vitamin D

    • March 12, 2011 at 7:10 pm

      Was wondering what experiences- if any, any of you have had with vit D. during my thymus gland research I came across many articles on vid d defiency–how it is very common in most auto-immune disorders and even in the general population. vit d enhances the immune system—given this info, there is also contraversy saying it is not good for auto-immune?? anyone with personal experience? This is the vit d we would get from the sun—well if you have sun, here in maine we haven’t seen if for 5 days!!!

    • Anonymous
      March 12, 2011 at 8:53 pm

      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.


    • Anonymous
      March 12, 2011 at 11:01 pm

      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.

    • Anonymous
      March 13, 2011 at 7:26 pm

      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] [/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)
      Multifactorial mechanism

      For a discussion on these got to:

      [url] [/url]

    • Anonymous
      March 13, 2011 at 7:43 pm

      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.

    • Anonymous
      March 13, 2011 at 8:57 pm

      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.

    • March 13, 2011 at 10:24 pm

      thank you for sharing your info/experiences. Kelly you mentioned what i had been reading and was concerned about –the vitamin d enhancing verses boosting the immune system. that was my concern, if one were to have an overactive immune system, how the vit d would effect it.
      i also read through older posts regarding this and it does seem there is a large number who were tested and come back low. I have been very concerened with the whole nutrition/supplements/vitamins since getting cidp–the ivig can stop the attack, but it is our body that needs to heal and regenerate the nerves–I just want to be sure it has every thing it needs to do that. : ) Lori

    • Anonymous
      March 13, 2011 at 10:29 pm

      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:

    • March 13, 2011 at 10:48 pm

      I have read that the vit d defiency is more prominant in northern states, and that levels tend to be lower in the late spring —which makes sense that it would be lower after winter. I live in maine—-which is by no means a “sunshine ” state either. Lori

    • Anonymous
      March 14, 2011 at 2:26 pm

      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.

    • Anonymous
      March 14, 2011 at 7:44 pm

      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.

    • Anonymous
      March 15, 2011 at 12:44 pm

      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.


    • Anonymous
      March 17, 2011 at 10:10 am

      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.

    • March 17, 2011 at 6:55 pm

      most of the reputable articles i ‘ve read have stated that it is important to test where your levels are before taking vitamin d. Some have said to take it–wait two weeks, test your level and then alter the dose from there. The only problem with this is many dr’s do not reguraly test for vit d.
      If you go into the neuro talk support group site, there is a lot of information posted by a member named Mrs.D under the stickies section in that site. There are many links to numerous websites on the vit d subject. I found them to be pretty informational. Many sites have stated that you cannot get a toxic amount of vit d from the sun–but you can from supplements. There are also a few articles by pub med stating that vit d2 (the rx type) is beneficial in axon regeneration. Most of the info out there is for the d3 type (sun or otc supplements) which is suppose to “regulate” not “enhance” the immune system. PLEASE read some of the info. on it if interested in it–i am only writing here from various info i’ve read—have no personal experience with vit d at this time. Lori

vitamin d

    • Anonymous
      May 22, 2010 at 6:03 pm

      [FONT=”Microsoft Sans Serif”]i thought some of you may find this article interesting:

    • Anonymous
      May 22, 2010 at 10:21 pm

      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.

    • Anonymous
      May 23, 2010 at 10:35 pm

      [FONT=”Microsoft Sans Serif”]thanks laurel–[/FONT]

    • Anonymous
      May 24, 2010 at 12:08 am

      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?

    • May 24, 2010 at 12:17 am

      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 D

    • Anonymous
      March 19, 2010 at 1:01 am

      OK I am hearing all sorts of info on how wonderful vitamin D is. :confused:

      Does anyone take vitamin D and if yes do you notice a difference in how you feel?

      Rhonda from Canada

    • March 19, 2010 at 7:11 am

      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.

    • Anonymous
      March 19, 2010 at 7:26 am


      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.


    • March 19, 2010 at 8:26 am

      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.

    • Anonymous
      March 19, 2010 at 11:37 am

      Good Morning,

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

    • Anonymous
      March 19, 2010 at 12:03 pm

      Thanks for all the responses so far.

      KatyK…intersting to note I also have type 2 diabetes.

      I hear it is not uncommon because CIDP is autoimmune and so is diabetes.

      I will be away from computer for 2 weeks but I’ll check in whenever I can.

      Thanks for the support!

      Rhonda from Canada

    • March 19, 2010 at 8:01 pm

      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.

    • Anonymous
      March 21, 2010 at 11:13 am

      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.

    • Anonymous
      March 21, 2010 at 1:17 pm

      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,


    • Anonymous
      March 21, 2010 at 6:52 pm

      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!!:)

    • April 13, 2011 at 5:57 pm

      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.

    • Anonymous
      April 14, 2011 at 10:38 am

      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!:)

    • Anonymous
      April 15, 2011 at 4:25 pm

      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.

    • Anonymous
      April 16, 2011 at 10:30 am

      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.

