Tired of Miracle Cures

[KevinM]

This has been said here many times, but the number of people on social media claiming (fill in the blank) treatment reversed their symptoms is just too much. I saw a post on a Facebook page devoted to ALS from a fellow shouting to the rooftops that he is the next Bedlack reversal because he has healed his ALS through intermittent fasting. He linked a research article showing that in mice fasting improved neuron health. Good for the mice.

When several posters pushed back a bit, he basically said they were too far advanced for it to do any good. When someone asked if Bedlack supported this as a therapy, he said he doubted it. I have no idea if he has actually spoken with Dr. Bedlack, but I very much doubt it.

I imagine that number of pALS that read this post will try it, and I don’t doubt that many already have. I get the desperation but damn I get tired of all the BS.

 

[wishmobbing]

Oh, I hear you loud and clear! The amount of health non-sense out there is disturbing. It's relatively harmless when healthy individuals entertain themselves with the lastest diet or supplement, it can get dangerous or offending when claims of miraculous effects are peddled.

 

[Nikki J]

I agree.

even the people who genuinely believe they have stabilized, improved or completely reversed ( maybe they have maybe it is
Placebo effect) can not say it is what they did ( correlation is not causation) and if it was that it will help anyone else

and we all know not everyone who claims a treatment or cure is genuine. Some are clearly out for money from vulnerable desperate people but others are twisted and looking to deceive for acclaim or even just cruelty. I have seen and heard of many sad cases of hopes raised and promises made and broken

the it didn’t work because you are too advanced is a common ploy used by many. That is often the excuse when someone dies being treated for als is lyme

 

[KevinM]

Right. Since I’m not on Facebook I couldn’t respond, but if I could i would have asked where and when he was diagnosed, who his neurologist is, have they documented this amazing reversal, etc. I not against occasional fasting (my wife does it), but it ain’t gonna regrow motor neurons.

I’m in a crappy mood today, and this really rubbed me the wrong way.

 

[Clearwater AL]

Wishmobbing as you wrote...

"It's relatively harmless when healthy individuals entertain themselves with the latest diet
or supplement, it can get dangerous or offending when claims of miraculous effects are peddled."

Key word... effects.

I've seen it here on this forum. Diets, foods, supplements, OTC meds and life style regiments.

 

[KimT]

I eat in a six hour window. Sometimes eight. It helps me sleep better. It helps GERD. My thinking is sharp when I wake up. I doubt it does anything for ALS but it helps in other ways.

I was able to get my free copper cut in half by taking Zinc (Gluzin.). Jason was right on that one and it didn't work with other forms of Zinc. B-12, Folate, and Theracurmin got my homocysteine back in the low normal range. Did that help ALS? Maybe not but I no longer have high inflammatory markers so it must be doing some good. I had my glutathione tested before I started taking NAC. In six months it was 40% higher. Maybe it helps, maybe it doesn't.

Does eating all organic, lots of olive oil and fatty fish help? It doesn't hurt.

I've been studying Rhonda Patrick's research for years. There's no doubt Sulforophane has anti-cancer properties and no doubt eating brocolli sprouts floods the body with sulforophane. Does that help ALS? Probably not but it's good, in general, for your health.

I'm annoyed at a lot of things, especially thinking one knows it all as relates to ALS. We don't know Squat and neither do most of the doctors we see. But I choose to have an open mind. Who would have thought fecal transplants could cure c-diff 20 years ago? I don't like it when people profit off other people, particularly with GoFundMe accounts that are connected to some kind of supplement or MLM scams.

Kevin, did you see the post on ALSTDI. New member. Said he stopped progression. Listed what he used. Very weak supporting research.....then hit us with his GoFundMe Account.

Don't get me wrong. I've donated money to quite a few PALS GFM Accounts, when they really needed it. I just don't like people peddling cures when they don't even have ALS.

 

[KevinM]

Yes I did, Kim, and your response was really good and to the point without going further. I would have really bored into him if I cared at all.

You are so right about diet and supplements. And your fecal transplant example is a real good example of new therapies not on anyone’s radar screen years ago.

