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123 Days PF And I Think I know Why (Read 532521 times)
thierry
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Re: 123 Days PF And I Think I know Why
Reply #2275 - Sep 25th, 2015 at 1:56pm
 
Hi Emma, hope you had a good day.
So what supplements have you got?
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thierry
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Re: 123 Days PF And I Think I know Why
Reply #2276 - Sep 27th, 2015 at 2:53am
 
Hi Emma,
when i foud this site i felt like i had arrived home. For the first time i was chatting to people that knew what i felt, knew of the pain and cared and wanted to help. To this day I am grateful for the messages of hope and understanding that I received. Also I was lucky to stumble upon Batch and the D3 regimen he has come up with.
If you were to find out more about the D3 regimen and start asking all the questions probably going around your head about it, you could be pain free (PF) fairly soon. The D3 regimen is working for me, i take it just as suggested by Batch.
I used to get 1 cycle in spring that could last 3 months and 1 cycle in end autumn/start winter for also about 3 months. During these cycles I used to get hit every night religiously about 45 minutes after I'd fall asleep. I used to have to put my life on hold, the CH was affecting all aspects of my life, and those around me.
There is a strong possibility that the D3 regimen can work for you too. It is efficient for more than 80% of people who take it.
The O2 is great for aborting attacks when you're at home or where ever you have your tanks with you.
If your neuro is making it difficult to give you O2, you could mention that you know people with CH that successfully use it and that the neuro in UHG is giving it to his CH patients. It is poven in research that O2 works  and is widely used to relieve CH.
All the best
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« Last Edit: Sep 27th, 2015 at 3:20am by thierry »  
 
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Emma marie h
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Re: 123 Days PF And I Think I know Why
Reply #2277 - Sep 27th, 2015 at 7:54pm
 
Hi Thierry Smiley
Hope you had a good day Smiley
Thank you again for talking me through this.Everyone has been so amazing. I honestly cant describe how it feels to be able to talk honestly about whats happening to me with someone who not only understands exactly how it feels but wont judge me or make me feel like i am over reacting Smiley I love this website,thank god for the person who created it Smiley
At my appointment in the morning I will mention that I now know you and peter and ye are both being prescribed 02 Smiley.I have kept a detailed diary of my headaches since February( I am now up to 3 a night Angry like you it starts around an hour after I fall asleep and with an energetic  toddler who is rearing to go first thing every morning its becoming impossible to function Sad )  so hopefully that will help. I will also push for the Vit D test.Did you have one before beginning the regimen?I have all the supplements from the list except the vitamin K,I will buy it next week.I was only able to find 2500iu vit D.I plan to buy them all online next month,hopefully save some money.The health shops are ridiculously expensive. Also what times during the day do you suggest taking each of the supplements?
Thank you so much again Thierry Smiley
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Re: 123 Days PF And I Think I know Why
Reply #2278 - Sep 27th, 2015 at 11:26pm
 
Wonderful that things are going well for you Emma.

We all know what it is like to be part of a community that gets what it is like to have CH and that we don't have to explain a thing, unlike when talking to those who don't have CH.

For your appointment, write a list of all your questions and tick them off as you ask them. It is so easy to forget something and then remember when the appointment is over.

Most people take the D3 with their main meal as the vitamin is fat soluble, so it will be absorbed best then.
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thierry
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Re: 123 Days PF And I Think I know Why
Reply #2279 - Sep 28th, 2015 at 12:14pm
 
Hi Emma,

Hope you got on well today with your doc  Smiley


Like all my supplements, i get the K from iherb.com
below is a link to it

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This vit K is the one Batch recommends. 1/day.

If you are buying on iherb.com  , you can choose a postage option called "Airmail" that allows you a maximum of 4lbs weight and max €71, this is the best option as it doesn't get checked by Irish custom for import duties (so far for me anyway  Smiley). Postage options will appear during the checkout process.

Below are a few of the supplements you could get from iherb.com

Below is a multi vitamin that takes care of a few supplements that are included in Batch's D3 regimen

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It contains the Vit  A, the zinc and the Boron as well a lots of B vitamins and folic acid which are also recommended when starting up on the regimen.
1 tablet daily

Then other supplements to complete the regimen:


MAGNESIUM:

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2 tablets/day, = 400mg

CALCIUM:

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2 capsules/day, = 400mg

There is calcium and magnesium in the multi but in small amounts so in my opinion it is OK to take 400mg of each as part of the regimen.

