Autoimmune patients going into remission with Vit D protocol from brazilian Dr..

[Hip]

One thing I should add: this very high dose vitamin D3 protocol may be similar to the Marshall Protocol (which some people say worked for their ME/CFS).

The drug used in the Marshall Protocol, Benicar, is a potent activator of the vitamin D3 receptor inside the cell. But the thing with the Marshall Protocol is that it takes several years before you start to see benefits from it.

I wonder if the same might be true for the very high dose vitamin D3 protocol. Perhaps you'd need to take it for years in order to get results.

 

[wanderer]

When you do get positive results, I think it is always a good idea to retest the supplement or drug several times. But if you really can't repeat the positive results after a few retests, then you probably never will, unfortunately.

I am not sure if you're familiar how is protocol with vitamin D administered, but this is a very bad advice to apply for this protocol. It is common for MS people to have up and downs for first months, and in a few days of pulsing it you cant see much. It has long term effect, you should do it at least 12 months to see effect .

it is 6 months for me on protocol and neurological symptoms I had for whole life (30 yrs) are going away. It is first time i see a future actually

I've been testing it since April and many times had different effect, it shifts immunity and then the same dose wont have same effect when you retest it. It can have better or worse, but wont be always the same. The effect is seen in long term use.

 

[wanderer]

Exactly, @Hip. I think it takes as much as did in Rituximab study : 20 months for optimum. Anyway, but do you have idea why? I'd expect sooner recovery since we dont have (much) visible damage. :-/

I forgot to mention i have many improvements in PANDAS, and apraxia, and in ME. But mood stuff to as I self-diagnosed as PANS/PANDAS because i had pediatric lyme with mostly psychiatric symptoms

 

[Hip]

I am not sure if you're familiar how is protocol with vitamin D administered, but this is a very bad advice to apply for this protocol. It is common for MS people to have up and downs for first months, and in a few days of pulsing it you cant see much. It has long term effect, you should do it at least 12 months to see effect .

But you said earlier that that you responded to vitamin D3 in just a few weeks:

But cognitive responded extremely, from severe disability to mild. In just few weeks...

I know that this response you got was for your apraxia, rather than ME/CFS symptoms, but nevertheless the response was fast.

 

[wanderer]

But you said earlier that that you responded to vitamin D3 in just a few weeks:



I know that this response you got was for your apraxia, rather than ME/CFS symptoms, but nevertheless the response was fast.

Actually , not that i keep a diary but I started it on 15th May, From 2nd July (6 weeks of protocol) my energy improved 80%, July was best in energy. But my apraxia didnt yet improve then, it came later, maybe late August or even early September. So it was at least 12 weeks of protocol until apraxia improved, later than energy.

My apraxia and CFS are extremely related to each other, so hard to separate them. But i do have CFS too cos i have PEM.


When I first tried crazy big dose (in April i took 250,000 IU in 2 days) I had 50% less energy that week (first time in 20 years enjoyed walks ), but that was initial response. Didn't keep up. I think it was just th1-th2 response. Then when i started protocol in May i had a bit more energy, sometimes didnt hate to walk, didn't despise it as much , and then after 6 weeks i got much more energy with starting sport and not hating to walk. (this could be B cells response, 6 weeks is resposne time in Rituximab study too?)


Also I think apraxia and CFS come from the same pathology in brain because my fatigue is like I am dragging 80kg of potato bag. I wasn't aware before D but I dont FEEL my body like it is ME, i feel it like it is bag on my shoulders. So with improved mind-body connection (from neck area) i get less fatigue because I feel at home in my body, and also less apraxia because body feels mine so my reflexes are better .

I linked this all to Reticular activating system - consciousness, because I feel i am more consciuous of my body movements on vit D.. i wasnt before aware I am unconscious of body. Only now with contrasting two states I see what was missing

 

[Zapped]

@Zapped ,

how many days/weeks are you on protocol for now?...

..the fast response could be also innate immunity shift.

'Had to check my log/chart. I started at 80k, for a week, a month ago. 10/17/16 (up from then ongoing 20mg daily). Today is exactly 3 weeks at 100IU, daily, 50%am, 50%pm. (I'm 200lbs,
so ~100 is likely close enough, sic vs 92 per formula.)

Can you expand on 'immunity shift', as I can conjure up several interpretations?

BTW, at what point do you feel testing, blood et al is necessary? (I recall trying Valcycte a couple of years back. Going to lab every 10 days was a pain:& Can you recommend a
home test lab/send back that's reliable and valid?

Thanks, very helpful,~)

 

[Zapped]

Hard to say really.

But having tried hundreds of supplement and drug protocols over the years...

...if you really can't repeat the positive results after a few retests, then you probably never will, unfortunately.

I know you're in U.K. Are you doing these tests yourself or using a lab? If a lab, are you aware of home test lab/send back that's reliable and valid in U.S?

Of course, this assumes you'll give space for 'CFS' being autoimmune? That being the case
do you think the biochem of D3 makes sense, ie with science, even if it's observational?

Thanks.

 

[wanderer]

'Had to check my log/chart. I started at 80k, for a week, a month ago. 10/17/16 (up from then ongoing 20mg daily). Today is exactly 3 weeks at 100IU, daily, 50%am, 50%pm. (I'm 200lbs,
so ~100 is likely close enough, sic vs 92 per formula.)

You take Magnesium and B2 with it? its part of the protocol because vit D eats up Mg and B2 helps in some step. Also chromiumum
, seleni

Can you expand on 'immunity shift', as I can conjure up several interpretations?

I am not really an expert but I was curious why i was better within 24 hours, when i did mega dose 250,000 iu, and was told by some people who know it is response by innate immunity, so th1/th2, cytokines. While our real problems likely are B cells and antibodies, so cytokines have only partial effect on fatigue, B cells antibodies can't go down that fast so if they make th1/th2 imbalance, after initial positive shift you lose that , or you go up and down,..

I know personally a lot w MS on protocol, so I watch their improvements and response times. It can go up and down, oscilations, those who failed the protocol all had untreated Lyme and big bacterial load. For some fatigue improves right away, for some after 7
months etc, but for great majority it improves a lot.

also this is from observation and my experience: on a wrong dose you can feel much worse. either too high or too low. PTH is the key. I am currently on 100k, and should raise according to PTH, but makes me feel worse when i raise so i didnt. I made a mistake, they say you have to "go through" those periods when you're worse, but i postponed it for now

BTW, at what point do you feel testing, blood et al is necessary? (I recall trying Valcycte a couple of years back. Going to lab every 10 days was a pain:& Can you recommend a
home test lab/send back that's reliable and valid?h
Thanks, very helpful,~)

I am in Croatia so I go to lab and test. You should test PTH at start, and then after 2 months. Also calcium, I think there's a list somewhere of all needed labs.
No need to test sooner than each 2 months while changing dose, because PTH doesnt change so fast .Unless you start to feel bad or something

 

[Hip]

I know you're in U.K. Are you doing these tests yourself or using a lab? If a lab, are you aware of home test lab/send back that's reliable and valid in U.S?

By tests I mean trying a medication and seeing what effects it has on your symptoms.

Of course, this assumes you'll give space for 'CFS' being autoimmune? That being the case
do you think the biochem of D3 makes sense, ie with science, even if it's observational?

Vitamin D3 and royal jelly has been shown to have some benefit for some type II hypersensitivity diseases, so if ME/CFS is type II, then vitamin D3 might have some positive effects. Type II hypersensitivity is a form of autoimmunity autoantibodies attack the cells of the patient.

 

[Zapped]

You take Magnesium and B2 with it? its part of the protocol because vit D eats up Mg and B2 helps in some step. Also chromiumum
, seleni


1.) I am not really an expert but I was curious why i was better within 24 hours, when i did mega dose 250,000 iu, and was told by some people who know it is response by innate immunity, so th1/th2, cytokines. While our real problems likely are B cells and antibodies, so cytokines have only partial effect on fatigue, B cells antibodies can't go down that fast so if they make th1/th2 imbalance, after initial positive shift you lose that , or you go up and down,..

2.) I know personally a lot w MS on protocol, so I watch their improvements and response times. It can go up and down, oscilations, those who failed the protocol all had untreated Lyme and big bacterial load. For some fatigue improves right away, for some after 7
months etc, but for great majority it improves a lot.

3.) also this is from observation and my experience: on a wrong dose you can feel much worse. either too high or too low. PTH is the key. I am currently on 100k, and should raise according to PTH, but makes me feel worse when i raise so i didnt. I made a mistake, they say you have to "go through" those periods when you're worse, but i postponed it for now

Note. I am in Croatia so I go to lab and test. You should test PTH at start, and then after 2 months. Also calcium, I think there's a list somewhere of all needed labs. No need to test sooner than each 2 months while changing dose, because PTH doesnt change so fast .Unless you start to feel bad or something

I appreciate your answers but darn, some reactions seem incongruous, raising the question if we're talking about the same CFS/ME?

