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d3 regime 2 weeks in (Read 6898 times)

blacklab

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d3 regime 2 weeks in
Jun 17^th, 2013 at 8:39am

well, just thought ide relay my experience thus far on d3 regime. two weeks today since starting,up to 20,000iu per day with 50,000 dose up once a week (tonight) along with 400 calcium 400 magnesium, 1200 fish oil and muti vit.
still getting hits, 1 or two a day, but have been at half the intensity. busting them with a red bull, or imigran tablet.
the',ve been different, in a way I cant explain, sometimes I get shadows for 3 or 4 hrs that gradually get more and more intense, until I red bull or imagran tablet them, never really had shadows like that before, other times its all the symptoms, eye swelling with pressure, nose blocking up, then the electric tingles, then that pain, but it doesnt really come to anything that bad. something has changed, just waiting for that p/f time that im hoping will happen. the day I started the regime, I got the" man flu" which is only just clearing. I remember reading something from batch that this would probably reduce me d3 absorbtion. my blood test came up 54 nmol at the start, so ive got two weeks left and im getting tested again.
hoping now that the flu is clearing, my system will soak up that d3.
has definitely done something in regards to the intensity level of my clusters, so im continuing with it.
interested to no from others whether it changed or made them irratic or different when they started taking the regime ?
regards
colin ps. it works, but still cant get used to swigging down a red bull at 6.00 in the morning LOL

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TeeJ2379 CH.com Veteran Offline I Love CH.com! Posts: 140 Central PA, USA Gender:	Re: d3 regime 2 weeks in Reply #1 - Jun 17^th, 2013 at 11:07am I am about the same blacklab - just a lot of shadows but no hits in about 4 days...hoping this clears up too once I'm on the proper MG supplements (Citrate instead of Oxide)
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: d3 regime 2 weeks in Reply #2 - Jun 17^th, 2013 at 12:05pm Sounds like things are working the way they should. But what the hell is the "man flu?"
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blacklab

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Re: d3 regime 2 weeks in
Reply #3 - Jun 17^th, 2013 at 5:43pm

thanks guys, that's good to know. I can almost not take anything, just let it play out, as its not getting to the head banging stage any more. but its sort of a tentative thing, as it starts, your sort of caught between trusting that it wont develop into a 10, or popping an imigran tablet early before its to late. teej, that's fantastic mate, we started about the same time on the regime, so really happy for you.
brew LOL
thanks all
colin
down under we have a saying for when men get a cold etc, "man flu" with the add on that, its much much worse than when a female gets it. a bit of gender banter. Grin

Grin

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Sean McE

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Re: d3 regime 2 weeks in
Reply #4 - Jun 18^th, 2013 at 1:17am

I'm in about the same boat, started D3 3 weeks ago and I'm apparentlly have good luck with it. Big improvement but the poor beast doesn't know what to do next, big long shadows almost migraine like, no major hits, several days totally PF before a getting a minor hit that dies nicely with ox and then PF again---completely different than my average cycle but I'm liking it. Still taking sumatirptan at night though. Test time is coming, Wild Turkey, I hope soon.
I hope we're all the 80% er's Sean

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blacklab

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Re: d3 regime 2 weeks in
Reply #5 - Jun 18^th, 2013 at 1:47am

hey that's good sean,
I just wish I could shake this damn flu ! I know its hindering things. but your right, sometimes it feels more migrainey, im still taking verapamil in the mornings, wont change that as I want to keep all the same until I can hopefully p/f. but yes, somethings happening to the cycle !
good luck sean, fingers crossed.
colin

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Batch

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Re: d3 regime 2 weeks in
Reply #6 - Jun 18^th, 2013 at 1:53am

Blacklab,

I had the same question as Brew... Man flu?

The following slide illustrates the two vitamin D3 metabolism paths and major consumers of 25(OH)D and the final metabolite 1,25(OH)2D3, a.k.a. calcitriol, the hormonal form of vitamin D3.

