Chelation for ALS

[RWhittier]

Hi,
My husband is considering going out of state to a Dr in North Carolina for 6 weeks of Chelation Therapy. Has anyone had this or know anything about it? I am very nervous and don't think this is a good idea. Thanks for your help
Rhonda

[tmasters]

Rhonda,

You have good instincts. Many have tried it, nobody reports back with lasting benefits. Same is true for stem cell therapy, silver filling removal, and the like. The only benefit is hope, but it is temporary, and the ultimate crash of defeat will more than outweigh the initial hope.

You can search this thread for "chelation" as this has been discussed before.

I notice you're also from Anaheim. I'd ask you to PM me, but since you don't yet have posts, you can email me at tmasters2 at yahoo dot com.

-Tom

[fredoniagirl]

This will do nothing for ALS. Your husband is quite likely the target of a quack. Save your valuable time and money for things you are really going to need in the future. I understand how desperate you and he must be - but don't fall for quackery.

fredoniagirl

[RWhittier]

Thank you so much for answering. I don't know how I can tell him "no" to his one chance at HOPE for a "cure" but I know in my heart this is not right. This "Dr" has given him names and phone numbers of people who swear they have/had ALS and since Chelation are "so much better" and they both said "they would sell their house to be able to continue it" (strange that two different people said the exact same thing). It's a red flag to me but he and his brother don't seem to agree.
Again, thanks for the response.

[patricia1]

No way it doesnt work. Its just another way for the CREEPS out there make money on desperate people>

Save your Money!


Pat1

[ZenArcher]

Well look at it this way, the doctor that runs that center and claims to be able to help with MND has one published paper. That paper pertains to the effects of a low carb diet. Don't you think if this actually worked he would be scrambling to get it published. Published and accepted results would mean huge amounts of funding and recognition and yet nothing.

Also the treatment being used as far as anyone can tell is a Myer's cocktail which is a bunch of nutritional supplements with some chelation agents such as DMSA or EDTA. He then "tweaks" the content for each patient. How does he know what to "tweak"? How does he "tweak" it? Where are the results?

Beware the snake oil.

[tmasters]

Rhonda,

It seems you will not be able to dissuade your husband. I understand how difficult this must be for you.

I have one request. PLEASE, post back here in a couple months and let us know how it went, and how your husband is doing. Please do this, regardless of the outcome.

Many people post that they're going to try chelation or stem cells or ayurveda, or you name it, and then we never hear back. The natural assumption is that it didn't go well, and of course it's hard to post back with negative results. But you have to understand that even a negative result can be a benefit to the next PALS who is considering a similar treatment.

If I could offer you postings from 3 or 4 PALS who had tried chelation and had no benefit, you could use this information to help your husband make a decision.

All that said, I pray your husband will have good health, and he will find the hope he is seeking.

Keep the faith,
Tom

[RWhittier]

Tom,
Thanks for your response. Yes, you are right, I am not going to be able to get him to see it "my way". If only I could find a few people who tried this chelation with Dr Hickey and it didn't work. He claims his chelation is different than any other chelation out there. And he doesn't make any promises. I spoke to a man yestarday who was diagnosed with ALS and has had Dr Hickey's chelation and swears he came home better. His only problem is he lives in Ohio and Hickey is in NC, so in order to continue, he has to have someone in his area do Dr Hickey's chelation or go back to NC.
Thanks for all you help,
Rhonda

[citytom]

I've never been to Ohio, but if there are chelation centers there, then Dr. Hickey can write out his protocol for the local chelation center to continue with.

I've done about twenty chelations over the last two years. I can't say it helped I'm sorry to say. But here's the way I look at it.
There are no markers for ALS. ALS is diagnosed by elimination (ie. "No, you don't have MS, polio, Parkinson's etc.). The cause of ALS is unknown. Ergo, and hopefully, your husband just may be suffering from Lyme, heavy metals, toxins, etc.
Why not try the chelation. Has your husband been tested for heavy metals? I don't mean a hair test...but a blood test challenged with a chelator? Has he been tested for Lyme...not by Quest or Lab Corp...but by Igenex?

My guess is that the special protocol for chelation that Dr. Hickey might follow is to use calcium EDTA for the first few sessions, retest for metals, then continue with some DMPS chelation. There are reasons for this method.

