posted
M LLMD is highly promoting D3. I recall reading D3 could be a no no for lymies. I also have osteopenia and D3 has done wonders for my osteo.
Posts: 738 | From Colorado | Registered: Oct 2004
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posted
Is your 25D low and 1,25D high like most lymies? If your 1,25D (the biologically active kind) is already high, why add more?
We need our immune system working hard to beat this infection. Steroids suppress the immune system. 1,25D is a steroid. Or, to put it like an old commercial:
This is your immune system on vitamin D
:-(
Any questions?
Posts: 727 | From USA | Registered: Mar 2006
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posted
Or, if you just want to treat your symptoms rather than the illness, take lots of D, or better yet take other, even more powerful steroids. Your symptoms will diminish. You will feel better. Your infection will grow worse.
Been there, done that. Other that to prove my immune system had been fighting, steroids like D were a mistake.
Posts: 727 | From USA | Registered: Mar 2006
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posted
Test your level and if it is low, supplement, if not, you need a work-up to determine why you have osteo, (your word) which I assume to mean Osteoporosis. It (vit D) usually makes people feel better.
[ 11. February 2008, 09:33 PM: Message edited by: DoctorLuddite ]
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Only if deficient should you supplement with vitamin D, it is a fat soluable vitamin.
If you aren't deficient, take advantage of the sunny days and sit 15-20 minutes in the sun, that is the best way to supplement D.
posted
I would recommend supplementing - but getting your levels tested first. Many North Americans are deficient in Vit D especially those in northern lattitudes.
I started supplementing last year in February and had a dramatic increase in my health within 3 weeks. I started out at 10,000 IUs of D 3 which I definitely do not recommend for everyone - after 6 weeks I had my levels tested and I was 117 nm/lt - just a few points under optimal. In the summer I try to get my Vit D from the sun, and in winter from supplements. In summer you can get your D3 from the sun but in order to get it in 10-15 minutes you need almost full body exposure between 10:00-2:00pm.
I read up on Vitamin D studies on pubmed.com and found the studies so extremely compelling that I chose to supplement. I also find it very interesting that Vit D is used to treat MS - which I personally consider to be bacterially based.
Generally the only people who I find are against Vitamin D supplementation are people on the Marshall Protocol. I find that many of the tenents on Vitamin D put forward by MP users are unsupported in most peer-reviewed medical/scientific literature I have seen. I read dozens of studies on Vitamin D before deciding to supplement - all I can say is that I am very glad I did.
posted
Vitamin D kills me. Don't do it. What good are healthy bones if you feel like dying? I'd rather have brittle bones and still have my brain.
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tailz
Unregistered
posted
By the way, my vitamin D levels were low (along with vitamin A), and I still oppose vitamin D.
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why is vitamin D supplementation so bad? does it really make lyme worse?
i've been taking in on advice of my doctor (i tested normal/low).
- xtine
Posts: 127 | From Toronto, Ontario Canada | Registered: Nov 2007
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Cobweb
Unregistered
posted
My endocrinologist found that my vitamin D was extremely low. She felt it was due to a "malabsorption syndrome" ,probably Celiac in her opinion.
"Vitamin D From Wikipedia, the free encyclopedia Jump to: navigation, search
Cholecalciferol (D3) Ergocalciferol (D2). Note double bond at top center.Vitamin D is a group of fat-soluble prohormones, the two major forms of which are vitamin D2 (or ergocalciferol) and vitamin D3 (or cholecalciferol).[1] The term vitamin D also refers to metabolites and other analogues of these substances. Vitamin D3 is produced in skin exposed to sunlight, specifically ultraviolet B radiation.
