Just wanted to let you know how the Vitamin D saga is going - after supplementing at 10,000 IU for 6 weeks - March to mid-April, I have cut back to 3-4,000 IU daily - most of which I get through cod liver oil, sunshine - with the odd supplement here and there.
I am still working out 6 days a week (I started to work out about 2 weeks after I started supplementing with D - before that I could walk to and from work, but working out was out of the question) - 4 days biking to work and 2 days at the gym on the weekend. The difference is quite astounding - except for tinnitus and a little fatigue I almost feel normal. I still have Lyme disease but it is the best I have felt in 6-7 years (I have had LD for 18 years, but really started falling apart 5 to 6 years ago).
Vitamin D is without a doubt the MOST important supplement I have taken for Lyme disease.
Gwen B
Posts: 227 | From vancouver,bc | Registered: Apr 2005
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Thank you, gwen. Since we live in AZ, my daughter is supplementing 800IU daily and trying to get 5-10 minutes unprotected exposure.
She's not up to vigorous exercise, though. Babesia treatment is rough.
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
I have been following Gwen's example with vitamin D. I call it Marshall Protocol Reversed (MPR) .
At present I take ONLY vit D and minerals. No other stuff or abx since May 29th.
I am a happy camper - at present all symptoms are minimal and there is gradual improvement.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
Vit. D deficiency can certainly contribute to pain caused by Lyme. Chronic pain suffers usually have low end Vit. D levels...it is not completely understood if it is because of the mechanisms causing the pain or if it is contributory. What gwenb is taking is a bit more than what is found in regular supplements and with the added sunshine, it's an OK dose.
It doesn't cure Lyme but it helps with Lyme associated pain. And so does exercise. Posts: 69 | From Wisconsin | Registered: Apr 2007
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posted
Vitamin D does produce natural "antibiotics". Whether it works against borrelia (I believe it would) is a matter of speculation. I would think there is enough of an immune reaction to trigger cathelicidin production. A study would be nice:)
posted
ok, I was put on Vit D supplements for Low Vitamin D, i think 50,000 IU once a week.
I stopped taking it because a doctor told me Lyme can mess up your Vitamin D levels. But not how you think! I have been told that it lowers one kind of vitamin D and really that just means your body is converting vitamin d fast and you actually have enough vitamin d.
the regular test only reads one kind of Vitamin D storage, something like that. My mother then also found the info on the internet.
It is worth looking up. Too much vitamin D can damage your liver.
Many North Americans are deficient in Vitamin D - in some case grossly deficient. Not only does it dramatically protect you against cancer it is also effective in fighting infections - check out pubmed.com.
There are literally hundreds of peer-reviewed studies outlining the effectiveness of Vitamin D for a plethora of ailments. What I personally find very interesting is low Vitamin D levels are correlated with Mulitple Sclerosis. Personally I would not be at all surprised to find that MS was triggered by a bacterial infection. The geographic and symptom overlap between MS and Lyme disease is quite astounding.
Vitamin D did not do it for me alone. As I mentioned earlier I have also radically modified my diet and I am seeing a brilliant herbalist. However the difference upon supplementing with Vitamin D was ASTOUNDING. I have my life back.
Be sure to read more to learn how vitamin D acts like an antibiotic: it helps to destroy the cell walls of bacteria. Unfortunately, this does us Lymies no good because B.Burgorferi is a type of bacteria that has no cell walls.
Posts: 727 | From USA | Registered: Mar 2006
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posted
Since Lyme causes our immune systems to become overactive, it doesn't surprise me that some people feel better taking large doses of vitamin D.
D is a steroid. Steroids damp down the immune system. Less immune activity means less inflammation and less symptoms. So, temporarily we feel better but meanwhile the infection is being left unchecked and slowly growing worse.
Posts: 727 | From USA | Registered: Mar 2006
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Areneli
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Member # 6740
posted
***D is a steroid***
"Marshall science" at work?
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
Check out "The Top 10 Lyme Disease Treatments." The author talks about how too much Vitamin D is not good for people with Lyme.
He acknowledges that it's good for most other health issues, but not Lyme. The books mentions how Vitamin D exposure makes you TEMPORARILY feel good, but a flare-up will occur later.
Because the flare-up occurs later, the person doesn't associate it with Vitamin D exposure. For the author the MP protocol worked.
I don't know, I'm just passing on what I read.
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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Areneli
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Member # 6740
posted
This is just a book written by a guy who read Lymenet. He is not a researcher or a doctor.
Some of the MP followers probably directed his writting on the topic of witamin D.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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I'm feeling great due to the MP. It may not be for everyone but I personally know many that have gone into recovery and moved on with their life. Stop the slammming.
Everyone has to go down a different path for their recovery.
You slam Brian and his book and the MP helped Brian recover, he stated that on this site due to a conversation with Dr. Marshall he was able to help him recover by following the MP.
I've seen post here where some LLMD's are only using the M.P. so lets all be open to different treatments.
[ 14. June 2007, 10:05 PM: Message edited by: jarjar ]
Posts: 805 | From Utopia | Registered: Feb 2006
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posted
There are people from www.roadback.org with autoimmune diseases thought to be triggered by cell wall deficient bacteria who have greatly improved with MP.
Roadback does not espouse the MP. Their protocol is basically low dose Mino with some clindamycin and a few other antibiotics.
I have followed the board for over a year and a half. There is a group who found that they had recovered to a certain extent but with the addition of MP they improved greatly.
For me I find the whole Vitamin D issue very confusing but I think it may be something that does work for some.
I also think it's interesting that for certain autoimmune diseases it's known that the sun (think lupus) will cause a subsequent flare a few weeks later. Is that due to vitamin D production?
I know my husband gets worse with sun exposure so he restricts his sun exposure and we don't buy any products that have extra vitamin D added. A modified MP protocol if you will.
Posts: 984 | From San Diego | Registered: Nov 2006
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Unfortunately, this does us Lymies no good because B.Burgorferi is a type of bacteria that has no cell walls.
That's only one form of the bacteria. Most abx target the cell walls if I'm not mistaken. [/QB][/QUOTE]
I think you're correct that many abx work by attacking cell walls. I believe none of those abx are effective at treating Lyme. That's why so many here take mino, zith and other abx that work via different mechanisms.
Posts: 727 | From USA | Registered: Mar 2006
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
I see things differently. If anybody experienced true improvement on MP it is only because of antibiotics. Since the dose is low only a small group of people will respond. Most will have no benefits at all. Even if you improve, once you stop MP, your symptoms will be back immediately or within a few weeks.
All this scientific theory provided by Marshall is a junk science. The problem is that any MP followers have to get through huge amount of indoctrination by participation in their highly censored website so they receive a brainwash similar to the one that is given by some religious sect.
With time some of MP believers feel obliged to play a role of a missionary. They come here to Lymenet in search for rookies; so the process can start all-over.
Don't waste your time!
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
If our body INTENTIONALLY increases Vitamin D levels, I believe it is for PROTECTIVE reasons.
I believe Mg levels dropped significantly at the outset of lyme for PROTECTIVE reasons. I believe vitamin E levels become depleted because it was used (up) to help us cope with "oxidative stress" i.e., way too many DNA damaging free radicals.
I believe our body IS trying to PRESERVE our lives...using all sorts of "alternative pathways"...such as:
antibodies to acetylcholine receptors (in "autoimmune")- to keep WHATEVER acetylcholine is availiable, available.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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quote:Originally posted by dguy: [QUOTE]Originally posted by brentb: [qb] That's why so many here take mino, zith and other abx that work via different mechanisms.
precisely why many take Vitamin D and get their sunshine.
Posts: 731 | From Humble,TX | Registered: Feb 2005
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
We NEED to "damp down" the immune system!
Bigtime.
We must stop the cell "call to alarm"...NFkB.
Bb enters the cell. Latches onto OUR DNA. The cell nucleus sends out an "alarm"...NFkB.
This triggers (primarily) TNF alpha and Il 1 B (interleukin 1 beta).
Just what Bb wants!
TNF alpha, from what I have read, OPENS SODIUM EPITHELIAL CELL CHANNELS. This is where Bb camps out...in the cells that line our blood vessels.
Bb NEEDS NaCl for its MOTILITY! Say farewell to the Na-K pump. Normally K (potassium) NOT Na (sodium) is supposed to be IN the cells.
We are "tricked" into providing Bb exactly the nutrients it needs to survive (including an ongoing source of glucose via gluconeogenesis).
We must INactivate NFkB. It is not enough to inhibit TNF alpha OR Il 1B.
Lots of nutrients do this (Inactivate NFkB) and combinations of nutrients (glutathione is one)...ONGOING.
Bb is depleting the above (glutathione)...so in steps #2...melatonin.
Keep in mind...Bb can NOT grow in gelatin...ALMOST a complete protein, EXCEPT gelatin is missing the amino acid, tryptophan (-> serotonin -> melatonin).
It appears with melatonin around, Bb can survive.
This isn't easy! The oxidative stress (abundance of way too many free radicals - mostly oxygen molecules that are missing an electron) damages our DNA.
Yet it looks like if the lone oxygen molecule attaches to nitrogen...i.e., nitric oxide...
It appears we need to keep our blood vessels "relaxed" i.e., dilated, keep our circulation 'movin, and keep the blood slightly "thinish" (baby ASA).
To INactivate NFkB...besides nutrients, apparently far infrared saunas and oscillations can work too!
WBV...whole body vibration...oscillations = very fast side to side motion.
From Pubmed:
"To test the hypothesis that fluid flow alters NF-kappaB activation and expression of cell adhesion molecules in osteoblastic cells, we examined the effect of
oscillating fluid flow (OFF)
on tumor necrosis factor (TNF)-alpha-induced NF-kappaB activation in rat osteoblast-like UMR106 cells.
We found that OFF inhibits NF-kappaB-DNA binding activities, especially TNF-alpha -induced p50-p65 heterodimer NF-kappaB activation and TNF-alpha -induced intercellular adhesion molecule-1 mRNA expression.
The inhibitory effects of OFF on both TNF-alpha -induced NF-kappaB activation and intercellular adhesion molecule-1 mRNA expression were shear stress-dependent and also increased with OFF exposure duration, indicating that OFF has potent effects on mechanotransduction pathways.
OFF also inhibited TNF-alpha -induced IkappaBalpha degradation and TNF-alpha -induced IkappaB kinase (IKK) activity in a shear stress-dependent manner.
These results demonstrate that IKK is an initial target molecule for OFF effects on osteoblastic cells.
Thus, OFF inhibits TNF-alpha -induced IKK activation, leading to a decrease in phosphorylation and degradation of inhibitory IkappaBalpha , which in turn results in the decrease of TNF-alpha -induced NF-kappaB activation and potentially the transcription of target genes. J. Biol. Chem. (2001)
PMID: 11096064
My Soloflex takes away my (ongoing) back pain that radiates down my left leg...post op...2 disc surgeries at L4-5 = no cushion left. It is amazing.
If and when NFkB triggers IKK alpha...this INactivates a tumor SUPPRESSOR gene that makes for us a protein called maspin. Without maspin, say hello to cancer.
INactivate NFkB.
Thanks for the vitamin D post!!!
I have old files to review and more to figure out WHY this looks to make such a big difference.
We DO know that vitamin D most definitely protects us from cancer.
There are many "backup" routes the body is taking to save us, to prolong our lives.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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"Activated vitamin D stimulates neurotrophin release (neurotrophins induce the survival of nerve cells), reduces toxic calcium levels in the brain, and inhibits the production of nitrous oxide (nitrous oxide destroys brain cells). Besides reducing inflammatory cytokines, vitamin D does one more thing: it increases concentrations of glutathione--the brain's master antioxidant."
Most of the people who I know that use to post on this board that have gone into recovery with the MP don't post here because of people like you.
Matter of fact people have been taken off the board for ridiculing people that have recovered on the MP on this board.
The Marshall Protocol is not in Brians top 5 list for no reason. My Dr. has over 200 patients on the MP she recovered with it as well as some of her staff.
I do think its good to find a Dr. that has a lot of knowledge of the protocol and tailors it to add whatever else your body needs.
I think most everyone agrees the MP board had and has its issues. That why so many of us don't even bother to post often. We get our needs met from our Dr's and our own research.
I'm feeling like a human being again, not taking naps and being active with my kids.
Its not for everyone but it is for some.
If you want to ridicule me go right ahead but I'm the one smiling becasue I use to feel like crap and I'm feeling VERY good these days.
Posts: 805 | From Utopia | Registered: Feb 2006
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
jarjar,
You feel better because you are on abx. It is common in LD that people feel better while on abx.
I do disagree with MP "superstructure" that doesn't play any other role except make you dependent on Marshall in an unhealthy way.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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You couldn't be any more wrong. I think the polite thing us for is to say we can agree to disagree.
Wishing you the best on your road to recovery,
Posts: 805 | From Utopia | Registered: Feb 2006
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
It is important to see that Lymenet is not a place for a medical cult where they can freely look for new believers.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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Prolactin links too (if you have MS..heads up!) vitamin D has "immune modulating", "antioxidant", "mood modulating", "down regulates TNFa expression in Macrophages by Affecting NFkB"...
The list goes on...
What we all want, I hope, is to find the SAFEST cure for lyme.
I feel it is important to keep a very open mind about natural remedies and other potential treatments "out of the box"
especially if long term high potency abx. are not prescribed by doctors (who fear losing their licenses) to treat chronic lyme.
Gwen...increases glutathione? Hummm...no cysteine and glycine for Bb? That would "hurt" Bb! AND...do you know Vitamin D apparently has "zinc finger receptors" too...
"The anticarcinogenic activity of the active form of vitamin D appears to be correlated with cellular vitamin D receptor (VDR) levels.
Vitamin D receptors belong to the superfamily of steroid-hormone zinc-finger receptors.
VDRs selectively bind 1, 25-dihydroxyvitamin D and retinoic acid X receptor (RXR) to form a heterodimeric complex that interacts with specific DNA sequences known as vitamin D-responsive elements. "
Bb has "zinc fingers"!
[ 18. June 2007, 10:12 AM: Message edited by: Marnie ]
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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posted
just a reminder that a lot of the cod liver oil sold in the US has had the natural vitamin A and D stripped out of it - replaced with lower doses of synthetic D and A.
posted
Vitamin D receptor signaling contributes to susceptibility to infection with Leishmania major. Ehrchen J, Helming L, Varga G, Pasche B, Loser K, Gunzer M, Sunderk�tter C, Sorg C, Roth J, Lengeling A.
*Institute for Experimental Dermatology, University of M�nster, M�nster, Germany;Research Group Infection Genetics, Department of Experimental Mouse Genetics;Junior Research Group Immunodynamics, Helmholtz Centre for Infection Research (HZI), Braunschweig, Germany; andDepartment of Dermatology, University of M�nster, M�nster, Germany.
We have previously reported that 1alpha,25-dihydroxyvitamin D3 (1alpha,25(OH)2D3) can selectively suppress key functions of interferon-gamma (IFN-gamma) activated macrophages. To further explore this mechanism for its relevance in vivo, we investigated an infection model that crucially depends on the function of IFN-gamma activated macrophages, the infection with the intracellular protozoan Leishmania major. 1alpha,25(OH)2D3 treatment of L. major infected macrophages demonstrated a vitamin D receptor (Vdr) dependent inhibition of macrophage killing activity. Further analysis showed that this was a result of decreased production of nitric oxide by 1alpha,25(OH)2D3-treated macrophages due to Vdr-dependent up-regulation of arginase 1 expression, which overrides NO production by Nos2. When analyzing the course of infection in vivo, we found that Vdr-knockout (Vdr-KO) mice were more resistant to L. major infection than their wild-type littermates. This result is in agreement with an inhibitory influence of 1alpha,25(OH)2D3 on the macrophage mediated host defense. Further investigation showed that Vdr-KO mice developed an unaltered T helper cell type 1 (Th1) response on infection as indicated by normal production of IFN-gamma by CD4(+) and CD8(+) T cells. Therefore, we propose that the absence of 1alpha,25(OH)2D3-mediated inhibition of macrophage microbicidal activity in Vdr-KO mice results in increased resistance to Leishmania infection.
PMID: 17551101 [PubMed - as supplied by publisher]
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