During chelation your husband will also likely get injections of glutathione, lucovourine, and vitamin B. These might have a favorable effect on him.

His choice to to do something...or to go home and do nothing.

Some on this forum may find what I say is credulous, but I am a skeptic. Be careful of cynics advising you.

[Al]

Nope, you're entitled to an opinion but by your own admission it doesn't work which is my position on the whole toxic metal, chelation thing.

AL.

[dr.hickeypt#1]

Please do not discourage the patients that are seeking Dr. Hickey's help. I was his first patient with ALS symptoms and within 1 week others followed. He doesn't make claims to cure people of this or that. He simply tests people for heavy metal toxins and proceeds to remove them and replace them with a formula for the body to heal. He has been recognized by Dr. Priori, Cleveland Clinic and Duke University for his results in the last year. There are a lot of quacks etc. out there. I went to him because I personally know of a man that cured of MS (was in wheel chair and blind in one eye) and it was under his care. He never makes the claim he can cure you. Each one of us has different immune systems but if there are similiarities of heavy metal poisoning in our system, you owe it to yourself to check it out. Many of us under tmt of Dr. Hickey put our personal lives out there in testimony when you call us as referral. WE do it for one reason. This is helping us tremendously so far with our symptoms and noone else has it so we feel we should share our blessing when asked to do so. I would be skeptical too if I didn't personally know many people that are leading very normal lives thanks to him.

[dr.hickeypt#1]

dear Rhonda,
I'm not sure how to blog this type of forum. I can personally tell you that i know myself and others have been helped tremendously by Dr. Hickey. He makes no claims to cure people...just identifies heavy metal toxins and removes it and replaces it with something our immune system can use. He hosted Dr.Priori from the Cleveland Clinic recently and we (patients with ALS)all met and he said he couldn't believe we were ALS patients and he sees 300 or more a month. So we all have different responses in our immune systems but he has helped many MS, Parkinson, ALS
patients etc with this tmt. Pls have faith.


Hi,
My husband is considering going out of state to a Dr in North Carolina for 6 weeks of Chelation Therapy. Has anyone had this or know anything about it? I am very nervous and don't think this is a good idea. Thanks for your help
Rhonda

[Al]

Show us something in print from a recognised medical journal and I might believe it. You could join here and say you were abducted by aliens. Making medical claims with no proof is the same thing. How do we know if you aren't being paid by Dr. Hickey? Oh sure, because you SAY you aren't. How do we even know if you ever had or have ALS? Oh , I can phone you and you'll tell me? Yea sure.

AL.

[Al]

Dr Priori said he couldn't believe you were ALS patients. You couldn't fool him and you can't fool me either.

AL.

[Al]

I was just over on ALSTDI and they didn't seem to swallow the $ 6000 + treatments either. Glad I'm not the only skeptic around here

AL.

[hopingforthebest]

Al,

I will tell you what our director of the ALS clinic told us about these people that encourage the terminally ill to try this and that. He said there is a special place in hell for these people that take ones savings and give them encouragement while depositing their retirement savings etc. into their own bank accounts.

If there is help.....post it for free and go to the scientist that are working on a treatment etc. Be famous and be honest!

I shudder to think what God will do if you are scamming the ill just for the $$$.

Praying for all!

Patty

[ZenArcher]

I could write a book about my thoughts on this but I don't have the patience tonight. My thoughts pretty much coincide with Al's. Tell this quack to publish results or pack sand. I'm tired of hearing it. If it really worked it would've been published long ago so the investors would know about it.

We spend time reading and talking about this kind of crap when we should be advocating for the cause. For those that don't know yet S.3297 which contained the ALS Registry Act failed to get the required 60 votes needed to even enter discussion. In a 52 - 40 vote the Registry took a back seat to gas prices. Well maybe next year. In the meantime this "doctor" will continue to take people's money and provide no evidence.

[patricia1]

I am so sadden by people like this .How do they sleep at night.
I have been a victim of Quacks that claimed they are going to cure me >I had accupunture, cold laser, Detox foot treatment all by different Chiropractors They by the way are the worse people alive. I even sent away for gyconutrients that ERIC IS WINNING recommenened. Eric is a fake by the way.
I only wish I used all that money and went To Hawaii.l


Please learn from my mistakes and save your time and money


How cruel!
Shame on you all
Wait till you are on the receiving end.

Pat

[kelly]

We tried the aggressive Lyme Disease Attack, the chelation...and nothing works. We were warned..but their was no convincing my husband. So, 10,000 later..we are still left with ALS. This is a tough one...desperate people take desperate measures. But, let us save you the money. Fondly, KR

[brendapals]

:lol:kelly,
Bless your heart. My hubby is ready to have me try the new antihistamine just in the news for alzheimers. He says it is supposed to protect our neurons. It is being tested in Russia I think?

He also wanted, notice I say wanted, me to take human growth hormone. He just knew it would be the one thing that would halt my progression. Desperate people do try desperate measures.

I'm happy to say he has calmed down on the HGH. It's all so overwhelming to deal with, I know he was just trying to help. And on the chiropractor thought, I too have had several adjustments, did the foot Detox, and thankfully, only spent about 40 bucks total.

I am anxious for the day that someone comes across here, or on tv, or in the newspaper that says a cure has been found. Until then, I will continue living like today is my last.

thanx for listening!
Keep the faith,
brenda

[awieleba]

I appreciate you folks who have tried things and post.

I am not dx yet, but I have been wanting to go to a homeopathic doctor. I have been helped in the past by one, but that was for my immune system and viruses. I just want to feel better.

I agree, if even 100 out of the thousands of people with mnd (less than 1% lets say) have been helped or progression slowed, we would know. The doctors would know and everyone would share info and be doing it. The docs may have a hard time with a dx, but they would do or recommend anything that would help. All the researchers would be on to it by now.

I do think that if you can afford the supplements, treatments, etc and it makes you feel better, than why not. I think we all just want to feel like we are doing "something" to help ourseves instead not trying at all. And if mentally it makes those folks happy while they are suffering, why not? IF you can afford it. I would think no matter what dx you have, living a clean and healthy life would make one feel better. It wont cure you but being healthy seems to be a better choice than not.

I know alot of people that have been helped or aided by homeopthy, but it is always for your run-of-the-mill ailements or in conjuction with cancer treatments. No one has cured alzheimers, mnd, parkinsons, etc with it.

Again for those who have tried it and not had a great result, thanks for posting.

[MtPockets]

Beware of Chiropractors.

While my Treating Physician was doing his rotation in the Emergency Room, he said at least one time per week an ambulance would come in with a Chiropractor ridding with the patient (Victim). He saw broken necks and all other kinds of injuries caused by the Chiropractors trying to "Adjust" the patients (Victims).
I was a victim of one of the Chiropractors, which caused more damage to my back than I had to begin with, due to his "adjustments". Therefore, I also do not trust Chiropractors.

I have also tried Acupuncture, Bio-Feedback, Hypnotism, Therapy, Pain Management Clinics, any and everything and none helped. All of this was just for Chronic Low Back Pain over a period of 19 years.

The only thing that has helped me endure this pain and be able to live from day to day is Prayer. The biggest advantage of Prayer is that it is FREE.

[Markbreton]

When my wife Tammy was first diagnosed Feb.14th/2006 we felt like you. Lets try anything and we did try several "radical treatments" Clay baths, heavy metal detox (tammy was tested and she did have high free radicals - toxins) all kinds of suppliments and some of the things we tried DID make her feel better BUT and I stress BUT....she is still going down hill and although these things did make her feel better at that time....we now question weather or not it was all worth it. Please save your money, it will be needed down the road for much better things. Stay strong and positive...this I know works!
Mark:confused:

[awieleba]

thanks to everyone helping out those who are trying these alternative treatments!

Capt. AL~I was going to go to a chiropractor, maybe I will settle for a massage! did you ever do applied kienseolgy(sp?). I did that once and I think it helped. I went to a gastro who told me that I had gerd,(did the barium swallow and all), well I went to this alternative guy who told me I have a hatial hernia and worked on it with his hands and table. He did not crack any bones, they feel you should not crack. He had a table that popped down and up and used his hands. I never felt a crack on my bones-that I can rember. and I never had that problem again. It could of been a coindidence, I dont know. but I did feel better and never took the pills for gerd.

with that being said, I dont think anything would work these days on the types of problems I have, they simply to large.

anyway, thanks to all who post what they have tried. It is helpful to all!!!

april

[kelly]

Hi Brenda,
My husband also wanted to do the human growth hormone...impossible without a prescription. He was even tested to see if he was deficient. Still holding on to hope that we will find some sane solution. Fondly, KR

[brendapals]

Hey Kelly,

Luckily he hasn't mentioned HGH in about a week. I don't know what the future holds for all of us PALS and CALS, but I remain steadfast in thinking POSITIVE MENTAL ATTITUDE goes a long way!

