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» LymeNet Flash » Questions and Discussion » Medical Questions » Vitamin D deficiency? (Page 1)

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Author Topic: Vitamin D deficiency?
trueblue
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My searches have come up fruitless...

Has anybody else tested Vitamin D deficient? Is this something that's typical?


I have to find Vitamin D-3(cholecalciserol) 1000 IU w/o Vitamin A, the stores only have 400IU caps, can't make 1000 out of those. (Sorry, for the math, kids. [Wink] )


I guess it's ordering online for me. grrr... hate to pay shipping.

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charlie
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TB, where you live ought to be the best possible place to get the best possible vit D, from the sun.

Now break out that thong and head for the beach.


Charlie

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mlkeen
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Ths sun is the best source of vitamin D. I remember reading that suppliments are not thought to work exactly like the real thing. Perhaps it was only the D used in milk. The "average" person needs only 10-20 minutes a day to manufacture enough vit D.
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trueblue
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quote:
Originally posted by charlie:
TB, where you live ought to be the best possible place to get the best possible vit D, from the sun.

Now break out that thong and head for the beach.


Charlie

 -
Kind of scary thought, Charlie! [Cool]


Otherwise, the sun thing doesn't seem to have done anything. It can't hurt to see if a supplement works for a few weeks to see if it comes up.

Thanks guys!

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TerryK
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Yes, I have very low vitamin D levels. Your doctor can prescribe 50,000IU and that is what is normally done for someone who has low vitamin D.
Terry

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trueblue
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Thanks for answering, Terry.
Then maybe it's not so low if he's only asking me to add 1000 IU, then, don't know.

How does it manifest and how do you feel differently when it's adjusted?

Curious and slightly confused,
trueblue

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TerryK
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I did a google search "high dose vitamin D" and came up with 1,000 IU
http://www.lef.org/newshop/items/item00251.html

You probably already know this but you must be careful with vitamin D so that you don't get too much. Also, the people who developed the Marshall Protocol feel that vitamin D feeds bacteria. This is not accepted by main stream and I have no idea if it is true or not.

Here is an article I wrote about vitamin D, if you want the link so that you can access the links, let me know and I'll send it to you. I am not a doctor.

The two types used for nutritional supplementation are secosterols ergocalciferol (vitamin D2) which is derived from fungal and plant sources and cholecalciferol (vitamin D3), derived from animal sources.

Vitamin D is the principal regulator of calcium in the body. It enhances the efficiency of calcium absorption, and, to a much lesser extent, phosphorus absorption. Vitamin D also plays a role in the immune system and in blood cell formation. A deficiency is characterized by demineralization of the skeleton.

Sources of Vitamin D
Most vitamin D intake from foods comes from fortified foods such as milk products and breakfast cereals. Foods that naturally contain vitamin D include fish and fish liver oils (like cod liver oil). Vitamin D can be produced in our bodies by the action of sunlight on 7-dehydrocholesterol (a compound in the body that can be manufactured from cholesterol).

Vitamin D Deficiency
Vitamin D is a fat-soluble vitamin and therefore its absorption is adversely affected in those with malabsorption disorders such as Crohn's disease. Those with chronic liver disease, cystic fibrosis, Crohn's disease, diabetes, Whipple's disease and sprue are prone to vitamin D deficiency. Those with reduced exposure to the sun or who use sunscreen are also at risk.

Vitamin D, diabetes and blood sugar
Vitamin D supplementation is associated with a decreased risk of type 1 diabetes. In a study of 10,366 children, vitamin D supplementation decreased the frequency of type 1 diabetes.4

In several studies that we reviewed, a high percentage of diabetic's and subjects at risk for diabetes were low in Vitamin D. Low vitamin D is associated with insulin resistance.5. In a study of 171 subjects who were `at-risk' for diabetes, 47% were vitamin D deficient. Glucose tolerance and insulin secretion were directly related to vitamin D in those with low vitamin D but not in those with normal vitamin D levels. It was shown that Vitamin D treatment prevented worsening of glucose tolerance and reduced insulin resistance.6

Another study suggests that vitamin D3 deficiency may at least partly contribute to the impairment of insulin secretion and probably of insulin action.7 This study and others suggest that vitamin D supplementation (in those that are deficient) is shown to be helpful in the treatment of type 2 diabetes.

Osteoporosis and Vitamin D
Vitamin D deficiency in adults can lead to osteoporosis. In one study that used vitamin D alone, supplementation with vitamin D was shown to reduce hip fractures by 60%. 1

Rickets & Osteomalcia
Vitamin D deficiency causes demineralization of the skeleton and inadequate mineralization of the skeleton is the cause of rickets in children and osteomalcia (soft bones) in adults.

Chronic Fatigue Syndrome, Fibromyalgia and Vitamin D
A study conducted by the University of Minnesota, shows a link between musculoskeletal pain and vitamin D deficiency.
Undetermined Musculoskeletal Pain? Check Your Vitamin D Levels [Fibromyalgia News]

Some doctor's feel that Vitamin D deficiency is often misdiagnosed.
Vitamin D Deficiency: Common Cause of Many Ailments?

"A lot of people with aches and pains and marginal weakness could be helped by vitamin D supplements," said Dr. Paresh Dandona of the State University of New York at Buffalo who reported the first five cases of vitamin D deficient myopathy three years ago."
Vitamin D is Key: Deficiency Linked to Chronic Diseases (Fibromyalgia & Chronic Fatigue Syndrome News)

According to Dr. Teitelbaum, Vitamin D deficiency has been implicated in Chronic Fatigue Syndrome. Please see the link below:
Townsend Letter for Doctors and Patients: Simplifying nutritional support in CFS/Fibromyalgia. (Highly Effective Treatments for Pain and Fatigue).

Obesity and Vitamin D Defeciency
Vitamin D deficiency has been linked with obesity.8 Some speculate that those who are obese are more likely to be deficient because obesity appears to alter the body's ability to produce vitamin D in the skin and to absorb it through the intestines. Others think that Obesity decreases bioavailability of vitamin D(3) because it is deposited in body fat where it is unavailable for use.


Warnings:
An overdose of vitamin D can be toxic with serious side effects. Vitamin D is contraindicated in those with hypercalcemia and in those with hypersensitivity to any component of a vitamin D containing product. Patients with sarcoidosis or hyperparathyroidism should not take vitamin D without consulting with their physician.

Interactions
Supplemental vitamin D should be used cautiously in those on digoxin or any cardiac glycoside. Concomitant use of thiazides and pharmacologic doses of vitamin D may cause hypercalcemia in some. Vitamin D may interfere with the effectivness of Verapamil. People taking Verapamil should ask their prescribing doctor or a nutritionally oriented doctor before using vitamin D containing supplements.2

Anticonvulsant drug therapy can interfere with vitamin D activity as can Isoniazid, an antibiotic used to prevent and treat tuberculosis. Steroidal anti-inflammatory drugs and heparin and Cimetidine may reduce the body's ability to activate vitamin D. Bile acid sequestrants (Cholestryamine, Questran; Colestipol, Colestid) may prevent absorption of fat soluble vitamins such as vitamin D. Doctors can measure levels of activated vitamin D (called 1.25 dihydroxycholecalciferol) to determine whether a deficiency exists.2

Before taking any supplements, consult with your health care provider. This information is not intended to diagnose, treat, cure or prevent any disease. We do not accept any responsibility for the accuracy of the information or the consequences arising from the application, use, or misuse of any of the information contained herein.

References
1. B. Dawson-Hughs et al.,
"Rates of Bone Loss in Postmenopausal Women Randomly Assigned to One of Two Dosages of Vitamin D",
Am J. Clin Nutr 61 (1995): 1140-45

2. Schuyler W. Liniger, Jr. DC, editor in chief, Alan R. Gaby MD, Steve Austin ND, Forrest Batz PharmD, Eric Yarnell ND, Donald J. Brown ND, George Constantine RPh, PHD
"A-Z guide to drug-herb-vitamin interactions",
pg. 17, 28, 47, 61,108, 118

3. Skye W. Liniger, DC, editor in chief, Alan R. Gaby MD, Steve Austin ND, Donald J. Brown ND
"The Natural Pharmacy",
pg. 219

4. Hypponen E, Laara E, Reunanen A, Jarvelin MR, Virtanen SM., "Intake of vitamin D and risk of type 1 diabetes: a birth-cohort study.", Lancet. 2001 Nov 3;358(9292):1500-3.
Entrez PubMed

5.Chiu KC, Chu A, Go VL, Saad MF., "Hypovitaminosis D is associated with insulin resistance and beta cell dysfunction.", Am J Clin Nutr. 2004 May;79(5):820-5.
Entrez PubMed

6. Dr Barbara Boucher, "Vitamin D deficiency in the aetiology of diabetes: repletion with Vitamin D as a measure for prevention of non-insulin dependent diabetes." 29 June 2000

Research Findings Register: summary number 190

7. Borissova AM, Tankova T, Kirilov G, Dakovska L, Kovacheva R., "The effect of vitamin D3 on insulin secretion and peripheral insulin sensitivity in type 2 diabetic patients.", Int J Clin Pract. 2003 May;57(4):258-61.
Entrez PubMed

8. Snijder MB, van Dam RM, Visser M, Deeg DJ, Dekker JM, Bouter LM, Seidell JC, Lips P., "Adiposity in relation to vitamin D status and parathyroid hormone levels a population-based study in older men and women.", J Clin Endocrinol Metab. 2005 Apr 26; [Epub ahead of print]
Entrez PubMed

9. Wortsman J, Matsuoka LY, Chen TC, Lu Z, Holick MF., "Decreased bioavailability of vitamin D in obesity.", J Clin Endocrinol Metab. 2005 Apr 26; [Epub ahead of print]
Entrez PubMed

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TerryK
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Actually, I suppose it depends on the doctor that you are seeing as to whether they prescribe large amounts of vitamin D or not. I don't know that it means that yours is mildly low or not. You should ask your doctor.

I personally could not take 50,000IU. It caused me to lose too much fluid but then I have orthostatic edema and my fluid balance is a big problem anyway. I don't think that it bothers most people that way. I also was not keen on taking huge doses of vit D, I don't think it's a good idea to flood the body with huge doses.

I think getting it from the sun is best but not possible for me because I have orthostatic hypotension and the sun drops my blood pressure and wipes me out, sometimes for days.

The symptoms vary but I believe they are all listed in the article from my last post. I take 1200 IU per day and have for about a year. My levels are better but still low and I haven't noticed much difference in the way I feel.
Terry

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luvs2ride
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Be careful of the sun if you are taking any abx in the tetracycline family. They cause serious rashes and blisters when exposed to the sun. People on the Marshall Protocol avoid the sun entirely.

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trueblue
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Thank you very much for all that information, Terry.

Many of the reasons stated in your article may be responsible for me havinh low levels.

Chronic liver disease (low-moderate level HepC), very little consumption of dairy prducts and some fairly obvious difficulty absorbing and breaking down foods for a start.

I am also heat intolerant and have great difficulty in the sun, I was raised in the norhteast.

I'm certainly willing to take the 1000 iu's for the month and see if the tests are at all different. I ahve an awful lot of pain, fibromayalgia and musculoskeltal problems and think maybe this could be a piece no body had looked at before.

Was never tested for any deficiencies to anything before. The doctor called saying i needed to start taking this as soon as possible (so he must have seen something enough to feel it warranted). I didn't think to ask for actual levels because I was surprised to get he call at all.


Thank you again I'll come back and read this though again in the morning when my brains turned on and see what else i can absorb.

trueblue, making snse a little at a time. [Roll Eyes]

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trueblue
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Thanks luvs, not taking any ABx at this time so don;t have to do the vampire tetra thing at this point.


Must go into my coffin and sleep now though. [Wink] .

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pq
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best to work up to 1000i.u./day,

also, see yahoogroup cfsprotocol. its a group doing vitamin D. many links on vit.D. much discussion on companion mineral/nutrient intake with Vit.D.

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Lydie
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Thanks for all the good information. My teenage daughter was tested and found extremely low (I think 9 out of 43-?). We have been told repeatedly that the majority of people in the northern U.S. are deficient in Vtiamin D. The use of scunscreen has made this problem much more widespread.

She was prescribed the 50,000 units, to take once a week for 8 weeks, along with daily 400 units. She developed a horrible rash while doing this and stopped.

Carlson makes a 2000 IU gel capsule that is supposed to be very easy to absorb.

At this point, she is taking two of the 400 IU (cholecalciferol) w/out any problem.

She was told it is good to raise calcium intake as well, because the deficient D affects (ed) calcium absorption too.

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pq
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Trueblue,

http://health.groups.yahoo.com/group/CFSProtocol/

this is a group,in which many with tbds use vitamin D(vd).
when there, go to teh first 10 messages to get lots of links on vd, and co-factor supps., like boron, magnesium, etc.

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trueblue
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quote:
Originally posted by pq:
best to work up to 1000i.u./day,

also, see yahoogroup cfsprotocol. its a group doing vitamin D. many links on vit.D. much discussion on companion mineral/nutrient intake with Vit.D.

pq,
Thank you for the link to the yahoo group. I'll take a look.

Also, I was wondering why is it best to work up to that dosage? Is there generally a problem tolerating it? Thanks!


I guess I can sign into the yahoo group and see. [Big Grin] (Yahoo groups confuse the **** out of me, never know how to track the darn things.)I'll give it a shot though.

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Healing in Santa Cruz
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My MD just put me on vit D. He gave me an article out of Alternatives Sept/Oct 2004. bioticsresearch.com or call 1-800-231-5777. Its a pretty good article. The clinical importance of vitamin D.
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trueblue
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Thank you for the article, Healing in Santa Cruz!

I saved it to read again; there was lots of interesting stuff there. [Smile]

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pq
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TB

reasons are too many, and many too complex to get into. too time consuming to fetch and post here.
see the yahoogroup, and after getting initial links, search the group with the term Vitamin D, and you should pull up experiences with it.

this site, in med. abstrcts, has an abstrt both on vd, and vit. A , mice, and arthritis.

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trueblue
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Thanks pq,

I will.

I only asked in case there was a short answer. [Wink]

I'll go now.

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Starphoenix
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Recently, I was discovered to be deficient, too.

I was told to take 800 IU per day. I take it in two doses.

My LLPA will test me monthly. Too much can be toxic.

I tested 17 out of 35, I think.

Steph

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trueblue
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Steph ~

Did you jump right into 800 IU a day or start out slower? How long have you been taking it?

Did you have any type of reaction to adding the Vitamin D, as far as you can tell?


I didn't think to ask what the value they got was and don't go back for my results for another few weeks. But apparently it was low enough to fall into deficient range.


Thanks for all the answer and information guys, I really do appreciate them. [Smile]

Doing lots of reading, now remembering... hahahaha

[Big Grin]

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duramater
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I too tested deficient (12 on scale of 20-100) and since then I'm tested every two months to assess the efficacy of my treatment. I started at 200 IU and then upped to 400 IU/day. My test went up to 18 with that. My doc increased me to 800 IU/day and then when my test was the same, upped it to 1200 IU/day. My last test had me at 28. I'll be tested again next week. Unfortunately, I'm too sick to get my Vit D dosage via the sun (plus living in New England...), so I take the Source Naturals brand (iherb has both the 400 and 1000 variety -- I'm conservative with meds/supplements, so I went with the 400).

As for what I noticed, at the time I started treatment, I was having what I thought was excrutiating muscle pain especially in my arms. It honestly felt like the pain was in my bones, but I assumed it was muscular being sick with, at the time, untreated Lyme. After just one dose, the pain was gone for several hours. After a few weeks of treatment, the pain was gone totally. No more percocet needed! Evidently, it really was bone pain and voila. Gone.

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trueblue
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quote:
Originally posted by duramater:
As for what I noticed, at the time I started treatment, I was having what I thought was excrutiating muscle pain especially in my arms. It honestly felt like the pain was in my bones, but I assumed it was muscular being sick with, at the time, untreated Lyme. After just one dose, the pain was gone for several hours. After a few weeks of treatment, the pain was gone totally. No more percocet needed! Evidently, it really was bone pain and voila. Gone.

Thank you so much for telling me this! I've been having bad bone pain for over a year and just kept thinking, that's ridiculous, it must be muscle or connective tissue. Heh, maybe not!

I'm pretty excited to give this a try and am thankful for the new LLMD that thought to test me for things no one else has (in 13 years of intermittent treatment).

Now if the UPS guy will just get here soon...


Feeling pretty hopeful for the first time in a long time. [Smile]

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duramater
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TB:

Here are some links you may also find interesting. Evidently, I wasn't the only person with this problem and response.

Vitamin D & pain article


another Vitamin D/pain article

~dm.

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trueblue
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dm ~ Yes very interesting!

I read something else similar in my travels trying to research this in the past day or so. Makes sense to me.


It's funny, I live in Florida and rarley go out in the sun (It's... um... hot). But even when I do, despite being relatively fair-skinned, I don't really burn and tan very slowly. (I never have, my sister for instance turns into a lobster in moments.)

Who knew I had reflective skin? [Cool]


Thank you again!


edit: I was so excited by the first link I didn't even get to read the second one until just now. [Roll Eyes]

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duramater
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Just as an FYI, when I had this response to my first dose of Vit D (dramatic improvement of pain), I thought it was just a coincidence (I didn't know about the research). The next day, had horrible pain, took Vit D, gone 20 minutes later again.

So, I called a friend who's done quite a bit of Vit. D research and he confirmed the possibility of my response given the kind of D I was taking and its probable absorption rate. I was then pointed to this research. Totally cool and just a bonus as the pain wasn't the reason I was being treated!

My PCP was blown away too and totally psyched. Easy cheap non-narcotic fix for some really serious pain. Good idea indeed to check this in folks that have otherwise inexplicable pain. In fact, good to check even in those with reason for pain -- we all thought it was myalgias associated with Bb. Nope.

Hope you have similar results. Do let us know!

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trueblue
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quote:
Originally posted by duramater:
Hope you have similar results. Do let us know!

Don't worry I will!

Hey, you could have much worse side effects than mysterious relief of pain. [Big Grin]

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trueblue
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Hi!
I'm bringing this up to the top for bluetick.

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trueblue
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Bluetick's thread reminded me I hadn't come back and updated this.


I finally got my test results tuesday and they were as follows:

Vit D, 1,25-dihidroxy = 57
(reference range 15-60)

Vit D, 25-hydroxy = 14 Low
(reference range 20-100)

As far as I can tell your VitD 1,25 comes down as the VitD 25 goes up.


I have been taking the 1000 IU daily and getting another 400 IU in my Multi.

I didn't have any problem adding the 1000 all at once, I didn't notice a significant elevation in temperature but that may be because I run a low grade fever most nights anyway.


I did feel better once starting it, had a reduction in inflammation and my twitching completely stopped for a few weeks. (Until I got that flu and took the z-pak of Zith, but the twitching seems to be subsiding again.)


I have not been retested only told to keep going. I'm not sure this amount is enough to raise the low level any time soon.

(From what little reading I've done, I think this amount is about what's needed for someone my age and gender to just maintain the level.)

I'm wondering if I shouldn't ask if I can go a little higher on it, since there does seem to be an obvious benefit for me.


Thank you for all the help and information you all provided me with. I think I should go back and review the whole thread as I only remember bits and pieces. [Roll Eyes]

--------------------
more light, more love
more truth and more innovation

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dguy
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That 57:14 ratio is quite abnormal, found in fewer than 1% of the population, I believe. Very few things can account for such an extreme ratio, but one thing apparently is Lyme. It could well indicate your infection is quite pervasive and significant, and the bugs are rapidly converting the 25D to the 1,25D. My ratio was similar.

One way I figured out that my low 25D was not the problem, but rather the high 1,25D was, was by trying calcitriol supplements. Calcitrol = 1,25D. It made my symptoms even worse.

Another way: if I supplemented with 1000 IU D3 for one day, I'd feel better later that day and the next, but then worse, as that D3 got converted to 25D and then to 1,25D. I was just adding more fuel to the fire by taking D3.

The Marshall Protocol reports excellent success with people who have such abnormal D ratios. It might be a treatment to consider.

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Marnie
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I have 7 vitamin D MS word files...if anyone wants them, send me a pvt message and I will reply.
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kelmo
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Marnie, I would like your Vitamin D information. I couldn't reach you through PM.

Thanks
Kelly

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Al
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YES: I TESTED VERY LOW FOR VIT.D ;
THE TEST WAS AT THE END OF SUMMER. I WORK OUTSIDE SO I GET PLENTY OF SUN.
I was given 50,000 units pr. week for 5 weeks and my levels returned to normal.
I don't know if it's lyme related or not but I seem to remember a few mentions of this in the past.
Al

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Dave6002
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Eur J Clin Nutr. 2004 Aug;58(8):1095-109.

Multiple sclerosis and vitamin D: an update.

* VanAmerongen BM,
* Dijkstra CD,
* Lips P,
* Polman CH.

Department of Molecular Cell Biology and Immunology, VU Medical Center, Amsterdam, The Netherlands. [email protected]

MS is a chronic, immune-mediated inflammatory and neurodegenerative disease of the central nervous system (CNS), with an etiology that is not yet fully understood. The prevalence of MS is highest where environmental supplies of vitamin D are lowest. It is well recognized that the active hormonal form of vitamin D, 1,25-dihydroxyvitamin D (1,25-(OH)(2)D), is a natural immunoregulator with anti-inflammatory action. The mechanism by which vitamin D nutrition is thought to influence MS involves paracrine or autocrine metabolism of 25OHD by cells expressing the enzyme 1 alpha-OHase in peripheral tissues involved in immune and neural function. Administration of the active metabolite 1,25-(OH)(2)D in mice and rats with experimental allergic encephalomyelitis (EAE, an animal model of MS) not only prevented, but also reduced disease activity. 1,25-(OH)(2)D alters dendritic cell and T-cell function and regulates macrophages in EAE. Interestingly, 1,25-(OH)(2)D is thought to be operating on CNS constituent cells as well. Vitamin D deficiency is caused by insufficient sunlight exposure or low dietary vitamin D(3) intake. Subtle defects in vitamin D metabolism, including genetic polymorphisms related to vitamin D, might possibly be involved as well. Optimal 25OHD serum concentrations, throughout the year, may be beneficial for patients with MS, both to obtain immune-mediated suppression of disease activity, and also to decrease disease-related complications, including increased bone resorption, fractures, and muscle weakness.

PMID: 15054436 [PubMed - indexed for MEDLINE]

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Dave6002
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Occup Environ Med. 2000 Jun;57(6):418-21.


Mortality from multiple sclerosis and exposure to residential and occupational solar radiation: a case-control study based on death certificates.

* Freedman DM,
* Dosemeci M,
* Alavanja MC.

Radiation Epidemiology Branch, National Cancer Institute, 6120 Executive Boulevard, Bethesda, Maryland 20892, USA. [email protected]

OBJECTIVES: To explore whether mortality from multiple sclerosis is negatively associated with exposure to sunlight.

