Who's up for an experiment? NO balance and fatigue in CFS

[Fejal]

This is really interesting. Stop taking the tumeric and dose the milk thistle 1 standardized capsule every 8 hours.

Tumeric increases the NF-kB pathway that L-form bacteria also increase which stops immune function. This magnifies the effect. Milk thistle is giving you some protection by blocking the pathway but then adding tumeric overcame the effect. That's a positive. You're infested with L-form.

I suspect these changes only show if someone is on milk thistle, otherwise the immune system is too inhibited to respond.

This means I need to change the protocol of this experiment. Instead of taking tumeric alone people should start with milk thistle then add turmeric then remove tumeric again.

 

[sela]

i wish i could follow this . i took a brief look at this marshall protocol and looks way too complicated and money intensive for me. is there a short, cheap version? where can i find out about l form bacteria and how to treat?

 

[Fejal]

>i wish i could follow this . i took a brief look at this marshall protocol and looks way too complicated and money intensive for me. is there a short, cheap version? where can i find out about l form bacteria and how to treat?

Sorry but without the lifestyle changes the bacteria are just too strong to kill. BALI is the only effective shortcut I know in that it allows you to add a few supplements and omega 3 but the MP core of light and vitamin D have to be followed. Bali isn't proven yet but it has a strong scientific rationale and appears to speed up the Marshall Procol by 2x by preventing excessive inflammation and the action of the milk thistle which halves the dosing cycle, I think it's a big advance. BALI is probably going to evolve next to specifically target the species and not be so general. I'm on BALI and it haved my pain and sped up my treatment 2x. However, Trevor Marshall is against it but without any good reason. If you discuss it on his forum they yell at you and kick you out. The Chronic Illness Recovery group is open to it however and all have been "kicked off" of the MP forum by dictator Trevor simply because he doesn't allow anyone to question anything. We all think he's a jerk, though I appreciate that he got the ball rolling and appreciate his discoveries of L-form's connection to disease, and the MP foundation. But the supplement ban is totally unrealistic because it makes patients omega3 deprived, overinflammed (which doubles pain) and prevents treating all of the pathways the bacteria target. No wonder many of his patients are 5 years and still haven't recovered. Well because he isn't a health professional I don't expect him to be fully capable of doing research. He should work more with doctors and take some additional training rather than trying to do it all himself without any more education and experience.

 

[sela]

i looked at this more. common sense tells me that depriving yourself of vitamin d is a bit nuts. no sun at all? i am also apparently b6 deficient , i don't dream unless i take a lot of it. so that blows the protocol right there. it's interesting though. it made me stop taking d3.

 

[Fejal]

There are two kinds of vitamin D, 25D and 1,25D. 25D is from food. 1,25D is from light. Your body makes its own so there really is no requirement for D. It isn't a vitamin but a secosteroid. Initially I had my doubts but I've been off D for over a year and xrays show no bone loss whatsoever and a constant 25D level of 17 (low but detectable). It took months just to drain all the excess D out of my bodyfat.

All the vitamin D research are assumptions that have no weight in regards to L form bacterial infections because the bacteria take the 25D form and use it to elevate 1,25D so it will shut off your immune system and allow them to flourish. Sunlight causes increases 1,25D by a different mechanism. L-form infected people are already overdosed on D so you have to treat it as a special case. All sunlight and vit D foods do is help the bacteria and keep you from recovering.

 

[Frank]

no bone loss after a year measured with x-ray is no real suprise..

 

[SaraM]

I do not know if Marshal is right or wrong, but vitamin D supplements dramatically increase my pain.

 

[Fejal]

SaraM,

Actually their theory is that it works the other way around. D25 suppresses the immune system so it lowers body temperature and suppresses symptoms. To increase pain it would have to be the opposite. I'm not sure of what the diagnostic possibilities are for that (psychosomatic?) but it doesn't sound like L-form bacterial infection.

Are you on milk thistle to start? Perhaps the milk thistle is protecting the immune system enough to bypass the inhibition effect so that the increased bacterial growth can be effectively countered. The would yield inflammatory byproducts (cytokines). It's never been mentioned before but it's an interesting possibility. Anyway, if you had a positive therapeutic probe and don't want the bacteria to increase look into stopping vit D.

 

[dannybex]

SaraM,

Actually their theory is that it works the other way around. D25 suppresses the immune system so it lowers body temperature and suppresses symptoms. To increase pain it would have to be the opposite. I'm not sure of what the diagnostic possibilities are for that (psychosomatic?) but it doesn't sound like L-form bacterial infection.

Are you on milk thistle to start? Perhaps the milk thistle is protecting the immune system enough to bypass the inhibition effect so that the increased bacterial growth can be effectively countered. The would yield inflammatory byproducts (cytokines). It's never been mentioned before but it's an interesting possibility. Anyway, if you had a positive therapeutic probe and don't want the bacteria to increase look into stopping vit D.

Fejal,

With all due respect, you're all over these boards trying to promote a potentially risky and even dangerous protocol that has NO clinical studies to back up it's use in CFS/ME. Your information is basically MIS-information (for the most part), like the constant claim that vitamin D "suppresses" the immune system.

This is simply not true. Vitamin D REGULATES the immune system.

Then you say "All sunlight and vit D foods do is help the bacteria and keep you from recovering."

I'm sorry, but this is nonsense. Where is the proof, where are the clinical studies that back up this irresponsible claim, especially with regards to CFS/ME?

Vitamin D receptor ligands have been shown to increase the activity of natural killer cells something that's essential when dealing with CFS/ME, and enhance the phagocytic activity of macrophages. Active vitamin D hormone also increases the production of cathelicidin, an antimicrobial peptide that is produced in macrophages triggered by bacteria, viruses, and fungi.

You also stated above that "Your body makes its own so there really is no requirement for D" is not only erroneous, it's ludicrous and may in fact be dangerous if someone should take it seriously.

Vitamin d deficiency is linked with several types of cancer as well as heart disease, stroke, hypertension, autoimmune diseases, diabetes, depression, chronic pain, osteoarthritis, osteoporosis, muscle weakness, muscle wasting, birth defects, periodontal disease, and more.

You may sincerely believe you're helping people, or trying to help, but to suggest that patients need to lower their vitamin D levels when they may be protective and beneficial is incredibly irresponsible.

 

[FancyMyBlood]

I always felt like crap when taking curcumin.

 

[SaraM]

Fejal,
I am on milk thistle. I stopped taking vitamin D a few weeks ago. I am going to start it again to see if it affects me again.

 

[Fejal]

Dannybex,

With all due respect, you're all over these boards trying to promote a potentially risky and even dangerous protocol that has NO clinical studies to back up it's use in CFS/ME. Your information is basically MIS-information (for the most part), like the constant claim that vitamin D "suppresses" the immune system.

This is simply not true. Vitamin D REGULATES the immune system.

Regarding your assertion that vitamin D isn’t disregulated that is false. I clearly state that people should have bloodwork proving they have a very high level of 1,25D. Here’s a source that discusses how D inhibits the immune system if imbalanced.

Vitamin D is being touted as an anti-infective agent and it has even been suggested that vitamin D supplementation could be effective against the H1N1 influenza virus. The claims are largely based on the ability of vitamin D to induce antibacterial peptides and evidence that the immune system produces active vitamin D (1,25(OH)(2)D(3)) in situ. While there are many examples of immune production of 1,25(OH)(2)D(3) in vitro, there is little in vivo evidence. In addition, it is not clear what role immune production of 1,25(OH)(2)D(3) has on the course of disease. Vitamin D and 1,25(OH)(2)D(3) inhibit T helper type 1 (Th1)/Th17-mediated immune responses and autoimmune diseases by acting on the innate and acquired immune system to inhibit the function of Th1 and Th17 cells. Th1 and Th17 cells are important in host resistance to many infections including tuberculosis (TB) caused by Mycobacterium tuberculosis. Paradoxically the innate immune system is induced to produce antibacterial peptides that are effective against TB in vitro.
-Bruce D. Vitamin D and host resistance to infection? Putting the cart in front of the horse. Exp Biol Med (Maywood). 2010 Aug;235(8):921-7.

