Cpnhelp.org

Yilmaz, that's not Cheyney who said that, it is Bryan Rosner in his book Top 10 lyme disease treatments

The Cheyney article you linked to is about Th1/Th2 dominance, and doesn't mention vitamin Dⁱ or cell-wall-deficient bacteria. 

Chapter 2 of Rosner's book is called "The Marshall Protocol" and Rosner is simply restating Marshall's ideas.

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Hunter: Don't think - experiment

Good sleuthing Garcia.  I thought it sounded a lot like TM..

Yilmaz, also remember the following study seems to indicate that cathelicidins do  have at least some level of activity against at least Borrelia burgdorferi:

 

Borrelia burgdorferi are susceptible to killing by a variety of human polymorphonuclear leukocyte components

 

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Treatment for Rosaceaⁱ

• CAPⁱ:  01/06-07/07
• High-Dose Vit D3, NACⁱ:  07/07-11/08
• Intermtnt CAP, HDose Vit D3:  11/08-01/09
• HDose Vit D3, Mg, Zn: 01/09-

  Sarah, Garcia and Red, I don't know much about Dr. Cheney, Dr. Bryan Bosner, and Trevor Marshall. So when I see your expressions I understand that Dr. Cheney is a respectfull scientifist but D. Bryan Bosner and Marshall not. If this is the fact please let me know. I also don't know how Dr. Marshall works, does he makes real researchs or what?

When I read that report what I understood was just that.

   Th1 response is so important to fight against intracellüler pathogens like borrelia, cpnⁱ, viruses etc.  Also many of these intracellüler pathogens have a capability of turning off Th1 while turning on Th2(which will not help against intracellüler pathogens) by secreting some immuneⁱ mediators which work as misdirecting signals for immüne system. We know that VitD3 also turns off Th1 and turns on Th2 by increasing secretion of similar immüne mediators. This seems to me almost the same as what Trevor Marshall says; He says that some intracellüler pathogens turns off Th1 to multiply freely and do this by using VitD3.
   If we assume that MS is an autoimmüne disease, then Vitd3 maybe helpfull by directing immüne system toward Th2, so preventing tissue damage caused by cellüler immünity.
   If we assume that MS is an intracellüler infection the things may change. I believe that it may still help in certain doses if we are on a powerfull antibiotic protocol, by preventing exessive collateral damage. But if we are not on a sufficiently powerfull antibiotic protocol it may help pathogen to invade body.(My son, forexample, is taking only vit d3,  I stopped giving it recently and waiting for Dr. Stratton's commend.
   When we talk about Vit D3 we should consider it's other effects on defensins, cathelidicines, matrix metalloproteinases, etc. also.
   I increased my VitD3 intake in a very fast manner and I don't feel well. I don't know whether it's due to die-off or spreading infection. At the and I'm not an expert of VitD3 or infectious disease, so I decide to be cautious untill Dr. Stratton will give me enough confidence.

  YILMAZ.

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KEREM'S TAKECARER;

Suspıcıon of MSⁱ (transient nystagmus during conjugated gaze on february 2008, blepharospazms and some optic complaints on february 2009-no plaque on MRI), Vit D3 started 400 IU and elevated to 2000 ıu ın 40 days.

Marshall has a Ph.D in engineering, not an MD. He got into this stuff because of his own disease (sarcoidosis), not out of scientific interest. He has concocted an elaborate demonology of vitamin Dⁱ, which mainstream vitamin D researchers strongly disagree with. Marshall's demonology is partly based on scientific research (in a warped way), and partly based on his own molecular modeling experiments. Molecular modeling is highly error-prone, even in the best of hands -- and since he's not a specialist, his are not the best of hands (even if one were to ignore his strong bias). My impression is that there are enough knobs to turn on the modeling software that if he exercises his bias sufficiently, he could get basically any results he pleases. In any case, he has not written up the details of his modeling for any scientific journal, or even posted the details on his website.

Sarcoidosis is one of the few diseasesⁱ in which giving vitamin D is known to cause harm. But the harm isn't from suppressing the immuneⁱ system: it's from 1,25-D being created by the immune system in high enough levels that the leakage into the blood messes up calcium levels, sometimes lethally. Marshall used to have a "Skeptics' Corner" (or some similar name) area on his website forums, but then deleted it and banned all the skeptics, after they started winning arguments with him. One of the skeptics' repeated questions was for him to justify this business about vitamin D turning off the immune system's ability to deal with pathogens -- which he was unable to do. Then someone finally found a paper about vitamin D and TB, showing influence of 1,25-D on macrophages infected by TB. Unfortunately for Marshall, the influence was in the other direction from what he was claiming: the vitamin D caused the macrophages to suppress and kill the TB germs. (The paper was either this one or this one; they both report similar results.)

Mark London has written up a detailed rebuttal of Marshall's biochemical theories, which can be found here.

"Marshall used to have a "Skeptics' Corner" (or some similar name) area on his website forums, but then deleted it and banned all the skeptics, after they started winning arguments with him."

Heh. But can anyone explain to me why some people fail to react to any antibacterial stuff at all, like abxⁱ, while they still have some disease? I saw today someone who said he had taken massive amounts of iodine (over 100 mg) and only experienced some changes in mood. It was a Crohn's diseaseⁱ case. Also massive amounts of vitD3 seems to alleviate the symptoms rather than causing die-off for some.

If it is not the VDR (vitamin Dⁱ receptor) that is the culprit here, then what is it? When we talk about chlamydia, then the most important thing that should be considered is the cellular self-destructing mechanisms, as the immuneⁱ system can't see most of the chlamydias anyways. One important pathway is controlled by the NF-kappa B transcription factor, which has got something to do with the caspase family of enzymes which are central to most apoptotic processes. Now, NF-kappa B is upregulated in many inflammatory disease. A particularly powerful NF-kappa B inhibitor is alpha lipoic acid, which Burt Berkson uses along with LDNⁱ to treat autoimmune diseasesⁱ and cancer. But most antioxidantsⁱ do inhibit NF-kappa B to some degree, but not as well as lipoic acid. Some research on ALA and NF-kappa B:

http://www.ncbi.nlm.nih.gov/pubmed/18182252

http://www.e-emm.org/search_read.htm?page=106&year=2007&vol=39

http://www.ncbi.nlm.nih.gov/pubmed/1482376?ordinalpos=66&itool=EntrezSys...

The NF-kappa B has got something to do with angiotensin II as well, and Benicar, because angiotensin II Receptor Blockers Inhibit also NF-kappa B. This is the alternative explanation they offer on the MP site for the usefulness of Benicar. In this case we don't need the VDR and vitamin D hypothesis to explain the usefulness of Benicar, and vitamin D becomes possibly a secondary issue in this whole theory.

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No official diagnosis - but depression + cognitive issues - just using supplementsⁱ.

Why should we believe Mark London? He's not a medical doctor either. Isn't he just a guy on the Internet who makes it his practice to rebut everyone's theories/treatments for CFSⁱ/FM based on his personal experience? 

I can do that.

In fact, London says, "I am not a doctor.  But, given the resources of the internet, it is now possible for anyone to do their own research and find out the real facts for themselves."   

Based on my research and the experience of myself, family members and friends, I would have to say that supplementing with D3 is a hazard to ones health. I, and a number of others I know, had profound ill effects from mega dosing with D3 after a couple of years.

Yilmaz, keep doing your research.

Cherry 

"Based on my research and the experience of myself, family members and friends, I would have to say that supplementing with D3 is a hazard to ones health. I, and a number of others I know, had profound ill effects from mega dosing with D3 after a couple of years."

Heh, dont worry, this is probably just die-off , and you shouldn't use too large doses at least initially, but ramp it up slowly. Make sure you also mop up the porphyrins with some supplementsⁱ, or else you may get stuck with them for a very long time.

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No official diagnosis - but depression + cognitive issues - just using supplementsⁱ.

I would recommend you to write down your own research, Cherry, as Mark London did, so we can compare both. I have not read about his family members, but I read lots of scientific links.

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On Wheldon protocol since 02/2006, added rifa 10/09 for CFSⁱ and many problems 30 years (cpnⁱ and mycoplasma)

Mark London includes links to the studies that back up his statements; believing him is not a matter of worship, but of checking and cross-checking. And no, he's not "just a guy ... who makes it his practice to rebut everyone's theories/treatments for CFSⁱ/FM based on his personal experience". For one thing, he doesn't make much use of his personal experience; most of his comments are based on the scientific literature. For another, he doesn't rebut everyone's theories; he hasn't had anything to say against this website. And lastly, he has positive comments as well as negative ones, as witness his page on magnesium. So, Cherry, you're batting zero for three, in that characterization of him.

It's almost unnecessary to say it, but I will. First off, I supplement vitamin D3 at doses of 8,000 to 10,000iu daily. It has NOT had a detrimental effect on my health, nor has it had a detrimental effect on that of many of my friends, who now do the same. Quite the opposite; it has helped many with many 'unexplained' symptoms, which have largely gone away.

As more and more current studies are showing the benefits of D3, it's on my list of supplementsⁱ I'll be taking on a permanent basis.

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

As to why some people don't react to antibacterials: besides the obvious possibilities (not a bacterial infection, or not susceptible to the antibioticsⁱ which were tried), even if bacteria are being killed, the body may not react much to their corpses. Reactions to bacterial fragments vary widely from person to person. Partly this is due to variation in HLA types (which govern learned immunity): people with different HLA types (and there is much diversity in HLA types) recognize different bacterial fragments. Innate immunity (toll-like receptors) no doubt also has genetic variations. Whatever the precise cause, cases have been noted here where people have experienced great improvement on antibiotics without "herxing" significantly.

The idea of taking alpha lipoic acidⁱ in order to reduce NF-kappa B, which (looking it up) inhibits apoptosisⁱ, is pretty interesting. I should give ALA another try. (It's on Wheldon's recommended list of supplementsⁱ, but I haven't been taking it.)

Since I started supplementing D my mood has improved and the bone-deep "unexplainable" aches I would get in my legs and feet have gone away. These pains were so severe sometimes I'd just curl up on the couch with some Advil. I would not choose to go back to being D deficient.

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GFAⁱ - asthmaⁱ, sinusitis/rhinitis, tendonitis, low back pain, hypothyroid. Started abxⁱ 1/9/08. Azi 250mg/day, doxyⁱ, tiniⁱ, 5,000iu vitD, rhodiola, SAM-e

"Whatever the precise cause, cases have been noted here where people have experienced great improvement on antibiotics without "herxing" significantly."
But what about porphyria then, because if you have a Cpnⁱ infection you should also get porphyria problems, which are unrelated to the immune system reactions to bacterial fragments and endotoxins. The hemeⁱ synthesis is highest in bone marrow/liver, but all cell types do at least some heme synthesis.

I don't think that there any chronic infections around which wouldn't involve Cpn at least to some degree. For example on the MPⁱ site, you see that they have sometimes mycoplasma co-infections (and of course viral co-infections are common), like in sarcoidosis, which produce granulomas, but these granulomas and enlargements of lymph nodes resolve generally early on, on the treatment (perhaps first 6-12 months), while most of the remaining time seems to be spent on clearing up the rest of the Cpn, or some other invisible infection that isn't obvious by any clear symptoms like granulomas that mycoplasma may produce.

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No official diagnosis - but depression + cognitive issues - just using supplementsⁱ.

I don't know what would be of porphyriaⁱ. It's possible that those people (I'm not one of them) didn't recognize the porphyria and put a name to it. In some cases, they may have been taking enough countermeasures, such as activated charcoal, to reduce it to a level where it was unrecognizable. I've found it to be quite difficult to recognize mild porphyria; it only becomes really apparent when it is severe. I can tell for sure when I don't have any porphyria: it sort of feels like everything is right with the world. (Nothing about the actual state of the world is implied here; I know intellectually that not everything is right with it. I'm just talking about feelings.) So my best way of detecting porphyria is to ask myself whether I'm feeling that way; if I'm not, I'm probably at least a bit porphyric. But that way of detecting porphyria is the product of a lot of thought, not something that comes naturally. Most people won't be imitating it -- nor do I suggest they try to; my description isn't detailed enough to be a recipe that anyone can follow, nor would I know how to make it into a recipe. I mention it only to say how hard the symptoms can be to recognize, and put a name to. And when there's no name for something, it often doesn't get mentioned at all.

Carlson 4000 IU D3

 I saw them today at the Vitamin Shoppe.  I've never seen 4000's before.  WoW!

