Home Forums General Discussion The Importance of Vitamin D3

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  • #361244
    Symptomatic
    Participant

    I’m new to posting here, but have been reading on and off for about two years. Not doing AP per se. I do a mix of things, including some aspects of Marshall Protocol (which I realize is a controversial topic): I take Benicar and Mino (per MP), but also take Zith, LDN, and a homeopathic version of Gc-MAF (all of which MP frowns upon).

    A Friend – I was going to PM you, but I’m too new to be able to do that. So I’ll start out here. I had hypercalcemia with low-normal PTH,and “low” Vitamin D (that’s 25D), but then found I had extremely high 1,25D (while pursuing a diagnosis of hyperparathyroidism). The Benicar lowered my 1,25D and my calcium, and brought my PTH up into the correct range. My 25D is still low, but I’m one of those folks who doesn’t have hyperparthyoridsm, sarcoidosis, or any other disease listed on Norman’s parathyroid.com page as a possible cause of high calcium, yet I still had high calcium and taking Vitamin D (which my GP had recommended, and which I did for a month back in 2011) is definitely *very* bad for me.

    I feel MUCH better now that my calcium is down in the 9s – migraines are gone, hair loss has stopped. My CRP is coming down. I still have other issues to be addressed, but getting rid of the hypercalcemia symptoms has helped immensely. I’m happy to discuss further with anyone who may be interested.

    #361245
    cavalier
    Participant

    I think like Phil it depends on the individual & the disease as well as to supplementing or not.

    Studies do show Vit D to be protective against cancer.

    But on the flip side a former patient of Dr C’s dn get better til she did the MP protocol& avoided Vit D. But you do wonder can someone safely avoid extra Vit D for their whole life & will that open up a different set of issues?

    I am about to do LDA low dose allergy therapy & they do want you to take D3 for 2wks ahead of time & for the next 4 wks after as it is part of their program with zinc folic acid which I wondered about those who have the MTHFR gene issue & B12 which I will take but only with complex Bs in addition & Vit A in a good multi Vit.

    I read some info written by a doc last nite & he feels Vit D is crucial to keeping regulation as is selenium to help avoid cancer but for other regulatory controls so I will find that & post it. I am as confused as some of you are so hard to know who is right or wrong. I have gone off Vit D3 before & I dn notice a difference in how I felt. But to add to the confusion there is a group of people who cant convert the D3 well & this causes a imbalance & in that moment I read this last nite I felt AHA perhaps this is the why!

    Jill SD Lyme CPn candida heavy metals poss bart allergies low thyroid ( take armour but I do have swings it seems so I suspect Hasim.)

    #361246
    cavalier
    Participant

    Symptomatic – may I ask about this please ? – homeopathic version of Gc-MAF I am familiar with this, is costly from some docs, but not the homeopathic what is that/ brand? / where you get that at? And what are you taking it for specifically? Do you feel this has had any bearing on your CRP going down? or inflammation in general? Or been of some help to you in that area? I take LDN 9.0 mgs have for a yr now it does help as I am much more tired yet without it but my numbers for SD have climbed further & my Lyme is still very chronic am CDC positive still.

    Thanks Jill

    #361247
    cavalier
    Participant

    http://www.jackkruse.com/where-autoimmunity-cancer-and-disease-collide/ this is the article where D is talked about.

    Autoimmune disease incidence and prevalence outnumber all deaths from the top ten killers of mankind. Why? -http://ow.ly/nYtlU

    http://www.jackkruse.com/the-quilthow-to-beat-agin/#BrainGut This just shows the complexity of the body

    #361248
    Symptomatic
    Participant

    @cavalier wrote:

    Symptomatic – may I ask about this please ? – homeopathic version of Gc-MAF I am familiar with this, is costly from some docs, but not the homeopathic what is that/ brand? / where you get that at? And what are you taking it for specifically? Do you feel this has had any bearing on your CRP going down? or inflammation in general? Or been of some help to you in that area? I take LDN 9.0 mgs have for a yr now it does help as I am much more tired yet without it but my numbers for SD have climbed further & my Lyme is still very chronic am CDC positive still.

    Thanks Jill

    I don’t take the probiotic form of GcMAF, I’m taking what used to be called Homeo KMAF (now called Homeo K.Guard) from http://www.biopure.eu, at 10 drops 2X/day. I had my nagalase tested last October, and it was high (1.8 when it should be less than 0.95, some feel it should be lower than that). I’m taking the homeopathic version because I really don’t like needles and don’t want to do the injectable GcMAF – though if my numbers don’t come down far enough with the homeopathic version, I’ll consider doing it. I started taking the Homeo KMAF last October, and when my nagalase was tested in April, it had dropped to 1.2. I will test again this October.

    Through all my testing, I’ve discovered I have an IgG subclass 3 deficiency, a borderline IgG subclass 1 deficiency, and a complement C3a deficiency; high CRP, various viral (including mono when in high school) and presumed bacterial infection(s). Had positive ANA several times from 2002-2004, but it’s been “normal” since then. My doctor would love for me to do IVIG, but I don’t like needles and I’m not sure I want to take that kind of product. Between the IgG and complement deficiencies and high nagalase, it looks like my immune system is having a really hard time.

    I’m taking Benicar/Mino/Zith to try to keep the hypercalcemia and inflammation in check and to hopefully kill bugs; LDN and Homeo KMAF for immune support and hopefully to get the nagalase down so the immune system kicks in. I did a long course of Malarone, but didn’t love it. Started bioidentical progesterone last year, and just added Armour thyroid a few weeks ago.

    Sorry for the long post!

    #361249
    Symptomatic
    Participant

    @cavalier wrote:

    I think like Phil it depends on the individual & the disease as well as to supplementing or not.

    But on the flip side a former patient of Dr C’s dn get better til she did the MP protocol& avoided Vit D. But you do wonder can someone safely avoid extra Vit D for their whole life & will that open up a different set of issues?

    Jill SD Lyme CPn candida heavy metals poss bart allergies low thyroid ( take armour but I do have swings it seems so I suspect Hasim.)

    I definitely am not trying to say that my 25D/1,25D/calcium situation is normal, I’m certain it’s not. 😕 But if it wasn’t for the endocrinologist being on the ball, I never would have had my 1,25D tested – that’s what really broke things open for me, and got me started in a direction…I’d been ignored and pooh-poohed by my GP for nearly 15 years.

    I pretty much think we’re each an “n of 1”, since our immune systems and exposures are all different. What is working for me may not work for *anyone* else, but I’m always happy to share what I’m doing in case someone finds it’s helpful.

    In my specific situation, I don’t think I will ever be able to safely take Vitamin D.

    I don’t tell others what they should/shouldn’t do, but I am concerned that so much of the Vitamin D data seems to have been generated using 25D numbers, without taking the 1,25D (active form) into account.

    It is far less of an issue for folks who don’t have hypercalcemia.

    #361250
    Lynne G.SD
    Participant

    Hi Jill;
    I am now on CIR protocol also known as Stillpoint Protocol.Dr B. at Stillpoint in Vancouver is my sister’s doctor and told her she just had to be careful to avoid extra D for the first few months until things got under control.She never used the dark glasses but did cover up when out in the sun.Mind you,up in the Yukon where she lives there is full daylight 24 hours a day and since she has Lupus she had to avoid lots of sun anyway.Today it looks like she is cured and after only 3 years.Here is yesterday’s generated e-mail from CIR.thought some might like to read it.
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    Issue: 45

    August 2013
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    Greetings,

    We hope you make plans to attend the CIR annual patient workshop on February 16, 2014, in Dallas, Texas. We will be presenting The Role of Vitamin D Deficiency and Persistent Infection in Auto/Inflammatory Diseases. Topics will explore the relationship of vitamin D, the immune system, intracellular infection and systemic inflammation. Continuing medical education seminar for physicians is scheduled on the 15th including an evening reception for both patients and physicians.

