I read that low vitamin D is a precursor to MANY autoimmune diseases…even diabetes. (My mom just had some tests done & this was discussed with her)

It’s not good to boost the immune system but it’s good to support it. Meaning you don’t want to take anything that claims to be an “immune booster” but things like Vitamin D are ok because it enhances a healthy immune system.

I hope that makes sense…it does in my head, LOL.

Kelly

I was indeed diagnosed with a Vitamin D deficiency shortly after I was diagnosed with CIDP. I took a prescription Vitamin D supplement for awhile, and now take an over-the-counter Vitamin D supplement. I don’t know if the Vitamin D deficiency was a cause or an effect of the CIDP, or whether it was even related at all, as such deficiencies are fairly common.

At least in the most recent years, when I supplement with calcium it always includes some vitamin D. Over the years I have arbitrarily and randomly taken calcium supplements.

Interesting to me, “our” favorite website, over at Washington University, St. Louis, MO has a section on vitamins:

[url] http://neuromuscular.wustl.edu/nother/vitamin.htm#vitd [/url]

Scroll up or down as it suits you. If it’s any consolation, they say “…Tendon reflexes: Normal …” For classic cidp tendon reflexes are typically low or absent.

Please note that a deficiency of any number of vitamins will cause neuropathy or other problems.

For example-
Thiamine (vitamin B 1 )
Niacin (vitamin B 3 )
Pyridoxine (vitamin B 6 )
Cyanocobalamin (vitamin B 12 )
Pantothenic acid
Alpha-tocopherol (vitamin E)
Gluten-sensitivity
Multifactorial mechanism

For a discussion on these got to:

[url] http://emedicine.medscape.com/article/1171558-overview [/url]

According to the last few issues of IG living magazine, some research results were just released and there IS a connection between autoimmune and low vit D. There is more autoimmune in states that do not have much sunshine and they have also seen that if you already have an autoimmune disorder, that your symptoms will be worse if you have low vit D. I have been trying to get my daughter sunshine here in Ohio but through the window which I guess filters our the vit D. I tried. You have to be careful taking it orally as too much can cause weakness and muscle pain. This happened to my hairdresser. Even if taken orally, you need sunshine to syntesize it i guess. Is there anyone out there who can tell us more? thanks

P.S. I had Selah tested and she tested low.

I was advised by a friend who is a doctor (Osteopathic Physician) to check out my vitamin D-3 levels. We see each other socially about once a year and he is aware of my CIDP. One look at me and he suggested a blood test called 1,25 hydroxy to check my D-3 with levels between 40-70 as ideal based on current research he’d read. If it was low he recommended using a form of nonprescription D-3 called ‘cholecalciferol’ at 4000 IU/daily. I discussed it with my neuro and he was not aware of the research, however that day his nurse practitioner was with him; she had read about it and suggested I get the test. I got the test and it was well below 40. Dr. said it would ‘do no harm’ to try it and I took 4000+ IU/daily for several months and the next test showed a jump to about 60. My neuro asked me if “I felt better” and the answer, sorry to say was …”No” This was a few years ago and I still take 4000 IU/daily to keep up the old D-3. My regular blood tests have never shown my “D” to be low but I’m more aware of the need to ‘get some sun’ as I spend 90 percent + of my time indoors. That is all I know about D and D-3 ~ I asked my neuro why I can have normal D but low D-3 and he didn’t know.
I don’t want to get involved in the whole vitamin thing as it seems quackery abounds… however, my health-conscious wife (daughter of a doctor and raised in a home where ‘health’ – not medicine – was dinner table discussion) goes to a doctor who Rx’s a vitamin formulary based her personal needs. My wife already knew about D-3 and has been taking it for years but never heard of a neuro-connection. I take a multi-vitamin and my D3 fairly regular but have problems with niacin and some of the B’s. To me that says some are good for me, some aren’t, some interact with each other, and others probably don’t do anything at all. The formulary approach makes sense to me. Certainly vitamin deficiencies and over-dosing can cause problems.

I am always amazed at how many people on this forum are from Pennsylvania. Quite a few are from Ohio as well. Here in central Pennsylvania we don’t get a whole lot of sunshine. In fact, my wife and I returned to central Pennsylvania last Wednesday from a vacation in Miami Beach, and we have had sunshine on only one of the five days we have been home. I am wondering about a connection between a lack of sunshine, low Vitamin D, and auto-immune issues, including CIDP.:confused:

I am interested in this thread because I was taking 1800 IU vitamin d and was told mine was low. I boosted it up to 2800 in November 2010 and then in December started getting joint pains. Now I have terrible heel, hip, shoulder, knee pain. I went to the doc last week and my sed rate is up so he is putting me on prednisone. I was wondering if the increase in vitamin d could have made my immune system more overactive or if it is just coincidence that I started getting my new symptoms. I am cutting back a little on the vitamin d to 1800 IU again just to see. Was wondering if anyone knew if it could increase inflammation.