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In pursuit of ABX

Don't Allow What You Know To Get In The Way Of What Might Be

  I was away for a few days, just trying to send my and kerem's blood samples to IGENEX and FRY lab. properly. It was really very hard but I hope I managed it. Thanks for all your commends, I will read all of them tomorrow and post my own thoughts, but I'm so tired now and should go to bed as soon as possible.

  YILMAZ.

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KEREM'S TAKECARER;

Suspıcıon of MSⁱ (transient nystagmus during conjugated gaze on february 2008, blepharospazms and some optic complaints on february 2009-no plaque on MRI), Vit D3 started 400 IU and elevated to 2000 ıu ın 40 days.

Check this on iHerb: 5000 iu vitamin Dⁱ. Cheap!

I take 2 a day.

Raven

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Feeling 95% well-going for 100. Still testing + for Cpnⁱ. CAPⁱ since 8-05 for Cpn/Mycoplasma P.for MSⁱ and/or CFSⁱ. Also EBVⁱ and HHV6. Amoxy,Doxyⁱ, Azith, Tiniⁱ pulses. NACⁱ, Iodoral, T3, BHRT, MethyB12 injections, Nitro patch,

I'm taking this one now.

http://www.iherb.com/Now-Foods-Vitamin-D-3-Highest-Potency-5-000-IU-120-...

I haven't had my D tested since I've been on it but the reviews seemed good so hopefully its effective. I was just not getting my D up on 3,000-4,000/day so it was time to bump it up. It sure is nice to get it all in one pill! We take enough pills already. Sometimes I just can't stand to swallow one more.

 

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GFAⁱ - asthmaⁱ, sinusitis/rhinitis, tendonitis, low back pain, hypothyroid. Started abxⁱ 1/9/08. Azi 250mg/day, doxyⁱ, tiniⁱ, 5,000iu vitD, rhodiola, SAM-e

Sunnivara, I will  be interested to see how much 5,000IU raises your level.  It took going to 10,000IU/day to get me to the upper 70's and that took 6 months!   I am still on 10,000IU/day will test again maybe in July and repeat in October to try and factor in an possible sun exposure and then again return to my usual amount of non-summer sun exposure.  My practitioner is fine with 100being my target level and so am I.  I also want to prevent bone issues. 

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6-07WheldonCAP CFS20+yr

(11-29-07 started Cholestyramine HS PRNⁱ x 7d for porphyrin+endotoxinsⁱ removal)

Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!

  Hıı folks, thanks for everybody for posting their thoughts.

  Fırst off all I should note that scientific data indicating benefits of VİTD3 are much prominent than the opposite but I still continiue to be suspicious untill Dr. Stratton will explain his toughts about VİTD3 on intracellüler infectionsⁱ, as he promised.

  I should also note that many article which seem to be scientific and published on respectfull journals may not be so scientific. Because I saw it very often that the number of included patients are increased greatly (ıf 20 patient in real, they report it as 200 forexample), and the datas are modified to get a statistically significant result. They do this to increase the chance of their research to be published. Otherwise to make a carrier is really very difficult thing. I know things are better in developed countries but I remember very famous doctors(one in USA forexample) who were learned to made his all researches at home by just imagination.

  I understand that nobody here believe Dr. Marshall. I'm aware of Marshall protocol for a while and didn't worry about it. So lets forget Dr. Marshall, and just look at Dr. Cheneys report. He obviously says that some intracellüler bacterias misdirect immüne system towards Th2 sothat they can proliferate freely. That is important. Th1 is very important to fight against intracellüler pathogens. (Dr. Stratton stated to me that also). So if there were a way to sum all effects of VitD3(TH1/Th2 ratio+defensins+cathelidisins+ etc..) we could easily see what would be the net result on intracellüler infections but we cant do that. But there are some signals for it's benefit at least in TBC infections.

   Pgm, you say that; ıf you feel worse on Vit D3, its all die-off, do you have any evidence for it, do you know strong evidence showing die-off effects of VitD3 infact.

   Norman, you know many about almost everything, so I will ask you about some other things as private message.

