also, supplementing high doses of folate can be dangerous if someone has an unknown B12 deficiency and they aren't also addressing the B12 deficiency at the same time (it can make B12 related anemia problems worse). That's one best to check with a doctor on in terms of dose IMO. I take it in a B complex but not on its own. I know others have taken fairly high doses and done very well. "Individual results may vary"