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Assuming normal liver, kidney and parathyroid functions, roughly 20% of the vitamin D3 metabolized into 25(OH)D by the liver is further metabolized by the kidneys to support calcium homeostasis. This is called the endocrine path.

The rate at which 25(OH)D is metabolized to 1,25(OH)2D3 in the kidneys is tightly controlled by PTH (Parathyroid Hormone) in order to keep total calcium serum concentrations in a very narrow range and to maintain bone mineral density (BMD).

The remaining 80% of the 25(OH)D produced in the liver is consumed at the cellular level in what is called the autocrine/paracrine path. This is the path that many vitamin D3 experts claim results in genetic expression of over 2000 genes in the human genome.

From our standpoint as cluster headache sufferers, it is clearly possible that 1,25(OH)2D3 down regulates/suppresses the production of CGRP (Calcitonin Gene-related Peptide) in brain cells that is elevated during both cluster headache and migraines. This is just a SWAG (sophisticated wild-ass guess) at this point. However, if we can ever get researchers interested and funded to study the causal relationship between cluster headache and a vitamin D3 deficiency... we might just get confirmation.

The active form of vitamin D, 1,25-dihydroxvitamin D3 (1,25(OH)2D3), is a pleiotropic hormone whose actions include the regulation of calcium homeostasis, control of bone cell differentiation and modification of immune responses. Synthesis of 1,25(OH)2D3 from the major circulating metabolite, 25-hydroxyvitamin D3(25(OH)D3), is catalyzed by a mitochondrial cytochrome P450 enzyme, 25-hydroxyvitamin D-1-a hydroxylase (1-a OHase).

A few years ago it was though this enzyme was only found in the kidneys. It was later found in the gut, lungs, and in all the body's tissues making the extrarenal metabolism of 25(OH)D to 1,25(OH)2D3 possible throughout the body.

If you haven't broken the code, researchers name enzymes for the product they produce followed by "ase", i.e., 1-a OHase which adds the (OH) radical at the first position in the 25(OH)D3 molecular chain.

As you could can see in the slide, 1,25(OH)2D3 activates our immune system's T-Cells. Newly formed T-Cells are naive, (they don't know what to do... until activated). However, once they're supplied with sufficient concentrations of 25(OH)D and 1,25(OH)2D3 they start becoming aware of genetic fragments of virus floating around them.

Once sensitized to these viral fragments, the T-Cells start multiplying rapidly into little pack man cells that gobble up that particular virus. Some of the T-Cells just remember the specific virus in case it ever becomes present again. - In a word, immunity... to that virus.

The highest concentrations of 1-a OHase and naive T-cells are found in the gut and lungs... Not all that surprising given the gut and lungs are exposed to more pathogens than any other part of the body.

Accordingly, viral infections like colds and flu trigger our immune system's T-Cells and that consumes available 25(OH)D and 1,25(OH)2D3 at much higher rates leaving little to trigger the genetic expression (down-regulation/suppressed production of CGRP) that prevents our cluster headaches.

There's another consumer not shown on this slide. It's 24-OHase, an enzyme that adds an (OH) radical to the 24th position on the 25(OH)D3 molecule to yield another metabolite of vitamin D3, 24,25,(OH)2D3. This metabolite is inactive with respect to the endocrine and autocrine functions. It's also easily broken down in the kidneys and pumped over the side in urine. This is one of the body's self-regulating mechanisms that prevents 1,25(OH)2D3 concentrations from reaching toxic levels...

In short, we've got a lot of yin-yang functions going on with respect to vitamin D3 metabolism. These functions can and will result in fluctuations in cluster headache frequency, severity and duration until the 25(OH)D serum concentration stabilizes around 85 ng/mL.

Hope this helps.

