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123 Days PF And I Think I know Why (Read 208175 times)
Oxygen Worshipper
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Re: 123 Days PF And I Think I know Why
Reply #2625 - Sep 14th, 2019 at 7:38pm
 
I admire your efforts and taking the time to share.  Thank you.

One thing that threw me off in your posting was the comment about Margaritas.  When I'm in an episodic cluster, alcohol almost always sparks a CH.  I thought that was the same for all CH sufferers. 

Not you?
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AussieBrian
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Re: 123 Days PF And I Think I know Why
Reply #2626 - Sep 14th, 2019 at 10:35pm
 
Oxygen Worshipper wrote on Sep 14th, 2019 at 7:38pm:
...alcohol almost always sparks a CH.† I thought that was the same for all CH sufferers.†

G'day,† Worshipper,† and welcome aboard the good ship ch.com.

In truth there's a very limited few of us who can drink alcohol right through a cycle with no ill effect at all but we tend to stay a bit quiet about it to avoid the hate mail from others.

Other people have no identifiable triggers at all and I truly doubt any two of us are the same so it's all just part of the adventure of CH.

Are you trying the D3 regimen?† Many people have had great success with it.




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My name is Brian. I'm a ClusterHead and I'm here to help. Email me†anytime at briandinkum@yahoo.com
 
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Re: 123 Days PF And I Think I know Why
Reply #2627 - Sep 15th, 2019 at 9:12pm
 
Hi and welcome Oxygen Worshiper

I think there are quite a few of us who are in awe of what oxygen can do to a CH.

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I'm one for whom alcohol doesn't trigger a CH, although it can be a migraine trigger for me, so I'm only half "immune".

I'll second Brian's suggestion about D3, it ranks up there with O2 for how amazing it can be.

Tell use more about your CH and we'll see what we can suggest.
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2628 - Sep 16th, 2019 at 2:52am
 
Hey Nik,

I missed your post last week. The following chart illustrates the 30 day response rate.† As you can see, some CHers experience a significant drop in the frequency of their CH after the first or second dose. 80% of CHers who start this regimen experience this significant response or better yet a pain free response in the first 30 days.†

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The most of the remaining 18% who didn't respond in the first 30 days, usually do so with higher maintenance doses of 15,000 to 25,000 IU/day.

The two month figure for a response comes into play if you don't do the 12-Day accelerated vitamin D3 loading schedule as that's how long it could take to reach a 25(OH)D3 therapeutic serum concentration without loading

Take care and please keep us posted.

V/R, Batch

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Re: 123 Days PF And I Think I know Why
Reply #2629 - Feb 10th, 2020 at 1:45pm
 
UP UP so new people can find this

Mark
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Re: 123 Days PF And I Think I know Why
Reply #2630 - Feb 25th, 2020 at 3:02am
 
Batch,

It has been many, many months since I have lurked here on CH.com.  The reason is that I rarely even think about CH any more.  I have been on the regimen for a couple of years now, keeping my D3 levels right around 100ng/ml.  While I still know when I have an episode due to some shadows and a few very minor headaches, my life has been pretty much back to normal.  I avoid alcohol during my CH windows, since they still will trigger headaches, but that is a small price to pay to be essentially pain free.

So thank you Batch.  You have completely changed my life.

Mark  Smiley
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2631 - Feb 25th, 2020 at 4:46am
 
Hey Mark,

Thank you for the kind words.† They mean a lot to me.

One of the major findings over the last few years has been the impact of allergic reactions on the frequency, severity and duration of CH.† In short, the histamine released during an allergic reaction to a CHer is like Kryptonite to Superman...† bad news.†

Moreover an allergic reaction can flip a CHer out of a long period of remission even with a 25(OH)D3 serum concentration over 150 ng/mL.† That has happened to me at least twice.† Fortunately, the solution is to start loading vitamin D3 at 50,000 IU/day and to start a week to 10-day course of a first-generation antihistamine like Benadryl† (Diphenhydramine HCL) at 25 mg every four hours.† It's usually taken 4 to 5 days to get back to a completely CH pain free state so I can drop back to my usual maintenance dose of vitamin D3.