METHODS: Two case-control studies based on death certificates were conducted for mortality from multiple sclerosis and non-melanoma skin cancer (as a positive control) to examine associations with residential and occupational exposure to sunlight.

Cases were all deaths from multiple sclerosis between 1984 and 1995 in 24 states of the United States.

Controls, which were age frequency matched to a series of cases, excluded cancer and certain neurological deaths.

The effects of occupational exposure to sunlight were assessed among subjects with usual occupations requiring substantial activity, so as to exclude those whose indoor jobs resulted from disabilities subsequent to the onset of the disease.

Multiple logistic regression analyses were applied, with adjustment for age, sex, race, and socioeconomic status.

RESULTS: Unlike mortality from skin cancer, mortality from multiple sclerosis was negatively associated with residential exposure to sunlight (odds ratio (OR)=0.53 (multiple sclerosis) and OR=1.24 (skin cancer)).

Odds ratios for the highest occupational exposure to sunlight were 0.74 (95% confidence interval (95% CI) 0.61 to 0.89) for mortality from multiple sclerosis, compared with 1.21 (1.09 to 1.34) for mortality from non-melanoma skin cancer.

The OR was 0.24 for the combined effect of the highest levels of residential and occupational exposure to sunlight on multiple sclerosis, compared with an OR of 1.38 for skin cancer.

CONCLUSIONS: In this exploratory study, mortality from multiple sclerosis, unlike mortality from skin cancer, was negatively associated with both residential and occupational exposure to sunlight.

PMID: 10810132 [PubMed - indexed for MEDLINE]

[ 08. March 2007, 09:42 PM: Message edited by: Dave6002 ]

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Dave6002
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The geographic distribution of MS: nearly
zero in equatorial regions and increases markedly with latitude, suggests a striking correlation between sunlight and MS.

The synthesis of vitamin D in skin is catalyzed by sun light. Low-sunlight conditions in western hemisphere may cause insufficient production of vitamin D, resulting in an impaired immune regulation and development of CNS inflammation and demyelination in MS.

Vitamin D deficiency is commonly observed in MS patients and treatment with vitamin D supplements decreases the incidence of relapses and severity of the disease.

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lymednva
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True,

I recently tested low for Vit. D also. My LLMD told me to supplement. I ordered from Vitacost. I figure the cost of shipping isn't much different from the cost of driving these days! [bonk]

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Lymednva

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lifeline
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After many years of having osteoporosis, I was tested for Vit D and tested quite low. I have been taking Fosamax for osteoporosis and now take FosamaxD which gives an added 400 Vit D daily. Plus, with all the calcium I take that has Vit D, my numbers are okay.

So, for those that have osteoporosis, Vit D testing might be an option.

lifeline

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dguy
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The most important thing to take away from this string is that there are multiple forms of vitamin D.

If your doctor orders a standard vitamin D test, only 25D will be tested. In most Lymies, 25D is low because the bacteria are busily converting it to 1,25D. If you then consume more vitamin D via diet or supplements, you are giving the infection more fuel.

A proper test measures both 25D and 1,25D. Low 25D coupled with high 1,25D is a good indication you are infected.

1,25D is the active form of the vitamin, that is, the type our bodies use. Since the infection manufactures it, most Lymies have too much 1,25D, and therefore no reason to take more via diet or supplementation.

To avoid being misled by a low 25D, get an accurate picture of your vitamin D levels by testing both 25D and 1,25D.

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kelmo
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cave, I TOTALLY agree with you on Fosomax. That drug will never cross my lips. Fosomax holds on to ALL bone cells, even the dead, brittle ones.

Anyone I know taking it has problems with their esophogus, stomach, or are growing nodules on their bones...jaws, heels, etc.

The BEST thing you can do for your bone health is to make sure you have a balance of good natural progesterone and estrogen.

Progesterone cleanses the system of dead cells, estrogen creates cells. When new cells are created, they are stronger than the ones removed.

Thanks for the information on the Vitamin D. I have learned a lot, and realize that it's not just simply a matter of taking a supplement. It has to be the right supplement for the right reason.

You've given me a lot of food for thought.

Kelly

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susan2health
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Marnie, would you send me the files?

Dguy, thanks. I keep upping my cod liver oil, and my 25D is not going up.

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trueblue
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Hi Susan and Kelmo ~

Marnie's response on this thread is from last April. I don't imagine she'll see a request posted here.

you might want to contact her by PM or start a thread with her name in the title to get her attention.

Good luck, I hope she still has the files you're asking for.

--------------------
more light, more love
more truth and more innovation

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kelmo
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Her PM is disabled. I'll try the HEADLINE.

Kelly

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canbravelyme
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quote:
Originally posted by dguy:
If your doctor orders a standard vitamin D test, only 25D will be tested. In most Lymies, 25D is low because the bacteria are busily converting it to 1,25D. If you then consume more vitamin D via diet or supplements, you are giving the infection more fuel.

This is what I would love to know: Is there some way for us to "mop up" the 1,25D? Using Beta Carotene, for instance? I just tested deficient in Vit D (likely the 25D), but I'm thoroughly convinced that I actually have _way_ too much Vitamin D going on, because of the way I want to scream when any light touches my skin.

Your thoughts?

With best wishes for great health for all,

canbravelyme.

--------------------
For medical advice related to Lyme disease, please see an ILADS physician.

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kelmo
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When my daughter started the "D" she had a MAJOR HERX. We were afraid, as well, that she was D overloaded.

When we told our doc he reaction, he was very excited, and said that it showed she was severely deficient.

When you spend ten minutes in the sun, you absorb at least 10,000 IUs of D. Compare that to one 400IU supplement every day. What does that mean to the people working outside all day? Are they D overdosed?

My daughter has worked up to a couple of minutes of sun a day, unprotected. She no longer gets as sick as she did that first four days.

We aren't doing any testing, she doesn't go outside, she MUST be D deficient. It's a natural antibiotic, so you may have a herx reaction.