VIT D3

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At 10000iu per softgel, just 1/day will probabaly do when not in "loading" mode.

FISH OIL:

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This is the one Batch recommends and takes himself. 2/day

This is it for the regimen but if you get shadows and/or attacks in spring when the sun starts warming up the isle and pollens flow around us, talk to Batch, he's got an idea of why that happens and ways to help.

I think Batch also recommended a good microbiotic to sort out our intestinal flora and PH levels. Here in Ireland we have a very good one in health food stores called "super8" by UDO'S CHOICE, thing is it's quite expensive. I have been taking this since the start of 2015 (2 months on, 1 month off) and have noticed that the shadows i still occasionaly get in spring for a couple of weeks did not really appear this year.

I have found the ordering process easy at iherb.com and the postage costs, very reasonable.
Also their prices are so so much cheaper than in our local health food shops.
The parcel usually arrives 10 days to 2 weeks after ordering when choosing the postage option mentioned above.
I once chose a different option for postage and i got caught for import taxes from our customs dept.
Any questions, just ask.
All the best
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« Last Edit: Sep 28th, 2015 at 1:30pm by thierry »  
 
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Emma marie h
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Re: 123 Days PF And I Think I know Why
Reply #2280 - Sep 28th, 2015 at 2:51pm
 
Hi Thierry,
Thank you for the links and the tip on postage. Peter recommended that website to me also. I am so happy that the supplements can be bought at a more reasonable price Smiley
My appointment was horrible.I am so miserable since I left the hospital,feeling a bit defeated and sorry for myself.
I will write a post on the help getting 02 page.
Thanks again Thierry Smiley
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Re: 123 Days PF And I Think I know Why
Reply #2281 - Sep 28th, 2015 at 6:01pm
 
Hi Thierry,
Quick question about the Vit D regimen.
Its about the natures way alive multi vitamin.Should I be taking the vit b50 along with that or does it have the b vits I need in it already?
Thanks Smiley
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2282 - Sep 28th, 2015 at 6:35pm
 
Emma Marie,

The rationale for the 3-month course of vitamin B 50 is to address any possible deficiencies among the seven B vitamins...  This usually requires a loading dose hence the vitamin B 50 which provides more than needed in a maintenance dose.

The multi vitamin likely contains what we call a maintenance dose, i.e., just enough to keep the seven B vitamins at the desired level.

Sorry you had such a rough time at your medical appointment...

Take care,

V/R, Batch
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thierry
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Re: 123 Days PF And I Think I know Why
Reply #2283 - Sep 29th, 2015 at 11:37am
 
Hi Emma, like Batch said, the multi vitamin would just cover a daily top up of B vitamins.
It may be that you will have to not take the multivitamin and instead, for now, take the vit A, zinc and boron seperately. Then when you will have done the 3 months of B50, you could take the multi vitamin and stop taking the Vit A, zinc and boron seperately.
I am not sure if it would be ok to take the multi vitamin as well as the B50 for the first 3 months, maybe Batch can throw some light on this.

Here's a vit A on iherb

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each tablet is 5000iu, so take half

ZINC

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1 a day.

BORON

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1 a day.

Here is a B50 on iherb

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1 a day.

anything else, just ask.  Smiley

All the best
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« Last Edit: Sep 30th, 2015 at 5:20am by thierry »  
 
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Re: 123 Days PF And I Think I know Why
Reply #2284 - Sep 29th, 2015 at 3:04pm
 
Batch, et al:

After being pain-free since early March (episodic), I got hit with a few night and mornings hits yesterday out of nowhere with zero warning.  Hoping they're just some rogue hits and not another cycle.

Here's my current regimen:

D3 15,000 IU - Nature's Bounty

Fish Oil 2400 mg - Kirkland

MgCO3 500 mg  - NOW Foods (was using Kirkland but it seems to be discontinued)

Vitamin C 1000 mg - Kirkland

Mature Multi Vitamin - Kirkland

Zinc 15 mg - Nature Made Vitamelts

Super K with Advanced K2 Complex - Life Extension


Back on Sept 12, I started taking a loading dose of 200,000 IU D3 (50,000 IU on Days 1-2 & 25,000 IU on Days 3-6) because I felt some shadows.

Also took B-50 Complex for 90 days from 2/3 through 5/2. 


I've schedule an appointment to get a 25(OH)D test next week but in the meantime, any tips?

Should I start B-50 again?

Do I take another 200,000 IU loading does even though it's been less than 2 weeks since my last one?



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« Last Edit: Sep 29th, 2015 at 3:07pm by slacker032 »  
 
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Peter510
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Re: 123 Days PF And I Think I know Why
Reply #2285 - Sep 30th, 2015 at 4:58am
 
Hi Slacker,

Try taking 50mg of Benadryl at night for a few nights. You may have some small sub-clinical infection that you are unaware of.

Peter.
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Re: 123 Days PF And I Think I know Why
Reply #2286 - Sep 30th, 2015 at 7:02am
 
Peter510 wrote on Sep 30th, 2015 at 4:58am:
Hi Slacker,

Try taking 50mg of Benadryl at night for a few nights. You may have some small sub-clinical infection that you are unaware of.

Peter.


Hey Peter,

What would Benadryl do for the infection?
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Re: 123 Days PF And I Think I know Why
Reply #2287 - Sep 30th, 2015 at 7:31am
 
you could have Allergies that will give you problems with ch.

Mark
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Re: 123 Days PF And I Think I know Why
Reply #2288 - Sep 30th, 2015 at 10:21am
 
Maybe I'll give Benadryl a shot.  Can I use it with melatonin?
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Peter510
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Re: 123 Days PF And I Think I know Why
Reply #2289 - Sep 30th, 2015 at 11:56am
 
Slacker,
Benadryl is an antihystamin and can be used with Melatonin. The reason I use it at night is because it can make you a bit drowsey, which is no harm if you're looking for a good night's sleep anyway.


Peter.
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Re: 123 Days PF And I Think I know Why
Reply #2290 - Sep 30th, 2015 at 1:22pm
 
Peter510 wrote on Sep 30th, 2015 at 11:56am:
Slacker,
Benadryl is an antihystamin and can be used with Melatonin. The reason I use it at night is because it can make you a bit drowsey, which is no harm if you're looking for a good night's sleep anyway.


Peter.


Getting to sleep isn't the problem for me though.  It's the hits that wake me up.
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Peter510
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Re: 123 Days PF And I Think I know Why
Reply #2291 - Sep 30th, 2015 at 1:35pm
 
Slacker,

Hopefully it will help to keep the hits away and if you take it in the morning you may feel drowsey during the day, so working or driving could be dangerous.

Peter.
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thierry
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Re: 123 Days PF And I Think I know Why
Reply #2292 - Sep 30th, 2015 at 1:41pm
 
Hey Slacker, been reading your posts above. It seems that you are doing everything right as regards the regimen, the loading doses you're doing should have done the trick i think.
There is one thing that i read here somewhere that has shown to improve my twice early shadows, i read somewhere here that a good probiotic helps the gut be more receptive to the D3 regimen and regulate digestion. So i've been taking a high potency probiotic since the start of the year and the shadows i usually get in spring and autumn have not showed up this year. Maybe that can help you too. I am no expert, just reporting my personal experience even though I am not making a definite conclusion that the probiotic is the reason for the lowering in quantity and severity of usually occuring shadows.
All the best
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Re: 123 Days PF And I Think I know Why
Reply #2293 - Sep 30th, 2015 at 2:03pm
 
Slacker,

Sorry the CH beast made a house call after a pleasant absence... I'm with Peter and Thierry... Starting a good probiotic and Benadryl (Diphenhydramine) is a good course of action at this point.  I take the Kirkland brand "Allergy Medicine" from Costco if I suspect an allergy is booting me out of remission while on a maintenance dose of vitamin D3.

I had to take Benadryl this last March when alder and maple pollen were blowing around like a dust storm and the beast jumped ugly on me at a maintenance dose of 10,000 IU/day vitamin D3 that normally kept me CH pain free.

The rationale for a CH'er taking Benadryl with the anti-inflammatory regimen is interesting to downright fascinating...  Here are a few factoids and a theory to make my point.

1) The CH syndrome involves neurogenic inflammation and pain... (nothing new there)...

2) The neurogenic inflammation and pain associated with CH are the result of substance P and calcitonin gene-related peptide (CGRP) being released by neurons in the hypothalamus and trigeminal ganglia...  Several studies have found serum CGRP levels elevated during the pain phase of cluster and migraine headaches...

3) The leading theory on the mechanism of action by which the anti-inflammatory regimen prevents CH is associated with genetic expression. 