I have a section on this problem in the revised version of the treatment protocol I hope to have ready to post soon.

Thank you again for the kind words and take care.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #2632 - Mar 27th, 2020 at 5:48pm
 
Just an update on well the D3 program works. I haven't been able to post for a long time as the site won't recognize my name or password and won't let me create a new one with my present email address. I finally gave up and used the "woman who must be obeyed's" email address to create a new account. They came early this year, first week of February and as I wasn't on the program I had to ramp up.  6 days @ 50000 D3 along with the cofactors and then dropped to 20000 and then to 15000 a day. After starting I relied on O2  for a week but one week in and I didn't even need that. My cycle is stlll on (occasional shadows) but life is good, PF, all I can say is Thank you Batch.   Sean

As I'm in the Seattle area we holed up 3 weeks ago, been out once to pick up a script for mama. We fortunately had the foresight to see this coming and what necessities we needed we took care of back in February. Venison and fish are gonna be on the menu for awhile!
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Re: 123 Days PF And I Think I know Why
Reply #2633 - Apr 9th, 2020 at 2:37am
 
Hi Batch, I've been reading vitamin D2 stays in your system for around 3 days, but vitamin D3 can last up to 3 weeks. So, by taking 50,000iu of BIOTECH D3-50 every week, can't that, build up from 7,142iu/day, to 21,426iu/day?

Cheers Hoppy
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« Last Edit: Apr 9th, 2020 at 4:09am by Hoppy »  

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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2634 - Apr 9th, 2020 at 6:47am
 
Hey Hoppy,

Good question.† Taking one D3-50/week works out to an average of 7,100 IU/day. A number of studies found little difference in 25(OH)D3 response to either daily doses of 10,000 IU/day or weekly dosing at 70,000 IU once a week.

A number of us have found the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 has a higher bioequivalence in elevating serum 25(OH)D3 than the same dose of the oil-based liquid softgel vitamin D3 formulations.

No matter the vitamin D3 dose, the time course 25(OH)D3 serum concentration curves all follow the same pattern eventually leveling off as illustrated in the following graphic from a study by Dr. Robert Heaney, MD.

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The reason 25(OH)D3 levels off and doesn't continue to rise is due to a function of calcium homeostasis where cells start expressing 24-Hydroxylase vitamin D3.† Calcium homeostaysis is a complex set of mechanisms that control serum calcium concentrations and keep them in a very narrow range.

The 24-Hydorxylase enzyme adds a hydroxyl group [OH] to the 24th position on the vitamin D3 molecule and its metabolites resulting in 24-Hydroxy vitamin D3 a.k.a., 24(OH)D3, 24,25(OH)2D3 and in a few cases 1,24,25(OH)3D3.

The interesting thing about 24-Hdroxylation is these 24-Hydroxylated vitamin D3 metabolites break down rapidly and are either filtered out by the kidneys and dumped over the side in urine or they're filtered by the liver and passed through the GI tract.†

Ultimately, the level of 24-Hydroxylation consumes equal amounts of vitamin D3 taken causing an equilibrium in 25(OH)D3, i.e., flattening of the serum concentration curve as illustrated in the above chart.

An example of the higher D3-50 bioequivalence follows.† 10,000 IU/day (70,000 IU/week) of the oil-based liquid softgel vitamin D3 results in a mean 25(OH)D3 response of 80 ng/mL while 50,000 IU/week of the Bio-Tech D3-50 results in a mean 25(OH)D3 response of 80 ng/mL.†

Here is where the boron in the Kirkland Adult 50+ Mature Multi comes into play.† Boron down-regulates the genes that express 24-Hydroxylase.† Less 24-Hydroxylase means a higher 25(OH)D3 response.† The 150 Ķg of boron in the Mature Multi is worth an additional 3 to 5 ng/mL response taking one Bio-Tech D3-50 a week.† However, if you take 3 mg/day boron with the one Bio-Tech D3-50 a week, the 25(OH)D3 response nearly doubles to 150 ng/mL.