If you don't want 10,000 IUs of D, don't go outside unprotected. Work up slowly with 400IU caps every other day.

My opinion.

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dguy
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quote:
Originally posted by canbravelyme:
This is what I would love to know: Is there some way for us to "mop up" the 1,25D? Using Beta Carotene, for instance? I just tested deficient in Vit D (likely the 25D), but I'm thoroughly convinced that I actually have _way_ too much Vitamin D going on, because of the way I want to scream when any light touches my skin.

I've wondered similar, and thought about more direct filtration of the cause: if the Lyme spirochetes are circulating via blood, can't we filter them out via a process similar to dialysis? Yes, some spirochetes will hide in tissue, but the total infection load on the body will be much reduced, speeding recovery.

The only way I know of to reduce vitamin D at present is to avoid ingestion and minimize light exposure.

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dguy
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quote:
Originally posted by kelmo:

My daughter has worked up to a couple of minutes of sun a day, unprotected. She no longer gets as sick as she did that first four days.

If your daughter is D deficient and not infected with spirochetal bacteria, then adding D seems reasonable.

However, if she is infected with Lyme, then sun exposure is ill-advised since it will decrease her immune response. She may feel better (less immune response, less inflammation) but her infection will be spreading.

Vitamin D is a steroid precursor. Conventional medicine agrees you don't give steroids to people with infections because those steroids turn down the infection fighting ability of the person's immune system.

From http://www.vivo.colostate.edu/hbooks/pathphys/endocrine/otherendo/vitamind.html

"Bioactive vitamin D or calcitriol is a steroid hormone."

Regarding vitamin D's antibiotic effect that you mention, according to http://www.medicalnewstoday.com/medicalnews.php?newsid=51913

the peptides vitamin D produce "directly and rapidly destroy the cell walls of bacteria, fungi, and viruses, including the influenza virus."

So, the antibiotic mechanism is the destruction of the infection's cell walls.

But spirochetal bacteria like Lyme *don't have cell walls*! They are cell-wall deficient bacteria. Thus they cannot be killed via this mechanism.

I'm not a doctor, but IMO your daughter is now feeling better because the light exposure has ramped up her vitamin D steroids, and those steroids are turning down her immune response. If this is what is happening, she might feel better in the short term, but this will allow the infection to grow worse and she will be much sicker in the future.

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gwenb
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Here are some links that I urge everyone to read regarding Vit D. See if you have Vit D deficiency signs such as sore bones, dense breasts, high blood pressure, psoriasis, Syndrome X etc, I have all of these symptoms, plus the fact that I live in Canada, where you can't get enough Vit D from sunshine 6 months of the year.

There is an endless supply of studies linking low levels of vitamin D to an increased risk of breast, colon and prostate cancer. There are literally hundreds of studies presenting very compelling data. Also Vit D deficiency is implicated in rheumatoid arthritis and MS, both of which Lyme disease is frequently misdiagnosed as.

Most North Americans are deficient in Vit D. There is compelling scientific evidence that the current RDA of 400 IU is likely far below what is needed to help prevent cancer. The 400 IU RDA is the threshhold needed to ward off rickets but not much else.

Because of our radically reduced sun exposure, compared to 100 years ago, through both avoidance and sunscreen we are likely making ourselves vulnerable to an increased cancer risk. In the next 5 years I am sure we will see a substantial increase in the Vit D RDA levels.

To be on the safe side people should get their base-line Vitamin D levels checked before supplementing, just make sure you get the right levels checked. Refer to the Vit D Council link below for what test to take.


http://cebp.aacrjournals.org/cgi/content/abstract/14/7/1653

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17241782&query_hl=9&itool=pubmed_DocSum

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17230473&query_hl=9&itool=pubmed_DocSum

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17229569&query_hl=9&itool=pubmed_DocSum

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17229569&query_hl=9&itool=pubmed_DocSum

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?holding=npg&cmd=Retrieve&db=PubMed&list_uids=2263572&dopt=Abstract

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?itool=abstractplus&db=pubmed&cmd=Retrieve&dopt=abstractplus&list_uids=16886679

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?itool=abstractplus&db=pubmed&cmd=Retrieve&dopt=abstractplus&list_uids=17149699

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=7721513&query_hl=5&itool=pubmed_docsum

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?itool=abstractplus&db=pubmed&cmd=Retrieve&dopt=abstractplus&list_uids=11934953

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17296473&query_hl=9&itool=pubmed_DocSum

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17207891&query_hl=9&itool=pubmed_DocSum

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17290055&query_hl=9&itool=pubmed_DocSum

http://courses.washington.edu/bonephys/opvitD.html
http://jn.nutrition.org/cgi/content/abstract/136/4/1117

http://www.vitamindcouncil.com/

Gwen

[ 05. March 2007, 09:14 PM: Message edited by: gwenb ]

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kelmo
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Doesn't vitamin D help with glutithione (sp?), and isn't that a necessary component to fighting the disease?

She hasn't ever shown positive for borellia. She is bartonella heavy, and now testing for babesia.

We don't follow the Marshall Protocol. We do, however follow a protocol that is controversial. No magnesium supplementation.

As the bacteria die off, the mag is released back into the body.

We will continue the vitamin D path before her teeth fall out and her bones snap. The bacteria aren't releasing vitamin D back into her system.

If we're wrong, we'll stop. But, for now autoimmune titers are dropping.

Kelly

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gwenb
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This video is a great introduction to Vit-D. Well worth watching.

http://www.insinc.com/onlinetv/directms13oct2005/softvnetplayer.htm

Gwen

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dguy
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quote:
Originally posted by kelmo:

If we're wrong, we'll stop. But, for now autoimmune titers are dropping.

Aha, well, if instead your daughter has been documented with an autoimmune condition (Th17 or Th2 overexpression), that's quite different from what most lymies are dealing with (Th1 overexpression).

That would suggest a therapy opposite to what would be best for lymies, as you are trying.