Vitamin D plays an important role in the maintenance of organ systems.[2]
Vitamin D regulates the calcium and phosphorus levels in the blood by promoting their absorption from food in the intestines, and by promoting re-absorption of calcium in the kidneys. It promotes bone formation and mineralization and is essential in the development of an intact and strong skeleton. However, at very high levels it will promote the resorption of bone. It inhibits parathyroid hormone secretion from the parathyroid gland. Vitamin D affects the immune system by promoting immunosuppression, phagocytosis, and anti-tumor activity. Vitamin D deficiency can result from inadequate intake coupled with inadequate sunlight exposure, disorders that limit its absorption, conditions that impair conversion of vitamin D into active metabolites, such as liver or kidney disorders, or, rarely, by a number of hereditary disorders.[2] Deficiency results in impaired bone mineralization, and leads to bone softening diseases, rickets in children and osteomalacia in adults, and possibly contributes to osteoporosis. Research has indicated that vitamin D deficiency is linked to colon cancer; conflicting evidence links vitamin D deficiency to other forms of cancer."
I took a prescribed booster dose for 8 weeks. Now I take it with Calcium. I have been feeling better than I have in a long time.
I fell pretty hard this winter on some black ice. Came down really hard on elbow and hip-big bruises but nothing broken.
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
only the marshall protocol thinks vit d makes lyme worse.
quote:Originally posted by heiwalove: only the marshall protocol thinks vit d makes lyme worse.
Actually, the widely-held medical opinion is that steroids are not a good idea when you are fighting an infection. All forms of vit D either lead to production of steroids or are steroids themselves. Don't trust my word on that... that D is a steriod is widely discussed in medical documents on the web.
Posts: 727 | From USA | Registered: Mar 2006
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quote:Originally posted by heiwalove: only the marshall protocol thinks vit d makes lyme worse.
This statement is a half-truth. The Marshall Protocol is a treatment that targets what is called Th1 inflammation. People suffering from Chronic Lyme Disease usually exhibit symptoms of what is called Th1 dominant inflammation.
Marshall Protocol believes that disregulated vitamin D metabolism is a SYMPTOM of this inflammation, not a CAUSE. They believe that an elevated 1,25-D & low 25-D is one objective measure of Th1 inflammation.
Your body is doing exactly what it "believes" is necessary to fight the infection. Supplementing may interfere with this process while temporarily suppressing symptoms. In other words, if you supplement with vitamin D, you may feel better while the chronic infection actually gets worse.
Posts: 246 | From Grass Valley, CA | Registered: Jun 2007
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Hubby's LLMD is really in favor of Vitamin D supplement. VitD3-5
Posts: 1366 | From Southeast | Registered: Sep 2005
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
you will notice, however, that the only people who are anti-vit d on this board are folks who follow the marshall protocol. i find that to be sort-of an interesting coincidence.
Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I am not on the Marshall Protocol but all that has happened to me, is ON the Marshall Protocol and when I sat in the SUN I became so sick, I wanted to die, I also had my throat swell
from the sun, and my sinus swell from the sun,
then I started to react to light and my throat and lungs swelled from light too.
I took Vitamin D and I was so sick, my throat and lungs swelled to, I tried this a couple years ago.
I dont know how i would be with it now, but I can tell you that I am NOT on the Marshall Protocol and I am not for Vitamin D for myself, i may be ok now, but given my severe reaction, I dont what to take the chance.
ONE size does not fit all with LYME people.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
I am not on the Marshall Protocol, although I am tempted.
I had a bad reaction to Vit D suppliments--my eyes got very, very dry and itchy all the time, so I stopped taking it.
When I had my D levels tested, 1,25D was above the Merck maximum of 45 pgm/mL.
I have reduced my intake of Vit D foods to almost nothing for the last year, and seem to be doing better overall.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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Cobweb
Unregistered
posted
quote:Originally posted by dguy:
quote:Originally posted by heiwalove: only the marshall protocol thinks vit d makes lyme worse.
Actually, the widely-held medical opinion is that steroids are not a good idea when you are fighting an infection. All forms of vit D either lead to production of steroids or are steroids themselves. Don't trust my word on that... that D is a steriod is widely discussed in medical documents on the web.