Take care,

V/R, Batch

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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blacklab

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Re: d3 regime 2 weeks in
Reply #7 - Jun 18^th, 2013 at 2:08am

batch it does make sense thankyou.
nearly over the flu, so hopefully things will improve quicker with the d3 when I finally shake it.
im amazed you guys haven't heard of "man flu"
most males I know play on this affliction
far worse than child birth
much much worse than if our wives get a cold
whilst most females simply shake their head
at the mere mention of "man flu", followed by "you've just got a cold, toughen up" !!
all tongue and cheek banter. Grin

Grin

Grin

regards
colin

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TeeJ2379

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Re: d3 regime 2 weeks in
Reply #8 - Jun 18^th, 2013 at 11:37am

I'll have my initial pre-regiment lab test Tuesday - then i'm asking for another d3 test and a chem panel to check up on other items as I have read 26 pages of Batches initial d3 thread (Good stuff by the way ! Cool to watch the regiment take shape and how new information changed things). Will keep everyone posted. Glad Sean and Blacklab are having some good results - I'm feeling much better, just hope to get rid of this long shadows, but it beats the fetal position on the floor crying causing hits I was getting.

Pain is a wonderful teacher and motivator...

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blacklab

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Re: d3 regime 2 weeks in
Reply #9 - Jun 22^nd, 2013 at 1:21am

well, nearly three weeks in,
taking 20,000 d3 with loading once a week, plus mag,cal and fish oil and multi.
the last week, ive been getting 1 hit a day, generally about a 5. for the last 2 days, the've increased a bit to a 6 but ive had pain free nights for a week, then last nite a hit a 4.00 am.
frustrating, generally an imagran pill early enough helps.
am getting tested for d3 levels in about a week and a half, but thought with my flu nearly gone, the ch's would get lesser, not more. again frustrating !!!
will continue as I have been and will find out my levels soon enough.
colin
still taking 240 verapamil in the morning.

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Batch

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Re: d3 regime 2 weeks in
Reply #10 - Jun 22^nd, 2013 at 4:20am

Hey Blacklab,

Thanks for the update. Hang in there. Although most CH'ers respond to the anti-inflammatory regimen within 10 days to two weeks, several have taken up to a month to respond and a handful of chronic types have taken up to two months. I suspect your immune system is still consuming most of the vitamin D3 metabolites to fight off the flu bug.

Please keep us posted.

V/R, Batch

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

pete_batcheller

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blacklab Ex Member	Re: d3 regime 2 weeks in Reply #11 - Jun 22^nd, 2013 at 9:35am hi batch thanks for your response. I'm definitely going to persist with everything ! crossing fingers ! looking forward to getting tests in a week and a bit. regards colin
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blacklab

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Re: d3 regime 2 weeks in
Reply #12 - Jun 25^th, 2013 at 2:48am

well, after posting last, I had a shocking couple of days, that nite I had 3 hits during the nite, then woke up to, I think what you guys call a shadow ! it was more like a consistant nagging headache, which I put up with till about 2 ock in the afternoon, then took an imigran pill and it went.
but since then, the last 2 days, around 5.oo pm the signs start for about 10 minutes, then go without the need for anything to abort it. 2 great nites sleep, and things seem to be getting better. I think batch you were spot on, the flu I had was consuming all the d3 that I was taking, with it basically gone now, its looking good, touch wood !
its my 50,000 nite for the d3 tonight, and maybe, just maybe ive turned the corner.
how are you going with yours teej ?
looking forward to this week,
getting blood tests for d3 levels in 1 week.
colin

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Sean McE

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Re: d3 regime 2 weeks in
Reply #13 - Jun 25^th, 2013 at 3:28am

Hang in there Black Lab, It sounds like your path has been similar to mine these past few weeks with hopeful ups and disappointing downs. But it actually is getting better fast now-- I quit taking my nightly preventer 2 nights ago and am now on nothing but the D3 regime, I haven't had a real hit in a week now so your times coming soon. 2 to 3 months of pain and sleeplessness reduced to 3 weeks!!!!
There's a lot of people indebted to Batch including me.

Sean

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blacklab

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Re: d3 regime 2 weeks in
Reply #14 - Jun 25^th, 2013 at 3:51am

that's fantastic sean, great news
im still on the verapamil in the morning, but looking forward to the day without.
my cycle would normally finish now, but whats normal.
its definitely changed things up, and disappointing I got the flu just as I was starting the regime, but im really positive about how things are going.
I would take this cycle with the flu, over my last one anyday. I hope your progress continues sean, again, fantastic news !!!
colin

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blacklab

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Re: d3 regime 2 weeks in
Reply #15 - Jul 4^th, 2013 at 1:35am

well, started going backwards.
kept up with the d3 regime, taking 20,000iu with 50,000 once a week boost, 1200 fish oil 400 mag citrate calcium 500, and a multi. the multi has only 300 mcg in it. been on it 1 month now.
last week started getting woken up with sheering temple pain, but after a glass of water it goes, 3 times a night. then every day between 3.pm and 6.pm I was getting max kp4's some less, well now its 8-10 and the at least one of the night ones is up there as well. cant understand whats changed. tried to get melotin, but its prescription only here. im due to get my second blood test now to see what my levels are, I held off getting oxygen before I started the regime, but am considering getting it now.
tried baking soda a couple of times a day, tried halving my calcium, upping my magnesium, but no response. can I play with the fish oil tablets ? it sais you can take up to 3 1200 mg fish oil 3 times a day, can I take 3 at once at nite with all the others with my main meal ? and what about the vit A, is it an option to up that ?
the worse part of it is that my cycle is normally about a month, its now gone on well over 2 months.
I guess of real importance is get my bloods done, to compare my d3 levels after a month of being on the regime, I was 53 nmol at the start.
any suggestions would be appreciated over the interim, i'll get tests done tomorrow morning with a bit of luck, results take about 3 or 4 days..............
regards
colin

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Sean McE

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Re: d3 regime 2 weeks in
Reply #16 - Jul 4^th, 2013 at 2:24am

Blacklab, Almost nobody here seems to recommend it, but my best weapon for years has been imitrex tablets taken orally, 50 mg at bedtime to prevent the night time attacks. It takes about an hour to take affect which is just about perfect timing for the first attack and it gives me a full nights sleep which is good thing because the more tired I am the worse my headaches seem to get. Sometimes I get rebounds, most times I don't, but if the rebounds start they will get worse with each passing day it seems. Imitrex tabs are cheap compared to the shots but they don't work for everybody but imitrex and oxygen have been the only weapons I've ever needed for many years till this cycle, but the d3 helped put me back on course.
This isn't good news and I'm being a little selfish here, because "But for the Grace of God go I".

Sorry about the turnaround, I really hope it takes a turn back for the better.

Good luck, Sean

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blacklab

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Re: d3 regime 2 weeks in
Reply #17 - Jul 4^th, 2013 at 4:31am

hi sean, thanks mate,
quite ironical, but 50mg of imigran has been my only defence all along.
as long as I get in early enough, one of them is all ive needed,it takes 30 minutes to kick in and only once ive doubled up and taken two.
I took a lot of them in my previous attack, and I did get a lot of rebounds from them. I pay about $95 for 20 tablets.
the issue ive been having is a lot of shadows, a lot, and its hard to pick which ones will turn and get worse. 02 will be on my shopping list if I cant get on top of the current issues.
hopefully doctor batch can offer up some suggestions, and as mentioned, if I can get in tomorrow morning i'll get my bloods done, which might answer some questions.
glad to here alls working for you sean, I remain positive that i'll be joining you soon.
regards
colin

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Clusterman59

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Re: d3 regime 2 weeks in
Reply #18 - Jul 4^th, 2013 at 11:56am

Hey Black Lab!
Keep hangin in there!
I have been CH free basically for over 220 days and doing good... I had the same issue with a bad "Man flu" and it reduced my D3 level out of the pain free zone of 60 to 110 ng/ml to about a 55 ng/ml so that was quickly corrected by a 50,000iu loading dose and upping my dose by 5000iu until the flu was gone and got a new 25 ohd lab test as per Batch's instructions. My level was then at a normal 88 ng/ml
. Shadows and less powerful hits is in itself a great thing and is common for those starting the regimen. I hope you are one that gets a total pain free response but it sure seems to be helping you over all...Best of luck as this regimen and Batch's tireless work is a god send to so many...