Here are some technical articles about automimmunity and Th2:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17322576&query_hl=11&itool=pubmed_docsum

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17192582&query_hl=11&itool=pubmed_docsum

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17083345&query_hl=11&itool=pubmed_DocSum

For a less technical discussion, see

http://findarticles.com/p/articles/mi_m0FDN/is_3_8/ai_107835434

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kelmo
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Thank you, both, for your hard work and research. I'll look into it.

Kelly

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trueblue
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Thank you for all the links and video GwenB and dguy (I'm not sure I agree with your hypothesis, dguy).

I have no idea about what's dominant and thought TBDs could, and do, flip back and forth. I may be misunderstanding that, as i don't actually understand it at all.


That said after supplementing Vit D3 for 6 months(3 months at 1400 mg and 3 months at 2400) I am still low in Vit D, calcium and glutathione levels. My magnesium levels are fine without adding any. Seems to me I'm not supplementing enough.

Perhaps I fall into the group where I have more other things going on than keets. About 4 or 5 viruses, B. macroti and likely Bart (maybe other stuff not yet found).


I don't seem to have any ill effects from supplementing and think I may feel slightly better with it. I think for me it's more important to take care of an obvious deficiency and will take my chances.


Thanks for bringing this around Kelly, I was surprised when it surfaced, but read a lot of interesting stuff and watched the video. [Smile]

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kelmo
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I'm bringing this back up because I believe that this improvement is due to the addition of Vitamin D.

My daughter's ANA titers have been hovering around 1:640 for a couple of years. She started supplementing D in January. The last three blood tests have shown a decrease in the titers. 1:140, 1:320, today...1:116!!


Just wanted to share.

Kelly

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gwenb
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Here is one more very interesting link regarding how the RDA for Vitamin D is set much much too low. http://jn.nutrition.org/cgi/content/full/135/2/317

I think Vitamin D could be the missing link for a lot of people.

Gwen

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trueblue
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Thank you, yet again Gwen!

I think I'm going to ask to have my Vit D 25 hydroxy and 1,25 hydroxy retested. In the not too distant future.

I'd like to see if the supplementation is making any dent at all or if the dose really needs to be considerably higher. I'm hovering around 2000 these days after a few months of 1000. Calcium and D are still low and magnesium is fine. According to intracellular tests that last time. I'd like to repeat the original tests for comparision.

Having little medical knowledge I sort of suspect the intracellular test may show a delayed response. I'm adding this to my list of things to quiz the the doc about.


Thank loads for plying me with information and things I can both understand and use. [kiss]

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klutzo
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dguy,
Are you suggesting that someone with a normal ratio of I25D to 25D would not have Lyme? Could this be a reliable test? (At least as reliable as any other).

My 25D is normal, and my ratio is perfect (1.08). I am also VERY TH2 dominant, to the point where it has been life-threatening more than once. However, I have two very positive Bowen tests for Lyme.

There also seems to be quite a controversy over the "normal" ranges for 25D. Many integrative and alt. docs insist the norms were compiled from test results from an already deficient population. They say the optimal level is much higher than the current norm.

Klutzo

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kelmo
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My doc did not think a blood test was necessary. The herx she had spoke volumes to him of her deficiency.

Kelly

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Kawai
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I was misdiagnosed with MS until a LLMD said it wasn't MS, but lyme disease.

One of the reasons he felt it was a misdiagnosis is that my vitamin D level was extremely high.

I'm from Wisconsin so it can't be too much sun.

Is this a significant marker for either lyme or MS? I thought MS was associated with low vitamin D.

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gwenb
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You need to make sure that you get the right test. If you look at the links that I provided above from the Vit D Research Council, it will tell you which test is the correct one to take.

My understanding, is that some doctors use the wrong test, which can be misleading, as one it often shows high levels of a certain type of vitamin D, when in fact the level that should be tested is actually very low.

Just to make things more confusing.

Gwen

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Leonard
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Interesting to see this topic came up today. Yesterday I had a phone conference with my LLMD. He asked how I was doing and I told him that I was ready for spring and thought warm weather would help. He said that was interesting since he has just been doing some reasearch and noticed more Lyme in the northern half of the country. He thought that could be due to the shortage of sunshine and heat in the winter.

This goes right along with this topic and I can't wait to put on shorts and sit in the sun at the campgrounds.

He also recommended tying some Vit. D as I wait for spring and summer.

Leonard

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dguy
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quote:
Originally posted by klutzo:
dguy,
Are you suggesting that someone with a normal ratio of I25D to 25D would not have Lyme? Could this be a reliable test? (At least as reliable as any other).

A normal D ratio does not rule out Lyme. If something else is boosting your Th2 side, that may be exerting a balacing act, compensating for the Th1 boost that Lyme will produce. Perhaps that then causes your D ratios to be normal? I'm just speculating.
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dguy
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quote:
Originally posted by kelmo:
My doc did not think a blood test was necessary. The herx she had spoke volumes to him of her deficiency.

I thought of something else. Ask the doctor if steroids would reduce the autoimmune titers. Steroids supress the immune system, something very unwise when an infection is present.

If so, then you've found the likely mechanism by which the vitamin D (a steroid) supplements your daughter is taking are reducing the autoimmune titers: they are supressing her immune system.

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kelmo
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I'll ask him. That would be interesting to know.

He doesn't consider D to be a steroid, but a natural antibiotic.

That would support the Marshall protocol, would it not? No sun equals healing?

Kelly

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trueblue
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My understanding was Vit D works as a hormone precursor. I haven't seen anything saying steriod.

Have I missed something (definately not impossible) and if so can you point me to where that reference might be?

[confused]

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kelmo
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I googled all of those terms: Vitamin D steroids; vitamin D natural antibiotic; vitamin D hormone.

What I learned was that it is seen as all three. It's an amazing vitamin. The steroid aspect is actually a sixth generation precurser to sterol. It's not a big player.