The following chart illustrates lab results of my serum 25(OH(D3, calcium and PTH over the last three years.

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My PCP is very familiar with my vitamin D3 intake and 25(OH)D3 response and has no problem with my 25(OH)D3 this high as long as my serum calcium remains within its normal reference range. As you can see it has.

The other thing to note is I've been taking the Bio-Tech D3-50 at one a week since January of 2019.† I've also taken 3 mg Boron at least once a week along with the rest of this regimen daily.† As you can see my 25(OH)D3 response has been steady at 150 ng/mL.

I've updated the supplements to include the Methyl Folate + (B complex) in place of the vitamin B 50/100 complex.† Rationale: The methylated forms of vitamin B have a higher bioequivalence.† I've found this combination gets me through the heavy pollen season without needing to increase my vitamin D3 intake.

Finally make sure you add 3 grams/day vitamin C (1g three times a day) and 30 to 50 mg/day zinc as this is the best immune-boosting strategy we can take to help fight off SARS-C0V-2 virus and the COVID-19 infection.† Adding Resveratrol or better yet, the Resveratrol analog, Pterostilbene.† It helps zinc enter cells to stop the SARS-C0V-2 virus from replicating.

See my Coronavirus PSA thread for more details.

Take care and please keep us posted.

V/R, Batch

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« Last Edit: Apr 9th, 2020 at 6:51am by Batch »  

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Re: 123 Days PF And I Think I know Why
Reply #2635 - Apr 9th, 2020 at 9:41pm
 
Hi Batch, thanks for clearing that up for me. So, by just taking the boron that's in the Kirkland Mature Multi/day, I should stay around the 80ng/mL mark?

Cheers Hoppy
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Re: 123 Days PF And I Think I know Why
Reply #2636 - Apr 10th, 2020 at 1:21am
 
Hoppy,

It sure looks that way from the labs sent by CHers taking this regimen since they switched to the Bio-Tech D3-50 and continued taking the Mature Multi.† 25(OH)D3 data from the online survey for 2019 looks the same.

The real welcome changes in efficacy are the 30-day response rates for significant reduction and pain free.† The year over year mean for significant reduction has 80% of participants experiencing a drop from 21 CH/week down to 4 CH/week in the first 30 days after start of regimen.† For 2019 the rate was over 90% of CHers responding.† 30-day pain free mean response through 2018 jumped from 52% up to 67% reporting CH pain free in 2019.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Apr 10th, 2020 at 1:21am by Batch »  

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Re: 123 Days PF And I Think I know Why
Reply #2637 - Apr 10th, 2020 at 10:40pm
 
Thanks Batch, have a Happy Easter and stay safe.

Cheers Hoppy
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Re: 123 Days PF And I Think I know Why
Reply #2638 - Apr 11th, 2020 at 10:38pm
 
Batch wrote on Apr 9th, 2020 at 6:47am:

I've updated the supplements to include the Methyl Folate + (B complex) in place of the vitamin B 50/100 complex.† Rationale: The methylated forms of vitamin B have a higher bioequivalence.† I've found this combination gets me through the heavy pollen season without needing to increase my vitamin D3 intake.


Hey Batch,

What month do you usually start taking the B-100 Complex and Methyl Folate?†

Any particular brand (for the B-Complex) and dosage (for the Methyl Folate) you recommend?