Then you say "All sunlight and vit D foods do is help the bacteria and keep you from recovering."
I'm sorry, but this is nonsense. Where is the proof, where are the clinical studies that back up this irresponsible claim, especially with regards to CFS/ME?

In that context it’s not irresponsible.

Vitamin D receptor ligands have been shown to increase the activity of natural killer cells something that's essential when dealing with CFS/ME, and enhance the phagocytic activity of macrophages. Active vitamin D hormone also increases the production of cathelicidin, an antimicrobial peptide that is produced in macrophages triggered by bacteria, viruses, and fungi.

This is known and a treatment goal. When the immune system has been treated long enough patients note immunopathology independent of medication indicating antimicrobial production capability has been restored. This doesn’t happen until treatment lowers the count however.

You also stated above that "Your body makes its own so there really is no requirement for D" is not only erroneous, it's ludicrous and may in fact be dangerous if someone should take it seriously.

Not for people with L-form infections. I have 17 units of 25D with zero sun. If my body wasn’t making it then I would be at 0.

[

B]Vitamin d deficiency is linked with several types of cancer as well as heart disease, stroke, hypertension, autoimmune diseases, diabetes, depression, chronic pain, osteoarthritis, osteoporosis, muscle weakness, muscle wasting, birth defects, periodontal disease, and more. [/B]

Really then why do I have no bone loss? Correlation with normal individuals isn’t causation and you can't extrapolate data from non L-form infected individuals to infected people. Read the above article and discover the flaws to your argument.

 

[FancyMyBlood]

Not for people with L-form infections. I have 17 units of 25D with zero sun. If my body wasnt making it then I would be at 0.

You always get some sun and Vitamin D is also present in foods like meats/eggs/milk. I'm pretty scared you're giving advice of potentially dangerous and complex therapies when you don't even know basic thinks like this.
17 ng/mL 25(OH)D is classified as mild hypovitaminosis D and is associated with tons of diseases. I think you should be banned for giving this kind of ridiculous advice. A doctor would get sued for malpraction if he did things like you.

 

[Fejal]

Fancymb, you don't know what you are talking about. I have full medical approval and don't have any bone loss or symptoms of hypovitaminosis D that didn't exist prior when I had a high vitamin D intake (fatigue from CFS). My fatigue is not worse.

I'm not telling anyone to do anything without medical supervision, however finding an open minded MD is tough, especially among the specialists who usually pretend they are science based but get rid of you when they run out of algorithms.

It used to be that MDs had some guts to try off label, creative approaches to actually cure diseases. These days they are just symptom treating drug pushers who mostly shill for pharmaceutical companies.

Stop trying to censor treatments you don't understand.

 

[pollycbr125]

I think this thread is dangerous and should be closed .

 

[dannybex]

Dannybex,


Regarding your assertion that vitamin D isnt disregulated that is false. I clearly state that people should have bloodwork proving they have a very high level of 1,25D.

Where did I assert that vitamin D isn't disregulated? Please post my quote to enlighten me.

And where do you "clearly" state that people should have bloodwork proving they have a very high level of 1,25D? Plus, it should be noted that a simple google search will turn up patients who with 'average to low 1,25D' numbers who were still told the MP would be right for them.

In that context its not irresponsible.

That's your opinion, but it's certainly debatable, and certainly a statement that you might like to run by the hundreds of patients who followed the MP in desperation, only to end up much worse.

Really then why do I have no bone loss? Correlation with normal individuals isnt causation and you can't extrapolate data from non L-form infected individuals to infected people.

And vice versa. You're assuming people with low levels of "D" and bone loss are not infected with l-form bacteria. Just because you don't have any bone loss (yet) doesn't mean others will have the same experience. CFS/ME doesn't have one cause or trigger, which is just one of the MP's fatal flaws.