1.) I'm not an expert either but I've been following it ~ 30 years, following the science - texts stacked to nearly fill a room. IMO, science has been chasing it's tail and others joined in with nuances - none of which has worked. It's been my hypothesis from day one that 'CFS' (no ME needed) is caused by stress, and there is more supporting research, current and underway. So maybe someone will back into the solution. (In the interim I'll take palliatives, based on science enough so that it's not lethal, hopefully,)

2.). So your observations raises curiosity of how close is MS to CFS in its underpinnings. That the D3 protocol can have such success with MS makes studying the physiology of MS compelling. ('Seems I recall the MS problem is known, i.e. The loss of the myelin sheath but I don't recall if the process causing it is clearly understood, i.e. thus ongoing flares... .

3.) Agree on PTH test and supporting K, and B, but at high D3 doses you can't take enough K! Dr C calls for a biphorous, sodium chloride, but too much of that causes problems. (I found an alternative natural product, a 'guaranteed safe' product, Algecal Plus (availabile at Amazon, ~$55 U.S.). Maybe I'll double my D3 this weekend... then get the lab work. If no significant jolt, I'll likely back off to 'normal' doses.

Note: Interesting, Croatia. I believe I have bought ethical rx's online from that area!

 

[Zapped]

By tests I mean trying a medication and seeing what effects it has on your symptoms.

Vitamin D3 and royal jelly has been shown to have some benefit for some type II hypersensitivity diseases, so if ME/CFS is type II, then vitamin D3 might have some positive effects. Type II hypersensitivity is a form of autoimmunity autoantibodies attack the cells of the patient.[/QUOTE]

D3 Protocol is right, if one knows if 'it' is type II... .

 

[wanderer]

I appreciate your answers but darn, some reactions seem incongruous, raising the question if we're talking about the same CFS/ME?

1.) I'm not an expert either but I've been following it ~ 30 years, following the science - texts stacked to nearly fill a room. IMO, science has been chasing it's tail and others joined in with nuances - none of which has worked. It's been my hypothesis from day one that 'CFS' (no ME needed) is caused by stress, and there is more supporting research, current and underway. So maybe someone will back into the solution. (In the interim I'll take palliatives, based on science enough so that it's not lethal, hopefully,)

2.). So your observations raises curiosity of how close is MS to CFS in its underpinnings. That the D3 protocol can have such success with MS makes studying the physiology of MS compelling. ('Seems I recall the MS problem is known, i.e. The loss of the myelin sheath but I don't recall if the process causing it is clearly understood, i.e. thus ongoing flares... .

3.) Agree on PTH test and supporting K, and B, but at high D3 doses you can't take enough K! Dr C calls for a biphorous, sodium chloride, but too much of that causes problems. (I found an alternative natural product, a 'guaranteed safe' product, Algecal Plus (availabile at Amazon, ~$55 U.S.). Maybe I'll double my D3 this weekend... then get the lab work. If no significant jolt, I'll likely back off to 'normal' doses.

Note: Interesting, Croatia. I believe I have bought ethical rx's online from that area!

ME is very similar to MS. Not sure about CFS. I never met enough people to compare and classify them to CFS and not ME. Maybe it is just a degree of illness?
And not sure I understand your point here. If anything, I have ME.

Uh,.. bought rx in Croatia? That's extremely unlikely! I can not buy an Aspirine here without RX.. they're very strict. No pharmacies like in UK where you can buy for "trip to Africa" a bunch of stuff
But in Serbia or Bosnia you can get anything without Rx, this is where i bought antibiotics. But never heard of online pharmacies.

 

[Horizon]

I believe vitamin D is critical to many diseases and general health, it isnt a vitamin but an actual hormone and fat soluble! I have tried EVERYTHING to get my levels up. I have done high doses daily, including 50,000 IU weekly and sublingual and transdermal but nothing seems to work.

Has anyone gotten injections of vitamin D? I am not sure what else to do to raise my levels?

 

[Hip]

ME is very similar to MS.

There are a lot of similar symptoms, but MS is caused by an attack on the myelin sheaths of nerves (which incidentally vitamin D3 is known to repair). That does not occur in ME/CFS.

 

[Zapped]

ME is very similar to MS. Not sure about CFS. I never met enough people to compare and classify them to CFS and not ME. Maybe it is just a degree of illness?And not sure I understand your point here. If anything, I have ME.