This is where vitamin D3 and 25(OH)D3 enter the nuclei of target neurons located in the hypothalamus and trigeminal ganglia where enzymes hydroxylate (metabolize) them to the active vitamin D3 metabolite 1,25(OH)2D3.  1,25(OH)D in turn merges with retinoic acid (vitamin A) to form a new molecule that attaches to a vitamin D3 response element (VDRE) on target genes within these neurons.  This results in genetic expression that down regulates/suppresses the production of substance P and CGRP within these neurons as illustrated in the following graphic.

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4) Allergic reactions (caused by a wide variety of allergens) trigger an immune response that results in the release of histamines.

5) The term ‘neurogenic inflammation’ has been adopted to describe the local release of inflammatory mediators, such as substance P and CGRP from neurons.

Once released, these neuropeptides induce the release of histamine from adjacent mast cells.  In turn, histamine evokes the release of substance P and calcitonin gene-related peptide; thus, a bidirectional link between histamine and neuropeptides in neurogenic inflammation is established. 

For CH’ers, this bidirectional link between histamine and neuropeptides in neurogenic inflammation represents a self-sustaining circular chain reaction and vicious cycle resulting in horrible and in many cases, unstoppable CH pain.

6) If histamines are released as a result of an allergic reaction, it triggers the circular chain reaction with a vicious cycle of CH...

7) If we treat the allergic reaction with Benadryl (Diphenhydramine), a first-generation anti-histamine that passes through the blood brain barrier to block histamine H1 receptors on neurons within the hypothalamus and trigeminal ganglia, we break the circular chain reaction and vicious cycle...

Sooo... after all that... taking a 25 mg tablet of Benadryl (Diphenhydramine) twice a day (AM and PM) can stop the allergic reactions and in the process, help the anti-inflammatory regimen prevent CH... 

Benadryl is also a CNS depressant and you will get drowsy... Don't drive if you need to take it.  If you do need to drive, Peter's suggestion to take 50 mg of Benadryl after you've driven home for the day is a good idea...

Hope this helps...  It's a lot to digest... However, if you buy into this line of thinking, it answers a lot of questions why cluster headache occur like they do...

Take care and please keep us posted,

V/R, Batch
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« Last Edit: Sep 30th, 2015 at 5:11pm by Batch »  

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Re: 123 Days PF And I Think I know Why
Reply #2294 - Oct 1st, 2015 at 4:25pm
 
Batch, thierry, Peter, MDR -

Thanks for the info.  I'll give Benadryl a shot. 

If I want to take 50 mg at night since I have to work and drive during the day, what time do you guys suggest I take the Benadryl? 

Right after dinner which is when I take the rest of the regimen?

I also take 15 mg of melatonin before bed (10 mg controlled release at 10:30 PM, 5 mg regular at 11:30 PM).


As far as probiotics go, I have a smoothie for lunch everyday with this meal replacement powder:

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and it contains these probiotics:

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Good enough or do you think I should opt for a dedicated probiotic supplement?
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Re: 123 Days PF And I Think I know Why
Reply #2295 - Oct 1st, 2015 at 4:46pm
 
Slacker,
I take mine no later than 10:00 p.m.

The brand of probiotic I take is Yakult. Can't help you beyond that, sorry.

Keep well,

Peter.
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Re: 123 Days PF And I Think I know Why
Reply #2296 - Oct 1st, 2015 at 6:58pm
 
slacker032 wrote on Oct 1st, 2015 at 4:25pm:
I'll give Benadryl a shot. 

If I want to take 50 mg at night since I have to work and drive during the day, what time do you guys suggest I take the Benadryl? 

Right after dinner which is when I take the rest of the regimen?



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Quote:
Pharmacokinetics: Following oral administration diphenhydramine is well absorbed from the gastrointestinal tract, is widely distributed throughout the body, and is able to pass though the blood-brain barrier. The oral availability is 61%, and 78% is bound in plasma. Peak plasma concentrations are reached in 2-3 hours. Diphenhydramine is metabolized to nordiphenhydramine (active metabolite), dinordiphenhydramine, and diphenylmethoxyacetic acid. The plasma half-life is 8.5±3.2 hours; shorter and longer half-lives have been reported for children and elderly subjects, respectively. Urinary excretion of unchanged diphenhydramine is 1.9%.