Also, if I start a 3-month course of B-100 Complex plus Methyl Folate, should I stop taking the B-12 Methylcobalamin 5000 mcg and B-1 Benfotiamine 300 mg that I'm currently taking?
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« Last Edit: Apr 11th, 2020 at 10:44pm by slacker032 »  
 
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Re: 123 Days PF And I Think I know Why
Reply #2639 - Apr 14th, 2020 at 4:26pm
 
Batch (all)

Hey everyone I am just checking back in formally. It's that time in my world for my headaches to roll back around 3 years-ish. It's been 3 years this month BUT the good news is nothing yet. I know, I know we don't know when it's going to hit but I have hope this time.

I have my D3 level right around 100ng/ml I'd be more comfortable with it a little higher.

I get so caught up in/with life when my pain is gone I do not check in here as often as I should. Growing kids, taking care of loved ones etc. It's a blessing when we get the chance to do it.

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Re: 123 Days PF And I Think I know Why
Reply #2640 - Apr 15th, 2020 at 12:25am
 
Hey Slacker,

I take the Methyl Folate + daily as it is also a vitamin B complex.  The big difference is the B vitamins in the Methyl Folate complex are all methylated which gives them a higher bioequivalence. I stopped taking the B100 complex when I switched to the Methyl Folate +.

Take care and please keep us posted.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #2641 - Apr 15th, 2020 at 1:41am
 
Hey TG,

Thanks for the update and 25(OH)D lab data.  I'd say you're in the Catbird seat with your 25(OH)D3 at 100 ng/mL.  At that level, the probability of the CH beast being able to jump ugly is nil.

Be sure to take at least 3 grams/day vitamin C (1g 3X day) and 50 mg/day zinc on top of your usual anti-inflammatory regimen.  Rationale: this is an immune-boosting strategy that will help your immune system fight off the SARS-CoV-2 virus and help prevent COVID-19 infection.

In addition to being a potent antioxident, Vitamin C is also a potent antiviral that kills virus on contact if you keep the serum concentration high enough with frequent dosing throughout the day.  Vitamin D3 beefs up immune system cells in the innate part of the immune system that serves as the first line of defense against new invading pathogens, bacteria, fungus and virus for which there are no antibodies.

Zinc enables the thymus to produce memory T-cells which from part of the second line of defense in the adaptive part of the immune system.  These cells attack invading virus then generate antibodies that physically stick to other invading virus of the same kind, marking them for destruction by killer T-cells.  The memory T-cells store the directions needed to generate these antibodies in their DNA so that when they replicate, the code for generating these antibodies is passed on to their offspring providing us with life-long immunity against that specific virus.

Zinc actually blocks virus from entering cells lining the alveoli at the ACE-2 receptors and also enters these cells to stop viral replication.  These two functions alone make zinc a very important part of this immune-boosting combination to prevent COVID-19 infection.

So much for today's lesson in immunology.

Take care and please keep me posted

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #2642 - Apr 15th, 2020 at 1:52am
 
Batch wrote on Apr 15th, 2020 at 12:25am:
Hey Slacker,

I take the Methyl Folate + daily as it is also a vitamin B complex.† The big difference is the B vitamins in the Methyl Folate complex are all methylated which gives them a higher bioequivalence. I stopped taking the B100 complex when I switched to the Methyl Folate +.

Take care and please keep us posted.

V/R, Batch


Hey Batch,

If I start taking the Methyl Folate+, should I stop taking the B-12 Methylcobalamin 5000 mcg and B-1 Benfotiamine 300 mg that I'm currently taking?

Also, do you take the Methyl Folate+ year round and not just a 90-day course?
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Re: 123 Days PF And I Think I know Why
Reply #2643 - Apr 19th, 2020 at 1:01am
 
Hey Slacker,

Good question.† The Methyl Folate + contains both B-12 Methylcobalamin and vitamin B1 so there's no real need to take them separately.† I started taking the Methyl Folate + in January and plan to take it year round.