Should we start screening Professional Atheletes for Vitamin D supplements???? Poor CLemens.
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posted
Vitamin D upregulates gene transcription, and does it in any cell that has a vitamin D receptor.
Whatever the cell, it will do its job better under normal circumstances if there is an adequate supply of sunshine that is feeding cholecalciferol into the system.
Those who do poorly with vitamin D supplements (they are out there AND on this site) have an as yet unknown obstruction at some level in the vitamin D endocrine cycle, and this should be investigated and figured out, as vitamin D is so important to so many functions in the body that it is risky to push the level too low.
Vitamin D upregulates the production of cathelicidin in white blood cells, our bodies' natural antibiotic, so in the face of a suspected chronic infection, it is generally a good idea to raise the level, but it should be naturally occuring vitamin D.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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quote:Originally posted by DoctorLuddite: Vitamin D upregulates gene transcription, and does it in any cell that has a vitamin D receptor.
Whatever the cell, it will do its job better under normal circumstances if there is an adequate supply of sunshine that is feeding cholecalciferol into the system.
Gene regulation is directly upregulated not by cholecalciferol but rather calcitriol. Calcitriol is vitamin 1,25D, which most lymies are already high in.
Most lymies only have 25D measured by blood test, and they are low in that because it is being excessively converted into 1,25D.
quote:Originally posted by DoctorLuddite: Vitamin D upregulates the production of cathelicidin in white blood cells, our bodies' natural antibiotic, so in the face of a suspected chronic infection, it is generally a good idea to raise the level, but it should be naturally occuring vitamin D.
Cathelicidin works by attacking the cell walls of of bacteria. Since Bb exists in a cell-wall deficient form, cathelicidin is powerless to help us get rid of lyme.
But, no one should take my word on any of this. Do the research online, and you'll see it for yourself. When you find "normal" rules for vitamin D supplementation, keep in mind those apply only for people whose vitamin D system has not gone haywire due to lyme.
Posts: 727 | From USA | Registered: Mar 2006
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posted
Calcitriol and calcidiol bind to VDR, but tri has the higher affinity, and a more powerful effect.
In the normal state, it is better to have a high diol and low to mid range triol.
There are folks whose triol is upregulated whether or not their body has ever been exposed to Bb, but if diol is low an attempt to raise it should be tried before anything else is done.
Cell wall deficient doesn't mean cell wall absent.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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quote:Originally posted by DoctorLuddite: Calcitriol and calcidiol bind to VDR, but tri has the higher affinity, and a more powerful effect.
In the normal state, it is better to have a high diol and low to mid range triol. Cell wall deficient doesn't mean cell wall absent.
This is interesting -- can you share some insights & research behind this statement?
For the record, I've been on the Marshall Protocol for 16 months and have made tremendous progress. I know the MP is not for everybody; but I am concerned about how many folks are taking vitamin D for palliative effects.
DoctorLuddite, are you a doctor?
-------------------- 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
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posted
Perhaps your fixation on Bb is blinding you. Bb may have been the nastiest pathogen added to the patient's DNA soup, but it is not directly responsible for chronic vitamin D metabolism dysregulation. If 1,25-D is elevated, why add more?
[ 15. February 2008, 03:02 PM: Message edited by: B R H ]
Posts: 246 | From Grass Valley, CA | Registered: Jun 2007
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quote:Originally posted by DoctorLuddite: What then do you think is responsible for chronic Vit. D dysregulation?
Successive & cumulative chronic infection with various cell-wall-deficient bacteria.
Posts: 246 | From Grass Valley, CA | Registered: Jun 2007
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posted
I don't think the D tests are great, but definitely worth doing if that's what it takes to get your doctor to take a closer look at MP. That's basically the same reason most people go to Igenex - to get a doctor to take them or some treatment more seriously.
