Vitamin D

[Judith]

And about Calcium in the blood? That's an easy blood test. If you don't eat enough calcium, your bones will put more into your bloodstream. The body carefully regulates blood calcium, because the muscles need it for normal functioning. The only way a person would have excessive calcium would be if they had a tumor in their parathyroid gland, or another serious illness. Otherwise, not taking calcium is really dangerous for PALS, because we are already at high risk for fractures due to immobility.

LAGAL,
I had lab work done, and for the first time ever my blood calcium was on the high side. My GP told me not to take anymore calcium because it could cause kidney stones. I have found that my Vit. D level is low "18."

Judy

 

[drnathansmith]

Well, I wish things were as simple as parathyroid tumors, calcium blood levels, and kidney stones, which is nice generalization and summary for most individuals, but unfortunately it's much more complicated for ALS patients. Although the biochemistry is not fully understood (YET) the basic concept is this.

-The liver and other cells makes a substance, a type of albumin, that binds free calcium from being easily accessible to cells (especially neurons).

-Vitamin D regulates how much calcium we are able to absorb from our intestines and importantly, it also regulates to amount of the calcium binding protein we are able to produce.

-Then there is another player in the game called NFkB (nuclear factor kappa B) who is involved in inflammation and apoptosis (programed cell death) pathways.

-Not surprisingly, NFkB is elevated in ALS patients, but what is surprising is that recent research suggests that NFkB also negatively affects the ability of the albumin to bind the calcium in the blood leading to a highly active form of free calcium.

-Calcium is important to us here in ALS because it is one of the key players in activating apoptosis of neurons. On top of that, it appears that people with the non-familial type of ALS (the population of patients estimated to make up ~90 percent of patietns) may have a genetic receptor defect which further sensitizes us to the calcium. Each times this occurs it further stimulates NFkB.

-Some of these recent studies suggest that COX inhibitors (anti-inflammatories) like ibuprofen (not tylenol-acetominophen as that is a CNS pain suppressant) may actually prolong life and reduce symptoms of ALS. This makes since because when you suppress COX you also suppress NFkB.

No one really fully understands the disease and there are multiple new genetic changes that have been identified in the neuronal cellular receptors that may be promising targets for future therapies, including cannabinoid (like THC) receptors.

 

[abbas child]

drnathansmith,

So if I understand what you're saying, being on a daily regimen of Celebrex is a good thing. Taking 2,000 iu of D--is good? And, is taking Calcium supplements then, harmful or not? Would a lowered amount of Calcium Citrate be better than the higher levels often stated, if taking any supplement for Calcium is helpful? Just trying to get an idea about whether or not to make some changes.
Thank you!
Ann

 

[Alyoop]

Hi Ann , ibuprofen is not a COX 2 inhibitor like Celebrex is. The use of COX2 inhibitors are now banned in many countries due to the Stroke and cardiac side effects. Ibuprofen is much safer and works by a different mechanism.

Vitamin D can be toxic in large quantities and should be used sparingly. I know that no more than 1.25 mg should be taken a month, not sure what that is in IU.The best one to take is Cholecalciferol.

A recent MS study day I went to explained that too much vitamin d was exacerbating MS symptoms. Not sure if the same study would in any way connect with ALS. But being careful with vitamin D is prudent, as is never using a cox2 inhibitor.

Aly

 

[abbas child]

Thanks Aly. I was trying to make better sense (as a layperson) of what drnathansmith was saying. I can't take Ibuprofen due to stomach bleeding. Actually I'm not taking anything at the moment, but have Celebrex on hand.... and tylenol. But my focus was really concerning what he said happens with Calcium-- with regard to ALS.

In an earlier page of this thread there was a statement regarding the kinds of Magnesium supplements. According to that information, I ordered a different Magnesium last night. Doggone! I'm trying to do this the best way. Happy bones, you know.

