Do you know anything about this alleged ALS treatment?

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Ms. Pie

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Hey, I got an e-mail from a PALS who is a friend of a friend yesterday. Sounds like a nice guy, but he started talking about a Dr. in Fort Collins that looks at and analyzes your hair and puts you on a vitamin regime and this makes the PALS feel better and can stop the progress of ALS. I know some guy posted trying to recruit people for a program similar to this one. This sounds too good and too simple to be true and not investigated to pieces. The PALS also wondered why ALSA wasn't behind this treatment. Do any of you know about any sucessful treatments like this? I'm not buying it at all but like I said, he is a really nice guy so is my friend. I know vitamins are a good thing, no doubt. What are your thoughts about this treatment?
 
I would like to see the science behind the treatment before embarking .
 
Yeah, me too. I'm uncomfortable around anyone that's hyper zealous about anything especially if it seems too good to be true. And this seems too good to be true.
 
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This scam has been around for a while. I'm embarrassed to admit that I once sent off a hair sample for testing. Pure hokum.

Check this out:

Commercial Hair Analysis: A Cardinal Sign of Quackery

"Proponents claim that hair analysis is useful for evaluating a person's general state of nutrition and health and is valuable in detecting predisposition to disease. They also claim that hair analysis enables a doctor to determine if mineral deficiency, mineral imbalance, or heavy metal pollutants in the body may be the cause of a patient's symptoms. These claims are false.

Hair analysis is not reliable for evaluating the nutritional status of individuals. In 1974, the AMA Committee on Cutaneous Health and Cosmetics noted: "The state of health of the body may be entirely unrelated to the physical and chemical condition of the hair . . . Although severe deficiency states of an essential element are often associated with low concentrations of the element in hair, there are no data that indicate that low concentrations of an element signify low tissue levels nor that high concentrations reflect high tissue stores. Therefore . . . hair metal levels would rarely help a physician select effective treatment." [3]
Most commercial hair analysis laboratories have not validated their analytical techniques by checking them against standard reference materials. The techniques typically used to prepare samples for analysis can introduce errors for many of the elements being determined.
Hair mineral content can be affected by exposure to various substances such as shampoos, bleaches and hair dyes. No analytic technique enables reliable determination of the source of specific levels of elements in hair as bodily or environmental.
The level of certain minerals can be affected by the color, diameter and rate of growth of an individual's hair, the season of the year, the geographic location, and the age and gender of the individual.
Normal ranges of hair minerals have not been defined.
For most elements, no correlation has been established between hair level and other known indicators of nutrition status. It is possible for hair concentration of an element (zinc, for example) to be high even though deficiency exists in the body.
Hair grows slowly (1 cm/month), so even hair closest to the scalp is several weeks old and thus may not reflect current body conditions for purposes of health diagnosis.
The use of a single multielemental hair analysis test as the sole means of diagnosis violates basic tenets of medical practice that laboratory findings should be considered together with the patient's history and physical examination, and that the practitioner should keep in mind that laboratory errors occur.

For these reasons, multielemental analysis of human hair is not a valid technique for identifying an individual's current bodily excesses or deficiencies of essential or nonessential elements. Nor does it provide a valid basis for recommending vitamins, minerals, or other dietary supplements [4,5]."]
 
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Would you even consider giving money to a mean person. Of course the con artist is going to be your new best friend. ALSA isn't behind it because it's a scam

AL.
 
Seems to be a few scams going round at the minute claiming to be something wonderful for people with ALS, ive had a couple sent through my website!
 
I appreciate you pointing me in the right direction. I didn't think it sounded remotely like anything I'd want to consider investing in. I know this man will probably sing it's praises and now I know what to say.
 
I'm sorry, Ms. Pie :( I wish it was that simple :( I think they're right up there with the idiots convincing people to spend thousands on "Lyme Literate" doctors and Labs being investigated by the FDA.

People that prey on people with ANY illness are the scum of the earth in my opinion.

It IS possible your friend is having a "placebo effect" reaction to the 'treatment' he's getting.

Are you still eligible for some of the stem cell trials?
 
