1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Knitting Equals Pleasure, Despite ME/CFS
Jody Smith loves knitting. Again. She thought her days of knitting and purling were long over but ... she's back ...
Discuss the article on the Forums.

Problem with supplements especially vitamin D?

Discussion in 'General Treatment' started by Ocean, Dec 10, 2011.

  1. Waverunner

    Waverunner Senior Member

    Messages:
    995
    Likes:
    841
    Do so, please. What is true for one person does not have to be true for another person and what is good for normal people can be harmful for people with ME.
    Ocean likes this.
  2. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    Waverunner, I just remembered, something else I tried before was dry vitamin D3. I never gave it a fair chance. I didn't expect it to work well so I returned it shortly after I started it. But, if I remember right, I did NOT have side effects from it. Although maybe I just wasn't on it long enough. That is something I may try again if I try vitamin D any time soon. Again, if I do, I'll post back here. If anyone else has had experience with dry vitamin D3 in terms of doing differently on it vs. the oil form, I'd love to hear it. Here's on discussion I found on it online. It might be not as effective in getting levels up but if it works without those same side effects it might be worth trying for me. Frankly the depression I got from regular use of D3 was enough to scare me off it for a long long time. It might take some time to be able to get myself to try it even in the dry form.
    http://ask.lef.org/Topic1151.aspx
  3. adreno

    adreno 3% neanderthal

    Messages:
    2,313
    Likes:
    1,449
    Tundras of Europa
    I can't say what causes your reactions. What I do know is that vit D will activate your immune system. When that happens you might initially get all sorts of bad reactions, if you have any latent infections. This is the same reaction as when you get the flu. It's not the virus per se which makes you feel rotten, it's your immune system's reaction to the virus (inflammatory cytokines aso).

    You might try a slow titrate and see if your system calms down after a while.

    A way to test this theory would be to try an anti inflammatory when you get the reaction. Something like ibuprofen or curcumin should do. If that makes you feel better it's likely an inflammatory reaction of your immune system, and my guess is it will pass after a while.
  4. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    I didn't really get what seemed like immune type symptoms. I got restless leg, severe bruising like to the level you'd get in a bad car accident, constant feeling of mild or moderate nausea, very loose stools every day, tingling and pinpricks on the body, and eventually very depressed mood. That's all I currently remember since It's been a while since I tried it. Do those sounds like it could be from an overactivited immune system? I did seem to have more allergies which I can see fitting the immune system theory. But in all I did not feel flulike on vitamin D. It felt like something foreign I'd not experienced before. It also affected sleep, over time making me more and more sleepy and sluggish and out of it at night and unable to stay asleep in the mornings. The only positive I seemed to experience from it was stronger fingernails.

    I also tried using lower doses and using them less often, but had the exact same reactions on a much smaller dose taken just a few times over the period of one or two weeks. I think the dose I used at the low end was maybe 200 or 400.

    If I try again, I'll probably give the dry vit D a chance this time.

    I still don't know if my symptoms are from vitamin d maybe competing with or affecting other things in the body and creating a deficiency in something else (like a deficiency that would cause severe bruising, vitamin k maybe) or if I'm just not tolerating vitamin d or both. It looks like it might be both since I don't think all the other symptoms can all be explained by lack of vitamin K or lack of any one element. Or can they?

    I do know that even off vitamin d I tend to go through periods of bruising, so something must be at a lowish level and then gets sent into too low with some body change, like medication change or things like that. For example after taking antibiotics for a while I started getting bruises again. Nothing like the ones I had on vitamin D but obviously this is something I'm prone to until I figure out what is causing it. Believe it or not, with vitamin D there was one huge bruise that eventually faded but still remained in some lighter form for nearly a year, or maybe even longer! After I went off vitamin D all the side effects including depressed mood, tingling, and bad bruising went away. When I'd start back up, they'd start back up again even after very few doses.
  5. penny

    penny Senior Member

    Messages:
    286
    Likes:
    134
    Southern California
    Me too. Pain and cramping.
  6. SaraM