Uh,.. bought rx in Croatia? That's extremely unlikely! I can not buy an Aspirine here without RX.. they're very strict. But in Serbia or Bosnia you can get anything without Rx, this is where i bought antibiotics. But never heard of online pharmacies.

Re: Croatia, I went and checked my 'supplies' from earlier in the year. You're right. While the language is undeciperable to me, they are from a reliable source in Bulgaria. Very good products, generally major Phm's, mf'd in Berlin. [I am USA, but have traveled most of Western Europe but not Eastern, so regrettably I often miss on my geography there. ('like asking you to pinpoint Arkansas, here, w/o looking at a map - I can miss that one!,)

My point? Is that IMO, in these CFS groups I would guestimate that the homogeniety of the same illness being discussed in 70%; the other 30%, randomly unknown, misdiagnosed or searching??? Naturally, it's a topic of controversy; but you can tell after a while. Some are self declared not! (So, their 'remedies' may or not be of use.)

I'm glad to hear you're not MS but sorry you suffer from 'it' ('CFS' - the worse moniker, by any definition). You know when you have it!) I skimmed your above narrations; do you consider yourself 'diagnosed' or self discovered, and do you feel confident about the contribution or lack of co-morbid conditions?

You have initiated an significant query - being, how does MS work (since we PWC's are using Vit D3 protocols? That may very well lead to bettertreatment for CFS, possibly a cure. OTOH, MS is not 'cured.' Puzzling, but worth pursuing... . I'm now a reluctant diy researcher but latest avenues of research are readily available. On the net news travels fast - sometimes accurate,)

BTW, your English is terrific. The only word I know in Croatian is 'Croatia',)
*I today increased D3 to 150IU... . I can feel it 'kicking in'???

 

[Zapped]

There are a lot of similar symptoms, but MS is caused by an attack on the myelin sheaths of nerves (which incidentally vitamin D3 is known to repair). That does not occur in ME/CFS.

I reference some comments made @wanderer re: the workings of MS...
Are you aware of how the myelin erosion occurs, and what drugs are used to treat it, and to what degree of efficacy (perhaps one more than others)?

I'm unclear as to your last comment: what does not occur in CFS? Are you inferring from neurological study results from SPET scans in some PWC's that there are bare nerves as well as inflammation?

Depending on your answer do you think it's a worthy pursuit of study, diy, as is pursuing the abstractions of D3 and instant remissions? I know you opined serendipity there but D3 has a more direct correlation, high incidence even if based on observation; 90%???

 

[Hip]

Are you aware of how the myelin erosion occurs,

I think demyelination is complex and not that well understood.

 

[wanderer]

@Zapped, are you doing protocol now or you quit it ?

 

[wanderer]

I reference some comments made @wanderer re: the workings of MS...
Are you aware of how the myelin erosion occurs, and what drugs are used to treat it, and to what degree of efficacy (perhaps one more than others)?

I'm unclear as to your last comment: what does not occur in CFS? Are you inferring from neurological study results from SPET scans in some PWC's that there are bare nerves as well as inflammation?

Depending on your answer do you think it's a worthy pursuit of study, diy, as is pursuing the abstractions of D3 and instant remissions? I know you opined serendipity there but D3 has a more direct correlation, high incidence even if based on observation; 90%???

i dont really understand some of your post

there are no instant remissions on D3, nobody is claiming that, only VERY FRESHLY diagnosed MS people usually get better within 3-6 months and feel cured, but those sick for longer (if not only official MS and no symptoms) improve slowly and in years of protocol.

I do believe observational info about 90% (even coimbra says 95%) because, it is based on CRAZY BIG SAMPLE. I mean 4000+ people, 15+ facebook groups (some have 15,000 members). It is just too big.

there is one research when EBM is not needed, and that's when effect size of "experimental" group is much bigger than of untreated samples (or treated w conventional medicine) and i think Coimbra protocol will qualify for this.

State of current chronic diseases treatment in conventional medicine is horrible and i blame EBM as gold standard. It has so much flaws and if you cant fund study, its worthless in the eyes of medicine. I dont know how so called smartest people in world fall in EBM trap.

 

[Remy]

State of current chronic diseases treatment in conventional medicine is horrible and i blame EBM as gold standard. It has so much flaws and if you cant fund study, its worthless in the eyes of medicine. I dont know how so called smartest people in world fall in EBM trap.

I couldn't agree more with this.