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Second-guessing the consensus on vitamin D

Discussion in 'Other Health News and Research' started by xchocoholic, Dec 10, 2012.

  1. Ema

    Ema Senior Member

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    Either way, the frozen result was low. Without an elevated frozen result, I personally wouldn't feel comfortable with a Benicar trial given the risks.

    The variability in testing packs a blow to the creditability of an already fringe theory. I'm all for a good fringe theory but there needs to be some consistent benchmarks for people to follow.
     
  2. Symptomatic

    Symptomatic Senior Member

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    As mentioned, the MP folks don't consider high 1,25D to be a criteria. If it's high, they definitely feel Benicar is warranted; however, if it's not they don't rule it out.

    I happened to fall squarely into the "will probably benefit from it" group, and my doctor said it was a "no-brainer" that I needed to get on Benicar.

    Do keep in mind that Benicar is a very safe drug: http://mpkb.org/home/protocol/olmesartan/safety (there is additional info on the CIR website as well).

    Excerpt:
    Data supporting the safety of higher than typical dosing frequencies

    A 2001 study published in the Journal of of Pharmacology found olmesartan to be safe and well tolerated at doses of up to 160 mg/day.1
    CS-866 [olmesartan] was safe and well tolerated at doses of up to 160 mg/day…. [Olmesartan] has no serious adverse effects.
    Lee R. Schwocho, PhD and Harvey N. Masonson, MD 2
    Animal studies in mice, with olmesartan doses up to 480 times the human dose of 40 mg per day (relative to body weight), showed that olmesartan is not carcinogenic.
    The label for olmesartan states that the drug is well-tolerated. Adverse events were similar to those experienced by the placebo group – a group of patients who were not given the drug at all. Adverse events were generally “mild, transient and not related to dose.” The frequency of adverse events also had no relationship to the dose of olmesartan.

    But you have to go with what feels right to you, and what you are comfortable with./
     
  3. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    What a coincidence that you would post this today. I just got my lab results from October back. My calcium is 10.1 and I have not been taking supplemental Ca for over 2.5 years. My dietician has me doing this because of low potassium. I had expressed concern to my dr. that my body was pulling Ca from my bones. Dr. Norman has 10.1 listed as both normal and high at various places on his site.

    I did not have my vitamin D checked. I am the one who said I probably needed to take D in this northern climate in the winter. Last January my D was low. I don’t know if my Ca was checked then and I do not have a copy of those results.

    I suggested a parathyroid hormone test, but my dr. did not think it was important. Now I am getting more worried. I am going to have to have at least the Ca and D tested at my next appointment. I need to have some insurance before I get a parathyroid test in case it is high.
     
  4. Symptomatic

    Symptomatic Senior Member

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    Little Bluestem,

    My GP was not very cooperative or supportive through the whole process, I hope you have better luck. My calcium had been testing high since 1997 (only hit 10.8 once, 10.7 twice - was usually in the 10.3-10.4 range and on rare occasion was actually in the normal range), but for whatever reason GP thought to test 25D and PTH in 2008. That's when I first started getting the message that my "Vit D is low". I'm guessing that since my PTH wasn't high, she didn't pursue it further.

    When I requested the three weeks of Ca, 25D, and PTH testing after finding the parathyroid.com website, she initially resisted. Agreed to one test. Of course, my calcium came back in the normal range on that one (fluctuating calcium is one of the "Ten Parathyroid Rules of Norman"). She then agreed to two more weeks of testing, and calcium was high both times. I had calcium, ionized calcium, and PTH run all three weeks. 25D was only run the first week, and it was at 50 ng/mL since I'd been supplementing the prior month. 1,25D wasn't tested until several months later when the endocrinologist got involved.

    I was fully prepared to get testing done on my own, there are websites online through which you can do this, not sure how affordable they are or how easy/hard it is to do this since I ended up not needing to. But I think you may be saying you are worried about it becoming "preexisting" - if you test independently I don't think results are reported to any insurance companies (but you'd want to check).

    If you have any questions, feel free to PM me, I learned a lot through this process and if I can share any info that makes it easier for others, I am more than happy to.
     
    Sidereal and Little Bluestem like this.
  5. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    Not at all, it was really a very informative post. Thanks.
     
  6. dannybex

    dannybex Senior Member

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    The MP applies only to sarcoidosis, at least the old version of the MP. It's well documented that many folks with CFS and fibro had terrible reactions to Marshall's one-size-fit's all diseases approach -- several people in just our local support group (back in 2005 when the MP was all the rage) tried it, and 2 had to stop because they nearly suffered kidney failure, and the other just got sicker overall -- incredibly sick. All the while, the Marshall folks kept insisting they continue on...that it was just a "herx". The local doctor that pushed his protocol has been sued by 14 patients, and may very likely lose her license.

    It's my understanding that vitamin D (or hormone D as some call it) doesn't 'suppress' the immune system, it regulates it. A big difference, especially when discussing a condition that at one point was called CFIDS, for Chronic Fatigue Immune Dysfunction Syndrome. And I say this as someone who just found out last week that my 1,25 d is indeed high -- at 151.7.