Perhaps it might work for sarcoidosis, but that's a big "perhaps", and in no way should that mean it will work for other illnesses, which are completely different and a lot more complex than sarc.

Just my two cents.

d.

 

[dannybex]

Fancymb, you don't know what you are talking about. I have full medical approval and don't have any bone loss or symptoms of hypovitaminosis D that didn't exist prior when I had a high vitamin D intake (fatigue from CFS). My fatigue is not worse.

I'm not telling anyone to do anything without medical supervision, however finding an open minded MD is tough, especially among the specialists who usually pretend they are science based but get rid of you when they run out of algorithms.

Fejal -- in your post #29 to Sara, you tell her to "look into stopping vitamin D". I see no mention of running that by her doctor.

Finding an open-minded MD is certainly difficult when it comes to this protocol. An MP-MD doctor in my state was sued by 14 patients last year...

It used to be that MDs had some guts to try off label, creative approaches to actually cure diseases. These days they are just symptom treating drug pushers who mostly shill for pharmaceutical companies.

How many patients have been cured on the MP? As others have mentioned, when the MP first came out, patients were told they'd be on the drugs for approximately 2 years. This then grew to 3-4-5 years. The last I heard, even the "doctor" himself is still on the drugs.

???

 

[dannybex]

An informative link...

This link has been posted before, but here it is again, in case it's been missed. It should certainly be read before considering this experimental protocol...

Note that many of the comments are not only from former patients, but from former MP volunteers.

http://heartscanblog.blogspot.com/2008/03/marshall-protocol-and-other-fairy-tales.html

And Fejal, please note this one comment regarding bone density:

"As for the D dysregulation, I realize now that I never had it, nor do I believe most folks do. I was able to get my D level back up just fine mainly from sunbathing this past summer and my bone density levels after less than 6 months off the MP have IMPROVED to nearly normal bone density levels for my age. I had lost all of my gains for the past 5 yrs when I lowered my D levels to single digits as advised by MP staff."

 

[Fejal]

I see so your response to a published peer-reviewed research article from 2010 is a list of anecdotes from a hatchet-job blog in 2008? Please.

The author doesn't even know that "vitamin" D, er, actually secosteroid D, is made by the liver and kidneys.

Vitamin D is a secosteroid with an endocrine mechanism of action which is sequentially synthesized in humans in the skin, liver and kidneys. The active hormone, 1alpha,25-dihydrocholecalciferol [1,25(OH)2D3], is often considered only in terms of its role in controlling calcium and phosphorus homeostasis. However, cumulative evidence points to the presence of vitamin D receptors in many tissues.
(Prez-Lpez FR. Vitamin D: the secosteroid hormone and human reproduction. Gynecol Endocrinol. 2007 Jan;23(1):13-24)

I guess medical school didn't teach that in 1969. Didn't stop Dr. Cannell from heading the Vitamin D counsel. You should email him to remove this misinformation.

 

[dannybex]

I see so your response to a published peer-reviewed research article from 2010 is a list of anecdotes from a hatchet-job blog in 2008? Please.

The author doesn't even know that "vitamin" D, er, actually secosteroid D, is made by the liver and kidneys.

I guess medical school didn't teach that in 1969. Didn't stop Dr. Cannell from heading the Vitamin D counsel. You should email him to remove this misinformation.

Fejal,

Calling legitimate complaints of worsening health and stories of near-death experiences due to the MP a "list of anecdotes" is incredibly insensitive IMO. And just because it isn't mentioned, doesn't mean that the author of the article "doesn't even know" that vitamin d is a secosteroid.

And at least Dr. Cannell WENT to medical school, unlike the creator of the protocol you promote.

I guess we'll have to agree to disagree. I do wish you would've at least answered my individual points, questions and concerns, but...whatever.

The reason I'm so passionate about this topic is because I personally know two people who nearly lost their lives while on the MP, one would've died of kidney failure if it weren't for the insistence of three different doctors that she stop the drugs, even though the MP staff kept trying to tell her her pain was only a 'herx'.

I think you might share those same concerns if the same had happened to a friend of yours.