    CIR staff

    About Inflammation Therapy

    Vitamin D and Osteoporosis

    Osteoporosis is a bone disease characterized by a decrease in bone mineral density and the appearance of small holes in bones due to loss of minerals.1 Vitamin D is an important factor in maintaining bone health to avoid osteoporosis.2 Precise maintenance of the physiologic levels of both extracellular and intracellular ionized calcium is essential to life.3 The vitamin D metabolite 1,25-dihydroxyvitamin D (1,25-D) maintains calcium homeostasis between blood, cells and bones by stimulating calcium absorption from the intestines, reabsorption in the kidneys, and resorption in bones. 1,25-D up-regulates vitamin D receptors (VDR) in the small intestine, which then transcribes genes that shuttle calcium and phosphorus through the intestinal epithelium. However, mucosal response and calcium/phosphorus absorption is dependent on a competent VDR and elevated 1,25-D reduces VDR competence.4 Thus, calcium and phosphorus absorption may be inhibited if VDR function is impaired by elevated 1,25-D.

    Although some studies show vitamin D and calcium supplements increase bone density slightly and decrease the risk of falls and fractures in certain populations, the quality of evidence is poor.5 A 2013 report by the U.S. Preventive Services Task Force recommends against vitamin D supplementation for the primary prevention of fractures in non-institutionalized, pre or post-menopausal women or older men.6 The 2005 RECORD study concluded, “…routine supplementation with calcium and vitamin D3, either alone or in combination, is not effective in the prevention of further fractures in people who had a recent low-trauma fracture.” 7 A similar study stated, “We found no evidence that calcium and vitamin D supplementation reduces the risk of clinical fractures in women with one or more risk factors for hip fracture.” 8 A 2008 study found, “Vitamin D supplementation adds no extra short-term skeletal benefit to calcium citrate supplementation even in women with vitamin D insufficiency.” 9 And a study at the Bone Mineral Research Center, Winthrop University Hospital, Mineola, NY showed that “Additional intake of 100 mcg vitamin D3 did not lower PTH or markers of bone turnover.” 10

    In fact, there is ample evidence that elevated 1,25-D leads to bone loss. In 1999, Brot et al found “…elevated levels of 1,25-D were strongly associated with decreased bone mineral density and content, and increased bone turnover.” 11 “When levels are above 42 pg/ml 1,25-D stimulates bone osteoclasts. This leads to osteoporosis, dental fractures and calcium deposition into the soft tissues: lungs, breasts, muscle bundles, kidneys.” 12 An earlier study warned, “Vitamin D is a toxic compound, and excessive amounts can cause soft-tissue calcification. There is a narrow leeway between the amount required and that initiating tissue damage.” 13 Kawamori et al found that, “Elevated 1,25-D induces increased production of osteoclasts from stem cells.” 14 And the EMAS study found that “A combination of high 1,25-D and low 25-D is associated with the poorest bone health.” 15 This significant evidence regarding bone loss should motivate medical practitioners and researchers to measure both 25-D and 1,25-D to determine vitamin D status.

    1. Insel PM, Turner ER, Ross D. Discovering nutrition. 2nd ed.

    Boston: Jones and Bartlett; 2006.

    2. Ross AC, Taylor CL, Yaktine AL, Del Valle HB. Dietary Reference

    Intakes for Calcium and Vitamin D. Washington, D.C.: National

    Academy of Sciences; 2010.0-309-16394-3.

    3. Boden SD, Kaplan FS. Calcium homestasis. Orthop Clin North

    Am. Jan 1990;21(1):31-42.

    4. Vidal M, Ramana CV, Dusso AS. Stat1-vitamin D receptor

    interactions antagonize 1,25-dihydroxyvitamin D transcriptional

    activity and nhance stat1-mediated transcription. Mol Cell Biol.

    Apr 2002;22(8):2777-87.

    5. Cranney A, Weiler HA, O’Donnel S, Puil L. Summary of evidence-

    based review on vitamin D efficacy and safety in relation to bone

    health. Am J Clin Nutr. Aug 2008;88(2):513S-519S.

    6. Moyer VA. Vitamin D and Calcium Supplementation to Prevent

    Fractures in Adults: U.S. Preventive Services Task Force

    Recommendation Statement. Ann Intern Med. Feb 2013;[Epub

    ahead of print].

    7. Grant AM, Avenell A, Campbell MK, et al. Oral vitamin D3 ad

    calcium for secondary prevention of low-trauma fractures in

    elderly people (Randomised Evaluation of Calcium Or vitamin D,

    RECORD): a randomized placebo-controlled trial. Lancet. May

    2005;365(9471):1621-8.

    8. Porthouse J, Cockayne S, King C, et al. Randomised controlled

    trial of calcium and supplementation with cholecalciferol (vitamin

    D3) for prevention of fractures in primary care. BMJ. Apr 2005;

    330(7498):1003.

    9. Zhu K, Bruce D, Austin N, Devine A, Ebeling PR, Prince RL.

    Randomized controlled trial of the effects of calcium with or

    without vitamin D on bone structure and bone-related chemistry

    in elderly women with vitamin D insufficiency. J Bone Miner Res.

    Aug 2008;23(8):1343-8.

    10. Aloia J, Bojadzievski T, Yusupov E, et al. The relative influence

    of calcium intake and vitamin D status on serum parathyroid

    hormone and bone turnover biomarkers in a double-blind,

    placebo-controlled parallel group, longitudinal factorial design.

    J Clin Endocrinol Metab. Jul 2010;95(7):3216-24.

    11. Brot C, Jorgensen N, Madsen OR, Jensen LB, Sorensen OH.

    Relationships between bone mineral density, serum vitamin D

    metabolites and calcium:phosphorus intake in healthy peri-

    menopausal women. J Intern Med. May 1999;245(5):509-16.

    12. Ishizuka S, Kurihara N, Miura D, et al. Vitamin D antagonist,

    TEI-9647, inhibits osteoclast formation induced by 1alpha,25-

    dihydroxyvitamin D3 from pagetic, bone marrow cells. J Steroid

    Biochem Mol Biol. May 2004;89-90(1-5):331-4.

    13. Holmes RP, Kummerow FA. The relationship of adequate and

    excessive intake of vitamin D to health and disease. J Am Coll

    Nutr. 1983;2(2):173-99.

    14. Kawamori Y, Katayama Y, Asada N, et al. Role fo vitamin D

    receptor in the neuronal control of the hematopoietic stem cell

    niche. Blood. Dec 2010;116(25):5528-35.

    15. Vanderschueren D, Pye SR, O’Neill TW, et al. Active vitamin D

    (1,25-dihydroxyvitamin D) and bone health in middle-aged and

    elderly men: the European Male Aging Study (EMAS). J Clin

    Endocrinol Metab. Mar 2013;98(3):995-1005.

    Scientific Articles

    Angiotensin II accelerates osteoporosis by activating osteoclasts
    Hideo Shimizu et al. FASEB Journal. 2008;22:2465-2475.
    “Because Ang II caused osteoclast activation, leading to accelerated osteoporosis, angiotensin receptor blockers could lessen the risk of osteoporosis in elderly people, possibly beyond their blood pressure-lowering effect.”

    Angiotensin II Type 2 Receptor Blockade Increases Bone Mass

    Yayoi Izu et al. J. Biol. Chem.,Vol. 284,Issue 8, 4857-4864, Feb 2009

    “AT2 receptor blockade decreases bone resorption and increases bone formation.”

    The Flip Side of Osteoimmunity: Crosstalk Among Stem Cell, BMP-2 and Innate Immune Cells, and the Control of Osteoblastogenesis

    #361251
    cavalier
    Participant

    Interesting Lynne that the evidence for D3 & bones isn’t there I do have osteopenia & I felt that by taking D I was helping that so this has me revisiting this – maybe a good time to revisit my 1,25 status again? I cant remember where that fell at?

