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

[wanderer]

I did have big brain fog, I read in a dark room, stopped watching TV 5 yrs ago , slowly i was shutting down, processing TV (video) was hard etc... just thankfully some part stayed untacked, which saves my ass.



is apraxia not part of ME? why? All sympotms have names , i only recenlty found out that its called apraxia. I tried to explain it to everybody but nobody suggested right term for it, I thought it's ADHD, etc.. but it was never right, apraxia is good match.
Also had numb face, from 2005, left side, and in 2014 started getting on right side of face, andd then it stopped (right side) whne i started abx in 2014. And left side i thought is permanent, was told so (mild bells' palsy and trigeminal neuropatthy), but on bactrim it got better over night and since on vit D it almost disappeared. i think it was from TMJ infection that pressed on my nerves. :/


thanks, i never heard of CJC, i'll research it. My psyche improved with NDT (Armour thyroid), and now I respond to bactrim, other antibiotics, and did 2 rounds of Chelation was much more calm.

 

[wanderer]

i know a bunch of people using HGH without much success (or any),, they all stopped (all women with mild to moderate CFS).

 

[Hip]

is apraxia not part of ME? why?

Just because you don't find apraxia listed in any of the ME/CFS disease definitions, such as the the CDC Criteria, the Canadian Consensus Criteria (CCC), and the International Consensus Criteria (ICC). These are the definitions that doctors use to diagnose ME/CFS, and that researchers use when they want to identify ME/CFS patients for their studies.

In my case, I have emotional flatness (weak emotional response), and anhedonia (little sense of reward or pleasure when doing normally enjoyable activities). Emotional flatness is considered part of ME/CFS, as you will find it in the CCC definition. But anhedonia is not listed in any definition, so I consider my anhedonia an additional comorbid symptom to ME/CFS (even though my anhedonia was caused by the same virus that triggered my ME/CFS).



When I looked up apraxia, it is defined as a motor disorder caused by damage to the brain, in which someone has difficulty with the motor planning to perform tasks or movements. Ref: here.

 

[wanderer]

Apraxia is characterized by loss of the ability to execute or carry out learned purposeful movements

I had ideomotor type. My motoric funcitions are intact when i do stuff spontenously, like dancing. But planned sttuff like combing hair , i needed a guide "10 steps to comb your hair" and it'd still be difficult to do it. I just avoided doing it. It was easier for me to read 5 hours science material than comb my hair. Fun times!!
but it wast so extreme like picking phone example. I could pick up the phone
and when in big big hurry, like you REALLY need to look normal and dress up, i could comb hair etc, but it wasnt for me without effort, i guess thats' "cue", when you have to perform for a job or so.


Ideomotor apraxia: These patients have deficits in their ability to plan or complete motor actions that rely on semantic memory. They are able to explain how to perform an action, but unable to "imagine" or act out a movement such as "pretend to brush your teeth" or "pucker as though you bit into a sour lemon." The ability to perform an action automatically when cued, however, remains intact. This is known as automatic-voluntary dissociation. For example, they may not be able to pick up a phone when asked to do so, but can perform the action without thinking when the phone rings

 

[Hip]

Wow that's a fascinating condition!

 

[wanderer]

Very misunderstood if you're in 20ies and have it, as Wiki says its common in Parkinsons and Alzheimers patients.

Ideomotor apraxia is typically due to a decrease in blood flow to the dominant hemisphere of the brain and particularly the parietal and premotor areas. It is frequently seen in patients with corticobasal degeneration.[3]


So i guess my bloood flow normalized on vitamin D.

 

[wanderer]

Today I feel again much, much better, at about 75%, woke up rested, active with job and better organizational skills and good enough to go to the gym.

 

[Hip]

I have ordered some 50,000 IU vitamin D3 capsules from here, and will be trying them soon.

 

[wanderer]

Make sure to take them with fatty food . we usually take healthy origins 10,000 IU, it contains olive oil. also B2 is very important on protocol. And Mg . I think usually 300 mg b2.

you shouldnt do it on your own, there's a risk.

You need to check your PTH, calciium and bone density. Dont eat ANY dairy and drink at least 2.5 L water a day.

I just measured my PTH today:

June 7th 4.0 (1.6-6.9 range) - dose 80,000 IU
Sept 13th 3.0 (1.6-6.9 range) - dose 110,000 IU

I increased dose to 130,000 IU. PTH should be 1,0-1,6 ideally, this is where usually remission of AI disease comes.
Of course if DEXA scan and Calcium allows (24hr urine calcium is important)

 

[Hip]

Make sure to take them with fatty food . we usually take healthy origins 10,000 IU, it contains olive oil. also B2 is very important on protocol. And Mg . I think usually 300 mg b2.

OK, that is easy enough to comply with.

you shouldnt do it on your own, there's a risk.

You need to check your PTH, calciium and bone density. Dont eat ANY dairy and drink at least 2.5 L water a day.

Is this necessary if I am only going take high dose vitamin D for 30 days? I just plan to take 50,000 IU daily for one month, and see if there are any positive effects. I may try taking 100,000 IU just for a few of days during that month, but I think I will mostly stick to 50,000 IU.

In the past, I tried taking 20,000 IU of vitamin D daily for 5 days, with no noticeable effect. I also tried 10,000 IU daily for a month or so without seeing any noticeable effects.

