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Anti-Inflammatory Vitamin D3 Regimen and Survey (Read 241375 times)
Peter510
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #300 - Mar 13th, 2015 at 4:48pm
 
Tony,

473 is high alright. My last test I was at 163 and hope not to exceed 200 when I'm tested in the next couple of weeks.

I am wondering if you have experienced any symptoms or side effects?

Best wishes,

Peter.
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #301 - Mar 14th, 2015 at 5:05am
 
Yes, I was very, very sick. Still am.

I had to make a real effort when started the regimen to even reach 200nmol/l. Then I was able to stay at that. But had not had my bloodwork done since I started to take K2 so I think it was the K2 that (pretty fast) got my levels through the roof.
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #302 - Mar 15th, 2015 at 6:13am
 
Hi all. Greetings from Turkey!!

First of all I'd like to thank those who contributed to this site. It's been one and only source of information throughout my CH journey.

I've been an episodic sufferer since I was 25 years old (36 now). Although its now less frequent (down to once a year) the beast is still a beast!!
My heart really really goes to those who suffer from this more frequently.
My yearly cycle began 2 weeks ago .Roughly a week passed by with flu like symptoms/shadows. Than I got hit 2 nights in a row. Both nights I was able to get relief with OTC medicine.Next day I knew the worst (peak) was coming.I went to the pharmacy to get Imıgran Subject (Imitrex) which by the way cost 19 dollars here in Turkey (w/o insurance). They are really ripping people off in US Sad
I also popped in hera again and I came upon the D3 info.
I've been taking 10,000 IU of D3 for 4 days now. I have to say, my overall well-being  definitely improved but most importantly while I was expecting more intensive attacks  I had NOTHING for 4 days .Slept thourgh the nights. I've never had a break like this during my cycles.
I have to say it's very very encouraging.
I will keep you posted.

Thank you BAtch Smiley
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Batch
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #303 - Mar 16th, 2015 at 2:20pm
 
Tony,

I'm sorry I missed your earlier post or I would have jumped on it asap with a reply.

A 25(OH)D serum concentration of 473 nmol/l is high, but not necessarily toxic.   That said, I would stop taking the vitamin D3 for at least two weeks and get tested again for 25(OH)D.  You should be shooting for 200 nmol/L as your target 25(OH)D serum concentration.

The lowest threshold for vitamin D3 toxicity is likely closer to 500 nmol/L, (200 ng/mL) but there are some vitamin D3 experts who opine the real serum concentration associated with vitamin D3 toxicity is closer to 750 nmol/L (300 ng/mL).

It would be unethical to conduct a study to determine the serum concentration of 25(OH)D where 50% of people would experience vitamin D3 toxicity as indicated by a serum calcium concentration greater than the normal reference range... 

Instead, the people who try to determine these critical levels rely on clinical data obtained from a few obvious cases of vitamin D overdose. Then they use an abundant level of caution and cut that figure in half to build in a "safety margin" to develop the lower threshold for vitamin D3 toxicity.

I'm not a doctor, but if you've been taking 10,000 IU/day vitamin D3 all along and your 25(OH)D and your 25(OH)D is 473 nmol/l, you may have another problem.

The first thing to do is check the label on your bottle of vitamin D3 to make sure of its strength.  Is this the same brand and strength of vitamin D3 you've been taking all along?  Have you taken any cod liver oil?

See your PCP asap for lab tests of your serum concentrations of total calcium and Parathyroid Hormone (PTH).  You may have a condition called hyperparathyroidism.  This condition occurs when one or more of your four parathyroid glands start pumping out more PTH than normal.

Another prudent lab test to ask for is the Ca/Cr (Calcium/Creatinine) ratio...

As a side note... I don't think the vitamin K2 had any affect on your 25(OH)D serum concentration...  If anything the vitamin K2 complex should help keep 25(OH)D serum concentrations from getting too high.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Mar 17th, 2015 at 10:00pm by Batch »  

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Re: Anti-Inflammatory Regimen Update and Survey
Reply #304 - Mar 16th, 2015 at 3:08pm
 
Hey Baris,

Welcome to CH.com and to the anti-inflammatory regimen. 

Quite a few CH'ers respond to the anti-inflammatory regimen experiencing a cessation of their CH like you within a day or two after starting it.

It almost sounds too simple...  After years of trying different CH preventatives and different combinations of CH preventatives with only marginal relief, when a day or two taking 10,000 IU of vitamin D3 and the cofactors results in a pain free response, is a very pleasant surprise.

Stick with this regimen year round... In addition, make sure to take at least 400 mg/day magnesium.  Double that dose to 800 mg/day magnesium if you need to start a vitamin D3 loading schedule.

See your PCP after a month or so for the 25(OH)D lab test...  You should be shooting for the 25(OH)D serum concentration of 200 nmol/L, (80 ng/mL) in order to stay pain free and have a sufficient 25(OH)D reserves to handle any infections, allergies, trauma or surgery and still remain pain free.

Take care and please keep us posted.  It's always a good to hear from CH'ers all over the world taking this regimen.  It's even better when they've responded like you...

V/R, Batch
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #305 - Mar 17th, 2015 at 6:43am
 
Thank you so much for another excellent reply Batch. I would never have figured out another potential condition, neither would have my doctor (they are basically saying never to use Vitamin D again).

Yes, I have been using the same product all this time. It's Healthy Origins Vitamin D (5,000IU) and I have been taking 2 of these daily.

Had to Google what cod liver oil is but no, have not been taking that, have been taking only that 1 Omega-3 tablet (DHA+EPA 250mg).

I too had thought 10,000IU/day as safe and would not have even thought that to be a problem, when I went to doctor I had the 25(OH)D measured just because it had been some time since it was last measured.

I have stopped taking Vitamin D ever since I got results and will have new 25(OH)D measurement as soon as possible. And all the other tests you mentioned. I hope my doctor is familiar with these or can get a hold of someone who is.

Thank you very much. Will keep you posted.
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #306 - Mar 21st, 2015 at 10:55am
 
Update:
Tomorrow will mark the beginning of week eight.
And today is six days in a row PF and no sign of any shadows - a new record for this cycle.
I'm cautiously optimistic...since I've done two sets of five days PF followed by four days of morning hits. We will wait and see...and hope for the best.
Gary
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #307 - Mar 21st, 2015 at 5:03pm
 
Gary,

Wooo Hooo!  'Luv to hear feedback reports like this...  Keep'em coming...

Take care,

V/R, Batch
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #308 - Mar 25th, 2015 at 11:01am
 
Good morning Everyone!
Well, it's now been 10 days since my last hit and I've continued to remain hit free!
I'm going to go out on a limb here and declare (with 98% certainty) that this cycle is over.
All in all, as I've said in previous posts, this was the most manageable cycle I've ever had and I'm pretty sure I can attribute that to the D3 regimen (since it was the only thing I did that was different from other cycles).

When I did get hits they mostly stayed in the kip 5-7 range (not the usual 8-9) and they were easily aborted using O2. I resorted to Imitrex only four times (as opposed to dozens during previous cycles). A good number of hits went away on their own within 10-15 minutes (which has never happened before).

I was hoping that the D3 was going to shorten the cycle or abort it completely but not so. It lasted seven weeks; still, I'll take it.

I did experience some bizarre and unexpected additional symptoms which I can't explain and have never experienced before (nor seen described on the message board), but those are gone as well, so I don't feel the need, as of right now, to see my PCP and rack up huge bills for innumerable tests. (I'll post those for perusal when I've got more time)

Thanks to everyone for all your encouragement and help during this. I'll keep in touch and continue to post hoping to help others with my input.
Gary
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Peter510
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #309 - Mar 25th, 2015 at 12:17pm
 
Gary,

Great news. I'm doing pretty good myself and have had the best couple of months in about 2 years.

Took a break to Rome (there now) and no hits on the plane (a first) and barely a shadow either.

I intend to make the D3 Regimen a part of my daily routine, permanently, as I was chronic for so long. You should do the same whether in cycle or not.

Happy days.....Thanks and God bless you Batch.

Peter.
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Tony Only
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #310 - Mar 25th, 2015 at 2:09pm
 
I got a blood test taken yesterday and now the figure was 350 nmol/l. I have not been taking vitamin D for 12 days and since the starting figure was 473 nmol/l it looks like my 25(OH)D is coming down around 10 units per day.

I try to attach the other tests taken to see if I have hyperparathyroidism. To me they look ok.

I have not talked with my PCP yet to figure out what would be the next step. I've had immediate activity increase on my CH though, during this time I have been off Vit D.
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Batch
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #311 - Mar 25th, 2015 at 11:27pm
 
Hey Tony,

A 25(OH)D of 475 nmol/L, (189.2 ng/mL) was clearly too high...  That said, the 25(OH)D half-life is roughly 15 days.

350 nmol/L, (140 ng/mL) isn't necessarily high if it keeps you pain free.  How is the head? 

I need to keep my 25(OH)D between 120 and 145 ng/mL in order to stay PF this time of year with all the pollen...  My serum calcium and PTH are normal...

Your serum calcium is fine and this indicates there's no vitamin D3 intoxication.

You may be one of the few who has a liver that's very efficient in converting (hydroxylating) vitamin D3 into 25(OH)D.  What was your dose of vitamin D3 and duration at that dose prior the first lab test?

Given your serum calcium is normal, I suspect your PTH will be normal as well...  i.e., no hyperparathyroidism...

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Mar 25th, 2015 at 11:28pm by Batch »  

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Re: Anti-Inflammatory Regimen Update and Survey
Reply #312 - Mar 31st, 2015 at 9:34am
 
I double-checked with the hospital when I noticed the ">" sign so for some reason they can't get the accurate measurement, my result just means my 25(OH)D is higher than 350 nmol/l that's why it is marked ">350". It would be good to know the actual level so one could do some counting at what pace the 25(OH)D is coming down.

Now it is 19th day without my vitamins and I have had increase in both frequency (of shadows/attacks) and severity. My CH has not had the strength it has now since I started Vitamin D so that makes me a bit worried. I have been strictly forbidden to use Vitamin D until my levels are "safe".

But since it looks like there's no intoxication I may have some room to maneuver over here. It will just get troublesome if I do something against doctor's orders.

If "liver that's very efficient in converting (hydroxylating) vitamin D3 into 25(OH)D" would mean that my liver would be in better-than-usual shape that would be very hard to imagine. Lot of alcohol use in my youth plus directly after that continuos truckloads of pills for almost 2 decades for my CH.

I started current Vit D run on fall last year (around september) at first 5,000IU daily then during wintertime 10,000IU daily. I have never exceeded the 10,000IU not even once.

Should I still ask this "PTH" to be taken if it's not that first value in my table (FP-PTHInt)? In finnish it's name is "FP-Parathormoni" and I'm pretty sure in english it's Parathyroid hormone.

Thank you again Batch.  Smiley
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« Last Edit: Mar 31st, 2015 at 9:35am by Tony Only »  

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Batch
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #313 - Mar 31st, 2015 at 10:44pm
 
Tony,

Although I can understand why some physicians suffer fibrillation and explosive anal leakage when they see a lab test for 25(OH)D come back above the normal reference range, and in your case >350 nmol/L (>140 ng/mL), I'm not at all uncomfortable if my 25(OH)D serum concentration gets that high.

The 25(OH)D half-life is around two (2) weeks so your present serum concentration after 19 days without supplemental vitamin D3 is likely < 170 nmol/L, well within the normal reference range (75 to 250 nmol/L).  This is likely why you've experienced an up-tic in the frequency of your CH...

There's a classic study titled A Phase I/II Safety Trial of High Dose Oral Vitamin D3 with Calcium Supplementation in Patients with Multiple Sclerosis, in which patients took escalating doses of vitamin D3 from 4000 IU/day up to 40,000 IU/day for six weeks at each dose.  This elevated their 25(OH)D up over 400 nmol/L, but there were no problems noted... 

