gwb
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Member # 7273
posted
There is a recent thread posted about why vitamin D is not a good supplement to take. I'm very low in vitamin D and started taking 2000 IU D3 daily about a month ago.
Now that I've been doing some research on this I've become throughly confused. Most say take vitamin D3 if you are low on it, but a good number of professionals, and those on the Marshal protocol, caution against taking it
Since I started taking it I can't really say it's helped me, nor can I say that it's hurt me. I'm confused and would like to hear from others here who have an opinion on this and possibly some evidence to support taking it or not taking it.
Brussels
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Member # 13480
posted
Marshal is not a doctor, nor a pharmacist, nor a chemist. He's an engineer.
According to dr. K, lyme patients on vit D supplementation react much better to treatment (see betterhealthguy.com, the last conference summary Scott did has a part on dr. K) than people who don't supplement.
In pure lyme cases, supplementation helps. In patients with sarcoidosis, avoiding it can help.
I am myself one example. I always supplemented when my levels were low. I'm in full remission from lyme now (8 months, no lyme treatment whatsoever).
I still continue supplementation now, in winter, now not for lyme anymore, but just as preventative for colds. I use energetic tests and it tests good. Sometimes though, it doesn't test, so I don't take.
Many LLMDs prescribe vit D for their patients.
google sarcoidosis. If you haven't got the condition, I would just continue supplementation.
Posts: 6199 | From Brussels | Registered: Oct 2007
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quote:Originally posted by Brussels: Marshal is not a doctor, nor a pharmacist, nor a chemist. He's an engineer.
And that is important? he is smart guy who done a lot of research. To me its more important that having MD in front of your name and only knowing what was spoon fed in med school without any real udnerstanding
Having said that I am not convinced that MP helps with lyme, it might work for sarcoidosis but for different reasons, so I supplement vit d. I had it very low (8 ) and after supplementing with 2k iu for 2 months its in 30s. I cant say there was any significant change but I decided to go with the notion that it is useful
Posts: 856 | From MA | Registered: Jul 2009
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disturbedme
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Member # 12346
posted
I think Vitamin D is very important. I was very, very low when I started my lyme treatment and now I'm in the normal ranges. Still trying to get a little higher than I am now.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
I feel better when I take vitamin D. So I will keep taking it unless someone can prove that I shouldn't.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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posted
If you want to get well...you better take Vitamin D3.
Posts: 136 | From Arizona | Registered: Sep 2008
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
It is your call at this point.
I just had my blood tested for vit d. If it comes back low, I plan on taking vit D.
I have gone over 8 years without taking it....not by choice...just didn't add it to the protocol.
And I am still struggling with lyme and company.
So doubt taking vitamin D is going to make me worse.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
Gary,
Since I'm part of the thread on Vit D to which you're referring, I'd like to respond to your concerns.
1. You advise that you're low on Vit. D. I'm assuming there were test results to back this up. Even so, you might want to re-read the info that TX Lyme Mom gave about proper Vit. D testing, as I can tell you without hesitation, she knows what she's talking about when it comes to the testing issue. If your LLMD advised you to take the D3, then take it. If not, then you need to advise him or her that you're doing so and ask questions. Most likely, your doc will say it's okay and if you have concerns, I'd voice them and continue research on your own.
2. One of the posters above said something on the order of, "If you want to get well, you better take Vit D3." Well, I'm hear to tell you that after years of abx tx and now about 2 years into remission, the addition of Vitamin D was no where to be found in my protocol during tx. In fact, I tried fish oil for the first time ever earlier this year and got the same outcome that you expressed, which is no noticable improvement(s), but no deficits either. Conclusion - I tossed the stuff. I originally tried it to help with hypertension anyway and it didn't even put a dent in it.
3. Since my abx tx was very heavily minocycline, there are problems that might or might not occur during and after long-term tx with this particular tetracycline derivative. It is these possibilities that I'm concerned with. I've never attempted MP, nor have my immediate friends that I went through tx with.
Keep researching and follow your doctors orders, unless you have definite concerns about what's being offered. It's okay to question what you're being told and if your doc reacts badly to your reasonable questioning, then you might want to consider trying another doc.
Please don't believe that your success or failure in treating TBD's is dependent upon your taking D3 because that's just not so.
Best of everything to you and hope you keep researching.
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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posted
My vitamin D levels were tested and I was found to be severely deficient. My LLMD suggested I get a bone density scan, even though my serum calcium levels were normal.
Turns out I have osteopenia. At 28. I have lost an inch and a half in height and I have deformed bones.
I have been sick for at least 10 years, but it's unknown. I was finally diagnosed YESTERDAY with VERY conclusive lyme.
Based on my experience alone, barring all the evidence that shows the benefits of vitamin d, you'd be a fool to ignore low vitamin d levels.
posted
These are just my thoughts about vitamin D but I think that there is a reason our bodies make it naturally. If you are deficient, it can cause many problems including fatigue, pain, etc. In my opinion only, I believe that if you are deficient, something is wrong. My vitamin D was very low too and I plan on supplementing. I was low a few years ago and I find that supplementing helped. You may not notice an improvement right away as it can take a while to bring your levels back up to the normal range. Supplements take a while to start working in the body.