A healthy diet is something all pAls should have, so long as we maintain weight. And I bet most all of us take supplements that we have read have some research behind them and might help somewhat. I just reacted to the claim that intermittent fasting healed his ALS. Now if dozens of pALS try it and have documented proof they also reversed symptoms, I may reconsider.

 

[lgelb]

Couple of caveats here:

1) Inflammatory markers ≠ progression risk, and taking any supplement expends the energy to metabolize it, that a PALS may not have to spare. There should be a fairly strong "burden of proof" for putting something into a PALS' body. Which is more important, keeping up with the supplement of the day, or taking your next breath?

2) I would strongly advise against any form of fasting in ALS, whether concentrating food intake into a few hours daily or intermittent fasting. We know that ALS is in part a metabolic disease, we know that baseline/stable BMI at ~30-35% correlates with survival, we know that diabetic control (which could include pre-diabetes) can wobble around in ALS, etc., and of course metabolic rate is going to reflect loss of mobility as well as any respiratory impairment. We know adequate protein intake helps prevent muscle atrophy (sarcopenia) even in "healthy seniors," (though protein supplementation past adequate intake does not help).

It is no time to play with depriving the body of nutrients for any arbitrary period.

 

[KimT]

I've seen way too many PALS become morbidly obese and suffer because of it. Yes, if a PALS is losing weight and is at a good weight, that is bad but for those of us whose BMI is in the normal range and we're getting great nutrition I see no reason to pack on the pounds. Taking in food during a window helps my health in other ways. If I started losing weight I'd have to reconsider.

Why do doctors stress the danger of inflammatory markers? Because they're predictive of disease. Not ALS but Alzheimer's being called type 3 diabetes cannot be a good thing. The last thing I need is my brain to quit working. It runs in my family and, despite ALS, I'll do everything I can to prevent it.

 

[KevinM]

I always appreciate your comments, Laurie, and from a bio-chemical perspective they are correct. And I personally don’t disagree at all with the fasting observation. I could not even try that because I demand a high caloric intake every day to maintain a healthy weight.

As someone with MND that is not in an advanced stage, I am more than willing to sacrifice some metabolic energy absorbing the few supplements I take—Magnesium, L-Serine, and Theracurmin—in return for the very, very slight chance that they might slow progression.

And I think that is the part of the equation missing from the discussion that only people with the disease understand—the psychological aspect—that explains why most of us are willing to try anything that has even the most remote chance of efficacy because there is such little in the way of therapies.

I’m reminded of a surgeon that recently died from ALS, much more knowledgeable than anyone on this site about human physiology, that went to China for stem cell therapy. Not once but twice. He knew full well that the treatment would in all likelihood do no good, but he went anyway. Why? Because he was willing to try anything to extend his time here, physiology be damned.

Unless you have the disease, coupled with the human response to do something, the use of supplements is worth the metabolic expenditure for most all of us. Both L-Serine and Theracurmin are either in clinical trials or proposed for clinical trials, and have been approved by my neurologist. Vitamin D is recommended by my PCP.

I am in touch with many, many others with ALS, and most all take one or more supplements, often at the suggestion of their neurologists. Your point is well taken, but in actual practice most of us don’t care about the metabolic consequences.

I actually think this raises a good question for those of us with the disease. How many of you take one or more supplements? Perhaps this should even be a separate new thread, though I imagine it’s been discussed many times before.

 

[Clearwater AL]

Kim, your first sentence and some of your other posts has me curious...

"I've seen way too many PALS become morbidly obese and suffer because of it."

I personally only know one other. Do you actually meet/visit with these PALS?
At clinic we really don't socialize after check in... maybe wave, say Hi. We get
wheeled off to other offices, leave at different times. That's the only place I see
maybe four or five others.

I believe there maybe about half dozen+ in the entire Triad Area ( Greensboro,
High Point, Winston - Salem) of North Carolina.

Of course... the ones I follow here.