    Tx! Jill

    #361252
    A Friend
    Participant

    @PhilC wrote:

    There’s some good info about vitamin D here:
    The Importance of Vitamin D3

    It appears that vitamin D is able to indirectly kill bacteria via several different mechanisms. That being the case, it seems like increasing the dose cautiously would be prudent when it is being prescribed to patients with an “autoimmune” disease.

    Phil

    Morning, Phil… All,
    I was just coming to the Board to find the best place to post a link to important-sounding information saved for quite a while in my Word program. It looks like your post above may relate to the same links/information. Though I somewhat EDIT: regularly read about the research and theories of Dr. Marshall’s work and his research, I could come to no conclusions as related to my own problems, but did several years ago make sure I had the recommended D tests done.

    In the past several years, both my AP physician and my local primary care physician had become concerned with my very low Vitamin D reports, and (in light of all the constant info on Vitamin D research) kept strongly pushing me to take high-dose Vitamin D. As I would read the scientific papers shared in Dr. Marshall’s work, I intuitively resisted supplementing with Vitamin D — and I’m sure what I had been reading over several years in Dr. Marshall’s work had left lingering doubts. I am pasting here one of the primary links about Dr. Marshall’s reasoning, along with my wonderful eye doctor who was also one of the most respected scientists in areas of uveitis/JRA and related immune diagnoses — his and his daughter scientist’s work referred to in this link and beginning words.
    http://www.ra-infection-connection.com/macrophages.htm
    Inflammation in RA, Fibromyalgia, and Sarcoidosis
    Macrophages are immune system cells that normally eat invading foreign microbes and digest them. However, microbiologists have discovered that certain microbes have evolved ways to invade macrophages, to take over their cellular machinery, to form colonies inside the macrophages, and to slowly replicate themselves and form new colonies. MORE……

    [The above link contains verbage linking “the colonies inside the macrophages” to spinal stenosis, etc. which now certainly “gives me pause” about myself supplementing Vitamin D (but this is now like “shutting the barn door after the horse is out” because I gave in and began supplementing with large dose Vitamin D — which triggered months of acute diarrhea and affecting my head/dizziness, etc. Phil, you know this story too well, as you were the one who finally helped me through these.

    In our evaluating what can be “many truths” about Dr. Marshall’s research, and research of others like Drs. Wirostko (E., B., and also a son is in research), and especially the lengthy research contained in the full book online by Dr. Mildred Seelig, “Magnesium in the Pathogenesis of Disease”, (which we can find online, and do searches using key words inside it — magnesium deficiency appears to be a huge part of many of our problems, especially when we actually over-supplement with calcium, which may compound our problems) certainly lays out a further case for our being very cautious. In it, is given very much for us to be cautious about, especially if you find and read the great harm done to children who were supplemented with high dose Vitamin D years ago. There is MUCH that we need to know. However, we human beings are so different in genetic makeup and our needs, that this to me seems to be some of those instances when one size definitely does not fit all of us. So, as Phil says too, let us beware and be cautious. EDIT/ A final (or additional) thought on the above about my own experience is that I wish I had never taken the high-dose Vitamin D that set off the cascade of problems. It has now been a number of months ago that the problems began (very shortly after adding the 5,000 i.u. Vitamin D); and the feeling of wellbeing I’d had for two years prior to this has been shattered a great deal, and I’m hoping to find and address anything now that is standing in the way of getting this back.

