I went to a new doctor because I did not feel the ones I have gone to take me seriously. I was very sick. A lot of pain, Tiredness etc. worse than usual. I really liked the dr. he listened to me and took blood tests and it showed I was deficient in vitamin D. He prescribed high potency D pills I already take D within my daily vits. But any way after the first pill I felt a lot better. Its been 3 weeks now. I still have pain but that horrible flu feeling is gone. Just a thought for you guys.Glad to hear you are starting to feel better!With summer approaching...please keep a close eye on your vitamin D intake
I think the info on vit. d is interesting because I have a number of autoimune stuff. I know I will never be cured but any little bit helps and I have had the opportunity to bring it to the attention of others. I am lactose intolerant, plus live in the Northeast. My 86 year old Father who has been a health food nut freak vitamin taker all his life and has the body of a 30-year old, sent me information that there are different types of Vitamin D - numbered. And that D3 is the one automimmune patients should be taking. Anyone ever heard of specialized Vitamin D before? I thought it was just one Vitamin, D. It's alway something. The correlation between folic acid and homesteine levels of the heart and autoimmune is amazing too. I think it could make things worse, 65. My RD tests every few months. I have had to go on mega doses of Vit D due to very low #'s. But I am also anemic, so I still feel tired and achey even after the mega doses. But, it's worth a try, I think. I am just starting my investigation into the viatmin D controversy. Lori - Again, I don't buy into the standard theory that our bodies just randomly start attacking itself. A growing number of researchers have now conclusively shown that myco's (pathogens) are found in the synovial tissue of RA patients. As for the diabetes, my husband is now battling type 2 -> and recent studies have shown type 1 and type 2 are MUCH more similar than they thought - ie. the inflammation can be REVERSED with natural antimicrobials and the pancreas will now produce insulin correctly. Of course, Big Pharma wants a shot you have to take every 4 months - but that's a different arguement. Even Alzheimers has been proven to have mycoplasma's in the plaque of the victims. To me, it looks like almost every 'chronic' illness out there can be traced to an intracellular infection our bodies do not/cannot fight off - > probably because of multiple problems at the same time, ie. stress, leaky gut, a viral &/or bacterial infection going on at the same time. GoGo! My understanding of the D controversy is minimal - but I gaurantee you I'll know more in the next month or 2. I need to make a decision on which advanced protocol I want to do: the Marshall Protocol (MP) who are rabidly anti-D and the CPNhelp protocol who seem to be rabidly mega-D. This is a decision I do not make easily. I feel that making the wrong decision could seriously jeapordize my chance of a true 'cure'. Treavor Marshall had an AI disease that could be fatal. He's some sort of engineer type and he researched his way into a 'cure'. In fact - these are the only guys out there saying these diseases are curable at all. His program is cutting edge and is still being revised. The only thing making me seriously consider this because of the hellacious dietary and sun requirements is a person I've spoken to and trust is on this program and he tells me of a person who so totally believed in AP and it did not work for them FOR 9 YEARS; until they cut out the D totally and did the MP. I know of others too - people having minimal responses to AP but believing in it so badly that they go to the extreme MP and it finally works. So....D is a major component. The MP people believe that D is not a vitamin at all but a powerful steriod hormone. And we all know the hormone link. The CPN people, on the other hand believe massive doses of D is the only thing that will get the lymphocite (???) cells to cough up the last of the infection. These myco's are incredibly hardy and can outlast multiple rounds of antibiotics. The only way to beat this disease totally is to heal your body enough so it is well enough to kick the last vestiges out on it's own. These guys are lead by Dr. Statton of Vanderbilt and a couple other hotshots - Sentef who healed his own RA, some dude in the UK. These guys believe that the only way to do that is will mega, and I mean MEGA, doses of D. Something like 100K IU's a day. The other problem is that these guys patients adore them - I mean, those MS people getting out of wheelchairs or those in the other camp - hate, hate, HATE the 'other side'. If you lurk on their websites you will see snippy things sent to the other side all the time. There is no real open discussion - and if you question them, they get all defensive. Not exactly reassuring to those of us trying to figure out which advanced RA cult we want to join. :-) I forget who asked - but it is more than 1 test. The D tests are a set of 4 tests. I had them done at the U and was surprised they even knew what I was talking about. I've only seen the results of one (low) and not the others. (It's somewhere in all the paperwork I brought with me :-) When I do - I'm going to post on both boards and get a response. This set of 4 is similar to the thyroid set of 4 that truly determines if we have hormone problems. Pip P.S. Lori - did you save any of the studies you came across? Can you send me the URL's? Actually - if any of you ever come across a study that seems interesting - please feel free to forward it to me. Thanks in advance, Pip Jeanne, Are you sure it's a world wide problem? It's pretty much just Americans and other First World countries into the 'no sun' thing. And they put D in EVERYTHING now - vitamins, juice, water, cereal etc. Pip P.S. What were your potassium levels? That can cause a lot of muscle pain.