    SaraM Senior Member

    Messages:
    501
    Likes:
    18
    Ocean, I took dry Vit D for a few months, and it did not raise my level a bit.
  7. rlc

    rlc Senior Member

    Messages:
    822
    Likes:
    245
    Hi Ocean, although it may be related to vitamin K levels, Id recommend getting a doctor to test you, large doses of vitamin D should be taken with a Doctors supervision, because it can cause bad reactions in some people who have underlying health problems that havent been diagnosed, it can cause Calcium levels to rise in some people and effect the parathyroid glands, Doctors usually check Calcium, PTH (parathyroid) Levels, Vitamin D can also have bad reactions in people who have other missed conditions like a Kidney problem. Vitamin D can react with some other medications as well, theres some information on all of this here http://www.nlm.nih.gov/medlineplus/druginfo/natural/929.html

    Increased bruising is defiantly not a common symptom for people taking Vit D, so I would highly recommend talking to your doctor about it, in case there is some other medical problem that has been missed. Doctors can also test for vitamin K deficiencies.

    All the best
  8. rlc

    rlc Senior Member

    Messages:
    822
    Likes:
    245
    Hi SaraM and Penny, muscle pain and cramping when taking Vitamin D is usually caused by having a Magnesium deficiency as well. A magnesium deficiency is also the number one reason why people vitamin D levels dont go up with treatment, (you need magnesium to absorb Vitamin D)

    The Vitamin D council says this

    Vitamin D has no known side effects. If one experiences any of the following symptoms due to supplementing with vitamin D - or with sun exposure - a magnesium deficiency is most likely the reason why:
    irritability or anxiety
    nausea
    headaches
    insomnia
    fatigue
    muscle cramps/twitching
    weakness
    constipation
    link http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-cofactors/magnesium/

    Taking vitamin D with a lot of magnesium has helped me immensely and has got rid of a lot of my symptoms, but I did feel worse taking Vitamin D without magnesium, so from my experience taking the two together has been great, but everyone needs to remember if their taking large amounts of Vitamin D to get there doctor to keep an eye on things and monitor calcium levels.

    All the best
  9. penny

    penny Senior Member

    Messages:
    286
    Likes:
    134
    Southern California
    That's interesting rlc, though I was actually taking a lot of magnesium (up to, maybe past, bowel tolerance) and not very high levels of D (200 one round and 2000 another). To some degree, for me, whether vitamin D was the direct or indirect cause of my muscle cramping and pain doesn't really matter. Taking it makes me feel much worse, so I don't take it.

    I also have reasonable D levels in my blood (42 out of a 30-80 range). And high-normal calcium.

    It's all so individual!
  10. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    That's what I was worried about so I didn't give it much chance. But in that thread I posted from another site it seems it did raise levels for the poster. One thing I think you have to do with dry vitamin d is take it with food, preferably fat.
  11. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    Thank you. Boy I wish I had a good doctor who had checked any of that. My doctor at the time had me take vitamin D but dismissed that my side effects were related to it and did not test for anything else. I have such a hard time getting out of the house to get to the doctor it makes it so hard to follow up on all the various issues that seem to come up with this illness. I'm going to write down all you said about and make it my goal to see my doctor and check on all that within the next few months. Thank you so much!
  12. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    Like you Penny, I was also not going too high (compared with some people) about 2000 a day at most I think. Mine is quite a bit lower than yours Penny. I wish it were higher naturally so I could just not worry about taking it!
  13. penny

    penny Senior Member

    Messages:
    286
    Likes:
    134
    Southern California
    Do what you feel like you need to do, but don't forget, you aren't alone in not doing well with vit. D. Good luck!