« Last Edit: Jul 4^th, 2013 at 12:50pm by Clusterman59 »

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blacklab

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Re: d3 regime 2 weeks in
Reply #19 - Jul 10^th, 2013 at 12:47am

thanks clusterman59,
well, an update. got my blood test back on vit d3 level. it was exactly 5 weeks from the first initial blood test when I started the regime.
1st test 53 nmol......5 weeks today, 194 nmol
so I guess im there. ide been taking the whole regime, my d3 doses were 15000 d3 first week with 50,000 dose up once a week,from then on it was 20,000 per day with the 50,000 once a week dose up. taking into account that I had a bad flu for the first 2-2 1/2 weeks probably explains the length of time it took to get my levels up.
i'de been struggling with big shadows, as previously mentioned and for about 2 weeks now, I wake with one around kp 3-4. this morning I woke pain free yahoo
consistently between 3.00pm and 6.00pm in the afternoon is when I get hit with my worst one, yesterdays one was considerably less. im hoping that now im at the correct vit d3 level symptoms will improve. note; my last cycle around xmas, my first real cycle, involved 4-5 hits a day all kip 8-10, for 4-5 weeks.
my cycle is due to finish now, so the big answer will be if I continue with the regime, probably drop the vit d3 to 15000, with no big once a week dose up, and wait to see what happens in 2-3 months when as a rule it normally the beast pops his head up. prior to this cycle and starting the vit regime, my neuro put me on 240mg verapamil daily, and ive been on them for 3 months pryor to this cycle, b4 when I started, I would take prednisone and commence verapamil at the same time. so this cycle has gone on longer than any other, but ive had verapamil built up in my system pryor to the cycle starting AND ive gone on the vit regime during the cycle, its definitely been less intense, so I now have to ween off the verapamil and wait, im really hoping that the less intensity was due to the vit regime and as happened to so many of you, the next cycle will be a non event or pain free !!!! not that I would wish it on anyone, because I couldn't begin to comprehend what it would be like to be chronic, but I think it would be quicker to know if the regime was definitely working if you were chronic, but being episodic, and the cycle naturally finishing leaves you hanging for a few months to confirm that indeed the vit d3 really works for you.
anyway, im remaining confident and am 100% continuing with the regime and I remain 100% positive.
as a footnote, my doctor actually tested my cholesterol as well on my first blood test and she said it wasn't high but needed to be looked at, I showed her the vt d3 regime that I was going to be on and she said, well theres no need for me to prescribe anything extra for your cholesterol, the fish oil and magnesium will do just fine.
so it seems there are many health bennifits to this regime.
thankyou for everyones input and help.
regards
colin

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Clusterman59

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Re: d3 regime 2 weeks in
Reply #20 - Jul 11^th, 2013 at 11:45am

Hey Colin..
It is a classic sign to have less powerful hits and less frequency also more shadows than actual hits. Yes you are in the proper range at a 194 nmol as that is around an 80 ng/ml. It is a great regimen CH or not and would be well worth the small price daily to remain on the regimen year round and hey! You my not even go into cycle next time around so it is a good thing to do year round and the health benefits are wonderful...Best of luck...John...

« Last Edit: Jul 11^th, 2013 at 11:49am by Clusterman59 »

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Batch

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Re: d3 regime 2 weeks in
Reply #21 - Jul 12^th, 2013 at 1:05am

Blacklab.

Sorry you're still having house calls by the beast...

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We know what a difficult time this bad actor can cause...

As John pointed out 194 nmol/L 25(OH)D works out to around 77.4 ng/mL using the conversion factor of 2.5 nmol/L to 1 ng/mL, so you're a long way from the "toxic" level of 25(OH)D at 200 ng/mL, (500 nmol/L). Accordingly, staying the course with your present vitamin D3 dosing schedule is a good idea.

