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Vitamin D3 and Ghost Town Here? (Read 985 times)
jackiegirl
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Vitamin D3 and Ghost Town Here?
Jan 23rd, 2023 at 11:04am
 
Happy New Year!
I was just checking in after quite some time to see if there are any updates. Personally, I have been PF for over 3 years for the first time in 35 years. I have stuck to the D3 regimen, adding NAC, Quercetin, Resveratrol and C for Covid prevention. All seem to be working very well for EVERYTHING. I have had a few weeks here and there with shadows.  I upped the D3 and did specific Energy Medicine neck exercises when the shadows started and they immediately went away.  I am staying positive but always keeping it real because things can change in a hot second. Anyway, this place used to be hopping with activity. Am I wrong for assuming that many are doing well on the Vitamin D3 reg? I REALLY HOPE SO!!
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pattik
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Re: Vitamin D3 and Ghost Town Here?
Reply #1 - Jan 24th, 2023 at 10:15am
 
Greetings!
You are not wrong to assume that the D3 regimen has been very impactful. Thank God for Batch. I also get minor breakthroughs of low level attacks, which I can stop with a short term increase of D and co-factors--usually just a few days. My last full-blown cycle was the year before I started the D3 regimen in 2013. Who knew at the time that the regimen contains powerful immune-building ingredients too. Like you, I have added quercetin and extra C, especially during winter months. So far, so good. It's also smart to not forget how quickly things can change with CH. Complacency has no place with this condition. I miss the bustling activity in this forum. People splintered off to several social media sites. Too bad too, because more info exchange is possible in a centralized location instead of multiple little kingdoms scattered around the interwebs. So glad to hear you are thriving! Keep it up Smiley
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CCHInRemission
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Re: Vitamin D3 and Ghost Town Here?
Reply #2 - Jan 25th, 2023 at 5:27am
 
There is many options available now. D3. Psilocybin, and now stem cell. When I first got sick, the treatment options were not many. Its great to see people getting relief in whatever means necessary. Pain Free Wishes to all.
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« Last Edit: Jan 25th, 2023 at 5:27am by CCHInRemission »  
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AussieBrian
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Re: Vitamin D3 and Ghost Town Here?
Reply #3 - Jan 25th, 2023 at 6:20am
 
CCHInRemission wrote on Jan 25th, 2023 at 5:27am:
D3. Psilocybin, and now stem cell.


There's also oxygen,  which so many CHeads swear by,  along with a number of very healthy diets showing great results. 
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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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jackiegirl
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Re: Vitamin D3 and Ghost Town Here?
Reply #4 - Jan 25th, 2023 at 10:26pm
 
Thank you for all the updates. I still keep 5 O2 tanks in my closet just in case. They never picked them up from my last cycle. It is comforting to know they are there.  I used to panic when a cycle started because getting O2 was always a hassle. I think the anxiety from that exasperated the situation. I tried psilocybin and didn't have much luck. It had some effect but never broke a cycle. Stem cell treatment is a new one to me.  I will have to read up on that. Hopefully these things are finally under control after 35 years. PF days and nights to ALL! Smiley
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CCHInRemission
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Re: Vitamin D3 and Ghost Town Here?
Reply #5 - Jan 26th, 2023 at 5:52am
 
jackiegirl wrote on Jan 25th, 2023 at 10:26pm:
Thank you for all the updates. I still keep 5 O2 tanks in my closet just in case. They never picked them up from my last cycle. It is comforting to know they are there.† I used to panic when a cycle started because getting O2 was always a hassle. I think the anxiety from that exasperated the situation. I tried psilocybin and didn't have much luck. It had some effect but never broke a cycle. Stem cell treatment is a new one to me.† I will have to read up on that. Hopefully these things are finally under control after 35 years. PF days and nights to ALL! Smiley


Hi, there isn't much to read. I'm the first in the world to do stem cell specifically for clusters....
I have a video of my procedure filmed by my wife on my YouTube page. