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123 Days PF And I Think I know Why (Read 441186 times)
Chuffy
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Re: 123 Days PF And I Think I know Why
Reply #1450 - Jul 23rd, 2013 at 5:28pm
 
Thanks for the info Thiery.
I am currently on tour in the US so will be paying a visit to Walmart and Costco to stock up  Wink

In fact I think a couple of these tabs a day cover the daily Calcium/Magnesium requirement nicely
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LasVegas
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Re: 123 Days PF And I Think I know Why
Reply #1451 - Jul 25th, 2013 at 3:25pm
 
I've read some "load" once a week with 50,000 D3 when starting this regimen.

Anybody with experience loading D3 on a daily basis for a few weeks or so, then dropping down to the 10,000 daily, just to hopefully ensure fast effect?

As a precaution of avoiding my anticipated Fall cycle, i've been loading on 20,000 D3 daily for the past couple weeks, along with other recommended co-factors.  Of course checking test levels for progress I realize is ideal.

Thoughts?

-Gregg in Las Vegas
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Re: 123 Days PF And I Think I know Why
Reply #1452 - Jul 25th, 2013 at 4:02pm
 
If you're doing 20K per day, and you're 4-6 weeks away from the cycle, I'm thinking you should be fine.

The heavier 50K loading is more for folks who are currently in cycle and wanting to catch up sooner rather than later, I think.
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Re: 123 Days PF And I Think I know Why
Reply #1453 - Jul 25th, 2013 at 4:07pm
 
Thanks Brew Wink
Last cycle began August 6th, 2011 so am two weeks away.  Been on 20,000 nightly for about 3 or 4 weeks, missed two nights and took 50,000 that following night, and maintaining 20,000 nightly.  Just don't want to overload 50,000 daily for a week or more if it could harm me.

-Gregg in Las Vegas
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Re: 123 Days PF And I Think I know Why
Reply #1454 - Jul 26th, 2013 at 3:39pm
 
LasVegas wrote on Jul 25th, 2013 at 4:07pm:
Thanks Brew Wink
Last cycle began August 6th, 2011 so am two weeks away.  Been on 20,000 nightly for about 3 or 4 weeks, missed two nights and took 50,000 that following night, and maintaining 20,000 nightly.  Just don't want to overload 50,000 daily for a week or more if it could harm me.

-Gregg in Las Vegas

Hi gregg,

i can not say it is harmless or not but i took two times 300000 iu of vit D in one week. Nothing happened except raising my 25(oh)d3 level from 11 to 88 ng/ml in three weeks!!! i have not experienced any health issues or side effects. just wanted to tell you the way i took vit D. i can not say it will work the same in everybody.
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Re: 123 Days PF And I Think I know Why
Reply #1455 - Jul 28th, 2013 at 12:51am
 
jenga wrote on Jul 26th, 2013 at 3:39pm:
LasVegas wrote on Jul 25th, 2013 at 4:07pm:
Thanks Brew Wink
Last cycle began August 6th, 2011 so am two weeks away.  Been on 20,000 nightly for about 3 or 4 weeks, missed two nights and took 50,000 that following night, and maintaining 20,000 nightly.  Just don't want to overload 50,000 daily for a week or more if it could harm me.

-Gregg in Las Vegas

Hi gregg,

i can not say it is harmless or not but i took two times 300000 iu of vit D in one week. Nothing happened except raising my 25(oh)d3 level from 11 to 88 ng/ml in three weeks!!! i have not experienced any health issues or side effects. just wanted to tell you the way i took vit D. i can not say it will work the same in everybody.



Loading up to 50,000 iu has been discussed often on thread, but it seems to me that 300,000 iu is rather excessive and that the bioavailability/absorption can only go so far before one would just be wasting it, literally.  I would also question what negative impacts one would most likely experience with such an outrageous quantity of D3.

-Gregg in Las Vegas
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Re: 123 Days PF And I Think I know Why
Reply #1456 - Jul 29th, 2013 at 3:14pm
 
Hey Gregg,

Good question.  It turns out loading doses of vitamin D3 are most effective when serum 25(OH)D levels are low, like < 30 ng/mL where the 25(OH)D response to dose is highest.

For example, in one study conducted in 2010, Forty-eight (48) youths classified as vitamin D3 deficient were given a single oral loading dose of 600,000 IU vitamin D3.  Their average 25(OH)D response was a gain of 60 ng/mL in three days.

Results:

The 25(OH)D level was:
15.8 +/- 6.5 ng/ml at baseline and became
77.2 +/- 30.5 ng/ml at 3 d (P < 0.001) and
62.4 +/- 26.1 ng/ml at 30 d (P < 0.001).

PTH levels concomitantly decreased from 53.0 +/- 20.1 to 38.6 +/- 17.2 pg/ml at 3 d and to 43.4 +/- 14.0 pg/ml at 30 d (P < 0.001 for both). The trends were maintained in a subgroup followed up to 90 d (P < 0.001). Mean serum Ca and P significantly increased compared to baseline, whereas serum Mg decreased at 3 d. 1,25-Dihydroxyvitamin D significantly increased from 46.8 +/- 18.9 to 97.8 +/- 38.3 pg/ml at 3 d (P < 0.001) and to 59.5 +/- 27.3 pg/ml at 60 d (P < 0.05).

Conclusions: A single oral dose of 600,000 IU of cholecalciferol rapidly enhances 25(OH)D and reduces PTH in young people with vitamin D deficiency.

PMID: 20660032

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In my discussions with Dr. Robert Heaney, MD about the anti-inflammatory regimen loading doses, he referred to the following chart and indicated the 25(OH)D response to a constant daily dose of vitamin D3 decreased as 25(OH)D  serum concentrations increased.

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Based on this chart, it's reasonable to assume that vitamin D3 loading doses also become less effective as the 25(OH)D3 serum concentration rises. 

Dr. Heaney also pointed out that when 25(OH)D3 rises, so does 1,25(OH)2D3, (calcitriol).  When that happens, another enzyme comes into play that enables the kidneys to convert increasing amounts of 25(OH)D3 into 24,25(OH)2D3, an inactive metabolite with respect to calcium homeostasis.

This metabolite is part of the body's vitamin D3 self regulation mechanisms that prevents the buildup of serum calcium, the primary indication of vitamin D3 toxicity.

Based on this information and other data on loading doses, I selected a once a week loading dose of 50,000 IU vitamin D3 on top of 20,000 IU/day as a conservative dosing schedule to elevate 25(OH)D serum concentrations into the therapeutic range of 60 to 110 ng/mL where the favorable responses to the anti-inflammatory regimen have been reported.

You can find a lot more info and medical evidence on vitamin D3 loading doses at the following link:

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The takeaway from this discussion is loading doses of 50,000 IU vitamin D3 once a week on top of 10,000 to 20,000 IU/day are safe and conservative, but lab tests should be done each month until the 25(OH)D serum concentration is up around 85 ng/mL when the dosing schedule should be reduced to a maintenance dose of 10,000 IU/day.  Without a lab test, you're shooting in the dark.

Higher loading doses are also reasonable as long as they are used under a physician's supervision.

The final takeaway is the body consumes more magnesium with higher doses of vitamin D3 so it's reasonable and prudent to up the daily intake of magnesium to the RDA of 400 mg/day when taking loading doses of vitamin D3.

Hope this helps...  We'll be in Las Vegas for Thanksgiving...  I look forward to see you and Zurich.

Take care,

V/R, Batch
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« Last Edit: Jul 29th, 2013 at 3:18pm by Batch »  

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Re: 123 Days PF And I Think I know Why
Reply #1457 - Jul 29th, 2013 at 8:19pm
 
Thanks for clearing that up so professionally Pete Wink

Z and I look forward to reuniting with you and Joyce too.

-Gregg in Las Vegas
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Re: 123 Days PF And I Think I know Why
Reply #1458 - Aug 1st, 2013 at 2:23pm
 
Hey Batch ,, heres another thought to add to your D3 if is hasnt been posted here somewhere already.  I found this article that says D3 increases elasticity of blood vessels .. and that if you have stiffened blood vessels it can relax them ? perhaps the stiff vessels are putting pressure on that Trigimenal nerve and eventually the D3 will set them back into and "elastic condition" so they dont put so much pressure on the nerve ? just a thought.

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Re: 123 Days PF And I Think I know Why
Reply #1459 - Aug 1st, 2013 at 3:47pm
 
Hey,

I haven't posted for some months in this topic. Here is my update.

I started the regimen on March 1st and I am still on it. Unfortunately it hasn't ended my cycle. There were changes in the pattern of my cycle, like reduction of the intensity and frequency of attacks, shifting timing (from nocturnal to daily and vice versa) and increase in shadows.

I am taking all of the required supplements. I've tried bumping magnesium, cutting calcium and the lab tests were at around 100 for some time, I don't know the current values, probably should get tested, just to know. I watch what I eat, get plenty of greens and seeds. And I am fairly healthy.

This is by far my longest cycle, going on 8 months (so far max 6 wks), and I am unable to shake it off. I feel like I'm just at the brink of getting the beast dormant, because I honestly don't get KIPs over 5, oxygen, coffee and redbull work great, I even get a couple of completely pain free and shadows free days in between now and then.

I've also tried busting with shrooms several times for the last two and a half months with limited success. Positive for the mental state, but hasn't ended my cycle. At least not for more than 10 days.

Nothing seems to work really, I just have this feeling that I am doing something slightly wrong.

Trying to stay positive  Wink

Jure
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Re: 123 Days PF And I Think I know Why
Reply #1460 - Aug 1st, 2013 at 9:40pm
 
Hey Shakey,

An 8 month cycle... that really sucks. I feel for you.

As far as what could be preventing the regimen from helping you go pf., Batch mentions several conditions that could.  First you said your last 25(oh)d was at 100, if that is in ng/ml , you're well within pf the range, if its nmol/l you have a ways to go. The thing for me seems to be a low ph (too much acid). I've been pf for a few months by increasing artiel ph through 3-4 baking soda and water tonics a day. Also the "GOMBS" diet will do the same thing. Salvia tests strips could tell you if this is the case.
Just an idea, best of luck!
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Re: 123 Days PF And I Think I know Why
Reply #1461 - Aug 3rd, 2013 at 10:49pm
 
As I'm sure many of you know, I'm a long-term, clockwork episodic. I started when I was 13. I'm 59 now.

During the first 20 years, I invariably cycled twice a year. As I've aged, the normal, 6-week cycles have gotten farther and farther apart. The last four cycles were 3 years between.

That being said, I've been on the D-3 regimen for the past year (about the time when I expected to see a new cycle begin in 2012) to see if it might act as a preventive.

I've now gone four complete years without a cycle. Not even a hint of a shadow. It's the longest I've gone without CH--ever.

Can I attribute it to the D-3 regimen? Not with any certainty... After all, the thing seems to be fading on its own.

I will say, however, that I intend to continue the D-3 regimen. Near as I can tell, it isn't doing any harm.

As for the thing, I've lived with it for a long time. I know it well, and I know when it's skulking around in the neighborhood.

All I can say is that it's nowhere around, and I like it that way. Wink

All the best,

George
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Re: 123 Days PF And I Think I know Why
Reply #1462 - Aug 4th, 2013 at 12:30am
 
Whilst for any one person it is impossible to ever be certain if going pain free is due to the vitamin D3 or not. However with the large number of people going pain free there is good evidence that the D3 is very much having a significant impact.

But to move this to being proof then it needs a well run medical trial with a reasonable number of people in the trial. This would need to be a double blind trial, which means that people will be randomised, so some people will get the D3 and others won't, with neither the people in the trial or those interacting with them knowing who is in which pool. This helps remove sources of bias.

This is the next step that is needed for this approach and it is one that can help convince neurologists worldwide that this isn't an internet fad but something that has been proven to work.
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Re: 123 Days PF And I Think I know Why
Reply #1463 - Aug 5th, 2013 at 3:26am
 
Hi to all,

The D3 Regimen is working for me, I'm on a PF stretch, unequaled since 1996.  Grin
Thanks again Batch.

In adapting the "on-shelf" version of the regimen for CHers in OZ, I went to great lengths to make sure Batch received full credit for his ongoing work. Also directing all enquirers back to Batch's original threads "123 days PF" and "Anti-inflammatory regimen and Survey." with appropriate links, as the "recipe" is always being reviewed, added to and may change at any time - clearly a potential safety issue for some contraindications, drug interactions and/or co-morbid conditions.

It seems these folks here have lifted the regimen for their site, without any links, or credit to Batch. It's great to see the regimen getting out to CHers, for sure. PF is what we're after and I know we're all in this for the same reasons.
But without Batch's name on it?
They even have a section stating this of material posted on their site:

"Unauthorized use of Copyrighted material
Under no circumstance should material copyrighted by another party that is prohibited from duplication be posted on this site without the express permission of the copyright owner or their delegate. Copyrighted material that is not accompanied with a letter of permission will be removed from the site."
C'mon people!!!!

The survey section of the "Basic and complete Anti-inflammatory regimen Treatment protocol and dosing guide" has also been removed, denying Batch and participating CHers their hard earned survey data that will hopefully build the empirical evidence to get this to clinical trial stage. (Hang in there Mike!)

But, I reckon Batch should always be credited for his work.
Any researcher deserves credit, if not an honorable mention in this case, for their work.

I've had my creative output nicked before too, and whilst flattering... I think the originator of the research and the original source should always be credited. Medical Journals do it.

I know Batch is humble and may have seen this, perhaps even given permission, I don't know... but it would be nice to see Batch's name on this and links back to the source, should the basic regimen info change over time.

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This word document version is lifted straight off this site:

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Batch is always "V/R" and signs off with it!
Credit where it's due!
Just my 2 cents...

Cheers, Ben.
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Re: 123 Days PF And I Think I know Why
Reply #1464 - Aug 5th, 2013 at 8:28am
 
hey ben,
               I agree with you 100 % with your comments,
  plagiarism isn't a nice thing.
but I don't think batch is in this for the accolades or the rights, he has a passion about ch sufferer's.
im only new to it, but if he was concerned about this, and protected the concept until such time as it could be some how patented, well 100's of people would be worse off for the wait.
we all know the tireless hours and personal imput batch gives to many on a personal level, me included in the development of the regime,  but if, its being used else where with no reference to batch, that's a shame, but think of the people it will be helping, that's the important point.
would we all like batch to somehow gain some monetory gain for his work, hell yeh, would he ?  I recon he probably would, , but theres nothing that can be done to protect the regime from those who wish to take it, due to its origin on forums like this.   
a shame yes ben, but, unfortunately a fact of todays life.
but at the end of the day, we all know who is responsible for it.
regards
colin
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Re: 123 Days PF And I Think I know Why
Reply #1465 - Aug 5th, 2013 at 1:08pm
 
Just wanted to provide an update for everyone.  I started on the regiment in early April or late March of 2012 in anticipation of my cycle (which comes every other year).  I started taking 12,000iu D3 daily and added a 20,000iu once a week loading dose.  My cycle never started and in Nov of 2012 I got my levels checked and they were at 140! 

I eliminated the loading dose and since about the first of the year have cut my daily dose down to 8000iu.  I got my blood work done again 2 weeks ago and it came back at 112.  My cycle still has not appeared and I have now passed 3 years since the end of my last cycle.  I almost feel guilty that I've been pain free all of this time when so many others are still suffering.  I can't thank Batch enough for all of his work.  I was skeptical when I first read his initial post.  After all, we've all heard about fly by night "cures".  But after reading how many people were being helped I figured I'd give it a try (but still stock up on my prednisone and verapamil).  I know that things can change, and that, for now, there is no "cure".  But, it's over a year later I've still got those prescription bottles collecting dust in my medicine cabinet.  Thanks again Batch!
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Re: 123 Days PF And I Think I know Why
Reply #1466 - Aug 5th, 2013 at 2:01pm
 
Judge_Smails,

Thank you for the wonderful update and kind words.  It's updates like yours that encourage CH'ers sitting on the sideline in a quandary over what to take next to avoid the terrible pain of our condtion, to give the anti-inflammatory regimen a try. 

It's particularly encouraging to hear of a response like yours to this regimen from an episodic CH'er.  All too often, end of cycle or use of another preventative clouds the causal relationship between taking the anti-inflammatory regimen with vitamin D3 and a cessation of cluster headache symptoms.  Sailing pain free through a regularly scheduled cluster headache cycle while taking this regimen is strong evidence of its efficacy.

Your 25(OH)D level is great and it's clearly a good therapeutic level for you.  Yes it's a little higher than the "normal" reference range of 30 to 100 ng/mL, but you need to realize the hundreds of thousands of tests for this vitamin D3 metabolite that were used to determine the "normal" reference range for 25(OH)D were taken from a population of people, the majority of whom are vitamin D3 deficient... That shifts the bell shaped, gaussian distribution (normal) curve decidedly to the left resulting in a lower reference range.

The estimates vary among the experts, but the incidence of vitamin D3 deficiency (a 25(OH)D serum concentration ≤ 30 ng/mL, [75 nmol/L]) here in the US is likely North of 50%.

The bottom line is keeping your 25(OH)D serum concentration up in the range you're presently enjoying, buys you a week to 10 days of reserves in case you miss a dose or catch a viral bug that consumes available 25(OH)D and the active vitamin D3 metabolite 1,25(OH)2D3 at much higher rates than normal.

Take care and thanks again for the wonderful update.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1467 - Aug 11th, 2013 at 12:44pm
 
I started the regimen of 10,000 iu of vitamin d3 with immediate results, my nightly pain after an hour of sleep has disappeared.  I have added in fish oil to the vitamin d3 too.  my ch started again after a few years in remission, i previously had been on meds, oxygen, and headache buster spray with good success, a few headaches over the past few years, but headache buster spray and o2 made it go away.  this recent attack has been a bear!  after getting on sumatriptan and prednisone to treat the pain for a couple of weeks i was prescribed meds to prevent headaches referred to on this blog a dopo max, but wasn't to interested in taking another chemical.  fortunately found the vitamin d3 regimen and have had fantastic results!  some pressure sensed behind my right eye, but no real pain for 24+ hours.
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Re: 123 Days PF And I Think I know Why
Reply #1468 - Aug 11th, 2013 at 2:08pm
 
Great news Curtis...3.5 years pain free for me on the Batch Regimen, I stay on a 5000 unit a day dosing year round now. Nothing but good stuff to say for it. Here's hoping it works as well for you.

Joe
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Re: 123 Days PF And I Think I know Why
Reply #1469 - Aug 12th, 2013 at 7:25pm
 
Hiya Pete!

Congrats to all.
I followed to a T with exception to the fishoils as it is a blood thinner and I had adverse reaction.
Unfortunately it didn't do the trick for me.
I have been on it since Easter.

Best of luck!!!

E
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Re: 123 Days PF And I Think I know Why
Reply #1470 - Aug 13th, 2013 at 2:40am
 
that's a shame e-double,
   im just in the infancy and hoping, but have so far had favourable results.
  what serum level of d3 were you at ?

colin
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Re: 123 Days PF And I Think I know Why
Reply #1471 - Aug 16th, 2013 at 10:07pm
 
I started the D3 regimen about two weeks ago and am also on verapamil which I started at 180 mg once per day. I read that calcium citrate can reduce the effectiveness of verapamil so I spread them so I do the verapamil early in the morning, and D3 regimen at night.

My neurologist now has me taking verapamil twice per day, making it more difficult to spread things out.

Could I substitute something for the calcium that has the same benefit, but doen't interfere with the verapamil?

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Re: 123 Days PF And I Think I know Why
Reply #1472 - Aug 17th, 2013 at 1:00am
 
Frank,

I'm neither a doctor nor a nutritionist so I cannot and will not suggest something contrary to your neurologist's prescribed treatment for your cluster headaches.

What I can do is provide you with information you can discuss with your neurologist.
'
The first thing to discuss is your serum concentration of 25(OH)D.  25(OH)D is the serum level metabolite of vitamin D3 that's used to measure its status.  You need this lab test and your neurologist should be obliged to honor your request for it. 


The normal reference range for 25(OH)D is 30 to 100 ng/mL.  Less than 30 ng/mL is classified as vitamin D3 deficient.  If your lab test for 25(OH)D comes back less than 30 ng/mL, your neurologist should address this deficiency...  Not doing so is a breach of medical ethics.

Survey data indicates the average 25(OH)D serum concentration before starting the anti-inflammatory regimen is 28.7 ng/mL, (71.75 nmol/L).

If your lab results come back between 30 and 60 ng/mL, and this is highly probable given you've already started vitamin D3 therapy, your neurologist will likely interpret this result as "normal" and say nothing about vitamin D3 therapy.

While 25(OH)D serum concentrations in that range may be sufficient to prevent rickets, osteoporosis and osteomalacia...  data from other CH'ers here at CH.com and the online survey of CH'ers using this regimen, indicate serum concentrations of 25(OH)D below 60 ng/mL are not sufficient to prevent cluster headache.  See the following chart and show it to your neurologist.

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Regarding the calcium citrate... you can skip it for now... but be sure to take up to 400 mg/day magnesium in the form of magnesium malate, magnesium glycinate or magnesium citrate in that order of preference, 10 mg/day zinc, 1 mg/day boron, and Vitamin A (Retinol) at 900 mcg/day (3,000/day IU).  I've found that Centrum Silver is formulated to cover the above supplements in adequate amounts.

The Omega-3 Fish Oil is also an important part of this regimen... It acts as an anti-inflammatory agent and also aids in vitamin D3 absorption.

10,000 IU/day vitamin D3 is adequate for most CH'ers.  That said, some have used an accelerated vitamin D3 dosing schedule of 20,000 IU/day plus a 50,000 IU loading dose once a week on top of the daily dose of vitamin D3.

An aggressive vitamin D3 dosing schedule like this builds 25(OH)D serum concentrations at a faster rate and that usually results in less time to a favorable response... like going pain free.

Take care and please keep us posted.

V/R, Batch
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TeeJ2379
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Re: 123 Days PF And I Think I know Why
Reply #1473 - Aug 20th, 2013 at 5:41pm
 
Hi All,

Hoping Im not jinxing myself here.  But I've been feel a lot better the past two days. 

Generally my mornings are really good and PF.  As the day wears on , I get a pain in my jaw and cheek, that just gets more and more intense. I usually knock it back with a Monster Java drink and maybe a naproxen.

A few days ago I got a PM from Batch and he said to try to 50,000 IU D3 for a few days.  Well day number 2 here and I'm feeling pretty good even after a stressful day at work.  Hoping to get my d3 tested soon to make sure I'm not over doing it.  Going to do d3 at 50k for one more day, then back down to 10k and see how it goes.

I think my last test had me at 59 ng/ml - calling my GP tomorrow to get another test scheduled.  I've been on the vitamin regiment for at least 2.5 months I think.

Thanks all, and thanks to Batch for reaching out.

Fingers crossed I'm going to be able to back off my Verapamil here soon..
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Pain is a wonderful teacher and motivator...
 
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #1474 - Aug 26th, 2013 at 11:04am
 
Hey TeeJ,

Howzit going?

Take care,

V/R, Batch
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