Regarding the vitamin A... I take Centrum Silver... or the Safeway brand Century Senior 50+ Formula to get my vitamin A and vitamin K.

Vitamin A is an essential element in the autocrine/paracrine path of vitamin D3 metabolism that supports genetic expression...

In simple terms, vitamin A works with vitamin
D3 to trigger a genetic response (expression) to lower CGRP. That's a peptide produced in nerve tissues that triggers vasodilation and inflammation...

CGRP has been implicated in the cluster headache and migraine pathogenesis as it is elevated during CH and migraine attacks. It can also be lowered by the administration of 100% oxygen and sumatriptan succinate.

Accordingly, as the active vitamin D3 metabolite, 1,25(OH)2D3, (calcitriol) has the capacity to down-regulate/suppress the production of CGRP and this is the mechanism of action we think is responsible for the CH and migraine preventative effect made possible by the anti-inflammatory regimen.

The take away... get a multi-vitamin containing vitamin A.

If you're still taking magnesium oxide, it's best to pick up some magnesium malate, magnesium glycinate or magnesium citrate as they have a bioavailability of 80% to 90% where magnesium oxide is down around 4 to 5% bioavailability. 400 mg/day magnesium should be sufficient.

Take care and please keep us posted,

V/R, Batch

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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blacklab

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Re: d3 regime 2 weeks in
Reply #22 - Jul 12^th, 2013 at 1:27am

thanks for your responses guys.
batch, im on both calcium and magnesium citrate, the new bottle I got of magnesium is 225 mg, so for these ones i'll be taking 450mg a day.
im definitely staying with the regime, the doctor wants me to check my cholesterol in a couple of months, so i'll be again checking my d3 levels at the same time, to see if 15000 d3 is enough to maintain my level of around 194 nmol and it will be a month or so before I would expect the beast to rear its ugly head again !!
BY THE WAY, NO LATE AFTERNOON HIT YESTERDAY, so I can officially now say " pain free for 1 day.
im really looking forward to when my next cycle would or should appear, to compare the difference of now being all juiced up with the d3 regime !
and you are 100% right john, this last cycle was less intense and a whole lot more shadows and it went a few weeks longer than before, that has to be the influence of the regime. I think when your in the ch cycle, its the horrible anticipation you go through of when and how strong will the next hit be ! but now with it gone its easier to overview it and compare with previous cycles.
thankyou to all for continual feedback and supportive comments during the process and especially to batch for your tireless efforts in helping other sufferers.
looking forward to the next few months to see how successful it is for me
regards
colin

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Clusterman59

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Re: d3 regime 2 weeks in
Reply #23 - Jul 12^th, 2013 at 10:39am

Hey Colin!
Yeah...What Batch said! haha! He does a wonderful job explaining things with this regimen even with the technical stuff he makes it understandable so we can do it right.
That's great news that you seem to be getting the classical signs that it is starting to work for you. So I will say best of luck and do enjoy that pain free time!....John...

« Last Edit: Jul 12^th, 2013 at 10:40am by Clusterman59 »

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blacklab

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Re: d3 regime 2 weeks in
Reply #24 - Jul 21^st, 2013 at 2:44am

well, nearly 10 days pain free !!
had 2 small shadows when I woke up on consecutive mornings, then the following day my regular 3.00pm-6.00 pm reared its head, but disappeared after a red bull, but was quite a big shadow. nothing since then, little tingles every now and then, but they don't get any worse.
so, im weaning off my verapamil tomorrow, cutting my 240mg in half for a week, then again in half for another week, then off them.
I have another blood test in 6 or 8 weeks to check on my cholesterol level as doc said she wanted to monitor it.so im getting my d levels and calcium levels checked as well, which will tell me how good my body is maintaining its d levels.
so ive now dropped to 10,000 vit d with calcium, magnesium, fish oil and multi remaining the same.
just stocked up with another 3 months supply of the regime, so hopefully, I don't come into cluster cycle again, but I can only just wait and see what happens in a few months or so.
but for now, pain free yahoo
regards
colin

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