Calcium serum concentrations remained within the normal reference range and PTH, as expected was low.  They even did calcium/creatinine ratio tests and they were still normal.  The following six slides from that study tell the whole story...

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Obviously, study participants were tested at scheduled intervals throughout the year long study.

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As you can see from the study conclusions... High doses of vitamin D3 for weeks at a time were not a problem.  Moreover, there was a marked improvement in RRMS parameters.

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As a related side note, I've been taking an average of 50,000 IU/day in order to stay pain free due to a raging allergic reaction to Alder tree pollen for the last two weeks.  I've also had to take benedryl three times a day to stop the histamine flood caused by the allergic reaction.

I averaged 40,000 IU/day vitamin D3 for over a month last year in March due to the pollen storm and my 25(OH)D was 145 ng/mL, (362 nmol/L). My calcium stayed within it's normal reference range and PTH was low.

Ultimately, it's your call to restart this regimen and halt your CH... or sit back and endure some heavy sledding...  Show your PCP these slides and ask for lab tests of your serum 25(OH)D  total calcium serum concentration and PTH every month to six weeks if you decide to restart the anti-inflammatory regimen. 

Bottom line... as long as your total serum calcium remains within its normal reference range and PTH stays low... No Worries...

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Apr 1st, 2015 at 12:21am by Batch »  

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Re: Anti-Inflammatory Regimen Update and Survey
Reply #314 - Apr 1st, 2015 at 1:50am
 
Hi,  I had an interesting happening today
I went into see my local doctor who is up to date with the regime, she was on holiday, so I got another one. I wanted another updated script for verapamil, i'm taking a s/r 180mg tablet daily, quite low for what i'm reading.
So I asked for my d3 to be tested and my calcium levels, she also wanted me to get both kidney and liver tests as well, So will be interesting to get results.
Ive been on 10,000 d3 for nearly 2 years, I did go from 194 nmol to 234noml from one test to the next 4 months later. My last test was in December, 240 nmol, so it will be interesting to see what's happened this time.
The interesting part of it all, was she read my notes and asked me all the questions about the d3 regime, then said that she suffers from migraines and has been taking liquid d3 for a while now, and her d3 levels are 15 nmol !  she said my levels wont increase but her migraines are hitting her less while taking oral d3. I gave her the website details for her info, and mentioned about the need to take magnesium etc, and even gave her a contact where she can purchase 10,000 iu capsules of d3 here in Australia. She was very very interested, she commented about the fact I shouldn't be taking calcium while on those doses, and I said the multi has about 200mg of calcium in it, I think she has ordered the liver and kidney test along with what I wanted for her own interest in regards to her migraine issue.  She also commented that the government here who subsidise the d3 test, has had a big clamp down and advised all doctors that no more tests should be done unless patients are required to be on excessive doses of d3. All the test results come back with any thing over 125 nmol showing in the red as to much !
I believe she wants to get me fully tested, liver, kidney, d3 and calcium to gain info for her own issues, she said she cant function as a doctor on imigran as it makes her drowsy, but the liquid d3 she's been swallowing has made an improvement,  very interesting appointment.
My other issue with the magnesium and starting a probiotic, worked for a week, then back to the old issue !!!!
I intend on carrying on with the probiotic's and diet changes as batch suggested, but these round of full blood works should show up anything un-toward, in regards to the  levels we take and probably convert the doctor to regime, as she is a sufferer !!!!!
I'll put up my results for those that are interested when I get them in 3-4 days or so....

regards
colin
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #315 - Apr 1st, 2015 at 4:52am
 
Just got my test results back, 47ng/ml = 117.5nmol/L
I'm taking 5000iu vitamin D3/day, plus the other
cofactors, excluding Calcium, and only 266mg of
Magnesium Citrate /day

Hoppy.
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« Last Edit: Apr 1st, 2015 at 5:11am by Hoppy »  
 
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #316 - Apr 1st, 2015 at 7:38am
 
There was 13 days completely without any vitamins in between my measurements, so it was 473 nmol/l > 13 days without vitamins > next test showed over 350 nmol/l.

I was in the phone again today with my nurse who talks with PCP (that's how system works here). PCP did not have an opinion why 25(OH)D could get so high with so "little" Vitamin D, she referred me to ask from "wherever I got the advice to use Vitamin D" (what I am doing now). She also said not to use Vitamin D in the future because it is "problematic" in my case. For me, that's not an option. I try to get a new PCP, the one that would take a look at everything offered here. I would also like to know if there is an underlying personal reason why I got up there.

That being said, I have not been at doctor's since 2010 when I detoxed from all CH medications, cancelled surgeries to avoid death. I reached 100% PF state from most severe chronic CH there is. I was not allowed to do that either. So self treatment is a big part of my CH it's just a fact that I need to cooperate at some level to get my blood levels tested; which has not been easy, even these two times.

I aim to have next blood test on April 7th and not use any vitamins until then. It's just a battle here to get that blood test taken. CH is tolerable and with my history I can take just about anything for a week.

What an excellent reply and post once again Batch. I have not received something like this in my lifetime. Feeling blessed. Thank you.
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« Last Edit: Apr 1st, 2015 at 7:44am by Tony Only »  

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Re: Anti-Inflammatory Regimen Update and Survey
Reply #317 - Apr 2nd, 2015 at 8:00pm
 
Colin, Hoppy, Tony,

Great posts!  It's clinical data like this that helps us better understand the anti-inflammatory regimen and the role of its supplements.  It's also this type of information that will help us develop rules of thumb to improve the efficacy of this regimen by tailoring the dosing to meet individual needs.

Colin, it's always exciting to hear of yet another physician taking a proactive role in this regimen taking good notes and ordering followup labs. 

As a side note, there's more than ample evidence that physicians and in particular, headache specialists, who also suffer from headaches like migraine, are far more understanding of what we go through so ensure ready access, effective treatments, and followup.

Regarding experiments in fluid dymamics during the daily constitutional, you might want to try Elemental Chelated Magnesium, Magnesium Glycinate, or Magnesium Malate.  They tend to be more expensive... but a few cents a day may be worth it.

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Vitamin D Wiki has an excellent coverage on magnesium supplements at the following link:

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Take care and thanks again for the lab data.

V/R, Batch
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #318 - Apr 8th, 2015 at 1:47am
 
Hi Guys,
                as previously mentioned, last week I went in for my regular blood tests. 
Last test, in November,  240 nmol ( no calcium test)
last weeks test               222 nmol  calcium 2.35
now that with being on the regime for nearly 2 years and titrating up a fair bit last year due to persistent shadows.
the previous test was around 205 nmol, 6 months pryor
Calcium level, last time tested, no difference.
The proof is in the pudding as they say there Batch !!!!

Now, as per my previous post, with a continuing problem of looseness !!  I started a 3 month course of a good probiotic, worked well for 3 days then back to the same.....
So, after my test ( before the results) I went completely off the regime for 4 days, only taking the probiotic and 180 mg verapamil. Within 2 days, everything "firmed up" and on the 5th day, slowly introduced the regime, first day, just the multi, second day, re introduced the whole regime, but only 220 mg magnesium ( and the mag content of the multi, 50 mg)  and so far ok, ( a week).  I might leave it at that for a week or so, then lift the magnesium up to 440 mg plus multi content.
The funny thing was, with a vit d3 half life of 15 days (?)
I probably dropped from 222 nmol down to 200 nmol ?   and bugga me, wouldn't ya read about it, shadows and hits through the night for the last 3 nights !!!!   however, at this stage, its almost like a mini cluster hit, more than a shadow, getting to kip 3 ish, and only lasting 15 minutes or so. The ones in the middle of the night ( 3 last night, 12.00 am, 2.00 am and 5.00 am)  I get up, have a scratch, ponder on a red bull or an imigran tablet, have a cold glass of water and within minutes it disappears !!!
Hey, Im not complaining, because the alternative pryor to the regime, was horrific !
So, with out fear now of any so called " intoxication" of vit d3, with regard to calcium serum levels, Im titrating up tonight with 50,000 iu and a few days of 20,000 of vit d and try and smack down this current cycle.
I can live with the last 6 months of what "The beast" has thrown my way,  and now more than ever, I have no issues at all with titrating up with d3, even if my levels are over 200 nmol ( 80 ng ).
I know the key with me, is getting my stomach to accept all forms of the regime, which so far, touch wood this time all good ( a week and counting  Grin )
But I know I wont be doing another burn  down of d3 any time soon,   Batch, I don't know how you do it    Huh
anyway, just thought ide share the test results and back up what batch has been stating for a while now,   unless there's other pertaining issues, Vit d3 is pretty safe !