   MacKintosh, you may do well on Vit D3, it's good, and I advice you to go on taking high doses of it. But your condition doesn't fit everybody. Remember there are people doing well on MP also. First of all, I don't know whether you have any intracellüler infection, like CPNⁱ, borrelia,viruses, etc. Ifnot thats very normal that you get benefit from D3 supplementation because it decreases immüne damage. Lets say that you are CPN infected; then it's possible that CPN in your body may be a very sensitive strain and when antibioticsⁱ killing it vitd3 may helping again by decreasing collateral immüne damage. But there are many people here who are infected by CPN, borrelia, babesia, bartonella, EBVⁱ, HHV6 etc. What happens to them if you turns off Th1, antibiotics doesn't help people  who are infected by viruses, what will happen to them when you supplement with high doses of Vitd3, even what happens to a people who is infected by a resistant strain of CPN?

  So this is not an easily answerable question.

   I also wonder JIM K's thoughts in this issue. As far as I know he is in close contact with Dr. Stratton and he doesnt get huge doses of vit D3. (previously 1000 ıu, 2000 ıu now) These doses are only for daily need and I don't think would elevate blood levels.

  YILMAZ.

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KEREM'S TAKECARER;

Suspıcıon of MSⁱ (transient nystagmus during conjugated gaze on february 2008, blepharospazms and some optic complaints on february 2009-no plaque on MRI), Vit D3 started 400 IU and elevated to 2000 ıu ın 40 days.

While I can't speak to Jim's current dosage, I do know he posted recently about wanting to up his D3 doses, but due to die-off reactions he's had to take this slowly.

Yilmaz, I am not the only person supplementing with Vitamin D3 here. Most of us are. 

If you are going to dismiss the current Vitamin D studies and findings, putting your only faith in Dr. Stratton and believing no one else's work, what is the purpose of asking your question here on the board?

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

 My purpose on asking my question here is ; 1)I want to learn other peoples thoughts and experiences and discuss this issue with them to get the truth. 2)I feel responsible because I was a strong supporter of Vit D3 before.

Besides I don't dismiss current vit D3 studies, but I need more confidence. Medicine is not mathmatic and things may chance in time, remember that they were advecing everybody to runaway from sun just a few years ago.

I also don't think that it would be a good strategy to deplete vit d3 stores of the body, ıt looks unnaturel.

  YILMAZ.

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KEREM'S TAKECARER;

Suspıcıon of MSⁱ (transient nystagmus during conjugated gaze on february 2008, blepharospazms and some optic complaints on february 2009-no plaque on MRI), Vit D3 started 400 IU and elevated to 2000 ıu ın 40 days.

"Pgm, you say that; if you feel worse on Vit D3, its all die-off, do you have any evidence for it, do you know strong evidence showing die-off effects of VitD3 infact."
Read Red's papers on vit-D on this site.
http://www.cpnhelp.org/vitamin_d3_chlamydia_pneu

I got interested again in this NF-kappa B stuff (been looking at it last year already), and vitamin Dⁱ affects it too. A typical effect of stuff that inhibits NF-kappa B seems to be that you either get die-off or then symptom palliation. I don't know why this can happen in two different directions, more research is needed. But anyways, the NF-kappa B pathway is the one that is heavily involved in intracellularⁱ infectionsⁱ, because many intracellularⁱ bacteria activate NF-kappa B, in order to stop the cell to self-destruct. It also affects TNF-alpha, which is a major inflammatory cytokineⁱ, so downregulating it results in less inflammationⁱ. I think a good NF-kappa B inhibiting substance should be a part of the Cpn protocol, as then you may even be able to decrease the amount of abxⁱ used, when you attack the intracellular bacteria from different directions. This highlights the important problem that abxⁱ alone might not be enough to do the job, but you need to attack the bacteria with direct NF-kappa B inhibition also, in addition to protein synthesis inhibition. Personally i believe most in frequent dosing of alpha lipoic acidⁱ to do this, rather than using vit D. This topic is quite complicated, as there are many ways to downregulate NF-kappa B, all methods don't work in the same way. But I suppose NF-kappa B inhibition is the real reason, why they want to use frequent dosing of Benicar on the MP. I see no use for VDR as the primary mechanism in this issue, although it could be involved in the process too.

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No official diagnosis - but depression + cognitive issues - just using supplementsⁱ.