According to the report, it's the Total level that determines therapy recs.
It also states levels <20 indicate a deficiency.
But, I have read numerous times in medical research articles that a level below 40 is considered deficient.
I have been diagnosed with "probable MS" and lyme.
I have read of a possible link w/ low vitamin D and autoimmune diseases such as MS.
I have heard of the Marshall protocal where vit D levels are kept low.
My questions: 1) Is it low levels of vit D over time that lead to MS? 2) Are low levels common in chronic lyme? 3) I'm not comfortable w/ keeping my levels low...there is too much research linking low Vit D to MANY diseases..... 4) What are others doing re: supplementation?
Posts: 55 | From North Carolina | Registered: Dec 2007
| IP: Logged |
Shosty
Unregistered
posted
Your levels aren't terribly low. Take D3 supplements, and take more in the winter months to compensate for less sun (depending on where you are). I recently purchased a form of D that comes in a little bottle w/eyedropper. It is a liquid form in olive oil, and a mere drop equals 1,000 mg. You would want to do 1,000-2,000/day, again, depending on where you are, your age, and your bone status.
You are certainly not going to get MS because of a D level in the high 20's. You can relax on that as a cause or contributor.
So, what exactly do you mean by "probably MS"? Have you been tested for Lyme? Do you have any positive autoimmune labs?
At any rate, your D levels are probably better than many people's, but should be over 40, as you said.
IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
tracisuzanne
My doctor is a rheumatologist who believes in infectious causes. She is a member of ILADS. She disagrees with Trevor Marshall about D.
I have read consistently that people with sarcoidosis, which Trevor had, should avoid D. The rest of us most definitely should not.
I tested low in my D levels, even the 1.25 thing Trevor speaks of. I have lyme induced Rheum. Arthritis and I supplement 5000 IU daily of Vit D3. It made noticeable improvement.
Recent research from Canada and from NIH show a significant reduction in certain cancers (60% reduction) when we increase our Vit D3 intake. As a result of these studies, they have raised the RDA from 200IU to 2000IU for healthy people.
Getting it from the sun is the best and safest source, but you must live on a latitude equal to Mississipi and lower in order to get enough sun in the winter time. The farther north you live, the more important it is to supplement. 30 mins of sun daily is supposed to be enough when in the right regions.
Vit D3 is the source to supplement as it is best absorbed by the body. I also read that you should take calcium citrate in order to keep your bones strong. The D and the calcium work together. Of course, magnesium is also important and most of us are deficient because the bacteria love magnesium.
Because it feeds bacteria, some doctors say don't supplement mag and others say take lots of mag. Take it to bowel tolerance. My doctor is in the "take lots of mag" court and it makes the most sense to me. I need magnesium to thrive and if the bugs are robbing me, then I must keep replenishing it so I get some too. We will kill the bugs another way. Depriving them of nutrients I need will only kill me. They will find a new host.
I'm not a doctor. Just sharing what I have learned and what works for me.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
I grew up in Rhode Island, college in Mass. I've lived N. Carolina for 12 years. I am very active most of the year....cycling, running, lots of sun exposure minus a mere 15 SPF on arms, face, neck (not legs) when cycling for hours.....appears to be lots of sun....
Shosty- "Probable MS" is what the neurologist said. Some signs, but not "classic"....he seemed unsure.
The 2nd opinion specialist neuro said yes to MS. This was at the 1st consult, after I had been experiencing very minor numbness in a few fingertips for 2-3 months, and negative cervical MRI, and positive white spots on brain MRI, and positive oligoclonal bands in spinal fluid.
I don't see either of these neuros anymore because they were arrogant and somewhat mean to me. I'm trying to find a moe open-minded neuro.
I then went to a LLMD, just for another opinion. I got a positive IgG and IgM from Igenex and I have a pretty low CD57. That's were I had the vit D test done as part of a comp. panel.
I'm on 3 antibiotics, and other supplements and herbals. I've been taking 1000IU vit D3.
Posts: 55 | From North Carolina | Registered: Dec 2007
| IP: Logged |
posted
A 25D of 29 isn't especially low. What's your 1,25D level?
Disregulated vitamin D levels are common in all the L-form infections, including lyme, because L-form bacteria excessively convert 25D to 1,25D outside the normal control of our bodies. This creates the 25D deficiency and 1,25D excess that so many of us here have. When this is occurring, supplementing with vitamin D won't solve the problem because low D is just a symptom, not the cause of the trouble. Instead the supplements will provide more "fuel" for the bacteria, resulting in higher 1,25D levels. Excessively high 1,25D levels weaken teeth and bones.