 

[KimT]

Yes, Al, I've met many PALS. I've been to conferences, I've interviewed them for my papers and for a book. I've given to their GoFundMe accounts on Facebook and I was very active in my local chapter where there was good turnout. Sometimes, we'd have 20 attendees at a group meeting. Some of us went out to lunch on a regular basis. Two died of non-ALS obesity related illnesses.

I've interviewed over 300 PALS for my paper and upcoming book (not limited to ALS.)

This doesn't need to be questioned or debated. I'm just reporting what I experienced and witnessed.

I've helped plenty of PALS gain weight.

I felt my best on a very high fat, low carb diet but I had a hard time maintaining my weight so I went off it.

 

[KevinM]

Al, I have to believe your estimate of the number of pALS in the Triad area is low. The population of that region is 1.6 million. By comparison, the population of the Tallahassee region (includes several surrounding rural counties that utilize Tallahassee hospitals and specialists) is at most 500,000.

My local neurologist said he and his partner see about 4-6 new cases per year, and my wife‘s neurologist said his department, which is part of a larger team of neuro’s affiliated with our public regional hospital, diagnoses on average about 8-10 per year. All second opinions are referred to Mayo or UF Health, so I doubt these are double counts. These are newly diagnosed as well, so the number living with the disease is somewhat higher.

I also don’t think the number of clinic attendees provides an accurate gauge. Many of us don’t choose to attend clinic, and don’t participate in online forums. About every 3 months I read in our papers’ obituary that someone passed from ALS, and I never once came across them in forums or other social media.

 

[Clearwater AL]

The math seems to be questionable... the last estimate across the entire United States was
maybe 20,000 confirmed cases of ALS. It still is considered a rare disease Not any where
near MS or Alzheimers. I got my info from the local ALS Chapter for the Triad of NC.

Kevin, of that 500,000 what percentage have ALS? The current national statistic is two
per 100,000. So, that would be just ten... maybe.

Then you wrote... "The population of that region (Triad) is 1.6 million."
Again, why only 4 or 5 of us at the Wake Forest Clinic. Yet some write about the many
they meet at their clinic. ?? Ok, some don't do clinic. What's that number when the
first thing a neurologist who diagnoses someone with ALS they refer them to a clinic?

Also... "About every 3 months I read in our papers’ obituary that someone passed from ALS."

I read the obits for the Triad (1.6 million, your figure) and have seen one over the past several
months or even a year. The only other one was some sports figure but he was really from Raleigh.

People are throwing out numbers that just don't add up to reality or hard statistics.
Again, ALS is still considered a RARE disease. Not by this thread.

This thread is also blowing away all we have tried to relay to the "Could this be ALS'ers."

Kim... "I've interviewed over 300 PALS for my paper and upcoming book (not limited to ALS.)"

That's amazing! You should consider being a consultant to Duke, Mayo, Mass General or
Dr. Bedlack.

You've posted against people making money off things related to ALS but you are working
on a paper and book! ??? Will you get paid for both or one?

There are a lot of people who really have MS who question that diagnosis believing
it's ALS or want it to be because of the difference of financial benefits and they find
ALS forums, Facebook better fit their want to participate. Anybody can be anyone
they want to be on Facebook.

Don't mean to hurt any feelings but like my Bio says for city... "Get Real."

 

[KevinM]

The 1.6 million is not my number. It is from three different websites including this from wikipedia: “As of 2012, the Piedmont Triad has an estimated population of 1,611,243 making it the 33rd largest combined statistical area in the United States.”

The number of ALS patients diagnosed each year is estimated at 2.6 per 100,000, but the annual prevalence is about 4 to 6 per 100,000 people. Again, please do your own research online to confirm this.

I am reporting what my local neurologist and my wife’s neurologist told us. They have no reason to lie or inflate the numbers. Based on a service area of about 500,000, that is anywhere from 13-15 cases per year, which tracks with what they told me.

In the past year, the Tallahassee Democrat has had obituaries of four people with ALS. I knew two of them. I have no idea about the actual number in the Triad, but based on what I know from actual conversations with our local neurologists here and the population discrepancy, your estimate seems low to me.

Please don’t ever infer that I “get real” again.