    This study below suggests that vitamin d (25-d) intake has no correlation with high 1,25 d with CFS, fibro and other chronic conditions -- it's more likely due to bacterial infections (and possibly other types of infections?):

    http://www.ncbi.nlm.nih.gov/pubmed/19758177

    "
    High levels of 1,25-D may result when dysregulation of the VDR by
    bacterial ligands
    prevents the receptor from expressing enzymes necessary to keep 1,25-D in a normal range."


    I also read somewhere -- in some study -- that 1,25-d can be high if blood calcium is low, but can't find it right now.

    Just my two cents. :)
     
    mellster likes this.
  7. dannybex

    dannybex Senior Member

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    This doctor has an interesting series of lectures on vitamin D, and her belief, that if one can get it to 'the right' levels -- which she claims is 60-80 ng/ml (sp?), then their sleep improves, and once the sleep improves, then the healing can begin. Not saying if I agree or not, but it's intriguing, esp regarding the connection to sleep apnea and low vitamin D. Would be interesting to ask her about 1,25 d.

    http://drgominak.com/vitamin-d

    Here's her lecture on vitamin D, heart health and sleep -- warning -- it's a five part series, and she likes to talk. :)



    But I found it very interesting/intriguing in places...
     
    anne_likes_red likes this.
  8. dannybex

    dannybex Senior Member

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    Hi Sushi,

    That's great to hear. Did yours normalize? Also wondering if you supplemented (or are now supplementing) w/'D'?

    Thanks in advance. :)

    p.s. Do you know if patients using the other form of MAF -- the yogurt based stuff(?) -- have you heard of any similar improvements regarding their d levels?
     
  9. dannybex

    dannybex Senior Member

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    Xchoco -- it's my understanding that some of the ex-Marshall folks have started a new group that is less strict re vitamin D or sunlight, but can't remember the name right now.

    Edit: Just found it:

    https://chronicillnessrecovery.org
     
    xchocoholic likes this.
  10. Sherrie

    Sherrie

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    Symptomatic, thanks for that I found your experience very interesting.

    I have had high calcium in previous tests 1 or 2 times in the past, I have tried asking 2 different Drs for a PTH with no success, they did test calcium but it was normal. I did had low Vit D and got it to high normal within maybe 6 months but I felt worse not better.

    I do wonder sometimes as it would be so easy if it was hyperparathyroidism and not ME/CFS e.g. remove the offending parathyroid and life is supposedly back to normal whereas with ME/CFS we are just stuck in an endless loop. But, life is never that easy...
     
    penny likes this.
  11. xchocoholic

    xchocoholic Senior Member

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    Hi Folks,

    I'm sorry but I was on steroids last week for throat swelling so I haven't been able to comprehend any of the posts on this
    thread. Today is my first day post steroids and I'm exhausted already. And I still have swelling so I can't
    get into reading this now either.

    I don't support the mp protocal but I'm not proficient in how our bodies make or utilize hormone D either. I'm not
    convinced the medical profession is either.

    I thought this article spelled out several of the problems I'm seeing with
    Medical research studies. It seems once a theory gets enough blind supporters most medical professionals
    believe it. Or they buy stock in a certain product and promote it for profit.

    I saw another article here awhile back on the importance of allowing our bodies to go through the process of
    regulating our hormone D but I can't find it now. Does anyone else remember this ?

    There's a hormone d study on the web of healthy surfers who are out in the sun regularly that showed
    what are considered low d levels. The point was to prove that even healthy people who're out
    in the sun won't have the levels being promoted as low.

    Tc ... X
     
  12. penny

    penny Senior Member

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    Similar to what others have reported, PTH was low normal, which is what it should be with high normal calcium levels (my understanding at least). I had, like others, 'hoped' for hyperparathyroidism - appeal of a possible cure. I've only been tested for PTH once though.
     
  13. Symptomatic

    Symptomatic Senior Member

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    The MP (and CIR version) do not apply only to sarc at this point.

    I do not have ME/CFS or fibro. I had a negative chest X-ray so am presumed negative for sarc, but it can occur in other places in the body so not sure it can be ruled out 100%.

    My current Dr. believes I have bacterial and viral infections, and a compromised immune system (all supported by labwork). For me, as mentioned, I have high 1,25D (suspected to be due to bacteria) that leads to hypercalcemia (NOTE: not everyone with high 1,25D has hypercalcemia, but I do). That is not a good thing, and needed to be addressed. The only "treatment" standard doctors would approach this with would be prednisone, which I wasn't going to take.

    I am not an MP fanatic, not by any stretch, so I'm not here to defend everything they say. I am a skeptical scientist. I tried Benicar because I figured I didn't have anything to lose by trying, and also have clear markers to test (calcium, PTH, and 1,25D), all of which have responded positively to Benicar - with no ill effects. I've been on it since August 2011, and all my standard bloodwork has been fine (e.g. no kidney issues, no exacerbation of other issues). But I'm an experiment of one, as we all are.