I was actually able to tell a couple of my patients today why I was slurring my speech. And I'm happy to say I did it without becoming a blubbering fool! I am speaking in front of the media and all the sponsors of the Southern Indiana ALS Walk tomorrow for the kick-off event. The coordinator of the walk called me today and asked me if I was ready to speak for 30 minutes, then he said he would be heckling me from the crowd! Of course, I told him to bring it on!

As long as the free dinner and free cocktails are involved, I will talk as much as I can.
Keep the faith,
brenda

[kelly]

Brenda,
Sounds like you have an amazing attitude. I think that is great that you will be speaking about ALS! I will be thinking of you tomorrow. Fondly, KR

[brendapals]

kelly,

thanks so much! There is nothing I love more than talking and educating. I run into people every day that have no clue about ALS.

Maybe I should have been a teacher? Nope, wouldn't have made it past kindergarten!
hahahahaha

I'll post later about the "big speech"!

Keep the faith,
brenda

[awieleba]

Brenda~

I am thinking about you and your speech today. I am sending out all positive energy your way!

[andyvaughn]

Brenda,
I am writing to talk to you about the growth hormone. There are numerous studies, including one out of Harvard - that shows IGF1 (growth hormone) has neuroprotective and regeneration properties. There have been multiple large scale studies on the drug, including one from the Mayo clinic that ostensibly we should be seeing the final results on soon. The studies have been conflicting, but there is enough evidence that shows it could have some benefit in slowing ALS progression. My husband is on Increlex, which is a human growth hormone. He takes 2 shots a day, in our case insurance covers it.
In the case of growth hormone, at least in my opinion, there is enough published literature to warrant a look into it. Unlike the Hickey Center, which is all the reportings on the ALS forums, notably from new members, of the wonders of Dr. Hickey. Not a published paper in sight from the guy. He has only been on growth hormone a little under a month. He feels some improvement in his ability to swallow, other than that our only hope is that it delays any further progression.
I am not trying to persuade anyone to take anything they aren't comfortable with, but just noting that there is enough peer reviewed, published evidence to substantiate growth hormone as a therapy in ALS.
Andrea - wife of Pals Jim

[brendapals]

thanks andy,
I will let my husband read about this over the weekend. I also will check with my insurance to see if it is something they will cover.
I'll keep you posted.
thanx again,
Keep the faith,
brenda

[andyvaughn]

You're welcome Brenda. I hope your insurance does cover growth hormone (gh) if you choose to go that route. The research on GH isn't very conclusive, one can see from any quick google search on it, but at this point there is just NOTHING out there. My husband, unfortunately, is in the most rapidly progressing "class" of ALS, he has remained in the 0-5% range on the ALS FRS scale pretty much the entire time since diagnosis. He has been on Lithium since the beginning, as well as rilutek, and now Increlex. I do know that Lithium definately helps with his swallowing, he had a period off of lithium when his blood levels suddenly shot up, and we noted immediately that he struggled with water, ice cream, etc. Back on Lithium at 600mg daily he is doing better with water, etc.
While his progression has been alarming, at least to me, it does seem to have slowed. In the first 6 weeks of his symptoms he lost the ability to swallow pills, much use of his left arm, and began to have weakness in his right leg. That was Jan this year. Now, end of July, he is still without a PEG, he is still walking, (very shaky, but walking), and still has some function of his left arm. His right leg and arm remain without loss of strength, however he has fasciculations of his right shoulder, and I did see some in his forearm over this weekend. I am only reporting our experience to help anyone who may want to pursue any of these therapies... it definately isn't curing it, but I do think we have seen some slowing?
Andrea - wife of Pals Jim

[crystalkk]

Al,

Glad to see you are still fighting those fires!!!!!!!