Vitamin D

    • Anonymous
      June 17, 2008 at 5:45 pm

      I was wondering if anyone here took Vitamin D3 in “large” amounts (plus daily doss of calcium and magnesium) and saw a remission or lessening of attacks. I’m not talking about the common daily dose of 400 or 800Iu’s. I am talking about a person who either gets a good amount of sun year round (no sun block, 10-20 min 3X or more per week, somewhere between 10-2pm), or a person who takes roughly 4000-5000IU (or more) of vitamin D3 daily.
      I am still learning about this disease, but am taking some of my nutrient hints from other autoimmune diseases. I realize that everyone’s disease is different in how it works, what caused it, etc. There are a few small clinical trials with both MS and RA individuals who either hit remission for years or had a definate slowing of disease.
      I realized recently that I haven’t been in the sun for decades without sunscreen. I also didn’t eat or drink fortified foods very often, although I did take a multi which was my main Vitamin D ingestion. Every year I have a major relapse in Feb/Mar which is when the body is at it’s lowest in Vit D in most areas of the northern states. It just makes me go…hmmm.
      So assessing my body’s workings for many years combined with reading on various clinical trials and other research, plus reading on the effects of vitamin D on the body’s cells (and what it does to inflammation) just made me interested in what others have seen or noticed.

    • Anonymous
      June 17, 2008 at 10:23 pm

      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.

    • Anonymous
      June 18, 2008 at 11:50 am

      I am interested in how much D3 you are taking. In the US, the RDA from age 5-50 is 200IU, 51-70 is 400IU, and 71+ is 600IU. Canada’s recommendation is 1000IU.
      Do you know your serum level of calcidiol (25-hydroxy-vitamin D)? A lot of research promotes 50ng/mL to be optimal, although I have seen a few articles say that for people with autoimmune disease the optimal level should be higher.
      Again, just curious

    • Anonymous
      June 18, 2008 at 8:30 pm

      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?

    • Anonymous
      June 19, 2008 at 1:57 am

      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 😮 😮

    • Anonymous
      June 19, 2008 at 10:14 am

      Unfortunately there is little to no funding for clinical trials due to Vitamin D being a nonpharmaceutical drug (ie you can’t put a patent on sunshine). So whether Vitamin D can prevent, improve, cure, kill, be toxic, etc, might not be known for at least a decade if not more.


    • Anonymous
      June 20, 2008 at 10:28 am

      I am a bit surprised that more people haven’t tried higher doses of vitamin d, although I would guess that Dr’s go off of the US Toxicity upper limit (which has been proven wrong). Whereas Vitamin D definately has a toxicity issue, the US has 2000Iu’s as the upper limit and this is what Dr’s use, but research has shown that vitamin D toxicity is very unlikely in healthy people at intake levels lower than 10,000 IU/day. Of course, no increase in vitamin D should take place until a person’s actual dose is known. Interestingly, in MS patients, Vitamin D deficiency is common (and there has been at least one study that has indicated that individuals have lower vitamin D levels during MS relapses and higher levels in remission)…but it is also becoming increasingly common thru out the US and Canada and the rest of the world.

      So I was wondering if people tried Vitamin D because if CIDP is a macrophage mediate inflammatory response, then Vitamin D may help as it helps inhibit macrophages by suppressing their activity. Note my word “may” and not the word “will”.

      What Vitamin D also does: suppresses antibody production by B cells and the proliferation of T cells. It up regulates the cytokine suppressers of inflammatory T cells. It inhibits the pro-inflammatory cytokines. It inhibits the production of Nitric oxide by immune cells (NO is a major factor in demyelination). Inhibits the proliferation of activated and memory T cells.

      Hence my curiosity. I use to work making cytokine test kits years ago, and always thought that it was weird that I read high in one of my kits, now knowing what is wrong with me it makes perfect sense as it was a kit for a pro inflammatory cytokine.

      BTW I am in no way saying that vitamin D will cure or make anyone better, I was just curious to see if anyone had tried large doses.


    • Anonymous
      June 24, 2008 at 1:06 pm

      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.


    • Anonymous
      June 24, 2008 at 5:07 pm

      I’ve started having my 8 year old and I sit in the sun with no sun screen and no sun block. We sit in our swim suits, for maximum skin exposure, for 5 minutes front and 5 minutes back. We barely begin to turn pink, and after a month of this we only slightly have a tan (ie we aren’t getting damaging burns). We sit outside somewhere between 10-2 PM when the UVB rays are out (UVB is what “makes” vitamin D on the skin). We try to get out at least 3 days if not 4, if we get that many sunny days. This beats taking supplements in my book. I also have my girl (who does not have CIDP nor any other illnesses) eat yogurt which has Vit D in it (not all do) plus milk.
      You could always google Vitamin D and sun and see if it is something that you might find more appealing than vitamins.


    • Anonymous
      June 25, 2008 at 3:27 pm

      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.

    • Anonymous
      June 25, 2008 at 6:02 pm

      I missed that you lived in Ms. I’d never be able to sit out 5 minutes in your area without burning. People living in the southern states only need a fraction of time to sit out that northern states do to get the same amt of Vit D.
      There are other sources that I am sure your Dr will bring up.
      Good luck on finding a source!!!

    • Anonymous
      June 26, 2008 at 11:05 am

      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….