Vit D deficiency and CFIDS/FM?

Discussion in 'Fibromyalgia Main Forum' started by ILoveGreen, Dec 6, 2006.

  1. ILoveGreen

    ILoveGreen New Member

    Has anyone else rec'd this Dx? I eat a well-balanced diet, although my sun exposure has gone from a lot to not much since my move from CO to WI. I'm hoping the Dx is not indicative of anything else going on... Please advise!
    Annie
  2. PVLady

    PVLady New Member

    Bumping
  3. Banka8

    Banka8 New Member

    Please research the Marshall Protocol before adding vitamin D (not really a vitamin but a seco-steroid) to your diet.

    Judy
  4. sfrazier

    sfrazier New Member

    Annie when I finally found a dr. that knew how to treat fibro one of the first things he check was my Vit D. While it was in normal range but a little low he put me on Vit D for about 6 months. It was a very high dosage and he had hoped that it would help with some of the tiredness and depression. Vit D is something we usually get from the sun but with the DD's we don't get out as much as we use to and just like everyone else without these DD's on dark days you tend to be more sleepy then when the sun is shining and you can get out and enjoy it. I'm thinking of trying to lay out a little this summer providing I loose some weight or find a petite huge to fit me after all these drugs. lol.....SueF
  5. jarjar

    jarjar New Member

    I have some information that I would like to share that should speed up your recovery on the Marshall Protocol.
  6. kbak

    kbak Member

    Annie,
    There are tons of articles on the web about not only everybodies need for Vit D but Vit D and CFS. Just google "Vitamin D to treat CFS". There's a group on yahoo devoted to treating CFS with Vit D-3.

    I found that I'm not tolerant of the Vit D-3, but get mine in cod liver oil. I was born and raised in Milwaukee WI. I moved to CO after high school and then up to WY. You couldn't pay me to go back to WI! I'm addicted to having sun and nice weather.

    Take care,

    kbak
  7. sh2angel

    sh2angel New Member

    I have to take vit D all the time...it is always really low in my blood and since I have had Melanoma no sun for me...I have to wear sun block all the time...I take 800mgs a day of vit D
  8. evol_or_revert

    evol_or_revert New Member

    I have a vit D deficiency but not major, the doctor just gave me a tablets for three days to help it. Some of the tablets I take make me very sensitive to sun so I have to stay out of it.

    Talk to you doctor about it. there are so many different ideas of vit D for cfids/fm so it really depends on whats right for you.


    evol
  9. artichokegirl

    artichokegirl New Member

    Hi Jarjar,

    I've followed the MP site for over a year now but haven't been able to find a dr. to help. I'm not giving up yet, though!

    What have you found that has sped up your recovery on MP?

    Thanks!
  10. jarjar

    jarjar New Member

    Sujay the beloved Dr. that use to post here has about all of her MP patients combining Ambrotose with the protocol.
    You can only start with a tiny bit or you will get too much herx.

    She also adds heparin into the mix if needed.

    It is amazing how fast it speeds up your healing but you can only start out with a tiny bit or you may herx too much.

    Where do you live?
  11. artichokegirl

    artichokegirl New Member

    Hi Jarjar,

    I live in Illinois. There are 2 drs. in Illinois on the list using the protocol. I contacted the first and he had just left to become a missionary in SA. The other one only believes in doing MP with sarc patients and won't take anyone else. I also contacted one dr. from the Indiana list and he's not taking any new patients. I will check back with him in May. I've tried to get 3 other drs. to prescribe the meds for me without any luck.

    On the positive end, I'm having good success with the roadback's antibiotic protocol. I follow the MP lifestyle and diet recommendations. I'd rather be on MP because I've seen a difference since avoiding Vit. D. I also had my D levels tested and fall in the TH1 inflammation range.

    I am new to this board, so I wasn't around when Sujay used to post. Where is she located?
  12. rushword

    rushword New Member

    When I was initially diagnosed in june with the cfs at Mayo, I was told by a dr there that my Vit D was a little low and to take a Vit d Supplement. I was already taking a multi vitamen that had Vit d in it so I was surprised that mine was low at all. He recommended taking a total of 800 iu's per day. Last week I saw a dermatologist, and showed her my records from Mayo and was telling about the Vit D. SHe said she herself was taking extra Vit d, specifically, D3 for several reasons. SHe told me to take 800 to 1000 IU's per day. She said the FDA is planning on increasing the suggested amount of Vit d in the future.
  13. TerryS

    TerryS Member

    Annie: My vitamin D is very low and barely within range...also, my B-12 level.

    I found out in October that I also have primary biliary cirrhosis (an autoimmune liver disorder) and that is probably the reason for my vitamin deficiencies.

    TerryS
  14. jarjar

    jarjar New Member

    She is in the Seattle area but sees patients from out of state. After an office visit she will do phone consultations for out of state patients.
  15. artichokegirl

    artichokegirl New Member

    Thanks for the info. jarjar!

    I found a website dedicated to her and looked that over. I guess my main question is....Do you think it is a sure thing that she will prescribe the protocol for me? After being turned down by so many drs, it makes me nervous to think about going all the way to Seattle and having it happen again. Not to mention that this will be a trick to convince my husband. What are your impressions? Thanks!
  16. jarjar

    jarjar New Member

    To the best of my knowledge all of her cfs/fm patients are on the protocol. I presume you are aware of her full name and she is located in Poulsbo WA. Rent a car from the airport and catch the ferry over it is beautiful.

    To make you feel better call her office and explain your situation to one of her staff members. That you don't want to travel that far only to find out you can't go on the Protocol.
  17. Marta608

    Marta608 Member

    I wrote about this awhile back, how my PA whose husband is a rheumy is finding that many of his patients with pain and depression improve dramatically on large doses of D. She prescribed 50,000 i.u. once a week for me, to take for one month, then reduce to 2,000 a day. Blood levels must be monitored!

    I didn't begin it right away because I was concerned about the high dose but I did begin a week ago. So far I'm not dead and I had a marvelously productive week. I forgot yesterday but took another one today. Stay tuned.

    I live in Michigan and don't get out in the sun much anymore due to heat intolerence. Years ago I used to tan in the winter and believed I felt better but was told it was only because I looked healthier. Now I think I was right.

    Marta
    [This Message was Edited on 12/13/2006]
  18. LongStruggle

    LongStruggle Guest

    There was some indication that I struggle with secondary hyperparathyroidism. One of the factors causing it could be a vitamin D deficiency. When I started some vitamin D my heart palpitations significantly worsened. Anybody else have this problem and, if so, did you find a solution?
  19. artichokegirl

    artichokegirl New Member

    Thanks so much for the suggestion. Good idea to call first! Please continue to share your progress on Marshall Protocol. It is very inspiring!
  20. jarjar

    jarjar New Member

    If you go to the marshall protocol.com site and post that question they will tell you exactly what is going on.

    They will be able to answer the question in a more scientific way that you and your Dr. could understand more then if I tell you.

    Hope you post as I would like to see you get the proper answer.