I am taking 5000 IU daily as D3 Cholecalciferol. I haven’t noticed any side effects yet, but I have only been taking it for a short while.

My wife is a science teacher, who wrote to the CDC asking their opinion about Vitamin D. She actually received back a [I]hand-written letter[/I] from one of their researchers. This lady said that Vitamin D is extremely important to immune system health…so much so, that we’re, as a country, in an epidemic currently. She said that vast majority of people do not have enough Vitamin D in their systems.

The most interesting thing she said was about “flu season”. She said, “Why do you think flu season is always in the winter?” It’s because, she stated, everyone’s Vitamin D levels drop in the winter, when they’re spending less time outdoors. It happens THAT quickly…within a few weeks of decreased sun exposure, your levels drop to critical levels.

However, I have to add a personal note: I’m sort of timid about Vitamin D at the moment. I started taking 2000 I.U.’s per day of V-D and 2400 mgs of calcium (Calcium should be taken with Vitamin D, they say, to aid absorption) and then about three months later developed kidney stones. When I researched the stones, several articles stated that excessive Vitamin D AND Calcium are top causes for kidney stones. So…be careful about how much you take. A speaker in this area said that the amount you need varies by numerous things, including the altitude of where you’re living. In Utah, she said we should be taking about 4000 I.U.’s per day, for a healthy adult.

Elmo

My hair dresser set out on a mission to lose 100 lbs. through diet and exercise at a gym under a personal trainer and she did it. She was advised to take a lot of vit d by her trainer. She started having headaches and a lot of joint, muscle and bone pain. She called her doctor and described to him what was going on and he tried several things and after weeks, he told her to stop the vit d and she did and immediatelhy felt better. I think that there is a fine line between enough and too much. Not sure where that is.

Thanks Alice. I upped our Vitamin D to 4000 iu’s long ago. Great to read that the articles I had read are validated in your article. I hope you are continuing to improve. Love to you and Sophie.
Laurel

My foil seems to be every time I even consider it? The clouds magically appear! Yes I take supplements, but nothing is simpler or easier than nature in the simplist form.
Yet, those durned clouds? It’s a challenge.. But? I can guarantee rain? Should I hire myself out?

Great hearing from you Alice! I take extra D3 and a little cod liver oil every other day usually in winter. In summertime I get a lot of sunshine Vitamin D.
Give yourself as much time as you need to heal completely. Nature has a mind of it’s own, but it will get the job done.
Warmest regards to both you and Sophie!

Vitamin D3 is the newest latest and best form of Vitamin D.
I take Vitamin D3, calcium and magnesium to prevent osteoporosis. I take prednisone which can induce osteoporosis. Just taking calcium alone won’t do the job.
I checked my mutivitamin and it has the D3, Calcium and magnesium at very optimal levels.
The best way to get Vitamin D3 is through sunshine but getting sunburned needs to be avoided. Since it is winter time and I am using preds I just started this year adding a quality Cod Liver Oil (Carlson’s) to my vitamin regime and only use a small amount.. Ususally I get a nice tan in the summer.
Vitamin D3 didn’t prevent me from getting diabetes type 2 thought and I suppose that’s because of genetics. Although I just found out that older people don’t absorb as much Vit D3 from the sun as younger people.
Vitamin D is actually a hormone and not a vitamin from what I understand and if Vit D is obtained naturally from the sun our own bodies prevent an overdose.
When I was growing up Moms used to give Cod Liver Oil to their children since it also contains the Omega 3 essential fatty acid and in those days contamination from mercury or PCB’s were probably unlikely. That why I take care which Cod Liver Oil I use.
I don’t feel a noticeable difference, but the combination of medicine, exercise and trying to eat and live a healthy lifstyle has made a dramatic improvement in my CIDP over the past year and 4 months. I can’t wait to start going for walks in the summer sunshine.

Rhonda,

I take vitamin D.
I noticed that I tolerated the cold, snowy, sunless winter being shut in without getting depressed while waiting on spring and sunshine.
I take it due to not getting out in the sun as we get vitamin D from sunlight.

Waiting to hear from others with their input on this.

Shirley

We are 17 for vit hydroxy test, the range is 20-100, docs like you to be at least 30, some prefer 50. (according to things I have been reading) I also have read that people w/autoimmune ALWAYS have low vit d. I also have read that keeping your vit d up helps aginst not acquiring other autoimmunes as well as cancer. Who knows? We are using this liquid drop form of Vit D3. Being that we have the leaky gut (people on steroids, antibiot, chemo have a good chance of lg due to candida) it was suggested to take this liquid form because it immediately gets absorbed by the body (malabsorption of vit caused by leaky gut, pills have to break down) This naturop. is reccomending 12 drops which is apparently the equivalent 10,000 iu daily, so 70,000 weekly. We have only been doing it for 10 days and there are so many other issues making him feel like crap I cannot figure out if it is doing any good. Anyone w/ cmt apparently is supposed to take high doses of vit C. Who knows what vit will be next, who knows if we will even be able to get them at the store any more thanks to McCain introducing a bill that these nat. supp should be a drug.