    I take the pieces from MP that make sense to me, and take pieces from elsewhere that also make sense to me (e.g. also taking LDN, was taking Malarone (just stopped this past week), and now taking Homeo KMAF). That's how I ended up here on this forum, even though I don't have ME/CFS. I am considering GcMAF (since I also have high nagalase), and this community had the most members with symptoms I could relate to who are using that treatment.
     
    penny likes this.
  14. Symptomatic

    Symptomatic Senior Member

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    So sorry to hear this, I'm assuming the units are pg/mL since you are in the US? Mine started at 140.7 pg/mL, you are one of only two folks I've heard of with levels higher than mine. I contacted both CIR and Greg Blaney (an MD who wrote a paper in which he charted 100 of his patients 25D vs 1,25D levels (note the different units in that paper though, and none of those patients had hypercalcemia), mine was higher than all theirs and yours is higher than mine) and asked what "disease" usually goes along with 1,25D levels like that, and they both responded with "sarcoidosis".

    What does your calcium look like?

    Here's a link to the Blaney paper: http://autoimmunityresearch.org/preprints/BlaneyAnnals2009Preprint.pdf
     
    Sidereal likes this.
  15. dannybex

    dannybex Senior Member

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    I guess that's a longer version of the same study I posted -- thanks for the longer version.

    Interesting to read a connection between pseudomonas infections interfering with the VDR. About 4 years ago a stool test revealed higher than normal levels of pseudomonas, and the doc really didn't offer any suggestions or treatment specifics -- just probiotics, to the best of my foggy recollection. I also have a chronic low-grade sinus infection (strep) that won't go away -- can't raise a decent fever (immune dysfunction?) -- so that could be contributing as well.

    My calcium has always been normal when tested, but I realize that's not a very reliable test. Not sure if I've had a PTH test, but just a week or two back I had quite a few thyroid tests, and all were normal, although the TSH was worse than last time. I don't know for a fact that I have sarcoidosis, but I'm not sure how one would test for that, esp when symptoms can be all over the map, or non existent.

    I certainly didn't mean to imply that anyone trying versions of the MP shouldn't be doing so -- just wanted to warn those that may not be aware -- of the dangers that many with CFS/ME experienced while trying his protocol years ago. Who knows, I may end up on Benicar myself, as my systolic BP has been increasing over the last 2 years, so it may all fit in, but will be really cautious about it, considering the friends I know who almost developed kidney failure as part of the MP.

    I'm also interesting in GMAF, and possibly Mutaflor, but am on medicaid, w/zero funds.

    Are you taking any D3 or doing anything to treat or find out what kind of infections you might have?

    Thanks in advance.

    Dan

    p.s. Hi X-Choco. Hope you're feeling better asap. :)
     
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Mine normalized. As long as I take GcMAF the ratio stays good. I was told not to take D3 while on GcMAF.

    Sushi
     
    anne_likes_red likes this.
  17. Symptomatic

    Symptomatic Senior Member

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    Absolutely no D3 for me with 1,25D levels like this - nobody would suggest that. Sarc patients (the population with the highest 1,25D levels) are told not to supplement, and to avoid sunlight. Whether or not I actually have sarc, I am following those suggestions. I *have* to keep my calcium down, and the only way to do that is to keep the 1,25D down. I'd only be fueling the fire by taking Vitamin D since it's a precursor to 1,25D.

    I was tested for a variety of bacterial/mycoplasma infections last year - I was negative for everything tested (I don't necessarily believe that though). There are many, many bugs, and there aren't tests for all the bugs out there. If I had unlimited funds I might explore further, but both my doctor and I are of the opinion that if the results of the test aren't going to change the treatment, we don't need to do them.

    Viral: positive for HHV6, HSV, Human Parvo. Presumed positive for EBV due to severe mono in 10th grade.

    Nagalase at 1.8, low complement C3a and I have an IgG subclass 3 deficiency (and borderline subclass 1 deficiency)

    Our strategy right now is: "kill more bugs, provide more immune support".

    I'm on Benicar, Minocyline, Azithromycin, LDN, and Homeo-KMAF. Just got done with ~8 months of Malarone. I see doctor in early January, and find out where we're headed next.
     
  18. dannybex

    dannybex Senior Member

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    Interesting. How long do you have to stay on GcMAF?
     
  19. dannybex

    dannybex Senior Member

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    Quite possibly so. There are some researchers/clinicians out there I see who actually do recommend slowly increasing vitamin D (while watching 1,25 d and calcium closely) and others that suggest that low vitamin D may be one of the factors that helps create the opportunity for sarcoidosis to take hold in the first place. For example the rates of sarc are much higher in the northern (sunless) latitudes, and dark skinned people have higher rates...

    http://www.ncbi.nlm.nih.gov/pubmed/21832916

    Having said that, I'm going to stop for now too until I study this more and talk to the doc. :)

    Have you looked into any biofilm busting agents like haritaki?

    Also, does the KMAF help lower your 1,25-d calcium, or is it mainly for infections?

    Thanks in advance.
     
  20. dannybex

    dannybex Senior Member

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