Supplements I am taking which I believe are helping me

[danr47]

Some of the substances I have been taking:

BAC = Beyond-a-century.com
smi2le = smi2le.biz
lef = lef.org


In divided dosages, three times daily in most cases:
NAC should be taken on an empty stomach.


N-Acetyl-Cysteine(NAC), 1500 mg, capsules -- BAC
K-R(+)ALA (Potassium R-lipoic acid), 750 mg powder, Smi2le
Acetyl-l-carnitine (ALCAR) 4 grams; powder mixed in water, Smi2le
Biotin 8mg; powder; BAC

Green tea extract, 5 capsules, Rexall Brand... Wal-Mart
Lycopene 40 mg, Spring Valley brand... Wal-Mart
Timed Release B-100, one every 8 hours... Wal-Mart
Carnosine -- 1200 mg powder --- Smi2le

Inositol Hexanicotinate -- 500mg powder -- BAC
Calcium Pantothenate -- 1000mg powder -- BAC

1 longevinex capsule; helps to active sirtuin genes (longevinex.com)
(This is taken with 500mg quercetin to inhibit conjugation)
Quercetin available at BAC


Fish/Flax/Borage Oil Combination -- 4 caps -- Rexall Brand -- Wal-Mart
Bilberry extract -- 3 caps -- Rexall -- Wal-Mart

Ginkgo Biloba; 240 mg; tablets; Spring Valley; Wal-Mart

Boswellia powder (anti-inflammatory); 3/4 teaspoon; BAC

standard multi-vitamin w/out iron

zinc 50 mg

calcium/magnesium

dilauryl thiodipropionate -- 400 mg; lef.org -- wipes out Hydrogen Peroxide
thiodipropionic acid -- 440 mg; lef.org
RNA powder -- 1000mg; lef.org

DMAE bitartrate 1/5 teaspoon; BAC

High Gamma Vitamin E; 2 capsules; Wal-Mart

Ester-C; 4 grams powder; BAC

tocotrienols; BAC
astaxanthin; BAC
bacopa monniera; BAC

chromium polynicotinate (ChromeMate capsules); 800mcg; BAC

benfotiamine 600 mg, BAC

Deprenyl (selegiline hydrochloride) 1/3 of 5 mg tablet; mastersmarketing.com

====
Future additions: NtBHA, EUK-189

 

[Carol Deboer]

All I can say is WOW! Holy crap man, you must spend all day swallowing ...... sounds like you are a slave to all of this, too bad. You must be very rich, because you would need a small fortune to take all of this. Don't be taken, the outcome may be the same, it was for us. Too bad you have been talked into spending thousands of dollars for stuff that may or may not help you. If you feel that you are reaping some benefits, well, good for you. It will be shortlived. There are other answers which you will find out in due time. Sorry...

Carol D.

 

[danr47]

Re:

[quote:b670471dad="Carol Deboer"]All I can say is WOW! Holy crap man, you must spend all day swallowing ...... sounds like you are a slave to all of this, too bad. You must be very rich, because you would need a small fortune to take all of this. Don't be taken, the outcome may be the same, it was for us. Too bad you have been talked into spending thousands of dollars for stuff that may or may not help you. If you feel that you are reaping some benefits, well, good for you. It will be shortlived. There are other answers which you will find out in due time. Sorry...

Carol D.[/quote:b670471dad]

I haven't added it up precisely, but I'm guessing I'm spending about $150 per month or so. When you buy things that don't taste too nasty in powder form rather than capsules, you really save a lot of money.

I don't expect to be able to cure my condition on my own. I think that there is a real possibility that the symptoms of the disease and its progression may possibly be altered, such as what is possible for people with parkinson's disease, for instance. This is what I am trying to do.

I know that people like to "poo-poo" natural substances. They don't realize that most of the studies showing potential benefit for diseases like ours involve natural substances rather than pharmaceuticals. Pharmaceutical companies cannot patent something like R(+)ALA or ALCAR, and thus are not going to spend hundreds of millions of dollars studying them if they cannot make a profit.