-------------------- The advice I give, should not be considered medical advice. My opinion comes from years of research and experience. Posts: 233 | From Somewhere | Registered: Sep 2009
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Hoosiers51
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posted
I agree with gothbubbles.
As a woman who is at high risk for osteoporosis, I would be an idiot to not take D3.
I can see that sarcoidosis would be an exception...but otherwise, it seems like avoiding D3 could be very bad for you in the future.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Brussels
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posted
Coltman, I just posted that things about Marshall (that he's not a physician) because all people doing Marshall refer to him as 'Dr.' Marshall.
It is different to say that everything he proposes comes from Dr. Marshall, a physician, or that comes from Mr. Marshall, an engineer.
I thought he was a physician initially. And it was a big surprise to discover he was not. That is why I post that info, for the ones who still don't know. It's specially important for the brain fogged people looking for desperate solutions (we were all in that category once, right?).
He can be a smart guy, but he's not a doctor. He's got a PhD in Engineering (so do I).
He uses his Doctor title from Engineering to express his ideas on the medical field. I find that VERY unethical. I would NEVER use my Doctor title to provide any health advise to anyone whatsoever.
That's why I point that out, for the guys that still believe he's a physician like I did. Now I know he's just a smart guy.
There's enough research and publications to prove that vit D has many healing properties and benefits for health. Whether this applies to everyone, I don't know (probably not).
But proposing the no-sunlight regime, no Vit D supplementation for EVERYONE with lyme looks to me DANGEROUS. So, I do think it is important to say that this idea of having to avoid Vit D and sunlight came from a Mr. Someone, who's an engineer, who can be a smart guy, but he's not a doctor. See what I mean?
It doesn't mean I believe everything a physician proposes either. It's just to put dots on the iiis.
And for me, personal opinion, this unethical use of his 'Dr.' title makes me go look into any information he would provide with one foot behind.
Posts: 6199 | From Brussels | Registered: Oct 2007
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quote: There's enough research and publications to prove that vit D has many healing properties and benefits for health. Whether this applies to everyone, I don't know (probably not).
Correction -there are many studies and publication about vit D CORRELATION with health levels. It is unknown at this stage if VitD actually doing anything health wise or its depletion is simply another indication of bad health
quote: But proposing the no-sunlight regime, no Vit D supplementation for EVERYONE with lyme looks to me DANGEROUS. So, I do think it is important to say that this idea of having to avoid Vit D and sunlight came from a Mr. Someone, who's an engineer, who can be a smart guy, but he's not a doctor. See what I mean?
I ultimately decided that there is not enough evidence supporting MP claims about VitD and there is some things which directly contradict his theory .
quote:
And for me, personal opinion, this unethical use of his 'Dr.' title makes me go look into any information he would provide with one foot behind.
I had impression he does not actually flaunts his Ph.D It doesnt matter to me anyways. He was doing biochemical modeling - thats pretty close for me to consider his credentials relevant to the field
Posts: 856 | From MA | Registered: Jul 2009
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Brussels
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posted
Coltman, thanks for your info about the MP. Very interesting.
For me, it does matter though, that he insists to be called Doctor Marshall because he proposes his health protocol for desperate people and has actually harmed a few (according to what I have seen here in LN).
The harmed people are not allowed to post again as they lose their right to post in the MP forum. This has been said here in LN more than once by different sources.
Whatever his field of knowledge, his PhD is not from the medical field. It is unethical, in my opinion, to use it to promote any ideas that have NOT to do with his own original field of research. Specially, because it can harm people.
Whatever one proposes in the medical field, good or bad, has the potential to harm people. So, yes, in my opinion, it is highly unethical do use his engineering title to promote health advise, EVEN if his health advise was WONDERFUL.
Even if he got his PhD in biochemistry, I think it is still highly unethical to use it to promote health advise. You can be a very good biochemist and know little about the human body and human health. I lived with two biochemists for 3 years during my own study, both got their PhD in beer fermentation.
If people get harmed with the MP, his engineering title won't be taken off, right? If he was a medical field professional, using his title to promote something that actually harmed other people, he could lose his medical title, right? That's the 'social' meaning of titles and diplomas.
He's totally 'protected' as the advice he promotes has nothing to do with his own field. As an engineer, if I build a bridge and it falls due to bad calculations, I can lose my title. And will, probably.
As an engineer, if anyone dies from the MP, nothing will ever happen. Doctor Marshall will be still Doctor Marshall. I do see problems in it.
Posts: 6199 | From Brussels | Registered: Oct 2007
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Cass A
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Member # 11134
posted
Personally, from having a bad reaction to Vit D supplements and then finding out my 1,25 D was so high it was in a toxic range while my 25-D was on the low side, I would never promote to someone to take Vit. D without having both tests done.
Since 1,25 D is the biologically active one, to test for 25-D alone is capable of leading one into unnecessary and possibly harmful supplementation.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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posted
Dr. Marshall background is in biomedical engineering. Biomedical engineers seek out new treatments for diseases. His wife has a degree in pharmacology.
Cass my reaction to supplementing with D was crawling up and taking a nap every afternoon. Same thing when we would go to the beach. I would go out in the sun during the morning then have to go take a nap in the afternoon. Then by the time the beach vacation was over I would be wiped out for about a week. This was a family beach trip we use to take for many years and it finally made sense to me what D was doing to me after reading the MP.
Brussels
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Member # 13480
posted
Babesia caused me severe sun sensitivity. I would even throw up if I even saw sun light (even if it didn't touch my skin).
Once my babesia was under control, sun sensitivity never came back again. It happened to me twice, in two different babesial infections, two different years.
Lyme alone never caused my sun sensitivity. It could be different for different people, but in my case, it was babesia that caused me the fatigue if I was under the sun.
Many children's diseases cause also light sensitivity. But not all.
Does it mean that the treatment of choice for them is also avoiding the sun?
Not only my sun sensitivity is 'cured', but my lyme is also in remission for about 9 months. It was not avoiding Vit D that I had lyme in remission, but on the contrary, I always searched sunlight when I could/can.
During babesia, I couldn't, so I didn't go out (because I would throw up or almost faint). But my sun avoidance was short, until I found a successful treatment for babesia, in my case. -----
Very interesting article about Marshall himself here:
For fifteen years, Marshall ran a high-tech company that was the subject of substantial litigation and ultimately went bankrupt.
Some of the allegations in litigation against YARC and Marshall accused Marshall of lying, deception and misleading conduct.
A number of his (former) message board members are concerned that this pattern of behaviour continues with his latest project, the Marshall Protocol, and that he may be putting lives at risk in the process.
Trevor Marshall has widely and publicly claimed that his treatment represents a cure for a wide variety of so-called Th-1/autoimmune diseases.
He claims that it will cure these illnesses despite the fact that there have been no formal studies with objective oversight, and that few, if any, people, other than sarcoidosis patients, have been on the Marshall Protocol for the two to three years that Marshall says it takes to achieve a cure.
Indeed, few if any patients, including Marshall and his board staff, have discontinued medications, so the end result of treatment, even for sarcoidosis patients, remains uncertain.
Additionally, many questions exist regarding the protocol's safety and long term effectiveness, especially in regards to long term use of high dose Benicar and long term deprivation of Vitamin D.
Neither of his web sites provides a list of the potential risks of the protocol.
Indeed, Marshall refuses to allow any open or reasonable debate of the theory or science behind the protocol, and often closes threads that involve too much questioning.
Additionally, many members who have had difficulties with the protocol and sought for more in depth answers, have been banned.
We don't mean to imply that the protocol is ineffective or unsafe, only to point out that there has been insufficient study and time to state these as facts, as Marshall frequently does.
Before making a decision to follow the Marshall Protocol, we recommend that you consider all factors of this experimental protocol, including potential benefits, unknown risks, and treatment alternatives, as well as the background and claims of its creator, and discuss them with your health care provider.
-------- This article above confirms that Trevor Marshall has no single peer reviewed paper accepted concerning any clinical trial or actual benefits of avoiding Vit D or sunlight for human beings. Just read the whole article.
No single peer reviewed paper ever accepted on the Vit D story !! The only one that was accepted just describes the mechanism of how he thinks Vit D would causes harm. No human trial in that paper (the human trial is in his MP site, I suppose).
And as I said before, not only ex Lyme sufferers who went to his site complained (here in Lymenet). In case there's any argument against the protocol in his site, the thread is shut and the member loses right to post.
This article above confirms this malpractice too.
If I had sarcoidosis, I think I would give it a try in case other treatments failed. I know where I'm stepping though.
Posts: 6199 | From Brussels | Registered: Oct 2007
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TX Lyme Mom
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quote:Originally posted by gwb: There is a recent thread posted about why vitamin D is not a good supplement to take. I'm very low in vitamin D and started taking 2000 IU D3 daily about a month ago.
Now that I've been doing some research on this I've become throughly confused. Most say take vitamin D3 if you are low on it, but a good number of professionals, and those on the Marshal protocol, caution against taking it
Since I started taking it I can't really say it's helped me, nor can I say that it's hurt me. I'm confused and would like to hear from others here who have an opinion on this and possibly some evidence to support taking it or not taking it.
Thanks.
Gary
Here is the link to the previous thread on this subject, created by myself, for benefit of those who haven't already seen it since it contains information with valuable hyperlinks pertinent to this new topic.
I would like to respond to the concerns raised by Brussels in the out-dated material (Aug., 2005) from which he quoted, above. Since the time of that 2005 article, there have been a number of recent publications by Trevor Marshall, including this one in the prestigious Annals of the New York Academy of Science a couple of months ago, plus a couple of companion articles authored by his associates in that same journal issue.
In addition to these recent publications, he gave a presentation at an international conference on autoimmunity in Portugal last year. Here is the link to a transcript of that presentation.
As you can see from the above links, the science in support of the Marshall Protocol is advancing. I wish I could tell you who the recovered Lyme patients are -- other than my own daughter, of course -- but I cannot because I, too, was excluded from the MP website 4.5 years ago, making it impossible for me to keep up contact with many of these folks, except indirectly through friends who were still allowed access to view the non-public forums at the MP website.
As anyone might imagine, I have a Love-Hate relationship with TM. We are eternally grateful, nonetheless, to him for our daughter's successful recovery from very late-stage chronic Lyme, although it is extremely difficult and even impossible for me to defend his often unprofessional and sometimes unethical behavior.
Before deciding to take mega-doses of vitamin D, I would like to urge everyone to study the pros and cons of their decision very carefully by taking advantage of the previous topic here at Lymenet (first link above) on this same subject.
Posts: 4563 | From TX | Registered: Sep 2002
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posted
For those who think avoiding D will help them consider my own case.
Due to food sensitivities, I was unable to eat ANY D-containing foods for about 6 years. Also, I was not able to tolerate any supplements, including D. Consequently, in that time my D levels crashed to undetectable levels. I became terribly sun sensitive (could not leave house; had all windows blacked out).
But what happened?
During that time of forced D deprivation did I improve? No. I got worse. Much worse. In my case, the D deprivation did nothing to help my immune system, and more likely hindered it. Again, this was no short term test; it went on for many years. Not only did I get sicker during this time, but my ability to tolerate trx disappeared. I reacted to everything. I was completely disabled. And never thought I'd improve.
As of last measurement, following a summer of gradual sunlight exposure, my D was in the high 40 range. I am now able to take D supplements (and I do). I am now able to tolerate trx, and am improving for the first time in years. It's slow and difficult, with many setbacks, but it is real.
For me a forced trial of D deprivation was not helpful. In fact, I believe it added to and hastened my decline.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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Brussels
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Member # 13480
posted
I also had to be out of the sun during babesia because of total sun intolerance. I fortunately found a rather fast treatment for babesia that helped (I took more than 40 different substances to get it under control).
It was with great pleasure when I could be again under sunlight. The more I'm out in the sun and in nature, the better I feel. I have no doubt about that.
When I was sick with lyme, if I could tolerate the sun, those were my best days even in sickness.
The worst days were my babesia days where I spent in darkness. My moral was very very low.
If I don't take sun often, my EMR sensitivity gets stronger. I can barely tolerate the computer more than 5 minutes. According to dr. K. talks, one needs the sun and a stroll in the forest or park DAILY for the weaker body to be able to cope with such EMR stress.
I also find he is right. At least, by observation.
Besides, the Vit D produced by the sun seems to be like stored in the skin and the body will only use what it needs. It's effects will last 48 hours!!!
I wouldn't suppplement vit D if I could take sun DAILY, and for enough time. I only take it when I can't. Winter time.
I'm still on short trial, but since my frequent Vit D intake, I don't get colds anymore. My daughter still caught though, once, but before I have the impression she was catching more.
I'll try supplementing the whole winter to see.
But as I said, I don't think there's one treatment fit all. For me, I do think Vit D is good, and supplementing is good.
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
nomoremuscles just avoiding d is only one part of the MP. Trying to associate that when there is more involved with the MP is silly. It is not for everyone and one really needs to spend time reading the whole protocol not just avoiding D to understand how it works.
I know it is not for everyone as I have had friends that could not tolerate benicar but then again I stayed in touch with several people from this site that went into recovery on the MP. Everyone has to search out and go down their own path for recovery.
Posts: 805 | From Utopia | Registered: Feb 2006
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I have read extensively on the MP, and at this point I don't think the various components hang together. In fact, I don't think much of it holds true at all.
My point above was that if vitamin D is immuno-suppressive, as the MP states (unequivocally), and that the immune system "kicks on" when the levels of 25-D fall below 20, then my immune system should have kicked on when my reading was zero. This did not happen. I got much sicker during those years. This is a single data point, but one that is not easily explained by MP "science."
Avoiding vitamin D may be a BIG mistake for many, if not most, Lyme patients.
The study I posted a link to above, if I'm reading it correctly, says that 25-D is a VDR (vitamin D receptor) agonist -- that would mean it turns the VDR on, not off as the MP insists. If I am reading this study wrong I would like someone to explain it to me. And if I'm reading it right, I'd like an MP supporter to explain how MP assertions to the contrary square with this study.
Amanda
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Member # 14107
posted
My own experience was I had very low levels of vitamin D when I was at my worst, so it didn't help me feel better when my vit D was low. And when my vitamin D was low, my immune system was very low
It would probably be worth it to have a vitamin D blood panel work up. As mentioned above, vitamin D can be found in several forms in your body. some people have very high levels of one of these forms, and this can cause problems. When you get blood work done for Vitamin D, make sure they test for the whole panel, which is 4 different forms of Vit D.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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posted
nomore as I mentioned the MP is not for everyone just like so many of the people that are struggling with other treatments.
This site over the last few years has gotten into to many I'm right and you are wrong about the mp and there is no need for either one of us to go there.
I do wish you nothing in the best to regain your health.
Posts: 805 | From Utopia | Registered: Feb 2006
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Cass A
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Member # 11134
posted
Dear Friends,
Again, here, the most important parts of this thread are the PERSONAL experiences that people have had.
Since this thread is about Vitamin D, it seems important to know the proper tests to get and to select a lab which freezes the blood sample from their 1,25-D test because it deteriorates very quickly. Both Quest and Clinical Pathology labs do this, but Lab Corp does not.
Also, understanding that Vitamin D can suppress immune reactions so that one "feels better" while the bacteria and viruses are getting free ability to multiply...that's important.
Recognizing that there is currently a concerted, well-financed effort to promote vitamin D as a cure-all so that it will be used as an additive in more and more foods ($$$$$$$$$)....that should be figured into the equation, in my opinion.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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posted
"This site over the last few years has gotten into to many I'm right and you are wrong about the mp and there is no need for either one of us to go there."
jarjar,
I was not looking to get into a you're-right-I'm-wrong kind of thing either. I am genuinely interested in what is going on with vitamin D metabolism, and was pointing out what I think are dangers of intentionally lowering D. I was not fighting with you. The more I read the more I think the MP has it wrong on Vitamin D. I know patients who have done well on the MP, so obviously there is something going on, but I have a feeling it may be very different than what they propose. Certainly, if they were right patients would do much better across the board -- and that's just not happening. I want to know why -- don't you? Also, I wanted to show anyone reading this thread the potential dangers of avoiding D, as this has been a suggested strategy in a few posts.
Cass said,
"Also, understanding that Vitamin D can suppress immune reactions so that one "feels better" while the bacteria and viruses are getting free ability to multiply...that's important."
I know that D can have an anti-inflammatory effect. But is there anything that shows an "immune-suppressive" effect? Vitamin D is responsible for many antimicrobial peptides, and, as I'm sure you know, these substances kill bugs ranging from bacteria to virus to fungus. So how is the vitamin D giving the bugs a "free ability to multiply?" This may be happening, but I'm not aware of anything that shows it.
This article suggests how vitamin d may be both killing bugs and lowering inflammation:
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
NoMoreMuscles, You've provided us with links to a couple of excellent articles. Thanks. These are very enlightening, and I commend you for finding them.
Let me give my response to your second link, the one from EurekaAlert, immediately above, first. However, mine is a rather incomplete response -- just what I noticed off the top of my head, and it is not intended to be any kind of a complete response at all. (Afterall, this is the holiday season and I simply can't afford to spend very much time at the computer for the next couple of weeks, not until after the big family holiday is past.)
"...the ability of vitamin D to regulate anti-bactericidal proteins...is shared only by primates, including humans - but no other known animal species."
This comment jumped off the page at me because we all know how many experiments in medical research are carried out with mice, which do not have the same kind of immune system as humans, or as other primates do.
If I recall correctly, mice don't even have a VDR (vit D receptor) -- although I might be mis-remembering about this little factoid, so please don't let me lead you astray in case I'm wrong here.
Thus, the results of murine experiments should not always be relied upon so heavily as being applicable to human physiology. Afterall, mice and rats live primarily underground in the dark, so they probably don't need any immune response involving vit D or the VDR.
Another consideration is that vit D is a fat-soluble vitamin. Thus, people who have really bad GI problems often do not digest and absorb fats properly from their diet, meaning that these individuals could very likely be deficient in vit D. As I recall from our previous phone conversations, this was the situation in your case -- unless I have you mixed up with somebody else instead.
Do you recall exactly what your baseline D-metabolite levels were before you started the MP? I'm asking because I don't recall them, but this could perhaps be a clue as to why you failed so miserably on the MP -- in spite of very strict and determined compliance on your part with the MP guidelines.
I sincerely wish that there were a better, more certain way to predict in advance who is or is not a good candidate for the MP, in order to prevent the major setbacks and the lost time by those patients who should not have attempted to pursue the MP program in the first place.
Unfortunately, the imperfect moderation and the heavy censorship at the MP website did not allow for accurate reporting of patients' progress. That has been a major limitation in being able to evaluate this aspect of the MP.
Similarly, I recall that Dr. G.B. (Vancouver) who has treated several hundred MP patients was quoted on one or more occasions for saying that patients who had really bad gastrointestinal issues often did very poorly with the MP. I knew and followed a couple of his patients who fitted into this category pretty closely, so that's why his quote has stuck in my mind so long.
We all look at the whole wide world through the prism of our own individual experiences which influence our own beliefs and biases much more heavily than other things, such as "rational thinking" does -- myself included. Thus, I can see the value of avoiding vit D so clearly in my own family that it is often hard for me to remember that there might be other folks who do need supplemental vit D.
That's why I believe so strongly that vit D should be a prescription item only, but not something that is added to our food chain indiscriminately -- at least, not without many more careful studies to justify its addition to foods, except perhaps milk which has had its fat content altered, of course -- but most definitley NOT to whole milk nor to breakfast cereals.
As for your previous link to PMID 19944755 (above), my immediate thought is that I was never convinced that Trevor's hypothesis -- with emphasis on the word "hypothesis" as opposed to proven fact -- about the role of 25-D was ever really accurate anyway. Well, maybe partially so, but not exactly the way that he proposed it or explained it.
To be quite honest, I lost interest in his proposed hypothesis, except as a minor curiosity, and I never bothered to study it very thoroughly because the other FAQs, etc. at the MP website fitted our daughter's personal experience with the MP program so accurately. In my mind, TM's hypothesis itself was a moot point; therefore, I'm not in a good position either to defend it nor to criticize it.
The fact that the MP treatment guidelines were so dead-on accurate in predicting our daughter's responses and so much in accord with her personal experience is what convinced me that there might be something to the rationale behind his hypothesis, and that's about as far as I ever got with it, to be quite honest with you.
Therefore, I'm not in a very good position to argue from that point of view. I do value your views on this subject. This is something that deserves more careful evaluation and clearer understanding.
Nevertheless, my bottom line -- call it my personal bias, if you will -- remains exactly the same: BEWARE of indiscriminate vit D supplementation, unless your lab values are extremely low.
In addition, my corollary to the admonition above is NOT to accept the norms set by the diagnostic labs because those norms are based on sick people. Futhermore, their norms do not match with published research on populations who do not supplement their food chain as indiscriminately as we do here in the US.
Instead, I trust and accept the normal range of lab values for vit D as set by the Merck Manual, 2006 edition -- before MM redacted their published norms, due to all of the recent hype and controversy over vit D. (Quote below)
START OF QOUTE (from Merck Manual, 2006): "In healthy persons, levels are 25 to 40 ng/ml (62.4 to 99.8 nmol/L) for 25(OH)D3 and 20 to 45 pg/ml (48 to 108 pmol/L) for 1,25(OH)2D3. In nutritional rickets and osteomalacia, 25(OH)D3 levels are very low, and 1,25(OH)2D3 is undetectable. A low serum phosphorus (normal: 3.0 to 4.5 mg/dL [0.97 to 1.45 mmol/L]) and a high serum alkaline phosphatase are characteristic. Serum calcium is low or normal, depending on the effectiveness of secondary hyperparathyroidism in restoring serum calcium to normal. Serum PTH is elevated, and urinary calcium is low in all forms of the disease except those associated with acidosis. In hereditary vitamin D-dependent rickets, laboratory findings vary.
Merck Manual of Diagnosis and Therapy, 15 Oct 2006 4
END OF QUOTE
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TX Lyme Mom
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posted
Correction to my previous post (above) about the role of the VDR in mice:
I'm not going to have time to discuss/debate this point any time soon, thanks to time pressures due to the upcoming family holiday season. I'm not well versed in it, nor do I have time to study it adequately myself either, so please do not expect any insightful follow-up discussion on any of this from me. I'll leave it to others who have the interest to sort it out instead.
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djf2005
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posted
Ive been reading a lot of what Dr Mercola says on the subject.
Personally I think supplementing as long as you are tested and it stays in normal range seems reasonable.
I am not an expert but I do think its an important nutrient.
Best
Derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
TX Lyme Mom
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posted
Derek, Don't forget that Dr. Mercola makes a lot of money selling fish oil on his website. It's very hard for any health care practitioner to be truly objective whenever there is a hidden financial benefit in it for them.
I used to trust Mercola and I used to recommend his website to others, too, but that was a long time ago -- before he was seduced by the profit motive. Now, I no longer trust Mercola to be objective about vit D at all.
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djf2005
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posted
Everyone needs to make money and they all start somewhere.
You state it's hard for a health practitioner to remain objective when their is a hidden financial benefit when the very Dr.s we see charge some of the most outrageous fees known to man and push some of the most expensive supplements ever made.
Is Dr Cowden incorrect because he sells a ton of NM products?
Would you have trusted him "before" he backed NM products?
I am only using Cowden as an example.
I could go on and on. Each LLMD and each practitioner for that matter backs a line of medicinal tools and supplements.
Chiropractors- Standard process Many LLMDS- Xymogen (one of the most expensive supplements lines)
Etc, Etc, Etc
I am not saying Mercola is right, I really don't know, only that eventually even the best intentioned person, if successful, will begin to make money off their venture.
Obviously just by watching his videos there is a financial motive, but how can this be avoided at this level?
Even people on LN who now have moved from meager patient to informed, educated ones make money off their knowledge at this point in time.
If I could earn money by telling the world what I know, I certainly would. I need it. (not that Mercola does) LOL
Again, I am not saying his camp is the right one to be in, only one to consider.
I stick by what I said, and I think if you get a decent amount of sunlight (which is completely natural) and your levels are within range than that "should" be sufficient.
TM and all others aside, God made the sun and we need it.
As to supplementing w/ D3 or not, I don't know, I guess it should remain subjective and based on individual experience and response as should all treatment options.
Best
Derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
TX Lyme Mom
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posted
quote:Originally posted by djf2005: Even people on LN who now have moved from meager patient to informed, educated ones make money off their knowledge at this point in time.
Huh? You gotta' be kidding!
Do our moderators know about this?
I thought it was in the LymeNet rules that it is not allowed for this kind of advertising chicanery to take place here at LymeNet.
Or have those rules changed recently?
Furthermore, I regret that many of our LLMDs are getting into this kind of sideline business, and I am not a big fan of any of those who do.
In some states, that's grounds for loss of their license to practice medicine in that state. I suppose that times are changing, so maybe I'm just old-fashioned about it and behind the times in this regard. At least, it used to be illegal, I'm pretty sure.
Furthermore, I don't think it's quite kosher. This practice just doesn't pass the sniff test to me. It would be very hard for me to have confidence in their medical opinions about other matters as well.
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seekhelp
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posted
Docs care about $$$$ period..yes even the loved LLMDs. We're all fooling ourselved if you think the patient is more important than the mighty buck.
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djf2005
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posted
In most cases, I agree w/ you seek.
LymeTxmom-
Not sure why you decided to highlight what you did. No, no one is advertising on LN, and I know you know that. I am talking about people that have moved on from their "learning" experience to then "sharing" it while making money doing so.
Again, we all need money to survive, and again, I would do the same if given the chance.
Would you not?
After suffering and learning all you have, if you could make a living helping others by sharing what you know, you would not?
IMO, that seems to be what happens to these Dr.s as they become bigger and more prolific.
I can sure bet that Dr " " from Hyde Park NY didnt start out w/ 10,000 patients and that Dr " " from Wa didnt graduate from medschool with a large following of lyme patients off the bat.
As we evolve so do they and unfortunately money is a big part of everything that exists.
The point is and remains that any Dr, person, etc, no matter how meager or meaningful they are or appear at the start, eventually become driven by money or the opportunity of (as do most people in the world) and their decisions then become influenced as such.
I also think it's unfortunate that this is taking place but it is what it is.
If you are not a big fan of those LLMDS who take part in the "sideline" business of having their own websites linked to expensive supplements, etc, than who are you a fan of?
It's not like they force us to buy what they recommend, and many are fine w/ the patient locating a cheaper source than what they can offer.
No, I do not believe it is illegial for a Dr in any state to recommend taking any given supplement.
Just because a Dr says to patient X that perhaps substance C would help with problem D does not mean that all sound judgement they have is lost upon their focus on selling the product.
These Dr.s have become so big and have such large practices because they are good at what they do and also, there are not many who will do what they do....
From what I see, from the worst to the best to the biggest to the smallest practices all have this in some form or another.
All we can do is make the best of it, and be thankful for what we have.
Best
Derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
TX Lyme Mom
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posted
Yes, Derek. You and SeekHelp (and some of the others) have succeeded in making my point about vit D for me. Thanks.
Yes, Tthere are indeed plenty of rea$on$ to question these LLMDs' judgement and advice regarding vit D.
And NO, I wouldn't do the same thing myself. I consider myself to be an informed lay-support person, and I have never and will never seek remuneration for the volunteer work that I've done over the period of the last 15+ years.
Posts: 4563 | From TX | Registered: Sep 2002
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quote: I was not looking to get into a you're-right-I'm-wrong kind of thing either. I am genuinely interested in what is going on with vitamin D metabolism, and was pointing out what I think are dangers of intentionally lowering D. I was not fighting with you.
Just a couple of points: Marshals does not say Vitamin D is antagonist of VDR. From what I understood and remember the mechanism is that bacteria produces ligands which have higher affinity for VDR receptors than Vitamin D, and those ligands bind the receptors without activating them -hence excess of 1.25 OH (it has no place to bind) .
2nd point benicar and abx are crucial for MP .Since benicar is the one which knocks out bacterial ligands of VDR receptors. ABX are ones suppressing bacteria
Now a few things - Marshall himself mentioned that in case of lyme borrelia actually alters VDR expression (in layman terms that means it prevents VDR from being produced from DNA) , not binds it with ligands. Hence why I think MP is not that good vs lyme
2nd point he claims all kinds of things happening due to large amount of 1.25 oh floating around. I found at least one case where it could not be happening as he claims (due to order of magnitude difference in supposedly affected chemical and 1.25 oh concentrations )
There is 3d point - I read somewhere benicar lowers testosterone and have all kind of others sides , which I am not looking forward too.
All in all I think he is on target with the part that we are rife with pathogenic bacterias hiding in l-forms and causing all sort of havoc. What I am not convinced is the protocol itself -with sun and vit d avoidance and restrictions on supplements. Plus horrible practices with publishing results - if they doing any serious research they need to run labs and do tests to prove that they protocol does what they think it does.
Posts: 856 | From MA | Registered: Jul 2009
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quote: Recognizing that there is currently a concerted, well-financed effort to promote vitamin D as a cure-all so that it will be used as an additive in more and more foods ($$$$$$$$$)....that should be figured into the equation, in my opinion.
While there is definitely $$$$ involved. It is less that you think. D3 is dirt cheap. The angle corporation get claiming their food is "healthier " because its D fortified. It is pretty big for advertising, but peanuts compared to what pharma gets for drugs
this is kinda same Sh1t with low fat..... Now that I think about it -it causes so much harm to people health, because they trained to buy low fat food without realizing how much harm that low fat stuff is
Posts: 856 | From MA | Registered: Jul 2009
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posted
"Just a couple of points: Marshals does not say Vitamin D is antagonist of VDR. From what I understood and remember the mechanism is that bacteria produces ligands which have higher affinity for VDR receptors than Vitamin D, and those ligands bind the receptors without activating them -hence excess of 1.25 OH (it has no place to bind) ."
Coltman,
Here's what their site says. I put the ** to emphasize the point that 25-D inactivates the VDR. I'm pretty sure they refer to it as an antagonist, but have no idea where I would look to find it.
According to their site:
"However, bacteria create ligands, **which like 25-D, inactivate the VDR** and, in turn, the innate immune response, The body's first line of defense against intracellular and other pathogens. According to the Marshall Pathogenesis the innate immune system becomes disabled as patients develop chronic disease.. This allows the microbes to proliferate."
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TX Lyme Mom
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posted
Here are a few alternative studies that say that fish oil is NOT good for you, plus a YouTube video:
djf2005
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posted
I can find a video to support or contradict any given subject on any given day.
I think again, supplementation w/ fish oil, or any substance, whether it be abx or gasoline (lol), should be a singular experience based upon one's own personal clinical response.
Marketing any product to the masses, especially sick desperate people, is pretty lame, i agree.
Derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Here's what their site says. I put the ** to emphasize the point that 25-D inactivates the VDR. I'm pretty sure they refer to it as an antagonist, but have no idea where I would look to find it.
According to their site:
"However, bacteria create ligands, **which like 25-D, inactivate the VDR** and, in turn, the innate immune response, The body's first line of defense against intracellular and other pathogens. According to the Marshall Pathogenesis the innate immune system becomes disabled as patients develop chronic disease.. This allows the microbes to proliferate."
Here I think the confusion comes from . Notice they mention 1,25- which activate the VDR. The 25 one according to your quote above inactivates . Though they can not show it and I read a few studies that its not in fact true regarding 25 D.
What is true though is that 1,25 is inndeed the activator. But part about Ligands block VDR, -> excesss 1,25 (cause it has no place to bind) is his theory ,and mostly speculation. It could easily be proven(or disproven) with cytokine profile tests - WHICH THEY REFUSE TO DO OR PUBLISH
In my personal case my 1,25 was in low normal range - so no cookie there.
quote:
1,25-D binds and activates the VDR. But in individuals who have 25-D and bacterial proteins blocking the VDR, 1,25-D is forced out of the receptor and into the surrounding environment.
TX Lyme Mom
Frequent Contributor (1K+ posts)
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posted
quote:Originally posted by coltman:
quote:Originally posted by TX Lyme Mom: Here are a few alternative studies that say that fish oil is NOT good for you, plus a YouTube video:
Uhh ohhh how fish oil came into here?!?
Coltman, What I had in mind is the idea that some folks (those who can afford it) take mega-doses of fish oil. Over-dosing on vit D is not good for anyone -- period -- no matter whether it's fish oil or another form of vit D.
I'm not against optional, moderate doses of fish oil, nor am I opposed to basking in the sun for anyone who enjoys it and can tolerate it.
What I am opposed to is having synthetic vit D added to many of my (formerly) favorite breakfast cereals (which I no longer buy, of course) or to organic whole milk, causing me unnecessary inconvenience in obtaining any milk at all. That really annoys me.
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Pinelady
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posted
I thought this was interesting when you consider D and E are known to work together. So I am posting, because I thought it was great someone finally got to try it....
Published Date: 13 December 2009 By Lyndsay Moss A TEAM of Scottish scientists has discovered a way of using the power of a natural vitamin extract to make tumours almost disappear in ten days. Researchers at the University of Strathclyde mobilised an extract from Vitamin E - which has known anti-cancer properties - to attack cancerous cells, using a new delivery system.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
I've been trying my hardest to follow and understand this thread, since I'm set to try Vitamin D3 for the first time every today.
I perked up and my interest was peaked when I read a few posts on vitamin D helping people who are hypersensitive and can't tolerate treatment. Can anyone offer me up more information on that?
I haven't been able to tolerate anything at all. I'm even hypersensitive to most foods. It'd be amazing if vitamin D deficiency was the underlying cause. It'd make sense, since becoming so ill and hypersensitive, I haven't gone outside and haven't consumed any foods with vitamin D.
Also, I was wondering if anyone had any information on Vitamin D and severe multiple chemical sensitivity? It'd be so wonderful if VItamin D could help.
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gwb
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posted
LittleLymie19, before you try vitamin D3 best to get tested to make sure you are low on it. I personally think it's good to take it if you're low on it, but if not then you're best to avoid it as it can be toxic (if I understand this right).
posted
I jsut want to say... firstly I don't post here anymore, but I have on this topic...
I did the Marshall Protocol from November 2007 till May 2008... it was the single most horrific experiece of my entire life and illness.. and I have never been the same since I did it... I have never fully recovered from it.
I NEVER had sun sensitivy UNTIL I did the MP, and then the Sun sensitivity got so bad I would get so incredibly ill. Also, I was getting so so ill, unable to even lift my head from the pillow that when I finally got to an LLMD (and I COULD NOT walk) he pulled me off MP right away.. he could NOT believe the shape I was in.
The board of the MP treated me like crap and as soon as I was expressing how I was NOT doing well and was making their study look bad.. because I was QUESTIONING... I got kicked off the board... HORRIBLE.
Our bodies make this Secosteroid for a REASON...
The whole theory with the MP is if you have a HIGH 1,25D and a LOW 25D you are a good partcipant for the MP... well with the instructions from the MP site I did my D levels... from Quest, frozen etc..
Well my 1,25 D level was 19 and my 25D was 15... and they STILL told me I had TH1 disease. I didn't understand that...
To this day I still have low 1,25D and low 25D and have just recently started supplementing D3 as I still cannot tolerate the sun since doing the MP
I cannot even describe in words the horror that protocol did to me and my family.
Yes it works for some.. and for others.. it is DEVASTATING.
If our bodies are making this D, it is for a reason.. all Dr's and studies aside.. our BODIES create this for a REASON.
Sorry for all my errors, cannot go back to fix.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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quote:and they STILL told me I had TH1 disease. I didn't understand that...
And the thing is they keep talking about that "Th1 disease" and vitamin D. Instead the could have ran a few cytokine profile labs (which are ran in all serious immune studies) and tell for sure how high exactly is TH1/Th2 responce, instead of unfounded assumptions about vitamin D. Its like they have no idea about immune system cytokines at all!
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