Yes, I also did some research on the "Dr." to which he referred and he had his DDS liscense revoked for being a quack. I'm going to inform the PALS that's buying in to all this of what I've found. Thanks Patty and everybody!
 
Hair Analysis...been there done that
urine analysis...been there done that
Lyme treatment done that
thousands of dollars spent on supplements..done that
Please be careful..none of the above has changed my husbands diagnosis of ALS! Sorry,...............
 
“Lyme doctor”: I ve always found it weird! Ok, this disease can presents itself with various symptoms but nothing a GP cannot handle. There are many diseases far more difficult to diagnose. My father got it, he went to his GP, got antibiotics and that was the end of it. Ok, in rare cases, it can mimic ALS but an experienced neuro can know the difference pretty quickly.
 
“Lyme doctor”: I ve always found it weird! Ok, this disease can presents itself with various symptoms but nothing a GP cannot handle. There are many diseases far more difficult to diagnose. My father got it, he went to his GP, got antibiotics and that was the end of it. Ok, in rare cases, it can mimic ALS but an experienced neuro can know the difference pretty quickly.

Pretty sure that's why the FDA has been investigating the leading labs that are supposed to be so "good" according to the list of Lyme "literate" doctors out there.

I mean, come on--How many people out there do you really think manage to get a huge bulls eye rash on their bodies and totally miss it?

Not too many, I would imagine.

I don't think Lyme is as prevalent as those lyme literate docs would want you to believe. Not everyone gets the rash--I get that--but I still think it's snake oil.
 
Actually, I've done a lot of research about Lyme, and it can be very insidious... my daughter actually had Lyme when she was about 3, and yes, I saw the rash (only because I was giving her a bath, it was VERY faint), went to the doc (who called in her associate as NEITHER had seen Lyme firsthand at that point). Had to bring her to the hospital for the blood draw, got sent to the CDC in Atlanta, because she was the FIRST case in our town reported. I then got a call from a nurse from the state, asking where I'd been with her, etc. I had actually been watching for it, as I knew she picked up the tick in my yard or her babysitter's yard, and had kept the tick. In retrospect, about 2 days after I had taken the tick off the back of her neck (the rash was on her stomach) she was out of sorts, and I thought she had "Fifths Disease", as it was going around, she was blotchy in the face, and CRANKY! Luckily for us, it was caught that week, and the antibiotics took care of it. But a couple years later the town still had information stating that there were "no cases" reported in our town. Unbelievable.

Fast forward to my symptoms... I had a very weird flu-like illness in Aug of 2008, and in retrospect realized that it had a lot of elements of a classic Lyme attack, even though I didn't remember being bitten. But 6 months earlier, I had been in RI, and even my car had been infested with ticks for several days afterward... we were pulling them off of each other, my seats in the car, etc. They tested me for everything that fall, including Lyme, and everything came back negative. But that was the beginning of all my ALS symptoms as well, I know it is related.

Once Lyme is in your system long term, it can "hide" in your tissues. I've read up on it, and have totally come to believe that in many cases, you're going to keep testing negative with the ELISA test, which is pretty much worthless. There are also 3 co-bacteriums (not sure I said that right), and they often do not get picked up on the bands that the CDC specifies. If it shows up ONE band, I would consider it to be Lyme, right? Wrong. That's why so many people don't believe the tests. I know that some labs are accused of stating that all their tests come up positive, and maybe there is some truth to that. But I've come to believe that many docs don't know how to treat Lyme, and more than they know what to do with ALS. It's the "Lyme Literate" docs that I would trust with this disease, as we go to ALS specialists, not GP for our symptoms.

That said, I tried the method of going on antibiotics for a month, and then 2 weeks afterwards, taking the Western Blot test. It wasn't until that came up negative that I finally agreed that it wasn't Lyme. The theory behind the antibiotics (and I guess you should really take 3 different ones, I only took one) is that the bacteria hide in your tissues and can't be picked up in the tests in your blood when it's a long term case. The antibiotics will kill some of the bacteria, which then can't "hide" anymore, and will be picked up in the blood test.

So for me it was a dead-end, but I still believe that it may be a factor in cases where there's a lot of traveling type of joint pain, etc. It can cause a lot of long term neuro issues, heart issues and more.
 
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