I agree that co-infections should be investigated first. I do think MP can deal with those given enough time, but I really think more direct & proven approaches might be safer & faster - especially for something like babesia. In fact, the treatment I had for babesia was the only other treatment that had any lasting objective positive results. I also have no spleen which dramatically increases the risk with babesia.
If you've gone thru multiple high dose antibiotic treatments for any length of time, it's not very likely you have any bacteria left but cell-wall-deficient. I actually agree with the conventional quacks on this issue. This is exactly why they argue that chronic Lyme Disease does not exist & I think they are mostly right. However, they are too focused on Bb & are afraid to stray too from Koch's Postulates of the late 1800s.
I have seen no evidence of ANYONE being harmed by Benicar. The FDA agrees. It's one of the safest drugs in the U.S. forumulary. All the reports of issues I've read here blamed on Benicar could also be explained by herxheimer. I've personally blamed Benicar for all sorts of things that happened to me along the way with MP, but I was proven wrong every single time.
I experienced pretty much all the issues that would fall under dysautonomia but they all resolved with time. It's not easy to stick out the issues that will arise as you clear the pathogens, but they do pass, just as predicted.
Posts: 246 | From Grass Valley, CA | Registered: Jun 2007
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posted
After years of being chronically ill, finding out I had lyme disease, then cancer......I was surprised to find my LLMD FIRST wanting to test my Vit. D level.
Since then I have learned a lot. If you live in the Northeastern part of the US you had better supplement with Vit. D. If you can get it from the sun it is best. Do not use sunscreen!!!! Atleast 20 min./day you need to get sun........when you can get it!!!! If you live in Maryland.......this means you need to supplement from Sept. through April.
Just my opinion. I have learned much and hope to learn more. Sometimes you have to take a step back and realize that if something hurts it may just be working.
Posts: 51 | From Roanoke,Va | Registered: Jan 2003
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posted
"I also have no spleen which dramatically increases the risk with babesia."
Why was your spleen removed and when? It is that type of alteration of the normal circulation that would predispose you to immune system dysfunction. Those issues need to be weighed carefully by physicians treating both acute and chronic health problems, but often are not, thanks to the "cookbook" mentality of modern medicine.
I maintain that the solutions to most health issues lie within the patient and in their relation to the natural world, a relationship that becomes more and more distorted with each passing year.
To answer a previous question, I read as many basic science and clinical study articles on Vit. D as possible. I also reason from the perspective that since even fungi manufacture a vitamin D like molecule from a cholesterol molecule, as do humans and animals, that the nutrient is extremely important in natural process.
Granted, though there will be those who react poorly to it, and a bad reaction to even just a little sunshine is a good indicator that one would be in this camp, the vast majority improve with it, and testing levels followed by low level supplementation with gradual increases is the prudent approach.
While Benicar is a fairly well studied drug of recent years and has a clear mechanism of action, it is not a compound that the human body was meant to be exposed to in nature as vitamin D is, and its use should be very carefully weighed.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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quote:Originally posted by DoctorLuddite: Why was your spleen removed and when?
It was picked out in pieces along with nearly half my pancreas by surgeons about 11 years ago after an accident. Fortunately they were also able to recover nearly 3 liters of my own blood from my abdomen.
Posts: 246 | From Grass Valley, CA | Registered: Jun 2007
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pamoisondelune
Frequent Contributor (1K+ posts)
Member # 11846
posted
Here are my Vit D test results, in case our experts want to interpret them :
(This was after average 75,000 IU's Vit D2 per week for a year. But then i stopped D2, and for the four days before the test, i had 16,000 total IU's of Vit D3):
25-Hydroxy D2.................96 25 Hydroxy D3.................17 25-Hydroxy Total.............113 Vit D 1,25 Dihydroxy..........27 That's the highest Total 25-Hydroxy i've ever had, and last month the D 1,25 was 45.
When should i have my next vit D test?
Posts: 1226 | From USA | Registered: May 2007
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