For instance, see the study below on ALCAR:

Acetyl-L-carnitine shows neuroprotective and neurotrophic activity in primary culture of rat embryo motoneurons.

Bigini P, Larini S, Pasquali C, Muzio V, Mennini T.

Laboratory for Receptor Pharmacology, Mario Negri Institute for Pharmacological Research, Via Eritrea, 62, 20157 Milan, Italy. [email protected]

We evaluated the role of acetyl-L-carnitine (ALCAR) in protecting primary motoneuron cultures exposed to excitotoxic agents or serum-brain derived neurotrophic factor (BDNF) deprived. To exclude that ALCAR works as a metabolic source, we compared its effects with those of L-carnitine (L-CAR), that seems to have no neurotrophic effect. A concentration of 10 mM ALCAR, but not L-CAR, significantly reduced the toxic effect of 50 microM N-methyl-D-aspartate (NMDA, % viability: NMDA 45.4+/-2.80, NMDA+ALCAR 90.8+/-11.8; P<0.01) and of 5 microM kainate in cultured motoneurons (% viability: kainate 40.66+/-10.73; kainate+ALCAR 63.80+/-13.88; P<0.05). The effect was due to a shift to the right of the dose-response curve for kainate (EC50 for kainate 5.99+/-1.012 microM; kainate+ALCAR 8.62+/-1.13 microM; P<0.05). ALCAR, but not L-CAR, significantly protected against BDNF and serum-deprivation reducing the apoptotic cell death (% viability respect to control: without BDNF/serum 61.8+/-13.3: without BDNF/serum+ALCAR 111.8+/-13.9; P<0.01). Immunocytochemistry showed an increase in choline acethyltransferase and tyrosine kinaseB receptors in motoneurons treated with ALCAR but not with L-CAR. These results suggest that ALCAR treatment improves the motoneurons activity, acting as a neurotrophic factor.

PMID: 12183043

 

[Theresa2004]

Hi, I have been reading exchanges here off and on as some of the frequent visitors may recognize me.
I have no medical background, but I read the lists of pills you take, and I have to agree with Carol. WOW.
If people don't experiment, no one will truly know what can help and what can't. Fine, that is your choice and it shows you are a fighter.
Many ,if not all of the frequent participants on site are either dealing currently with the disease ,learning or have learned all the medical jargon and lingo which comes along side, as I expect you are also.
I am here for my own personal reasons, and unfortunately am not well versed in the medical terminology.
My father is a retired chemist, and I doubt he could decifer what you have written here. I pride you and encourage you to use this forum, as I said, each individual has their reasons for being here, but if I may make a suggestion, sharing your ideas is a very important part of this group, asking questions, but I think you may be more effective if you could break down your research into simple laymans terms.
I am not aware of the education of many of the users to this, but I don't believe we have a rocket scientist on board the run away jet.
Keep it within laymans terms for the rest of us to understand. Don't give up on your quest, but if we are to learn from you, we have to understand what you are writing.

 

[Theresa2004]

Hi, I have been reading exchanges here off and on as some of the frequent visitors may recognize me.
I have no medical background, but I read the lists of pills you take, and I have to agree with Carol. WOW.
If people don't experiment, no one will truly know what can help and what can't. Fine, that is your choice and it shows you are a fighter.
Many ,if not all of the frequent participants on site are either dealing currently with the disease ,learning or have learned all the medical jargon and lingo which comes along side, as I expect you are also.
I am here for my own personal reasons, and unfortunately am not well versed in the medical terminology.
My father is a retired chemist, and I doubt he could decifer what you have written here. I pride you and encourage you to use this forum, as I said, each individual has their reasons for being here, but if I may make a suggestion, sharing your ideas is a very important part of this group, asking questions, but I think you may be more effective if you could break down your research into simple laymans terms.
I am not aware of the education of many of the users to this, but I don't believe we have a rocket scientist on board the run away jet.
Keep it within laymans terms for the rest of us to understand. Don't give up on your quest, but if we are to learn from you, we have to understand what you are writing.