regards
colin
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« Last Edit: Apr 8th, 2015 at 1:49am by N/A »  
 
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #319 - Apr 8th, 2015 at 2:21am
 
I got another blood test yesterday. I am just wondering this

Batch wrote on Mar 31st, 2015 at 10:44pm:
The 25(OH)D half-life is around two (2) weeks so your present serum concentration after 19 days without supplemental vitamin D3 is likely < 170 nmol/L, well within the normal reference range (75 to 250 nmol/L).  This is likely why you've experienced an up-tic in the frequency of your CH...


half-life time, what it should mean in practise? I have now been 26 days without any vitamins (ever since I got that 473nmol/L reading) but yesterday blood test still showed >350nmol/L. So it's over 350 but I don't know the exact number.

MOD: I am in Finland so there's no way sun would have any role. And can't think of even one thing in my diet that would. For some reason serum concentration just stays up.

Huh

MOD2: Found this

"An additional complication in assessing vitamin D status is in the actual measurement of serum 25(OH)D concentrations. Considerable variability exists among the various assays available (the two most common methods being antibody based and liquid chromatography based) and among laboratories that conduct the analyses [1,7,8]. This means that compared with the actual concentration of 25(OH)D in a sample of blood serum, a falsely low or falsely high value may be obtained depending on the assay or laboratory used [9]. A standard reference material for 25(OH)D became available in July 2009 that permits standardization of values across laboratories and may improve method-related variability [1,10]."

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« Last Edit: Apr 8th, 2015 at 2:28am by Tony Only »  

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Re: Anti-Inflammatory Regimen Update and Survey
Reply #320 - Apr 8th, 2015 at 12:22pm
 
Tony,

The two week 25D half-life is an average. It's also dependent on the actual starting serum concentration where vitamin D3 supplements are stopped. On top of that there are differing opinions on 25D half-life...  Some have the half-life at two months... but the average range appears to be one to six weeks.

Henry Lahore, the brains behind the Vitamin D Wiki website has a page on this topic at the following link:

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The following graphic illustrates the range of 25D Half-Life by 25D serum concentration.

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Body Mass Index (BMI) can play a role...  If your BMI is above 25, it's possible you've retained enough 25D in fat tissues to slow its release and this would increase the half-life. 

You've pointed out another potential answer in the lab test...  It's not uncommon to have slightly different 25(OH)D results if two different assay methods are used... 

Most medical labs us an automated Immunoassay with Liquid Chromatography–Tandem Mass Spectrometry...  The error margins for this assay method are generally less than 2 nmol/L.  Moreoever, nearly all medical labs calibrate their assay method against a known standard... so I don't think the lab results are in question.

Diet is likely the primary determinant of 25D half-life in your case.  Look over your dietary intake.

My question to you at this point is howz the head?

Hope this helps.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Apr 8th, 2015 at 12:26pm by Batch »  

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Re: Anti-Inflammatory Regimen Update and Survey
Reply #321 - Apr 8th, 2015 at 3:27pm
 
Colin,

Great post and tantalizing topic...  Dosing changes and resulting lab data while taking this regimen always grab my attention.

This topic also hits the top of my list of things to do... and that's to come up with a simple rule of thumb regarding the maintenance of a CH pain free status while taking the anti-inflammatory regimen. 

Posts here at CH.com and data from the online survey of 127 CH'ers taking the anti-inflammatory regimen provide us with important findings.  For example, nearly all CH'ers with active bouts of CH have a vitamin D3 deficiency with a 25D serum concentration less than 30 ng/mL, (75 nmol/L).

This same data set also provides us with important data on the average "sweet spot" in 25D serum concentration that keeps us pain free at 80 ng/mL, (200 nmol/L). This 25D serum concentration requires an average daily vitamin D3 intake of 10,000 IU/day. 

Moreover, although this 25D serum concentration is likely higher than what is actually needed to maintain a CH pain free state, it does provide sufficient reserves to handle relatively minor cases of inflammation. 

We've also found from the empirical data provided by CH'ers taking this regimen, that there are a number of medical conditions that result in a generalized increase in inflammation that can be overcome by increasing the vitamin D3 intake. 

Examples include viral and bacterial infections, surgery and trauma.  In other words, comorbid medical conditions that compete for the same available serum substrates of vitamin D and 25D needed to stay CH pain free.

The simple course of action/rule of thumb is to increase vitamin D3 intake and if possible, treat the comorbid condition. 

This is an easy thing to do if the source of inflammation is a bacterial infection easily and effectively treated with an antibiotic.  Of course we'd need to repair the collateral damage caused by antibiotics by taking probiotics to recolonize friendly bacteria in the GI tract that were destroyed by the antibiotic.

There are no silver bullets for viral infections and the only defense is maintaining a healthy immune system...  That makes taking additional vitamin D3 and magnesium to boost the immune system, the prudent course of action.  Trauma and surgery fall into this category as well.  Both conditions have been linked to a drop in serum 25D concentration upwards of 40% within a week of the trauma or surgery.

I've found there is one general medical condition that can't be easily overcome by taking more vitamin D3... and that's an allergic reaction.  The likely reason for this is an allergic reaction generates a flood of histamines that overload the capacity of this regimen to prevent CH.

Roughly 17% of CH'ers who start the anti-inflammatory regimen don't respond with a decrease or cessation of CH symptoms...  Data from the online survey of CH'ers taking this regimen indicate comorbid medical conditions in roughly a third of these cases.

There are also a number of CH'ers taking 10,000 IU/day or more and maintaining a 25D serum concentration between 100 to 150 ng/mL, (250 to 375 nmol/L) and are still getting hit. 

In many cases, there are no outward symptoms to help in the identification of possible underlying medical conditions and that suggests the presence of a possible sub-clinical allergic reaction.

Starting at the first of March, I began titraing my vitamin D3 from a maintenance dose of 10,000 IU/day up to 50,000 IU/day to combat the high pollen count in an attempt to stay pain free.  This worked for the first two weeks... However by mid March the pollen count got so onerous I started to get hit... and I was taking 50,000 IU/day vitamin D3.  You can see why in the following photos of my formerly black pickup coated with Alder pollen...

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Not to be outdone, as the Alder pollen drop decreased... the Bigleaf Maples have started their pollen drop...  and it looks to be even more onerous...

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That's not new leaves on the Bigleaf Maple tree shown above... It's Bigleaf Maple blooms loaded with bright yellow pollen shown below.

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I've never been troubled by pollen allergies...  That said, when the airborne pollen is blowing around like a dust storm and you can see it sifting into the air...  all bets are off.

Fortunately, a solution exists for this case, at least for me and a few other CH'ers, and that is to start a course of benadryl (diphenhydramine) at 25 mg four times a day... Start this course with a 50 mg loading dose of benedryl.

The rational for taking benedryl has to do with its capacity as first-generation antihistamine, to pass through the blood brain barrier in order to block histamine receptors in brain cells... where CH'ers need this capability most.

The down side of benedryl and other first-generation antihistamines is they're a CNS depressant so cause drowsiness. Second- and third-generation anti-histamines cannot pass through the blood brain barrier so do not have this problem.

Accordingly, if you do start taking benedryl, don't drive if at all possible as you will get drowsy.  Not surprisingly, this drowsiness can also be a benefit in most cases as most of us have lost quality sleep due to the night hits and the benedryl will help get that badly needed sleep.

Hope this helps...

Take care,

V/R, Batch
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« Last Edit: Apr 12th, 2015 at 9:31am by Batch »  

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Re: Anti-Inflammatory Regimen Update and Survey
Reply #322 - Apr 9th, 2015 at 8:59am
 
My wonderful PCP just left on the maternity leave, so currently don't have a doctor I could talk to so now it's even more difficult to get blood tests. But at least I have one more coming in 2 weeks. I think I should be at least under 350 then.

Now that I don't have a doctor I can only talk to nurse and just went through my diet for the past month with her, could there be anything there that would keep my levels up - we didn't find anything.

I'm underweight and my BMI is 17.9 so that should not be a factor either.

I got an immediate increase in CH activity when I stopped the Vit D but mysteriously now things have seemed to calm down. Would not have believed to be doing this well at this stage.

Will keep you posted, thanks again Batch  Smiley

MOD: I have been using Acetium (L-cysteine) almost regularly this year, just thinking out loud could that play a role in elevating 25(OH)D level more rapidly, keeping it up and/or levels coming down so slow ?
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #323 - Apr 9th, 2015 at 4:27pm
 
Tony,

It took a good bit reading to get my head around the information you've provided but the combination of L-Cysteine and a low BMI explains a lot... 

It appears L-Cysteine triggers rapid hydroxylation of vitamin D3 to 25D by increasing the activity of the enzyme 25-hydroxylase which adds a hydroxyl group (-OH) to vitamin D3 at the 25th position on this molecule.

In addition, as vitamin D3 and its metabolites are lipophilic - (rapidly dissolve in fats), the low BMI (low body fat content) also accelerates a rapid increase in serum concentrations of vitamin D3 and 25D due to the lack of fat to take them out of the blood stream for storage.  So this is why your 25D shot up so fast.

I suspect L-Cysteine is also mediating another vitamin D3 enzymatic process by limiting the activity of 25D-24-hydroxylase witch hydroxylates 25D to 24,25D by adding a hydroxyl group to the 24th position on the vitamin D3 molecule.  As 24,25D is an inactive vitamin D3 metabolite that's rapidly broken down and eliminated in urine, the absence of this enzymatic process would help explain why the 25D serum concentration remains elevated.

That the activity of your CH pattern has dropped is clearly a function of the elevated 25D serum concentration.  I suspect the frequency of your CH attacks will remain low until your serum 25D eventually drops below 175 nmol/L.

The increase in CH frequency when you stopped taking vitamin D3 can also be explained.  This has to do with where vitamin D3 metabolism takes place. 

Conventional wisdom held that serum concentrations of vitamin D3 is first metabolized (hydroxylated) by the liver into 25D which then travels through the blood stream to target cells where it enters the cells and then metabolized to 1,25D the active form to support genetic expression.

Recent research indicates it's the vitamin D3 that actually enters target cells where it is first hydroxylated to 25D and then hydroxylated again to 1,25D. 

When you stopped your vitamin D3 intake, that left only 25D to feed the genetic expression processes throughout your body.  Moreover as the vitamin D3 molecule is smaller than the 25D molecule, vitamin D3 passes more rapidly through the cell wall than 25D.

Bottom line...  Your low BMI leaves little fat for vitamin D3 and 25D storage so nearly all of the vitamin D3 and 25D remains in blood serum.  L-Cysteine increases the rate of metabolism that takes vitamin D3 to 25D. It also inhibits the body's normal vitamin D3 control mechanism that metabolizes 25D to the inactive metabolite 24,25D. 

The combination of these two processes keeps 25D concentrations higher than normal.  That also means the rate at which the 25D serum concentration drops is likely controlled by the speed at which it's consumed during genetic expression... and that is not very fast...

Your next few labs on 25D will be very interesting...

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Apr 10th, 2015 at 4:09am by Batch »  

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Re: Anti-Inflammatory Regimen Update and Survey
Reply #324 - Apr 10th, 2015 at 6:45am
 
Wow, Batch. Just Wow.
I am overwhelmed.
Thank You SO much.
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