Interpretation of Blood Concentrations: Following a single oral dose of 50 mg, average peak plasma concentrations of 83 ng/mL diphenhydramine were detected at 3 hours, declining to 9 ng/mL by 24 hours. A single oral 100 mg dose resulted in average peak plasma concentrations of 112 ng/mL at 2 hours post dose. Effective antihistamine concentrations are greater than 25 ng/mL, drowsiness can be observed at 30-40 ng/mL, and mental impairment may be observed with concentrations above 60 ng/mL.



Now translating this into English...

The drug will reach it's maximum availability in your bloodstream after about 3 hours, with it dropping by half after about 8 hours and to a quarter by 16 hours.

So you need to take it at least 3 hours before you need it to be effective, which will give it time to be absorbed and to get into your bloodstream.

Assuming a 100mg dose, this will give a concentration of 112 (ignore the units for now), which will drop to about 55 after 8 hours and 28 after 16 hours. Since a concentration of 30-40 can cause drowsiness, this could impact you between about 10 and 16 hours after you take it.

However it also says:
Quote:
Duration of Effects: Dose-dependent, however, following oral administration of therapeutic doses, peak plasma concentrations are reached in 2-3 hours and effects usually last 4-6 hours.


Based on all of this, taking it with dinner is likely to be a reasonable time to balance out it being effective and limiting drowsiness. So I'd use that as a starting point and then adjust based on what works best for you to maximize the effectiveness whilst limiting drowsiness.
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Re: 123 Days PF And I Think I know Why
Reply #2297 - Oct 1st, 2015 at 7:54pm
 
Great stuff, Mike. Thank you.

And thanks, Peter.  I'll give Yakult a look.
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Re: 123 Days PF And I Think I know Why
Reply #2298 - Oct 4th, 2015 at 12:04pm
 
A little update:

So I started 50 mg of Benadryl on 10/1 along with the melatonin I've been taking.  Took both tablets of Benadryl at 9PM, 10 mg of controlled release melatonin at 10PM and 5 mg of regular melatonin at 11PM.  Also boosted D3 to 20,000 IU.  Got hit with a KIP 5 at 6:12 AM.

On 10/2, I decided to split the Benadryl doses.  Took 25 mg at 9PM and the other 25 mg at 10PM.  Also took 10 mg of controlled release melatonin at 11PM and 5 mg of regular melatonin at 12AM.  KIP 6 at 1:18AM and another KIP 6 at 5:26AM.

On 10/3, I went back to taking all 50 mg of Benadryl at 10PM along with 10 mg of controlled release melatonin at 11PM and 5 mg of regular melatonin at 12AM.  KIP 5 at 1:42AM, KIP 6 at 4:24AM and KIP 7 at 7:57 AM this morning.

Also added a probiotic supplement that I take with dinner. 

So I seem to be ramping up.  Not sure if I should stop taking the Benadryl or keep at it. 

Getting a little desperate here and considering another 200,000 IU loading dose but wondering if that's a good idea since I already took a loading dose 3 weeks ago.  I still have a 25(OH)D test scheduled for this Friday.
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« Last Edit: Oct 4th, 2015 at 12:07pm by slacker032 »  
 
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Re: 123 Days PF And I Think I know Why
Reply #2299 - Oct 4th, 2015 at 4:20pm
 
Slacker,

Sorry you're having a rough time.  Are you taking all of the vitamin D3 cofactors including:  400 mg/day magnesium, a good mature multi with at least 12 mg/day zinc, a trace of boron, and vitamin A (retinol)? 

Have you gone to your PCP for the 25(OH)D lab test? If so, what was your serum concentration of 25(OH)D.  Without knowing your 25(OH)D serum concentration, we're shooting in the dark at what to do next.

If your 25(OH)D is not up around 80 ng/mL, a higher vitamin D3 daily intake may help.

If your 25(OH)D serum concentration is ≥ 80 ng/mL, there's likely another reason or reasons while you're still getting hit... 

When was your last annual physical exam?  What other health problems are you dealing with and if you're treating them, what other medications are you taking?

A low arterial pH (too much acid) can override vitamin D3's capacity to prevent CH...  We're not talking much of a downward shift in pH.  The simple way to test if a low pH is your problem is to drink a baking soda tonic for a couple days.

A half teaspoon of Arm & Hammer Baking Soda in a half glass of water 4 times a day, an hour after eating and right before bed.  If your CH symptoms subside, a longer term fix is to eat an alkaline diet.

See:

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and my favorite...

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V/R, Batch


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« Last Edit: Oct 4th, 2015 at 4:21pm by 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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