Good Morning,

I am taking Vitamin D3 – It is Great! I feel better and have more energy. Give it a try!

I take D3 5000 IU from Wal – Mart in the winter time and drop it back to 2000 IU in the summertime, as I am out doors every day in the summertime. I take it as a precaution against a second chance of GBS, since it is taboo to get flu shots. I notice no reaction either way.

Intersting thread… I will look into this for myself. I recently tried ACEs (Vit. A, C, E and siliniam. Bad side effects right away so I stopped. I do take a strong multi with lots of the B’s and have for many years. Thanks for the info.

Hi Rhonda,

I was prescribed 50,000 iu of Vit D (taken once a week) in 2008. I was having horrible cramps in my legs, back, neck….everywhere. My potassium levels were normal, however, my Vit D was 6. Hence the cramps, tiredness, etc.

During the summer, I took 50,000 iu bi-weekly as “supposedly” I get more sun. My levels are now 24 and I was recently advised to take 1000 OTC Vit D daily instead of the prescription Vit D.

Take care,

Tina

vit D helps produce healthy T-cells. Its highly recommended for autoimmune problems. Just saw this on a tv morning show recently. Now all I need is for the sun to come out!!:)

I started to take 5000 IU Vitamin D3 once I was diagnosed with CIDP. I have a friend who has had MS for many years and her neurologist had her start with a high dose of 6000 IU daily. He said that there is great new research that points to Vitamin D3 really helping neurological problems. I figure it can’t hurt and I don’t get outside as much as I use to when I was younger. I dont’ think I feel any different but hopefully it is helping me fight this horrible CIDP that I have been struck with.

I take 1000 IU/daily of Vit D3, also need Vit B12, and potassium. These are the ones I have been low in since dxed with CIDP in Dec ’10. I don’t know if I was low before dxed since I didn’t have it checked for any reason. I do have hypothyroidism that I take meds for. I never had any flu shot or symptoms of any illness before I started with tingles and weakness in my hands/arms. This is surely a disturbing disease. I am on IVIg every 3 wks and doc is really pleased with my results. I am too for the most part. I start phys therapy today to work on my balance, endurance and strength.
BTW, I have a strong faith basis and we had a “Healing Service” this past Sunday in which I was able to jump up & down for the first time in 6 months! I’m claiming a healing from our Lord!:)

I take 2800 IU daily. You might want to be careful of the dosage because you can get toxicity. When I started it, I noticed better mood, energy, etc. but it could have been coincidence. I think it is beneficial to take it.

I take 50,000 units 2 x a week, I need to get blood work done next week so dr will have for appt. I ‘ll then find out in 2 weeks to find out what my levels are.

I can’t stand to be outside to long cause of my other meds.

I am taking high doses of Vit D as per my neurologist as he thought it was necessary but I have not noticed any change in how I feel. I also take calcium and higher than normal doses of magnesium. I can’t give you the exact amounts as I am on the road this week working and only carry a pill dispenser with the pills ready to take each day, but it is higher than the daily recommended dose.

Janet, our GP suggested 2000 IU’s daily and hubby has had that for several months. Hard to sort the chickens from the eggs though. He is dramatically improving, but is it the IVIG alone or is it adding things like high doses of Vitamine D, Co-enzyme 10, and Vit B and a good multi-vitamin. Maybe the combo?
Laurel

We are so D-deficient in this country! First we stay inside all day (work, school), in the evening we go to the indoor gym, then home to watch some indoor TV and to bed. If perchance we happen out into the sun don’t forget to slather on the chemical-filled cream to “protect” you 😮 😮

My child is 4 and was dx. at 18 months, onset 5-8 months of age. He’s on 99.9 % pure calcium because of the steriods. I’m supposed to give him more vit D but it’s hard, he only likes gummy vitamins but he also has teeth decay problems. I think I’ll have to give him a gummy and immed. brush his teeth.

Lori

I think the idea of sitting in the sun is great but I don’t think Dell could do it. In the summer, it’s so hot here, we keep him inside 90% of the day. We go out in the morning for about 45 mins- 1 hour if it’s below 80.

I need to discuss this with the dr.
Lori

Kristin I had said I would let you know how much D I was getting once I got home from my travels. I take 2300 IU of Vit D each day as a supplement and then also include vitamin fortified foods into my diet. Can’t say I notice a difference but I also believe I have SAD and I know it helps with that. I crave the sun, if you can figure that one out. I can’t get enough of it….