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Old 05-19-2015, 01:00 PM #11
rockenmama rockenmama is offline
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Originally Posted by rockenmama View Post
During one of my exacerbations this year THAT is what my Vitamin D was at. I took the 50,000 once a week for I think 6 weeks. It didn't cause any of my MG symptoms, just made them MUCH worse. As far as I know the Vit D could cause weakness but not sure how much

Pam
Just found out my numbers are back to 19 so back on 50,000

Need to find a way to get numbers high and stay high
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Old 05-21-2015, 08:28 PM #12
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Originally Posted by rockenmama View Post
Just found out my numbers are back to 19 so back on 50,000

Need to find a way to get numbers high and stay high
I have posted many times on this forum about vitamin d3
first of all the 50K they gave you? **** CAN IT the 50k once a week pills from the DOC are vitamin D2, not what you want..

MY levels were Down a few years back, I did research on vitamin d3 it can help 28 different kinds of cancer as a matter of FACT 87% of breast cancer CAN BE ELIMINATED with vitamin D3.. don't let everyone tell you they get cancer or this or that because it is hereditary,, because in reality? grandma and mommy could also had a crap diet and have been low on vitamin D3.....

First of all think of a simple fact.most people that go outside do not get colds or fevers in the summer why??
hmm vitamin d3 absorbed via their skin
fall winter spring cold flu season..

Get the vit d 25 test done as I prezume you already have knowing your levels.

I get then vitamin d25 test EVERY 3 months..
I also take 6000 IU per day for over 4 years now yes 6000 not 600
My sons take 2000 IU per day and have had no colds and or flu in the same time frame.

I also have Lambert Eaton Syndrome (here they put us in the MG forums hence why I post here) in which 65% of people develop small cell lung cancer,, so far a little over 2 years and no lung cancer..

I actually had nodules on my lungs that Disappear from my cat scans

Bottom line my Cancer doctor and family doctor and neuro all told me with a chance of cancer,, get your level as close to 80 as you can

My level is 78.6 as of last check I simply every morning at 9 am take 3 2ooo IU gel caps and that is all.

With the lambert eaton and sometimes swallowing getting hard the gel caps are great i just pop them in my moth and chew them up

http://www.amazon.com/Nature-Made-Vi...in+d3+gel+caps

so that's a measly $13.00 for an 83 day supply there

it is the most cost effective thing you can do for your body

get your levels checked every 3 months and see where they are
again talk to your doctor
Also it fights Parkinson’s disease and stops it in its tracks My old boss just was diagnosed and his doctor told him to get a sun lamp asap.. he works inside all day , I got him on vitamin d3 daily and his doctor agreed as well..

there is a dramatically decreased incidence of a degenerative disease like Parkinson’s (67% lower risk) in people with the highest level of vitamin D.

http://www.pdf.org/en/statements_vitamind

http://www.parkinson.org/Parkinson-s...-and-Vitamin-D



http://www.medicalnewstoday.com/articles/273728.php

http://sciencenordic.com/cancer-pati...ls-live-longer

http://www.cancer.med.umich.edu/news...minD-011.shtml

https://www.vitamindcouncil.org/heal...ns/influenza/#
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Old 05-22-2015, 02:04 AM #13
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Thank you Dave, that is some of the clearest, most concise information that I have read.
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Old 05-22-2015, 04:55 AM #14
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I did research on vitamin d3 it can help 28 different kinds of cancer as a matter of FACT 87% of breast cancer CAN BE ELIMINATED with vitamin D3.
I am curious about your evidence for this.

To quote from the Abstract of a recently meta-analysis of clinical trials looking at the possible benefits of Vitamin D supplementation:

"The effect estimate for vitamin D supplementation with or without calcium for [...] cancer (seven trials, 48 167 patients) [...] lay within the futility boundary, indicating that vitamin D supplementation does not alter the relative risk of any of these endpoints by 15% or more." The source of this quote is http://www.thelancet.com/journals/la...212-2/abstract .

What the authors concluded from their analysis was that vitamin D supplementation for 48167 (a big number!) cancer patients provided no statistically significant improved clinical outcomes.

Would you like to comment on this?
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Old 05-25-2015, 07:43 PM #15
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Originally Posted by kiwi33 View Post
I am curious about your evidence for this.

