Status
Not open for further replies.

rcbaker200

New member
Joined
Sep 7, 2009
Messages
5
Country
US
State
NJ
City
Cherry Hill
Given the fact that 25-hydroxyvitamin D levels of less than 32 ng. are abnormal and have been definitely proven to lead to osteoporosis
(actually studies have shown that maximal bone strength is associated with levels over 40 ng.)
and given the fact that some research papers are talking about the positive effect of Vitamin D in preventing calcium accumulation in the nerve cell and a negative effect (I am paraphrasing some of the research),

my question is this ----

Why wouldn't everyone with the diagnosis of ALS, especially in view of the seriousness of the diagnosis, get a 250hydroxyvitamin D level and treat with Vitamin D to get a level of at least over 40 ng.

(Point of information - toxicity of vitamin D only occurs at levels over 200 ng. and would require massive dosease for close to a year. It is impossibile to happen with the prudent taking of vitamin D and with rechecking levels about every 6 months.


Robert Baker MD
 
very interesting approach... My vit D level was only 16 at time of my ALS diagnosis.
 
Not to toot my own horn, but I mentioned in another thread (my own doc makes house calls) about the importance of taking Vitamin D and magnesium to control the influx of calcium into the nerve cells, which appears to be a problem in ALS. I take 2,500 mg/day of Vitamin D (2,000 mg of Vitamin D3). Don't know if it's enough, but I will be getting my levels checked out the next time I see the doctor.

By the way, how much is a ng compared to a mg?
 
Last edited:
Hi Mike,
I don't think you can compare nanograms to milligrams. The nanogram measurement is obtained by doing a blood test to see how much vitamin D is in your blood stream. Then depending on whether your vitamin D levels were low and how low there were, an appropriate dosage of vitamin D daily would be recommended. Generally vitamin D is measured in international units i.e. you are likely taking 2500 iu's daily. Our family doctor has recommended for several years that hubby and I take at least 2000 iu's daily. And current literature is talking about upping it to as much as 10,000 iu's daily. But before anyone goes that high they should talk with their doctor. Lots of new info. surfacing about vitamin D and the benefits. I'm probably going to up ours to 4000 iu daily. Maybe Dr. Baker will jump back in with some more comments.
Laurel
 
You're right Laurel. I mean to say 2,500 I.U.'s/day, not milligrams. Sorry about that.

I'm also going to consider taking more Vitamin D. I would also strongly recommend that all PALS consider talking to their doctors about taking vitamin D, magnesium, and zinc supplements (separate from a multi-vitamin).
 
Hi Mike, what about the Zinc?
 
Hi Erica,

Zinc and copper play a major role in the homeostasis of the enzyme, SOD1, and we know that in one particular familial type of the disease, mutations in the SOD1 results in the inability of the protein to remove free radicals and/or may even create them, which causes damage to the motor neurons. It has been discovered by researchers that SOD1 is only toxic to nerve cells when it is deprived of the zinc molecule, not copper.

Extending to sporadic cases, it is theorized that protein neurofilaments (or some other agent) which have an affinity for zinc, may be absorbing to much zinc for whatever reason, and robbing the SOD1 enzyme of its zinc. This, in turn, may result in the accumulation of too many free radicals in the nerve cells, which, consequently, would cause their death.

None of this has been definitely been proven in the case of sporadic ALS, and it could be only one causative factor (calcium influx, for example), but it would seem prudent to consider a zinc supplement. I take 50 mg/day, plus 11 mg/day in my multi-vitamin. Anything over a 100 mg/day is considered toxic, I believe. Also, we don't know how much benefit the zinc supplement will have because of the brain-blood barrier, but I figure it's better than doing nothing. Please, however, check with your doctor before starting any supplements.

Mike
 
Last edited:
Mike, thank you for explaining this to me..
What do you think of the following for ALS:
Vit E
B12
Q10
Reservatrol
Are you taking the Rilutek?
Thank you again, E
P.S. Any other suggestions/thoughts are greatly appreciated.
 
Hi Erica,

I take the following supplements:

Co-enzyme Q-10 100 mg/daily
Vitamin C 1,000 mg/day
Vitamin E 800 I.U./day
Grape seed extract 100 mg/day
Magnesium 250 mg/day
Zinc 50 mg/day
Multi-Vitamin
Vitamin D 2,500 mg/day (incl. multi-vitamin dosage)
Milk Thistle seed powder 1 teaspoon/day mixed in with yogurt
Vitamin B Complex
Vitamin B-12 sublingual 5,000 mcg/day
Alpha Lipoic Acid 400 mg/day
Acetyl L Carnitine 1,000 mg/day
2 Fish Oil capsules/day

I really can't say whether or not any of these have a positive impact on ALS, some I just use for my general health. Please check with your doctor before using a vitamin/supplemental regiment.

Mike
 
Mike, thank you very much for sharing...
I just started using Vega powder supplement, it has a lot of minerals and vitamins.
 