 

[Alyoop]

Ann it's goobily gook to me as well!
Aly

 

[Marjorie R. Wilcox]

It was announced in the news a few weeks ago that there has been a surge of vitamin D authorizations from doctors. I am one of those that was on a regimen of 50,000 per week for a month, and then 1000 per day since. I tested very low. The news said that it has been proven that anything over 600 units per day is not good for our health!

You all have noticed that "they" prescribe and then take it back when it is found out not to be safe.

This week on radio with Dr. Dinadell (sp) he said that hormone therapy for women entering their menopause has been proven to cause blood clots, heart attacks, and breast cancer. I am SO glad I refused it 15 years ago. The doctor thought I was nuts. I'm glad I stuck to my guns!

Dr. Dinadell (sp) also said that vitamins aren't good for us unless we get them from our food. There you go. Be smart.

 

[Lovely Laura]

I have not been diagnosed with ALS but as soon as my neurological symptoms began I was advised by the Neuro to start taking Vit D daily along with B complex and folic acid. He mentioned that this were all important for brain and cellular function. Any one no more about the benefits of CoQ10 at the cellular level?

 

[abbas child]

Laura, I've read too many sources to give you a "where", but I did read that CoQ-10 is not absorbed from supplements. Of course, I've been taking it for years.

Marjorie, I was using bio-identical hormones for many years. They require blood testing every 6 months and very slowly do raise bone density (taking four years was what I was told and it was true for me). The key is that there are three kinds of estrogen in a human female, whereas the pharmaceutical drug has only the one which is harmful when taken alone. The type of estrogen which is the safeguard is expensive, and recently the government decided it is unnecessary, so insurance stopped covering it.

I'm not certain, but I think that everything I've read to do for better health in regard to supplements, later was said to be false.

 

[Alyoop]

Ann is correct Coq10 would work in theory, but they cannot get it into the cells. I asked a neurologist at a conference recently. A. Clever chemist came up with a novel way to change it slightly and get it into the mitochondria, where they hoped it could greatly improve parkinsons. The clinical trial was unfortunately negative. It is a total waste of money. It's expensive here.
HRT is known to be risky. My GP will not prescribe it. His wife got some from her GP, and now has terminal breast cancer. Sure may not have been the HRT but really sad. When I last went begging for it, he told me the story, and I promised to never ask and never touch the stuff.
Vitamin D as I said is trendy , but watch the doses, don't treat them as Just a vitamin! And cholcaciferol, which I think is D3 is recommended as the best ( something to do with calcium, but I had lost my concentration on that part of the lecture.
Vitamin C is a good antioxidant and has been found to improve some neuropathies in high doses, so I use it when I remember.
Aly

 

[abbas child]

Aly, thanks for the D3 information. I do also take that, and was told as late as this September to take 2,000 IU--but your more common sense approach (in other words, newer information) will probably soon become the standard. And the D3 is needed for calcium absorption--"they say". We can only do what either is common sense or whatever is the latest standard and hope it is helpful rather than otherwise.

 

[tdamess]

i cut down once the numbers are up instead of everyday 2-3 times a week i dont eat a lot of foods very picky lol ... but vit.d comes from the sun not food people in the north dont get enough sun

 

[Judith]

I was told by my neuro that 2,000 IU was acceptable to take, as my Vit. D level was at 18.
I was taking it for a while, but stopped the last few months. No reason, just tired of taking stuff.:-|

Judy

 

[Marjorie R. Wilcox]

We eat nutritious foods and take no vitamins..... no prescriptions.... wonderful blood pressures mine 100/57 ...age 62
Not bragging, just celebrating. Doctors rave over our great blood tests. One of us diabetic (he eats no white flour, pasta, or artificial sweeteners.).... with A1C at 5 with no insulin or pills... colesterol (sp) at 100 Don't waste your money on supplements.

 

[Alyoop]

Marjorie. You often post about your healthy diet etc. I know people have asked you to post exactly what you do. Any chance of writing it all down and adding it to a forum like " stories of hope" . I would be interested.