 

[Theresa2004]

sorry if this went twice.

 

[bear2]

Hi all,

I too was overwhelmed with trying to comprehend that which danr47 was trying to convey to us. Some of it I was able to follow but you lost me about half way through. I hope that you are able to come up with a combination that works for you. Perhaps you really are on to something. That would be truly wonderful!

I am wondering if any of you can tell me:
My dad is losing his strength in his arms but continues to comment that he has no pain. Is this a normal thing? It has been 2 months since his diagnosis. 8 months since his symptoms began. Is it possible that things will just eventually cease functioning with no pain involved? I know that this may sound naive but once again this is all new and if you don't ask you won't know. I know that each case is different and that what one patient experiences won't necessarily be what the next person experiences, but we really don't know what to expect.

Thank you all for your patience and wonderful support,

bear2

 

[Carol Deboer]

Hi Bear 2,

I have wrote to you 3 times today, and My stupid computer is infected, and I have lost all 3 letters. Henry had no pain in his arms either in the beginning. In fact, he has just started to take pain meds now after almost 8 years with this als thing. Believe me, everyone is different, and some people willl experience pain early on in the disease. It is hard to predict, but, if he is in no pain now, good for him. Henry was pain free for many years. He had much weakness and loss of movement, but had very little discomfort. I talked to a lady in Sarnia, that has had als for two years now, and she has no pain. However, when the motor nuerons start to die off in the neck, shoulders, back, and legs, you will have some pain. You try to compensate more for the lost muscles and put much stress on the ones that aare still good and functioning. That is normal. As I said, no pain, thats good. You will find out with time, how to deal with this als thing, and you will become a master at it. I am a manage for a large corporation, well schooled, and have many staff under my employ, but I still feel less than informed at times with this als. It is a learn as you go program. A great hands on, co-op on the job thing. Anyway, you might have some problems with pain, who knows, everyone is different, but for now rejoice in the moment. Good luck to you and your family. Remember, you will become a master at modifying and learning a new way of life. It is not all bad, you will also find that out. Take care, and I will be thinking of you.

Stay Strong,

Caro D.

 

[moe]

back from 2 day hospital stay

HELLO EVERYONE,
MY HUSBAND JUST LEFT THE HOSPITAL SAT NIGHT. WENT IN FOR LETHARGY AND SHORTNESS OF BREATH. RAN A CAT SCAN ON CHEST AND DID NOT FIND ANYTHING. SAUD DEEP BREATHING ISNOT GOOD, SUGGESTED FEEDING TUBE. HE IS VERY RESISTANT TO THIS, NOT HTAT I BLAME HIM. HIS VOICE IS VERY FAINT NOW AND BREATHING SEEMS MORE DIFFICULT. CHEWING AND SWALLOWING MORE DIFFICLUT. THE DOCTORS PUT HIM ON BREATHING TREATMENTS OF ALBUTEROL WITH A NEBULIZER. I GET REALLY SCARED AT TIMES WHEN THE DISEASE TAKES ANOTHER TURN. SOMETIMES I CAN'T REALLY BELIEVE ALL THIS IS HAPPENING. HE SOMETIMES TAKES IT WITH A GRAIN OF SALT. STILL SMOKING HE IS, I GUESS THATS ALL HE HAS RIGHT NOW. WAITING ON OUR COMMUNICATION DEVICE. SUPPPOSED TO BE IN NOVEMBER. DOCTORS AT HOSPITAL ASKED US IF WE CONSIDERED AND TALKED ABOUT TRACH. DOES ANYONE HAVE ANY INFO ON THE STEM CELL RESEARCH THAT THEY ARE PERSORMING IN CHINA. ALL I KNOW SO FAR IS IT COST 25,000 DOLLARS YOU PAY AIRFARE. YOU STAY FOR A MONTH WITH ONLY 1 FAMILY MEMEBER. A MAN FROM U.S.A. CHICAGO,ILL HAD IT DONE AND IS SWALLOWING BETTER AND SPEAKING BETTER AND HAS REGAINED SOME STRENGTH. IF ANYONE HAS HEARD PLEASE INFORM. WE ARE BOTH GETTING TIRED AND I KNOW HE IS MORE TIRED THAN I .