One of the biggest benefits I've found from taking the Methyl Folate + is I haven't needed to boost my vitamin D3 dose to 30,000 IU/day up to 40,000 IU/day to get through the heavy spring pollen season.† One Bio-Tech D3-50 50,000 IU water soluble vitamin D3 capsule a week is working just great now that I'm taking the Methyl Folate + and the Big Leaf Maple tree pollen has been fearsome for the last week.

The hood of my once black pickup truck is no longer black. It's now loaded with thick yellow Big Leaf Maple pollen.

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The culprit is this charming yellow bloom set.

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The problem is there are thousands of these blooms on the 100 year old, 150 foot tall Big Leaf Maple trees and there are at least 10 of them surrounding the house like these two outside our bedroom window. The slightest breeze will cause them cut loose with thick yellow clouds of pollen.

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Fortunately it rained for a few minutes this afternoon and that cleared the air... for a while...† Here's an example of the Big Leaf Maple tree pollen the rain washed off the closed sun umbrella on our deck.

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In any event, I love the Methyl Folate +. It Swirkin!

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Apr 19th, 2020 at 1:04am by Batch »  

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Re: 123 Days PF And I Think I know Why
Reply #2644 - Apr 19th, 2020 at 10:59am
 
Got it.  Thanks Batch.
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Re: 123 Days PF And I Think I know Why
Reply #2645 - Jul 28th, 2020 at 3:57pm
 
I have a question Batch.

If someone is not receiving any benefits from the regimen, at what vitamin D level should they give up on the regimen?

100 ng/ml? 120 ng/ml? 150 ng/ml?
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« Last Edit: Jul 28th, 2020 at 3:59pm by Fitzer »  
 
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Re: 123 Days PF And I Tm
Reply #2646 - Jul 29th, 2020 at 1:18pm
 
Hey Fitzer,

Great question.† The latest version of the anti-inflammatory regimen CH and MH preventative treatment protocol calls for staying on the accelerated vitamin D3 loading schedule until you experience a significant reduction in CH frequency or up to 30 days whichever occurs first.† At the 30 day mark, you need to drop back to a maintenance dose of 10,000 IU/day with the liquid softgel vitamin D3 formulations or 50,000 IU/week with the Bio-Tech D3-50 50,000 IU water soluble form of vitamin D3.† At that point you also need to see your PCP/GP for lab test of your serum 25(OH)D3, calcium and PTH.† These labs are important primarily to ensure serum calcium remains within its normal reference range so there's no hypercalcemia.

There have been a few CHers who needed to elevate their serum 25(OH)D3 above 200 ng/mL (two over 300 ng/mL) before they experienced a significant reduction in CH frequency.† All of them did this under medical supervision by their PCP/GP with frequent labs for 25(OH)D3 and calcium.

If you've not switched to the Bio-Tech D3-50, now would be a good time to switch.† We've found the Bio-Tech D3-50 to be faster acting with a higher bioequivalence in elevating serum 25(OH)D than the same dose of the oil-based liquid softgel vitamin D3 formulations.

We've also found the Methyl Folate+ vitamin B complex also helps vitamin D3 to be more effective as the methylated forms of vitamin D3 have a higher bioequivalence.

Doubling the Omega-3 fish oil dose has helped several CH achieve a favorable response to this regimen as has taking 1000 mg/day Turmeric (Curcumin), another natural anti-inflammatory agent.

For reference, as illustrated by the 3-year record of my labs for serum 25(OH)D3, calcium and PTH, I've needed to maintain my serum 25(OH)D3 around 150 ng/mL and at times as high as 180 ng/mL to remain CH pain free during heavy pollen and mold spore seasons which is most of the time where I live.

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There are several reasons why you haven't responded to this regimen.† Please shoot me a PM with your email address so we can take this topic off-line to discuss and I can provide additional information that may be helpful.

In regards to stopping this regimen, the health benefits are so great, I would continue taking it even if there's no response to your CH. The COVID-19 pandemic is a classic example as illustrated in the following graphics and good reason to stay on this regimen.

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Take care and please keep us posted.

V/R, Batch

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