It is highly effective as a natural antibiotic, and a hormone precurser. It says it's good for thyroid.

The only negative I saw was on Dr. Mercola's website. He was the only one that went into overdose warnings.

Think of all the people that work outside all day getting thousand upon thousands of units of vitamin D. It would take more than 400IUs a day to put you over the line.

Kelly

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trueblue
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Thanks Kelly!

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Cathy DeVoe
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I also tested low for vit D and my LLMD had me start taking 3000IU every day with retesting every 3 mths. She said this could even help my neuropathy a little and I believe it has. Magnesium and Vit D are the 2 supplements people in the US are most deficient in.
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dguy
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quote:
Originally posted by trueblue:
My understanding was Vit D works as a hormone precursor. I haven't seen anything saying steriod.

Have I missed something (definately not impossible) and if so can you point me to where that reference might be?

It's very important to keep in mind that "vitamin D" takes many forms. That's the most important bit of info to glean from this long message string.

So, when someone says, "My vitamin D is low" the question to ask is "Which vitamin D?" Vitamin 25D (the kind frequently tested) is typically low in lymies. Vitamin 1,25D (the kind less frequently tested) is usually high.

Our bodies convert 25D to 1,25D, and so does the infection, excessively in fact.

1,25D is considered a steroid. From http://vitamind.ucr.edu/milk.html

"This sunlight- generated vitamin D3 is a precursor of the steroid hormone 1a,25(OH)2D3."

So, the infection boosts 1,25D, and since that is a steroid, it damps down our immune system, making things all the more cozy for the infection. This is quite a survival trick found by a little bacterium!

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gwenb
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In regards to Vitamin D dampening our immune system, I believe the exact opposite is true.

Read below for this fascinating article on Vitamin D fighting TB. Pay special attention to how vitamin D helps attack "intracellular Mycobacterium tuberculosis."


1: Science. 2006 Mar 24;311(5768):1770-3. Epub 2006 Feb 23. Links

Comment in:

Science. 2006 Jun 30;312(5782):1874-5; author reply 1874-5.

Toll-like receptor triggering of a vitamin D-mediated human antimicrobial response.

Liu PT, Stenger S, Li H, Wenzel L, Tan BH, Krutzik SR, Ochoa MT, Schauber J, Wu K, Meinken C, Kamen DL, Wagner M, Bals R, Steinmeyer A, Zugel U, Gallo RL, Eisenberg D, Hewison M, Hollis BW, Adams JS, Bloom BR, Modlin RL.
Department of Microbiology, Immunology, and Molecular Genetics, University of California at Los Angeles, Los Angeles, CA 90095, USA.

In innate immune responses, activation of Toll-like receptors (TLRs) triggers direct antimicrobial activity against intracellular bacteria, which in murine, but not human, monocytes and macrophages is mediated principally by nitric oxide. We report here that TLR activation of human macrophages up-regulated expression of the vitamin D receptor and the vitamin D-1-hydroxylase genes, leading to induction of the antimicrobial peptide cathelicidin and killing of intracellular Mycobacterium tuberculosis. We also observed that sera from African-American individuals, known to have increased susceptibility to tuberculosis, had low 25-hydroxyvitamin D and were inefficient in supporting cathelicidin messenger RNA induction. These data support a link between TLRs and vitamin D-mediated innate immunity and suggest that differences in ability of human populations to produce vitamin D may contribute to susceptibility to microbial infection.

PMID: 16497887 [PubMed - indexed for MEDLINE]


Gwen B

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trueblue
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Thank you dguy and GwenB!
If I'm not careful I might actually learn something. [Wink]

Seriously, I do appreciate the input, opinions and especially the scientific stuff. [Smile]


I do plan to ask to be retested and see if the numbers have moved. I was tested for 25 and 1,25 to begin with. I can't see any reason not to have them run again a year later.

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gwenb
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More links on Vit D helping to fight infection, specifically TB.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16497887&query_hl=11&itool=pubmed_DocSum

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=14643635&query_hl=11&itool=pubmed_DocSum

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16959053&query_hl=22&itool=pubmed_DocSum

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16886686&query_hl=22&itool=pubmed_DocSum

Gwen

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trueblue
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Thanks Gwen!
I am reading them all, you know.

I hadn't read the last 2 before. I feel better and better seeing the amount of abstracts on this. I had read some before but it's great to see them all in one place.

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Cass A
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I was on high doses of Vit D3 under advice from a friend, and I started getting severe dry and itcy eyes and my husband got heart arythmia (he was on it too)

When I found the Marshall Protocol, that made total sense to me--with Lyme, the bacteria use the ingested D for their own protection and cameoflage. You feel better for awhile, then....

A low 25D and a high 1,25 D, according to Trevor Marshall, means that the bacteria are causing a major inflammatory reaction. Any 1,25 D over 45 is into the hypervitaminosis D range bigtime--and those are many symptoms of Lyme.

As a result, I started avoiding foods containing Vit D and sun, and am doing much better, although I'm not on anyone's protocol as yet.

If Marshall is right, taking high doses of Vit D when you have Lyme is like shooting yourself in the foot.

Love,

Cassandra

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dguy
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quote:
Originally posted by gwenb:
In regards to Vitamin D dampening our immune system, I believe the exact opposite is true.

Read below for this fascinating article on Vitamin D fighting TB. Pay special attention to how vitamin D helps attack "intracellular Mycobacterium tuberculosis."

This issue was discussed a few messages back.

Regarding vitamin D's antibiotic effect that you mention, according to http://www.medicalnewstoday.com/medicalnews.php?newsid=51913

the peptides vitamin D produce "directly and rapidly destroy the cell walls of bacteria, fungi, and viruses, including the influenza virus."

So, the antibiotic mechanism is the destruction of the cell walls of Mycobacterium tuberculosis

But spirochetal bacteria like Lyme *don't have cell walls*! They are cell-wall deficient bacteria. Thus they cannot be killed via this mechanism.

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