    (ps. a thread from earlier in the year on the topic, in case it's of interest http://forums.phoenixrising.me/showthread.php?10499-Vitamin-D-and-Increase-in-Symptoms )
    Waverunner likes this.
  14. PokerPlayer

    PokerPlayer Guest

    Messages:
    125
    Likes:
    5
    Seattle, Washington
    Vitamin D seems to help quite a bit for me. I take at least 5000 iu's per day. Under doctors orders I took 10,000 iu's per day for 4 months and it helped a lot with lessening anxiety and PEM. Only negative was it caused brain fog, weird huh?
  15. rlc

    rlc Senior Member

    Messages:
    822
    Likes:
    245
    Hi Ocean, glad to help, sounds like your doctor completely dropped the ball, vitamin D is well known to cause side effects in some people who have other underlying health conditions, (and they are taught this in med school, sigh) if you print out the article that I gave you the link for and take it to your doctor it might jog their memory, or maybe you need a better doctor.

    If youre having such a bad reaction to Vit D Id say it would be wise to stay of it until you find out why, just in case. Then when the reason for the reaction has been found, a good doctor should be able to come up with a treatment plan to fix the low vitamin D as well. I know what you mean about being hard to get to see a doctor, whatever happened to house calls?

    All the best
  16. rlc

    rlc Senior Member

    Messages:
    822
    Likes:
    245
    Hi Penny, if your levels of vit D are good, then theres really no need to take it, so I wouldnt worry about it, but my advice would be the same for you as for Ocean, make sure your doctor knows about the reaction, and investigates other possible causes for it, just in case there is something else going on.

    Also it can sometimes take a long time (months) for magnesium levels to go up to correct levels, it can be difficult for the body to absorb in supplement form, so its a possibility that it was the vitamin D causing the magnesium deficiency symptoms to occur. In my case I was taking 50,000 iu of vitamin D a week and large amounts of magnesium, and it took about eight weeks of taking the magnesium before I stopped getting a reaction for a few days every time I took vit D, (muscle cramps, pain and twitching, heart pain and palpitations, fatigue etc) but it all came right in the end, and I feel a lot better. So maybe your magnesium levels were still a bit low?? But tell a doctor about the reaction, just in case.

    All the best
  17. Charles555nc

    Charles555nc Senior Member

    Messages:
    448
    Likes:
    61
    When i take vitamin D, I get lock jaw for a couple days and my adhd gets worse. People with bad reactions like that do well on the Marshall Protocol.
  18. Carrigon

    Carrigon Senior Member

    Messages:
    805
    Likes:
    72
    PA, USA
    For me, the brand makes the difference. I have to take a more natural brand. If I take some of the commercial brands, I get allergic reactions to the fillers and junk in them. And don't forget, many commercial brands stuff aspartame in the vitamins. So that right there is where your symptoms are coming from. Colorings, aspartame, fillers. The more natural brands usually just put gelatin or olive oil in them.
  19. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    Thanks Carrigon. I don't think that holds true in all cases though. Unfortunately in my case, I tried many types, all of them quality ones and still did not tolerate them. I did use the olive oil kind, I think it maybe was even organic, and a very good brand, and I still had the issues I noted in my original post. There must be something else going on, I just don't know what it is.
  20. Freddd

    Freddd Senior Member

    Messages:
    4,543
    Likes:
    901
    Salt Lake City
    Hi Ocean,

    I have watched people shudder from one induced deficiency to another trying to pick of the elephant with a BB gun. In the active b12 protocol I have watched it have zero effect until the person took vit D (most limiting factor for that person) then have a ton of b12/folate startup followed in 3 days by induced potassium deficiency.

    This who scene can happen by taking inadequate doses of most everything so that it is roundrobin deficiencies correcting one thing at a time. My experience has been that people take all the basics, and then add mb12, adb12, metafolin and be prepared for the potassium deficiency and except for folates for instance, not any competition for absorbtion. Folate and cobalamin have specialized active absorbtion and transport mechinisms. Folic acid appears to comperte with folinic acid and methylfolate.

See more popular forum discussions.

Share This Page