I'm trying to figure out if I know any docs doing UVB radiation, who would test their patients' Vit D levels before and after. It would be really simple. But this is definitely a "not standard of care" therapy and done under the radar. Anyway, the idea is that high amounts of Vitamin D, short term, might serve the same purpose. And I do think tuberculosis sanitoriums worked because they sat in the sun all day, manufacturing a lot of Vitamin D.
I'm going to have my Vit D levels measured soon. I didn't think it was a good idea in the summer when I was getting a lot of sun.
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oxygenbabe
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kelmo
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My daughter herxed like a son-of-a-gun when she started Vit D.
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Dave6002
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posted
Recently found in a large scale clinic trial that Vitamin D can reduce breast cancer by 50%, which is much better than any drugs even developed against cancers.
The result is so good that the government of Canada has decided to use Vitamin D to prevent its people from getting cancers.
Wondering if cancers are caused by bacteria or viruses, so Vitamin D actually kills the pathogens that may cause cancers.
Posts: 1078 | From Fairland | Registered: Apr 2006
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posted
Interesting. My vitamin D level is 9. Way below minimum accepted level. Went to doc today and he called in a prescription Vit D. He said you take ONE pill, ONCE A WEEK....for 6 weeks. I did not pick it up yet, so I do not know the IU's, but I believe he said it was in the "thousands". Yikes.
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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tailz
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Be careful - I read that if your calcium levels are high, you shouldn't take vitamin D - it can be dangerous. Can't find the link though.
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Thanks for that heads up. He did look at my calcium levels also and said they are not out of range high and that it should be fine. But thanks for bringing that up. SOME docs never bother to explain these things.
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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hardynaka
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posted
During my whole lyme story, my levels of vit D were low. Measured by blood tests initially, I got suplementation for a few weeks, got normalized.
I stopped supplementation, other blood test, weak again. I decided to be on low Vit. D supplementation ever since, and got only tested energetically later. It ALWAYS tested good.
I was getting fed up of taking vit D everyday and decided for a stronger dose once every 3 weeks or 1x a month. I'm still doing that, I'm still testing good for Vit. D once a month. After I read these articles, I wonder if these higher doses didn't help me heal too (?).
I don't think I ever had the problem before lyme. Nor with iron, nor with iodine, nor with magnesium.
Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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clairenotes
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I think that the observation regarding TB and sunlight is really excellent. There was a therapy recommended for lyme that involved sunlight also. I always do soooo much better when I spend time outside.
I sometimes wonder if there is an actual connection between lyme and TB?
Anyway, I think my daughter is low in vitamin D but have been confused about whether to supplement or not. I gave her more vitamin D once and she did get worse (reactions). And yet she does improve with sunlight (without reactions).
The arguments for and against vitamin D have always felt a bit overwhelming. I don't know what to do especially now that summer is over, but I do think there is something that needs to be corrected. Perhaps she just needs to work through the reactions.
It is an interesting topic and one that I need to keep looking at for my daughter's sake.
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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Not only is the Vit-D good for reducing tissue inflammation (which the Lymes Cysts create around themselves to hide), the anti-cancer benefits have been well publicized.
I noted as a nice side effect that for the first time in my 40+ years, didn't get the normal winter blahs due to lack of sunlight.l I was on 2000IU initially, raised to 4000IU by doctor instruction.
I asked him about my getting a flu shot just in case (since last year's flu really laid me out - 103 fever for several days), and he said that he wanted me to wait on that, but that having high Vit-D levels ought to help keep me free of the flu. I don't know how that works, but I trust his judgement.
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Truthfinder
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Billclo, the inflammatory aspect is what I remember reading about Vitamin D. According to one school of thought, low-level, long-standing inflammation is at the root of all chronic or serious illnesses. Consistent, adequate amounts of Vitamin D help prevent this inflammatory condition.
And besides just ``Vitamin D'', we have Vitamin D2 and D3 to choose from! I'm still not totally clear on the differences..... I think D3 is supposed to be closer to what we get directly from sunlight, but don't quote me on that. Maybe someone else has info.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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posted
Makes one take another look at the marshall protocol-where you RESTRICT vit. D
Posts: 561 | From eastcoast | Registered: Aug 2006
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oxygenbabe
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I looked back at this research again because of the Marshall Protocol posting. I went on Amy Proal's site to try and understand her Vitamin D posting. However I could not really understand it, because it sounded to me as if Marshall and others had "explained" their theory to her and she was stating it as fact.
I went on and looked at some of their postings, and they addressed all this Vitamin D research in one thread, but debunked it. They are equating it with administering a steroid (ie cortisone) and suggesting that it suppresses the immune system. Thus if one feels better in the sun (which I always have even before lyme) they suggest it's a steroid effect. But of course, it you feel worse in the sun, it's because in their opinion you're increasing your levels of the inflammatory metabolite of Vitamin D that they are so wary of.
So you're kind of stuck either way, because they're generally against Vitamin D, the sun, etc. If Vitamin D were simply a steroid it would not lower the rates of cancer, tuberculosis, etc. On the other hand there was one posting suggesting that intracellular bacteria (all of them) secrete proteins that bind the Vitamin D receptor. Although I haven't seen any proof of that, and I'm not sure that many classes of intracellular bacteria (they don't differentiate between them all which imo is not wise) would evolve this method, this idea might have merit, at least as an idea.
The other idea that was interesting, which was repeated in a post by one person about what a doctor had said, was that the macrophages (immune cells) keep trying to produce more of the inflammatory metabolite of Vitamin D, which is involved in killing pathogens, but because it's blocked at getting to the pathogens, it fruitlessly keeps trying. Now I do know that the way asbestos promotes lung cancer is because the phagoyctes become "frustrated". They keep attacking the inert fiber and they can't "kill" it. All that free radical damage eventually leads to cancer.
Sorry this post is so long. I tried to break it up a bit. My strong intuition has always been that sun is good, get sunlight, don't wear sunscreen (especially chemical sunscreen--wear a floppy hat and a loose fitting thin shirt if you want to shield yourself in summer). It's simply based on how we evolved. We are creatures of nature except in recent times. It's the same intuition that says food in its natural form is probably best.
Anyway, if anybody is interested in reading more about Vitamin D & Cfids (which is often lyme) you can go onto the yahoo group started by Ken Laasen who cured himself of CFIDS with rotating antibiotics, starting low and building up to a herx then when herx went away, raising dose or switching abx, and also Vitamin D. The yahoo group is CFS Protocol. In the files section he explains everything. He kept a diary which is really interesting. His daughter and wife had it too, and they are much improved. He makes a very good case for Vitamin D.
Even so I haven't supplemented it. I do want to test and see how my levels are. I prefer to make it from sunlight but now it's autumn and winter will be coming soon and for us in the northeast there is not enough sun to make enough Vitamin D.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
I believe vit D's abx properties have been known for some time. The mechanism by which it works is to break down the cell wall of bacteria. This also explains why it doesn't help for lyme: Bb is a CWD (cell-wall deficient) bacterium.
Given that vit D is a steroid precursor, in large doses it turns down the immune system just like steroids do. Less immune system activity = less inflammation, less inflammation = feel better. BUT less immune system activity = less infection killing.
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Marnie
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BTW...it is KNOWN Vitamin D3 plays a HUGE roll in clearing TB.
And...
"These results show that 1,25D (the active metabolite of vitamin D) improves the maturation defect in macrophages from AIDS-patients. In patients with a normal serum level of 1,25D complete normalization was seen."
Yup, that link nicely supports what I've been saying. Autoimmune is related to a Th2 response, while Bb triggers a Th1 reponse. When Th1 becomes overactive, our bodies attempt to balance things via vitamin D, in the process consuming D3 (low for most lymies) and creating 1,25D, as described:
"Second example of immunosteroid is dendritic cell (DC)-dependently produced 1agr,25-dihydroxyvitamin D3 [1,25(OH)2D] secosteroid hormone, which has been demonstrated to inhibit autoimmune diseases. We found that 25-hydroxyvitamin D3 1agr-hydroxylase, which metabolize 25-hydroxyvitamin D3 (inactive form) to 1,25(OH)2D was expressed in Th2-cytokine induced bone marrow-derived DC2 but not Th1-cytokine induced DC1. Moreover, 1,25(OH)2D was significantly inhibited DC1-induced type1 immunity."
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oxygenbabe
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Dguy:
"Bb is a CWD (cell-wall deficient) bacterium."
According to whom? BB like syphilis has been found in spirochete (active) form, cyst (wrapped or curled around itself to hide antigens) form, and perhaps the "seed" or spore form seen in some studies in syphilis in the 1950's.
Who found a cell wall deficient form residing inside cells? Which microbiologist with which reputable verifiable institution? If not, then it is conjecture and whatever "cell wall deficient" bacterium they found may not even be BB.
I love how people just state things as if they're fact.
This is a *theory*. Please explain, given this theory, how 21 of 25 CFIDS sufferers, very ill, got better in Montoya's study on an antiviral. What happened to all those cwd bacteria they were harboring?
What about fungi? Some people, like me, a big problem perhaps our main problem is fungal.
Why are you equating Vitamin D with cortisone? This is sloppy. Theoretically you could also equate estrogen with progesterone. They're both hormones that are mainly active in females. They also do very different things. In fact, estrogen is known as the "ur" ie the archetypal steroid hormone which is present in many life forms. It is the precursor in a way to all the other hormones such as progesterone, androgens, cortisone, and perhaps Vitamin D.
You are oversimplifying. You also aren't explaining why there are lower rates of major infections like tuberculosis, mycoplasma, and others, in folks whose Vitamin D is higher.
Sloppy reasoning imo and stating a theory as fact.
Posts: 2276 | From united states | Registered: Jun 2004
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quote:Originally posted by Truthfinder: And besides just ``Vitamin D'', we have Vitamin D2 and D3 to choose from! I'm still not totally clear on the differences..... I think D3 is supposed to be closer to what we get directly from sunlight, but don't quote me on that. Maybe someone else has info.
Tracy
I recall that D3 is about 10x more bio-available than D2. D2 is mostly mineral sourced, whereas D3 is animal-sourced from what I remember. Most vitamin makers use D2, probably because it's cheaper, and people don't know that D3 is a better choice.
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oxygenbabe
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I know Tom Grier's work. He is quoting Lida Mattman. I have a respected *star* science journalist friend/acquaintance who knows lyme backwards and forwards and who feels Mattman is nuts and doesn't know what she's seeing under the microscope. I can't verify that Mattman is that inept but I respect this other person very very highly.
So, sorry, I don't know that cell wall deficient spirochetes are living inside our cells.
And I suspect they form spores or 'seeds' the way syphilis does since they're a similar species of bacteria.
An expert on spirochetes is Lynn Margulis. She doesn't study lyme but she studies all aspects of spirochetes. She has said they can form cysts which basically curl up around themselves, hiding their antigens, thus becoming 'inert' to the immune system.
I don't buy the whole CWD theory as yet.
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kelmo
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Think about this with connection to the TB post above.
In Arizona, there were several TB Sanitariums. My grandfather moved out here to live in one for a while.
I'm assuming, that not only for the dry air, but for the sunshine.
Makes sense, huh?
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GiGi
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clairenotes
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After reading many other threads on vitamin D, this is the one that is finally sinking in and actually making sense. Yes, sunlight is a naturally occurring element. Not sure we were ever supposed to be inside behind computers all day.
So do we take D3 only? Wonder if reactions to it are less? I will also check with our LLND for her opinion, too. Maybe a test would be in order first.
Thanks so much to all who contributed here.
Claire
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treepatrol
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quote:Originally posted by oxygenbabe: Dguy:
"Bb is a CWD (cell-wall deficient) bacterium."
According to whom? BB like syphilis has been found in spirochete (active) form, cyst (wrapped or curled around itself to hide antigens) form, and perhaps the "seed" or spore form seen in some studies in syphilis in the 1950's.
Who found a cell wall deficient form residing inside cells? Which microbiologist with which reputable verifiable institution? y reasoning imo and stating a theory as fact.
Heres a pdf arthritistrust quote As a CWD organism, says Dr. Mattman, Bb is extremely diverse in its appearance, its activity and its vulnerability. Adds Dr.Cowden, ``Because Bb is very pleomorphic, you can't expect any one antibiotic to be effective. Also,bacteria share genetic material with one another, so the offspring of the next bug can have a new genetic sequence that can resist the antibiotic.'' Mattman is brilliant! Cowden,Dr. Whitaker too .
Bacterial persistence and expression of disease -all 4 versions � S Domingue GJ, HB Woody - Clinical Microbiology Reviews, 1997 - Am Soc Microbiol ... round bodies, and (iii) the unpredictable appearance of spirochetes in tissues ... and Sieminski (22) demonstrated the capacity of cell wall-deficient variants to ...
Reverse Transcriptase-PCR Analysis of Bacterial rRNA for Detection and Characterization of Bacterial ... - all 7 versions � EI Tuomanen, KE Kempsell, CJ Cox, M Hurle, A Wong, ... - Infection and Immunity, 2000 - Am Soc Microbiol... Spirochetes can occasionally be recovered by culture of synovial fluid from ... the bacteria appeared to exist in a partially cell wall-deficient (CWD) form and ... google scholar this theres tons of stuff on cwd and spirochetes and yes a lot of it ois mattman and she is quoted by reputable scientists shes not out there.
A lot of these pdfs and citation require joining for a fee.
Infection 1996 May-Jun;24(3):218-26
Formation and cultivation of Borrelia burgdorferi spheroplast-L-form variants.
Mursic VP, Wanner G, Reinhardt S, Wilske B, Busch U, Marget W Max von Pettenkofer-Institut, Ludwig-Maximilians-Universitat Munchen, Germany.
As clinical persistence of Borrelia burgdorferi in patients with active Lyme borreliosis occurs despite obviously adequate antibiotic therapy, in vitro investigations of morphological variants and atypical forms of B. burgdorferi were undertaken. In an attempt to learn more about the variation of B. burgdorferi and the role of atypical forms in Lyme borreliosis, borreliae isolated from antibiotically treated and untreated patients with the clinical diagnosis of definite and probable Lyme borreliosis and from patient specimens contaminated with bacteria were investigated. Furthermore, the degeneration of the isolates during exposure to penicillin G in vitro was analysed. Morphological analysis by darkfield microscopy and scanning electron microscopy revealed diverse alterations. Persisters isolated from a great number of patients (60-80%) after treatment with antibiotics had an atypical form. The morphological alterations in culture with penicillin G developed gradually and increased with duration of incubation. Pleomorphism, the presence of elongated forms and spherical structures, the inability of cells to replicate, the long period of adaptation to growth in MKP-medium and the mycoplasma-like colonies after growth in solid medium (PMR agar) suggest that B. burgdorferi produce spheroplast-L-form variants. With regard to the polyphasic course of Lyme borreliosis, these forms without cell walls can be a possible reason why Borrelia survive in the organism for a long time (probably with all beta-lactam antibiotics) [corrected] and the cell-wall-dependent antibody titers disappear and emerge after reversion. Published erratum appears in Infection 1996 Jul-Aug;24(4):335
PMID: 8811359, UI: 96407306
Beleve me they have pleomorphic cwd ability
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Definition: type of bacterium: a bacterium that lacks cell walls
L-form bacteria - electron dense bodies Domingue worked with a team that included pre and post-doctoral students and fellows along with faculty colleagues and laboratory assistants. Together they discovered that L-form bacteria are able to form tiny dense bodies within parent cells that already lack cell walls. They noted that the forms, which they called electron dense bodies were so small that they could pass through bacterial filters that normally withheld ordinary bacteria with cell walls. Another Researcher
TaDa
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Truthfinder
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posted
Oxygenbabe, I think the cyst form and the L-form (or cell-wall-deficient form) are considered the same thing. And I was under the impression that a cell-wall-deficient form of Bb had been verified with electron microscope.... Now, I don't know what to think.
There are also things called `blebs', which adds to the confusion....
It's hard to believe that Lida Mattman is inept for a number of reasons..... especially since she has been preaching about heart problems associated with Chlamydia pneumoniae long before it became popular to do so.
I have noted recently that the most popular and complete osteoporosis or bone-building supplements all contain Vitamin D3, rather than just Vitamin D like they did in the past.
The link GiGi posted encourages getting our Vitamin D levels tested, which is what I intend to do. I guess I'd better do a search here about Vitamin D testing since I know nothing about it. And the information on this link is confusing. In one place it says:
``A blood test for 25(OH)D, 25-hydroxyvitamin D, is the only way to tell if you have or are taking the correct amount of vitamin D, need to take any D, or if your sun habits are sufficient......the only way to safely use supplemental vitamin D is test, test and retest.''
But then it says this:
``Minimum testing, if using supplements, should be not less than every four months the first two years and every six months the third and fourth years. Excess intake of vitamin D may not show up as elevated 25(OH)D until as long as 2-3 years after starting a dose that was seemingly safe initially.''
So, I'm confused about what good the testing does?!?!
I think there is more to Vitamin D testing than this.... maybe I read that from the Marshall Protocol....
Here are two more excerpts from GiGi's link, which may be of interest.
``If you suffer from any disease associated with an alteration of the vitamin D endocrine system, such as sarcoidosis, do not take any D from any source and avoid sunlight.
``Harm can occur from excess D as well as insufficiency. Taking D when it is not needed is potentially dangerous no matter what form of D you may be taking. Do not self treat without regularly monitoring your levels of 25(OH)D and seek help if you aren't sure how to do this..
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Repeat testing is done for several reasons, to ensure that oral supplements are absorbed, to ensure that too much is not taken, and also to correlate positive or negative effects with increases or decreases in serum levels.
It is the effect of modern civilization on the atmosphere that is the problem, not the Bb or its companions, my opinion.
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sparkle7
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posted
Thanks for all the great info!
The Marshall protocol seemed kind of crazy to me. It didn't seem natural to avoid sunlight & wear dark sunglasses in the house.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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When I first read the MP I was dumbfounded that anyone could think that reducing vitamin D was a good idea...There are some individuals that have difficulty with sudden fluctuations in their D level, up or down, so careful supplementation with competent guidance is the key.
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map1131
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Lymetoo, I was wondering if you seen this post & the part about the heart? Have you ever had Dr C do Vit D3 testing on you to see if you have low levels?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6479 | From Louisville, Ky | Registered: Jan 2002
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Help me narrow down my search. Who said something about the heart?
I asked him about testing the other day and he said most of his patients are low, just go ahead and supplement.
So I'm taking 4,000 units per day. May go to 5.
Thanks for the heads up!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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map1131
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Tutu, it's Truthfinder date Sept 28th. Study on chlamydia pneumoniae. Here is that chlamydia word that keeps me wondering on the heart. We had mentioned our fears on heart in PM.
I read this thread yesterday and it reminded me of you.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6479 | From Louisville, Ky | Registered: Jan 2002
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CaliforniaLyme
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posted
This is just my personal experience and may contribute nothing but I often wonder about it in relation to Lyme and the sun & Vitamin D.
When I was young (oh long lost youth*)! they thought I had lupus and one reason they thought so was a common lupus symptom (besides others like malar rash) which is that going out in the sunlight made me feel SICK. It felt like the witch in Wizard of Oz where she yells "I"m shrinking I'm shrinkinG!" it felt like the sun was shrinking me, like it was making me SICK. I can't explain it but I always wore hats and everything back then and HATED the sun because it made me NAUSEOUS. If I went out in the sun within 5 minutes:
nausea just felt SICK exhausted
Ok, fast forward, that suspected lupus goes away with abx for penumonia and 8 years later I get 3 tick bites and voila my lupus symptoms all come back- BUT important here, in the intervening years between suspected lupus and Lym-e and PRE suspected lupus, while the sun didn't make me feel SICK, I just felt WRONG in the sun and still wore hats and didn't LIKE to be in it. I still avpoided the sun because it did not feel GOOD. Not overt illness form it, but felt WRONG.
OK, so I get tick bites, get LYme & all my lupus symptoms come back plus MORE, and fast forward through IV Rocephin.
Being on IV Rocepihn was the first time I can ever remember ENJOYING the feel of sun on my skin. And SINCE then I ENJOY the feeling of sun on my skin. I LIKE it. It FEELS nice.
Before IV Rocepihn I either felt wrong or outright ILL in the sun- afetr IV Rocephin, it feels nice. I understand why people LIKe the sun, like laying out in it, like it/. I LIKE the feel of sunlight now.
So what it all means, I don't know!!! But based on that I tihnk sunlight is great for you-!!! And Vitamin D, too*)!!!!!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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