    AF

    #361253
    A Friend
    Participant

    @Lynne G./SD wrote:

    Hi Jill;
    I am now on CIR protocol also known as Stillpoint Protocol.Dr B. at Stillpoint in Vancouver is my sister’s doctor and told her she just had to be careful to avoid extra D for the first few months until things got under control.She never used the dark glasses but did cover up when out in the sun.Mind you,up in the Yukon where she lives there is full daylight 24 hours a day and since she has Lupus she had to avoid lots of sun anyway.Today it looks like she is cured and after only 3 years.Here is yesterday’s generated e-mail from CIR.thought some might like to read it.
    letterhead
    Patient News
    [part of Lynne G.’s post deleted here…. Lynne, am wondering if you have the link to the newsletter, and if it might be helpful for it to be live here and show??? On my screen the information is spread out over such a long area, it might discourage viewers from printing it, if they wanted to do this. With a live link to it (if possible), hopefully it could more easily be printed. I do appreciate your posting it here, as is. AF]
    Instant removal with SafeUnsubscribe

    #361254
    Lynne G.SD
    Participant

    Hi Friend;
    This e-mail is auto generated and comes in as an open letter.Therefore it does not have a link.I have not checked but would expect that the CIR site would have it that way.

    #361255
    Valsmum
    Participant

    Does anyone feel better the next day after being out in the sun the day before?

    I noticed I felt a lot better the next day after I spent out in the sun at the pool or beach. vit d ?

    #361256
    A Friend
    Participant

    @Valsmum wrote:

    Does anyone feel better the next day after being out in the sun the day before?

    I noticed I felt a lot better the next day after I spent out in the sun at the pool or beach. vit d ?

    Valsmum,
    Have heard others say the same thing. Don’t know if you recently saw/read the “Grounding” post and information by Dr. Mercola, but the pool/beach/barefoot in the sand, etc. are also good candidates for those good feelings. If you haven’t read any of the posts about grounding, hopefully this link I’m pasting below will access the posts for you.

    viewtopic.php?f=1&t=9248&p=69909&hilit=grounding#p69909

    AF

    #361257
    enzed
    Participant

    @cavalier wrote:

    Doesn’t the Marshall protocol also include mention of Rife machines? That part I think has some merit – I use a Zapper like a Rife it really helps my circulation which was pretty bad.
    But in regard to the Vit D issue – when it mentions TB as being one disease Vit D. can be a not good for – some doc’s have said SD is a mutant of TB – so I have wondered if Vit D even if a immune modulator should be possibly considered to be tempered – what do you all think?

    Jill

    I’d be very interested to read articles by doctors who think “SD is a mutant of TB” – can you please post the source where you found this information?

    When I was diagnosed with SD in 2009, my levels of Vit D were extremely low. I remember the doctor saying that low Vit D levels are very common in SD patients. Now my level is higher, at the low end of what is considered to be the ‘normal’ Vit D range.

    #361258
    A Friend
    Participant

    @enzed wrote:

    @cavalier wrote:

    Doesn’t the Marshall protocol also include mention of Rife machines? That part I think has some merit – I use a Zapper like a Rife it really helps my circulation which was pretty bad.
    But in regard to the Vit D issue – when it mentions TB as being one disease Vit D. can be a not good for – some doc’s have said SD is a mutant of TB – so I have wondered if Vit D even if a immune modulator should be possibly considered to be tempered – what do you all think?

    Jill

    I’d be very interested to read articles by doctors who think “SD is a mutant of TB” – can you please post the source where you found this information?

    When I was diagnosed with SD in 2009, my levels of Vit D were extremely low. I remember the doctor saying that low Vit D levels are very common in SD patients. Now my level is higher, at the low end of what is considered to be the ‘normal’ Vit D range.

    Enzed, Jill, All….

    I was interested to see what might show up if a search was done using the words below:
    Doing a Yahoo search, using the following words, quite a few links were found:
    scleroderma mutant of tuberculosis

    So much was found, and one of these I’m pasting the link for below. It will be interesting to add the word “Vitamin D” to the search words.

    http://www.medicalnewstoday.com/sections/tuberculosis/
    22 May 2013

    Vitamin C Can Kill Drug-Resistant TB Bacteria

    http://www.medicalnewstoday.com/articles/260897.php
    [About the Vitamin C/TB Bacteria article below

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