I forgot to mention Erica that yes, I do take Rilutek--100 mg/day.
 
All I know is in the midst of my mother showing signs of ALS, a typical physical revealed she had quite a Vitamin D deficiency.
 
If you move the decimal point on mg. you get ng, I think it's 6 places but I'd have to look it up. 50,000 units of Vitamin D is 2.5 mg.

I am going to keep tabs on this forum regarding the discussion of vitamin D and hope I can contribute useful information. Although 2/3rds of America have levels less than 32 ng., it is interesting that several people have commented about really low levels in ALS.

Although 2000 units is widely mentioned as a dose, how can anyone possibly know how much to take without a level? Studies have shown that 2000 units frequently isn't enough. The LOWEST normal level is 32 ng., but just like the HIGHEST normal cholesterol level in 1978 was considered 250 mg. by the medical authorities, they are once again wrong. Labcorp recognizes the normal level as 32 ng. to 100 ng. Male lifeguards at the end of the summer have levels near 150 ng., and not coincidentally that is the highest level the human being can have based on sunlight alone, without supplemental vitamin D.

With very low levels, either OTC Vitamin D3 or prescription vitamin D2 can be taken (D3 is the identical molecule that the sun makes, D2 is the vitamin D in plants. I have tested 1700 people with 25-hydroxy vitamin D level. 2/3rds are low; I haven't tested anyone with ALS (fortunately it is an uncommon disease), but those with cancer and lupus and rheumatoid arthritis and MS tend to be very low, not just low. By the way, 2 patients, women, who walk outside 6 miles and 2 miles respectively, had levels of 105 ng. without taking vitamin D. So that is why it is necessary to get a level and follow up levels. Noone would reasonably suggest that someone take a statin drug for cholesterol without getting a cholesterol level.

I have treated people with 50,000 units of vitamin D2 a week, which is 7000 units a day. However I have gotten follow up levels in 6 months initially to make sure it didn't get too high; it never has. D3 is not available over 1000 units in most drug stores. Some vitamin stores have it at higher doses. 5000 units is available by several companies. Solgar is the one I've seen the most (it is a non-public company and I have no interest in a particular company, other companies would be just as good.) Some stores carry 2000 units but not 5000 units but will take special orders. Where I go 120 capsules of 5000 units Vitamin D3 by Solgar is less than $20.00. That's $5 a month at a dose of 5000 units a day. That dose is 35,000 units a week. I have repeated blood levels in 6 months to make sure it's high enough, as I said it's never been too high. Occasionally people have required higher doses temporarily, but that has to be done with follow up levels. As far as toxicity, it is necesssary to reach a level of 200 ng. to get side effects. That requires 75,000 units a week for over 8 months to reach that kind of level. Noone would recommend a dose like that without getting folow up levels. Some recent doses have given very high doses for a period of 3 months to "jumpstart" the level.

Although prospective studies on Vitamin D and ALS are needed, I am not optomistic that will happen soon. Insufficient studies have been done with cancer and autoimmune diseases. However it is known with 100% certainty that correction of vitamin D to levels over 40 ng. increases bone strenght and prevents osteoporosis and fractures. Levels of 52 ng. have been shown to have a lower incidence of breast cancer. Some experts recommend a dose of 50 to 80 ng. and certainly in a serious disease with ALS it would be reasonable to have that level as a goal. Remember, if you go to the beach in August, you will see lifeguards with levels of 150 ng. Anyone who suggests a level of 50 to 80 is too high is saying something that goes against all research that has been done.

So it is extremely reasonable advice to say that anyone with ALS should test their 250hydroxyvitamin D level and treat any insufficiency. Goal would be to reach an ideal level in 6 monhts. (the blood test is covered by insurance that covers blood tests, and is a simple non-fasting test.)

Robert Baker, MD
Primary Care Internal Medicine
 
Thanks for the info, Dr. Baker. I just upped my vitamin d intake to 3,500 I.U./day, and will increase it another 1,000 I.U. the following week. I haven't gotten the blood test to check for vitamin d levels yet as Medicare and Medicaid doesn't pay for it. I will have to pay out of pocket for the test, which costs over $200.00.
 
The best way to get vitamin D is by the sun. Due to that I am bed bound I take vitamin D drops. Vitamin D is needed for Calcium to work.
I saw a show on TV of a man he weighed too much and could not gt out of bed and had not been out in sun for years. he had so much bone pain thy thought he had cancer. But test showed he was low or nearly no vitamin D that was causing him to have illness causing pain and all he needed was high does of vitamin D to recover .
I read on a fact sheet with Living with ALS manuals th ALS association mailed me back in 2000 that Pals that have no or little movement should not take calcium supplements that it just stays in our blood showing Calcium high. I can not move at all and my Calcium shows high in blood work.
 
Status
Not open for further replies.
Back
Top