To quote from the Abstract of a recently meta-analysis of clinical trials looking at the possible benefits of Vitamin D supplementation:

"The effect estimate for vitamin D supplementation with or without calcium for [...] cancer (seven trials, 48 167 patients) [...] lay within the futility boundary, indicating that vitamin D supplementation does not alter the relative risk of any of these endpoints by 15% or more." The source of this quote is http://www.thelancet.com/journals/la...212-2/abstract .

What the authors concluded from their analysis was that vitamin D supplementation for 48167 (a big number!) cancer patients provided no statistically significant improved clinical outcomes.

Would you like to comment on this?
Sure most doctors are paid by big pharma hows that??


http://healthyprotocols.com/2_vitamin_d.htm

https://www.youtube.com/watch?v=9FMlQeH8RFA

https://www.youtube.com/watch?v=5Q7DdWBlHsc

https://www.youtube.com/watch?v=CAtsKU-FmvU

https://www.youtube.com/watch?v=DBaaByPnjuM


and loads of other places
hey? don't want to take it not my issue
I take mine and have had NODULES in my lungs disappear that is all the proof I need.plus my neuro and cancer doctor say TAKE IT
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Old 05-26-2015, 03:11 AM #16
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As always with these sort of things, you either have faith in the establishment or not.

Statistics can prove anything, depending on where you start from, etc. Personal conviction can override that common sense.

However, the establishment (maybe pharma influenced) says that statistically there is no evidence of Vit D helping against cancer.
On the other hand, keeping your Vit D levels up (so long as you don't overdose) is not going to hurt you, and is going to make you healthier. If it also helps against cancer... that is a plus.
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Old 06-02-2015, 03:50 PM #17
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Hi JulieJayne, how did your appointment go?
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Old 06-03-2015, 02:13 AM #18
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Hi JulieJayne, how did your appointment go?
Disasterous!

He suggested that 800 iu Vit D would put that right He suggested that Vit D deficiency was the cause of ALL my problems. I pointed out the Diplopia. Oh, that must be a seperate issue... see an eye doctor!

My partner asked about seronegative MG? He said that was only a possible if there was a clinical diagnosis. And for him that meant Ptosis and Binocular DV.

So weak leg muscles...can't be MG. Lack of facial expression... can't be MG

We asked how it was possible that Mestinon reduced the symptoms so dramatically. "Don't know, can't explain that. But it is not Myasthenia."


On the positive side? He said keep taking the Mestinon if it helps, and yes increase it as much as you like it can't do any harm .
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Old 06-03-2015, 06:10 AM #19
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Sorry it went so bad
Was this a neurologist? Is he familiar with MG?

Well, maybe it's a good thing to see an eye doctor. Sometimes if we/they (patients and docs alike) focus to much on one thing, there isn't much room for anything else.
If this doctor sees something he/she recognises as MG, you can take that back to your neurologist. Or a new neurologist if that is a possibility.

One thing I do believe in though, is that if a patient has problems that have a significant effect on daily life, it's up to the docs to find out what the cause is.

I do not know if Mestinon working is only possible if you have MG.

It's hard if you're seronegative that's for sure (I don't know if you are of course)

Just to let you know, I did not have any ptotis the first years of my disease and I am sero positive for multiple antibodies. My ptosis only started after a severe exacerbation.

Hope the vitamin D helps.
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Old 06-04-2015, 04:53 AM #20
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Sorry it went so bad
Was this a neurologist? Is he familiar with MG?
Was this a neurologist? Well he claims to be. In fact he is THE MG specialist of the Netherlands! He is in charge of major European wide MG projects! He leads the MG unit at a leading Teaching hospital.

Heaven help us all if this is the level of expertise!

I have already seen a Neuro-ophthalmologist, and whilst I might go back and see them again, it seems pretty much pointless, as they will not recognise Bilateral Monocular Diplopia, let alone a variable version thereof. Of course if they won't consider it possible, they will NEVER find it because they just shut their eyes.

Quote:
One thing I do believe in though, is that if a patient has problems that have a significant effect on daily life, it's up to the docs to find out what the cause is.
Yep, I used to believe that too. But it appears not to be true. Instead if the docs can't fit you into a convenient box on the computer, they have invented a new one... it is in your head!!!!

Unless I can think of some other way to get them to pay attention, it seems that I simply have to wait for several years until I have Ptosis or Myasthenic Crisis. Otherwise I am at a dead end...
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