GOD BLESS
MOE

 

[Al]

Pain

Hi Bear2. I like your dad am losing strength in my arms. I get pain in my hands occasionally and if I overexert myself they will cramp up and then they will hurt. My calf muscles get pain also. Just about anytime I touch them they feel sore. Not a great deal of pain but it is there. I notice when I stand still for a few moments they start to ache. Moving around seems to help. Fishing was ok on the weekend but I can't catch the end of the worm to bait my own hook. Needed help with that and switching lures. Can still reel in though. Using a larger rod and a reel with a large winder helps. Didn't catch anything but it was still a good time. Computer is still out being fixed so won't be able to post much. By the way did everyone in Peel Region see that the Als Society is having a Town Hall type meeting tomorrow evening to promote ALS knowledge in the community. I can get the address if anyone wants it to attend. It is open to the general public as well as all of the people involved with ALS from our side. The info might be on the ALS Toronto website as well. Well gotta go so take care everyone.

 

[Jane]

Hello Bear 2

My sister had a great deal of pain in arm at the beginning of this journey and continues to have that pain She takes celebrex which does give some relief.
She also had neck and shoulder pain which has improved somewhat. (perhaps the celebrex has done more for that than the arm pain). Good to see Carol, T bear, and Fisher posting again. Miss all of you when you are not on the board.
Take care all Jane

Attitude is sooo important in this battle! Keep a good one everyone!

 

[Carol Deboer]

Hi Jane, (and all) xoxo

How are you doing? The weather has been so wonderful the past few weeks that I wish I would have taken my holidays in
September. You never know, do you... Oh well, Henry has been outside everyday and that is great. His nurse takes him for a walk every afternoon, and tommorrow they are going to the Bluewater Bridges for a walk. The care-a-van picks them up and drops them off. It is so nice for him to get out. He is dreading the winter, as am I. He is not doing too bad, we go to London for a check up next Tuesday, so we will see how his status is then. He is doing good with the feeding tube, but, it keeps me awake at night. His bladder fills up quicker, and it makes his body temp. rise. I don't know why, but thats what happens. Overall though, he has adjusted to it quite well. He cannot stand at the counter anymore, that stopped about 3 weeks ago, his legs will not hold him up for any length of time now, not unlelss we are holding him up. He has lost most movement in his legs, right leg does not move at all . Just another part of this als thng. How are things with your sister? Hope she is doing fine, or at least managing. Anyway, I have to go to work now, but just thought I would check in with you. Have a great day all !

Love, Carol

 

[Jane]

Hi Carol (and everyone)

I'm glad to hear Henry is able to get out winter will be here too soon and then it is so much harder.
Sis is losing ground. Generally weaker all over, hands (thumbs) pretty much gone, buttons, zippers, tying shoes, buckles all things of the past.
Can still eat with great care, but water is beginning to be a bit of a problem. One foot is dropping, she does not want a brace. Uses cane for short distance but w/c for all other occasions, and walks with great care. Speech is almost gone, comm. device is in the works. and she is very tired all the time, however breathing is not SO bad yet.
We just take each day as it comes and be thankful for the good things and strength to get through the bad.
Take care, have a lovely Thanksgiving (we have much to be thankful for) even though we all face this horrible disease. Love Jane

 

[rcharlton]

I'm revisiting this post to try and get an update from Dan47 on how all of his supplements are working a year later.

Dan47 - are you still visiting this post?

 

[upila]

Hi Dan47,
I did not see the CoQ10 in your list.
My father has been on a similar regime, but we decided no NAC, yes CoQ10 (1,200 mg - the clinical trial version quality)
Without a doubt I have to say, this has been most beneficial, a year since diag and 2.5 yrs since first sumptoms.
But, now he is also on a Lyme med, since he tested positive, so will see in few weeks what the results are.