as most of what you need, you get from the sun. If you are out in the sun,
you may not need as much supplement. Also, this is a fat soluble vitamin so
can be toxic to your system. Really keep an eye on this vitamin.Thanks for the info...I am learning so much from you guys!
Breathe the air and absorb the sun! Listen to birds, hang from trees, get dirty, float down a river..... that's how I get my vitamins.
I went to a talk last year given by a research dr. from our local hospital - at question time I asked what he would recommend for RA - his reply was no dairy and increase Vit D. Have since heard Vit D is very hard to absorb using the vitamin so sunlight seems to be needed.I wonder how many of us have low vit. D....I'm one.I let you know about the vit. D because for some reason I am not absorbing it from the sun. From what I read this often happens when you get older. Maybe as they look into it further they will discover the reason. In the mean time I suggest all you guys make sure you take care of yourselves. I am familier with the frustration we all go through. My doctor has me on high dose of Vit D. 2,000 mg a day. I don't feel any different from it....Maybe thats why my RA got so bad moving to the Uk..........theres hardly any sunshine hereNo dairy?? Why?? I have a daily non fat yogurt. I also eat a thin slice or two daily of low fat swiss cheese (I prefer hard cheese).
Pip knows a lot about vitamin D, whcih she says is not really a vitamin but a
natural steroid. People on the Marshall protocol, which is a really hard core
kind of AP, try to eliminate vitD from thier diet. I don't know why, though.I can count on one hand how many sunny or even partly sunny days we have had since beginning of Oct. I will have to bring this up at my next appt.There are tons of studies and articles that link vitamin D deficiency to Rheumatoid Arthritis and other autoimmune illnesses. Here are just a few...
http://www.webmd.com/rheumatoid-arthritis/news/20040109/vita min-d-may-prevent-arthritis
http://www.medscape.com/viewarticle/516238_print
http://www.npr.org/templates/story/story.php?storyId=5503161 &ft=1&f=1007
http://www.sciencenews.org/articles/20041009/bob8.asp
http://www.boston.com/news/globe/health_science/articles/200 4/12/30/vitamin_d_deficiency_tied_to_host_of_dangers/
http://www.redorbit.com/news/display?id=126369
I take 50,000 IU's weekly for a severe vitamin D deficiency . It has helped the muscle pain and sugar cravings that I was having...not to mention the fact that if you use Prednisone, you should be supplementing your diet with calcium and vitamin D to avoid Osteoporosis.
LynnAutoimmune Diseases
Insulin-dependent diabetes mellitus (IDDM), multiple sclerosis (MS), and
rheumatoid arthritis (RA) are each examples of autoimmune disease.
Autoimmune diseases occur when the body mounts an immune response
to its own tissue, rather than a foreign pathogen. In IDDM, insulin
producing beta-cells of the pancreas are the target of the inappropriate
immune response. In MS, the targets are the myelin producing cells of the
central nervous system, and in RA, the targets are the collagen producing
cells of the joints (67). Autoimmune responses are mediated by immune
cells called T cells. The biologically active form of vitamin D, 1,25(OH)2D,
has been found to modulate T cell responses, such that the autoimmune
responses are diminished. Treatment with 1,25(OH)2D has beneficial
effects in animal models of IDDM , MS, and RA. epidemiological studies
have found that the prevalence of IDDM, MS, and RA increases as latitude
increases, suggesting that lower exposure to UVB radiation and
associated decreases in vitamin D synthesis may play a role in the
pathology of these diseases. The results of several prospective cohort
studies also suggest that adequate vitamin D intake may decrease the risk
of autoimmune diseases. A prospective cohort study of children born in
Finland during the year 1966 and followed for thirty years found that
those who received vitamin D supplementation in the first year of life had
a significantly lower risk of developing IDDM, while children suspected of
developing rickets (severe vitamin D deficiency) during the first year of
life had a significantly higher risk of developing IDDM (68). Vitamin D
supplement use was associated with a significant reduction in the risk of
developing MS in two large cohorts of women followed for at least ten
years (69). Similarly, postmenopausal women with the highest total
vitamin D intakes were at significantly lower risk of developing RA after
eleven years of follow up than those with the lowest intakes (70).
Evidence from animal models and epidemiological studies suggests that
maintaining sufficient vitamin D levels may help decrease the risk of
several autoimmune diseases.
Found this on the internet. It is interesting
seen it ordered on a patient. Maslaynak, how did your doctor know to check
this? Were you having certain symptoms? Or did other labs show up
abnormal such as your calcium and phosphorus levels? This is curious.I was feeling worse than usual. I felt like I had the flu. The doctor just cared enough to listen and asked me if my vit d level was ever tested. He said it can cause muscle pain. He said I have muscle damage due to it right now. I do not know if it can be reversed.My rheumatologist checked my vitamin D levels after my first visit and continues to check them every few months. I've read that vitamin D deficiency is quite common among RA patients. It can also cause unexplained muscular aches and pains. It is a simple blood test, you might want to ask your physician to order the test.
Sarah Thank you guys. I am going to do that. One never knows and If I am, I am
going to be doing something about it.Wow, thanks for this information. I'm going to have my vitamin D level checked next time I go to the doc. Since I have always hated milk I would not be surprised if I'm deficient. Hi! Vit. D can help with bone pain to...Just found out I'm low on Vit D. Getting a lot of muscle twitches and weak calf muscles, Could this be the cause???I take KDur for low potissium. the medical name for that is hypor- something. Its a big horse pill with no slickem on it......lol
is hypor- something. Its a big horse pill with no slickem on it......lol[/QUOTE]
Kdur is for hypokalemia. Or low potassium level in the blood.I am taking 50,000mg. of vit D a week. I was doing this monthly but I am still dangerously low in vit D. The challenge for me with getting it from the sun is RA meds like enbrel, arava and pred warn you to stay OUT of the sun. I stopped all dairly products a few months ago but then was put back on them by my Rheumy. How do you all go in the sun on RA meds?Wear sunscreen, a hat and long sleeves. At least that is how I do it.To get the body to absorb the proper amount of vitamin D you must be out in the sun a least 15 minutes with no sunscreen. It also becomes more difficult as you age to get the required amount of vitamin D from the sun.
Sarah
Young children are also now showing up with quite severe Vit. D Def.
Remember also that even our cosmetics have SPF - and now in Factor 30. We are now being recommended to go back to 15.
So, he says, do it in the morning, early!! Without your goo!! Even on MTX - but cut it right down if you get any burning probs. Even 5 minutes can be beneficial. And the winter sun is good too - although who wants to bare one's body's on a frosty morning!!
He tested my Vitamin D levels to try and get to the bottom of my muscle pain in my arms, thought to be the Polymyalgia, but the drugs hardly touching it. I was found to be deficient (well, I know that
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