Furthermore, vitamin D is a form of a steroid, and it is well known that steroids suppress the immune system. Since minimizing vitamin D, my teeth stopped breaking and my immune system has been making more progress against the infection. It was the key to me finally gaining ground and getting better. Those who have failed to make progress despite treatment might do well to consider if vitamin D intake is holding them back.
Posts: 727 | From USA | Registered: Mar 2006
| IP: Logged |
posted
Shosty, if you took 1000mg of vit.D on a daily basis you'd become ill and possibly die, D doses are measured in International Units and these are fractions of a milligram. 1000 IU of is on the order of micrograms. 1-2000 IU per day is a reasonable adult dose. 32ng/ml is the cut off for calcium absorption from the intestine, so that is what I consider to be the lowest you should let it get.
Some lymies, and some people with sarcoidosis, have an up regulated enzyme that converts 25OHD into 1,25diOHD. When this is the case, 25 rapidly converts to 1,25 so the former is usually low and the latter is high.
Such a person taking D supplements may have an untoward reaction. When taking D, it is best to start low and go slow, 400 IU per day for a few days, then 800/day for a few days and so on, to a dose somewhere between 1-2000 IU/day. Some proponents advocate a dose of 1000 IU per 25 lbs of body weight, if you do this you MUST periodically retest.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
| IP: Logged |
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
I take 5000 IU aday of D3...It is not an "over dose" amount. I know of a MSer who's neuro told her to take up to 10,000 IU of D3 a day.
Ask your MD what is the amount he recommend for you.
Posts: 2675 | From ct, usa | Registered: Jan 2004
| IP: Logged |
posted
Higher doses than 2000 IU per day are not uncommon, but I reiterate: People taking such high doses should have their levels periodically retested, there is such a thing as vitamin D toxicity.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
| IP: Logged |
Shosty
Unregistered
posted
sorry, the mg was a mistake..I usually write IU's! I have been working up slowly. My daughter's vit. D was very low, so they gave her 50,000 IU to take once a week. She got very sick w/a rash all over her thighs. So, I agree, folks, be careful! I have osteoporosis as well, and seeking alternative advice on that too, since I do not want to take Fosamax or Actonel.
IP: Logged |
quote:Originally posted by DoctorLuddite: Higher doses than 2000 IU per day are not uncommon, but I reiterate: People taking such high doses should have their levels periodically retested, there is such a thing as vitamin D toxicity.
I tend to agree. My LLMD put me on 4000IU a day. My 25-hydroxyl levels were 19 - pretty bad. I'm up to 80, and the doc said I could go up to 100, which I'm not comfortable with. I reduced my intake to 2000IU/day and I am to be retested in March. My 1.25 levels have always been in the middle of the normal range, so that's not an issue.
Definitely one should have periodic tests to ensure you aren't going too high.
Posts: 131 | From PA | Registered: Aug 2007
| IP: Logged |
posted
"My daughter's vit. D was very low, so they gave her 50,000 IU to take once a week. She got very sick w/a rash all over her thighs."
The 50,000 prescription vitamin D is D2, ergocalciferol, also known as drisdol, which doesn't fit into the Vitamin D receptor as well as D3, the type of D that we make from sun exposure. D2, in some cases, is a toxin that the body can't use. Might explain the rash.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
My vitamin D story.....my D level was very low and endocrinologist put me on D2 50,000 IU's 2x a week. My D flew way up, too high way above normal, but I felt sooooo great. Then of course he took me off of it and the D level crashed along with me. This was all before I knew that I had LD. Had a diagnosis of Fibromyalgia.
After this experience I went down hill very very fast. I think this explains how D acts like a steriod and probably sent the LD into over drive. Now I just take a small amount of D in my multi vitamin each day.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
posted
Hi all, to this frequently discussed topic. This is evidence that our country is...
- still in the dark ages - has a FDA that is sadly behind - relying upon a large population of patients to figure out some complex medical issues...at their expense!
I've been on the Marshall Protocol for 25 months, and have my life back. I am doing better than I expected and just keep getting better.
I almost croaked back in 2006, due to an undiagnosed and virulent strain of mycoplasma pneumonia. Many strains have been refined and tested on humans by our beloved government. if this is news to you, do your homework (e.g., Texas prison system).
I'll be frustrated until the day I leave this planet not knowing if this systemic infection came from a lab -- but my intuition tells me it did. And my symptoms were much like Legionnarie's disease...something very similar in its pathology and history of experimentation.
But I digress! Thank God I found the MP and backed off the D prohormone. Doing so while following the antibiotic protocol made me better. It was not easy, but I am human again. Most importantly, I am glad to be alive. What those mycobacteria did to me was evil. And I mean that!
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic