Again: restored teeth

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@laurie you're right! the best thing is to say "no help", so it is not reasonable to spend money and time. oh, in that moments of spending time, i found: https://jeffreydachmd.com/wp-conten...ry_Redhe_1994_Int-J-Risk-Safety-Med_Recov.pdf

lyme is not quack! it exists, it is SOMETIME "unseen", but far away from "is not related anyway to als". it is, but app2%. you have 5-10 fals (for sure more, cause some pals even dont know they are fals) - up to 15%, juvenile als-ubqln2, fus etc app 2%.. you have guam als, toxicity from bmaa app 2%, some pals are realy poisoned with heavy metals app 2%, some are poisoned by long term exposure, so it is not possible to mesure / check quantity of HM in blood.
what exactly variant of als we are discussing?
 
Jethro,

I decided to spend time early on in studying anti-inflammatory food and supplements. I also made sure to correct all deficiencies which was very costly because gut microbiome, some minerals, and lots of vitamin levels are not covered by insurance here.

After four years I decided that I had learned enough and want to focus in my remaining quality of life. I still go over to ALSTDI to see what's cooking on their site. I go to some of the FB groups but take what I read with a grain of salt. I know the things that make me feel worse and I know the things that make me feel better.

I know enough about health to know that there are quacks out there who prey on PALS. There are also good functional medical doctors who use alternative methods and do tests other doctors will not. I think it's up to each PALS according to their existing knowledge and finances to pick and choose where they're going to invest their valuable time and financial resources.

You have probably seen the PALS who gets every treatment available. He has millions so he can afford stem cell treatments and everything else. He is doing well and very functional. He's on a couple of FB groups. But for every one "success story" there are hundreds of scam stories.

I just don't want newly diagnosed PALS wasting time chasing things that won't materialize and, I think, that might be the point of Laurie's post.

As you know and often say, what works for one might not work for another.
 
@kim i am still convinced that als, variant that affected me, has a solution so close, that we can not imagine.
 
I hope you're right. I do agree there are variants. Today, on FB, a guy that had it for 10 years was still walking and working. He wasn't young, either. His diagnosis was confirmed. He is on a bunch of protocols and tries different things. So who knows if it's something he is doing or something he didn't do.

But it's frustrating for PALS who have tried everything yet still decline rapidly. So, I believe, there are many different variants and each PALS has specific mechanisms to fight it.

This is the first year I've dealt with fatigue. I didn't understand what people were talking about....now I do. I was too tired to go in the pool today and opted for a nap.
 
~10% of PALS live ten years or more. Study of that group has not disclosed "what others should do." There is not a common denominator, just like we haven't found risk factors among healthy runners who drop dead of heart attacks.

For PALS in and out of the 10%, I unapologetically advise you to live your best life while you have it. That excludes spending time, money or energy that you cannot afford, chasing solutions that are not there, flooding your already-struggling body with semi-random supplements, sitting in a dentist's chair, undergoing interventional procedures with no evidence of efficacy besides individual testimonials, etc.

[There are some supplements that there is reason to believe might help. Most don't fall into that category. Antibiotics absent an active infection don't.]

Hanging out online makes sense when you're sharing tips on living as we do here. It doesn't when you're spinning theories made out of sand.

I define your best life as the one you chose before ALS, with the people, places and pursuits at hand, adapted to your physical circumstances. Or it may be something new, like bucket list travel or just smelling roses. Whatever it is, you have seven hours, 40 minutes left to live it today (if you are in the Pacific time zone). Take them and you will never regret it.

Best,
Laurie
 
@kim i know what kind of fatigue pals and you are talking about now. you should start IMMEDIATELY use nad+ or nmn, google it... it takes a while when it starts to work. few months...
@laurie i died same day when i heard diagnose. since then i am living corp. every day is a kind of god's bonus since. i will never understand people who spend their last money on their "last days" (that's what i call surrender), and they dont want to spend it on a hope, leave it to their children...every als is a different. every person's mindset is a different. i will never regret it? what for exactly? how can you (non)regret, if you die? i know, my logic is a anti-logic. i'd rather kill myself than surrender (whatever it means).
 
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@jethro, I've been using nad+ as part of my regimen for some time now. I honestly believe starting CBC and curcumin over three years ago has helped. Maybe I'm wrong. I do know one thing and that is if you take good care of your general health, your quality of life will be better. Thus the reason I had all the testing in the beginning and continue to do blood work and a once-a-year gut bacterial analysis. That's why I bought my breathing test equipment and stopped going to clinics that only wore me out.

I've always been very health conscious and I continue to be. I've had adequate education and experience to determine what is right for me and what is a waste of money. Remember, I was finished with my doctoral coursework for a doctorate of naturopathic health before I got ALS. It was going to be a second career after I moved to Arizona. My plans changed but I was fortunate enough to learn a lot about nutrition and supplementation.

But, Jethro, I had to find balance between searching for a cure or something to slow or stop progression and living my life with this diagnosis.
 
@jethro, I've been using nad+ as part of my regimen for some time now. I honestly believe starting CBC and curcumin over three years ago has helped. Maybe I'm wrong. I do know one thing and that is if you take good care of your general health, your quality of life will be better. Thus the reason I had all the testing in the beginning and continue to do blood work and a once-a-year gut bacterial analysis. That's why I bought my breathing test equipment and stopped going to clinics that only wore me out.

I've always been very health conscious and I continue to be. I've had adequate education and experience to determine what is right for me and what is a waste of money. Remember, I was finished with my doctoral coursework for a doctorate of naturopathic health before I got ALS. It was going to be a second career after I moved to Arizona. My plans changed but I was fortunate enough to learn a lot about nutrition and supplementation.

But, Jethro, I had to find balance between searching for a cure or something to slow or stop progression and living my life with this diagnosis.
@kim ok, no use in secrecy... i have to tell you (honestly) that since i have als, you and gregk (although i didnt like him) are most precious persons who share something very important with me. greg passed recently, but you wont. you wont at all. i dont have to like your post to support your attitude. so you use also cbc? what about cbg, cbn and cbda? harvest is on here... id like to give you...something. not sell, but give!i'd like to send you something via post office. is it possible?
 
@jethro

I have a card for medical cannabis. I'm on the whole plant but I take CBD separately because of the large dose. Lately, it has been 50 mg in the morning and 100 mg at night. I also have the whole plant but primarily THC in Indica form. Specifically 9lb hammer which has a more sedating effect than sativa strains or even other Indica or hybrid strains. I believe it helps a lot of things including cramps, anxiety, inflammation, etc. The proof I have is that I have fewer cramps when I increase my dose and also my c-reactive protein has gone down significantly. I was so convinced I talked my pain management neurologist into getting certified in cannabis "recommendation." In the state of Florida, doctors can only "recommend" cannabis, not prescribe it. It is also not legal federally so each state has specific rules. Some states are totally legal, both medicinal cannabis and recreational cannabis. But the drug companies are pouring money into blocking federal legalization. I believe it's only a matter of time.

The cannabis I buy is organic and very closely quality controlled. Same with the CBD oil. I pay more but only buy from the best and most reputable dispensaries.

Greg and I got pretty close. I helped him on the Cannabis paper he wrote. He was the person who encouraged me to start CBD immediately and we stayed friends until he passed. I spoke to him just a few hours before he died and I miss him dearly. Yes, he could be tough but he had an extremely kind heart.

I've probably said this before but I have a friend who is a neuromuscular physician. We met after my diagnosis and began corresponding. I'll never give anyone his name or the state in which he works BUT he told me I should start using cannabis even if I had to buy it on the street. This was before it was legalized in Florida. I met him through a mutual friend after she learned my diagnosis.

So I did get some from another state and started using it a year before it became legal in Florida. I still have a hard time with THC because I never drank or took drugs and my tolerance is very low. I also have damage in my ears which causes me to be dizzy 24/7. THC makes that worse so I take the THC before bed. I don't want to fall and I've had many vertigo attacks since my car accident in 2000.

You should keep doing what makes you feel the best. I've seen way too many people, with other diseases, just give up. That's not you nor is it me.
 
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