 

[wanderer]

I took 10,000-20,000 for 2-3 years and if anything it made me feel a bit worse, not better!

I am not sure if it can be dangerous 30 days. I can not advise on such stuff, a dr wouldnt do it, they'd ask you to measure PTH.
Alo, Coimbra usually starts with higher dose for 3 days and then lowers it, like 100,000 IU 3 days and then 60,000 IU..

but i read in 'vitamin D miracle' book that some dr took 1,000,000 IU for 2 weeks daily, without any change in life style, and had no problems.


In a month you might or you might not feel anything. I talk to Lyme friend who said he had drastic improvement with fatigue after 5th month. I think i was lucky to feel immediately, probably cos i was way worse than him in start.

Good luck whatever you decide!

p.s. some Coimbra dr work over Skype.

 

[wanderer]

@Hip , how much do you weigh in kilos? 50,000 might be low unless you're under 60 kg

 

[Hip]

@Hip , how much do you weigh in kilos? 50,000 might be low unless you're under 60 kg

I am around 85 kg.

Perhaps I should try 100,000 IU for 2 weeks, rather than 50,000 IU for 4 weeks. Perhaps if I am lucky, I will get an immediate response, and so I will know straight away that it is working.

 

[wanderer]

Ys, i think that is better, or 3 days of 100,000 and then the rest 80,000. Depends how you tolerate. I felt 1st response whne i took single dose 250,000. Even now my response is better if 1 dose 200,000 and then 1 day nothing, than each day 100,000... it is still early, probably autoimmune process is far from shut down (or else i wouldnt feel any change anymore when i take it)

 

[wanderer]

http://www.vitamindcouncil.org/blog/dear-dr-cannell-improving-autism/



autism improved (cured?) with high doses ! (10,000 IU is high for10-20kg child). Coimbra lately added autism to a list of illnesses they can treat with high dose vitamin D. But in brackets it said "milder autism cases". I wonder where are 1st testimonies except this one.

 

[Hip]

@wanderer
I tried a single dose of 50,000 IU of vitamin D3 several days ago, just as an initial test, to see what effects it might have.

One thing I noticed was slightly disturbed sleep: throughout the night I kept waking up, but only momentarily, and then instantly falling back to sleep. But this happened numerous times throughout the night.

 

[wanderer]

@Hip i never heard anyone say it affected their sleep, mine didnt change.. if you have negative expectations, expecting side effects, dont do it .

only side effect i had is losing hair, but that stopped. heard people complain of it, in beginning later stops. this is how it was with me too


50,000 IU, esp as a single dose, is rather low. There is a study about using 100,000 IU for CFS, but each 2 months, that is 1500 IU a day. Of course, it had no effect

 

[Zapped]

Recently, I found a 2016 interview in English from a German Journal *(below)with the D3's originator, Dr. Coimbra. He readily shared the protocols that were getting results,along with the warning particulars, mentioned elsewhere in this thread. He
also opined that the protocol should be immensely helpful to most autoimmune
illnesses due to its biochemical mechanics, T -17, etc.

I stepped back up to 80k/daily, taking 60k early in the day and 20k with late meal
for ~2 weeks, noticing some better feel good days. This prompted me to kickthe total D3 up to 100k, daily, divided into an early and late dose, at 50/50. (B1, B2, B-Complex and K2 were in the mix, as also noted Mg + AlgaeCal Plus, a natural supplement in favor of the negative affects of sodium chloride.)

About the second day I began feeling some significant changes, better, similar to the effects of prednisone. I was concentrating much better but 'burned out' after ~6 hours mental work - way up for me). I was also feeling more energy - jumping in the car and going on chores for an hour or so, walking more. Finally, I was ready to sleep earlier, e.g. ~11pm (starting the day ~11am), with much less Rx.

Unfortunately, this lasted only a few days, and I began to lose about 50% of the effects,
which brings me up to this week. I'm crashed, with 8/10 flu-like symptoms and all the usual systemic pain. I'm now more or less sofa bound ~60%'.

I'm curious as to whether this is coincidental or a herxheimer type affect?
I'll continue with the 100k thru this week and reassess: maybe up to 120k or drop
to Dr C's daily dose as recommended???

I might add that during my first D3 round I was (am still) taking some of the supplements from the CFS Prelim Trial, and then added the superload B1 and B2 protocol. While this total cocktail is not likely ideal, neither do I think the ingredients cancelled one another; my thinking was/is synergy... .

Any experienced thoughts? @Hip, You're usually good at raising issues not covered?

*Reference the Brazilian protocols (essential, IMO): http://www.vitamindandms.org/researchers/coimbra/

 

[wanderer]

@Zapped , how many days/weeks are you on protocol for now?

It is not unusual to have big oscilations for first months or even up to 1,5 year. Just observational : it depends on your bacterial load. Recently i talked to woman with MS who got worse in 15 months of protocol, which really is rare, and she tested Lyme via Elispot result was 12 (ref range 2).

You need to measure your PTH, and dose accordingly!


the fast response could be also innate immunity shift..

 

[Hip]

Any experienced thoughts? @Hip, You're usually good at raising issues not covered?

Hard to say really.

But having tried hundreds of supplement and drug protocols over the years, I have often experienced what appears to be some strong positive effects for a day, or a few days, only to have those effects disappear, and never to return. They are like a flash in the pan.

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.