New here . . . has anyone tried removing toxins ?

[LisaF]

Hi,

I can't believe I'm writing this . . . I'm so devastated . . . my wonderful mom, who is 83 and acts like she's 50, has just been told that NMD is "suspected". She only has symptoms in her mouth - started with throat clearing for about a year (she was told it was acid reflux & put on meds); then, in about September, she started slurring her words; now she's having trouble swallowing and is drooling a little, though she has a very dry mouth. She's very embarrassed by the speech issue, as it's unpredictable.

Mom had an EMG, which showed signs of brain stem lesion (?), but everything else is completely normal ( a little weakness detected in her neck & back, but neuro says that could be due to age).

She just had a blood test to rule out lyme (results next week); had an MRI yesterday, which was clear. We're reading that this sounds like Bulbar onset ALS? We also looked at Mysanthenia Gravis, but the dr sad it was less likely as symptoms usually get better after rest?

My brothers and I have been reading a lot about how toxins in your body, especially mercury in tooth fillings, can often be the cause, or at least the trigger, for ALS. Regardless of the eventual diagnosis, we're thinking of having her change her fillings, remove all cosmetics that aren't 100% natural, do a colon cleanse, go thru their fridge and pantry and 'cleanse' that as well, beef up the B vitamins, put her on a special diet & supplements, as per our osteopath. My question (for now) is, has anyone ever tried this, and were there any noticeable results? We're desperate for something, anything, that will help her, and appreciate any information you can share.

Thanks so much,

~Lisa

 

[Al]

Hi Lisa, sorry about your mom. Use the search feature above and you'll find that none of those things work. Better to spend the money on a trip and make some memories. Sorry it couldn't be better news.

AL.

 

[BarryG]

Lisa, welcome to the forum and I am very sorry about your mom. I am also sorry but I agree with Al. You can read about all kinds of possible causes and triggers for this disease but none have been proven. Similarly none of the cures and treatments that you mentioned have ever been proven to do anything but make the person miserable and waste money.

Sorry for this, I have bulbar onset and I cannot imagine going through the pain of having fillings replaced because it won't help and will only bring discomfort. And PLEASE let her eat what she wants for as long as she can, you have no idea how I would love to be able to eat again (and it certainly wouldn't be a special diet unless that included steak and pizza).

The best thing that she can do is reduce stress and maintain weight, both of which are counter to detoxifying. Sorry.

 

[GRM2008]

My mom has ALS, she's 72.... diagnosed September 08, but symptoms for about 8 months prior......we also considered the removal of the fillings, stem cell treatments in Mexico, other forms of detoxing, etc.....as you progress in your research, you will find, as others have posted, that nothing is going to stop ALS, if that's what your mom has, sorry to tell you......right now you are in that awful period of shock and devastation, i know it well, been there.......believe it or not, as awful as ALS is, at some point "acceptance" comes, and it just becomes part of your life........people continue to live with the disease........at least this is what our family has experienced........that's not to say it's easy -- it's not...it is very, very hard........but we keep going..................regarding the fillings, also, i had read that disrupting the teeth/gums like that could also send some dangerous plaque into the heart and cause an infection.......my opinion, like the others, is to take a deep breath, and don't do anything about the fillings...........your mom should eat what she wants, whenever she can, and just surround her with people she loves and things she enjoys ... save her money for the help you might need going forward.......

 

[LisaF]

Thanks so much for all of your support. I think this forum will be a great resource for our family -- everyone is so kind and open and honest. This is truly an unbelievably difficult, devastating and all consuming time for us, and I truly appreciate your advice and wisdom.

I hadn't realized this was such a controversial topic. We just bought 3 of Eric's books, of course! Some of what he says makes sense (so far), but some does seem a bit sales-y. We have no intention of purchasing anything else from him, just trying to get all of the info we can to make informed decisions. GRM, I'll definitely look into the fillings removal causing plaque release -- thanks for that advice. Otherwise, sorry if it sounded like we were doing anything extreme. Other than the colon cleanse, which we also haven't decided on yet, what we are planning is really not such a big change. My brothers and I have fairly 'natural' households and it really isn't much of a compromise -- we eat all the same foods, just without anything artificial in them (we've been trying to get our folks to go in that direction anyway). Cleaning products and cosmetics are also easy to switch. As for the vitamins and supplements, the osteopath I mentioned is someone who has helped our friends and family for years, with very sound advice, often diagnosing issues that regular mds have missed. He considers himself 'complementary', not 'alternative', and is a fan of red meat! I guess we just want to do all we can to stop the progression of this disease. We really don't have illusions of reversing it, but just feel these things are worth a try.

Not to open another can of worms, but has anyone looked into the Steve Shackel's blog? He doesn't seem to be selling anything, though he does recommend products here and there. I didn't see him come up in a search on this forum. This is his blog: Introduction to the thinking behind the ALS/MND website

GRM, if you don't mind my asking, did your mom have bulbar onset, or 'regular'? And how fast is it progressing?

Thanks so much for all of your opinions -- we need them so much right now.

~Lisa

 

[helpinhand]

I too agree with everyone here, when my father-in-law got his diagnosis we went searching for anything to help only to find this is not a kind process and certainly has no cure, let them eat anything that they want to for as long as possible we had to go to tube feedings this week and are so glad we didn't waste time and money on "fixes" went on vacation and gained 5lbs instead. He speaks of it everyday how fun it was. Make the memories enjoy your loved one and let them eat...eat...eat...as long as possible.

 

[kelly]

My husband has tried several detox protocals ...all making him feel like crap and made all of his symptoms progress rapidly. We have spent countless dollars..and wasted lots of valuable time. My hubby also wanted his fillings removed. Not one case of ALS has been improved by doing this that I know of. Sorry to be a downer..we have just wasted to much valuable time trying these products. Learn from those that have already tried these products. Maybe spend the money on a nice massage for your Mother!

 

[hopeful warrior]

We, too, have traveled the country trying detox protocols and kabuki naturals. It was a complete waste of time, money and energy. None of which we had an abundance of but felt we had to try.

Unfortunately, there are many people who prey on vulnerabilities of others. These predators will say anything to take your money, leaving you even more defeated and spent.

I am so sorry your mom is suffering from this. She is so lucky to have you and your siblings for a support group.

 

[LisaF]

Thanks so much for all of your feedback; I think this forum is going to be very helpful to us as we navigate these very murky waters. Has anyone read Steve Shackle's blog? He seems to have some helpful info as well (I hadn't realized Eric was so controversial!). I do think and hope that taking care of her nutritional needs will help my Mom to be her strongest (don't worry, my brothers and I all have fairly 'natural' households and she can still enjoy her favorite foods, just more natural versions). I guess we'll just have to weigh and measure all of the other ideas . . .
I wish all of the moms out there a warm and loving Mother's Day. I know we will treasure our Mom's presence all the more this year.

 

[trfogey]

I'll give you the same advice I was given when I started my ALS journey three years ago: If there is anything proven to work for the ALS patient, everybody will be using it.

The only things I've found that meet that standard are:

1) Maintain body weight.
2) Use a Bi-PAP sooner, rather than later.
3) Gentle, range of motion type of exercise.
4) Prevent spread of contagious diseases.

Eric Edney and Steve Shackle are like the big chocolate bunny you find in the middle of a kid's Easter basket: Lots of pretty colors and a delicious smell, but hollow when you get to the center of the thing.

Good luck to you and your mother.

 

[scuba114]

We had my wifes fillings removed right after diagnosed. None of that works. Take the advise given here and live every single day as your last together. Laugh and hug is the best thing I can tell you.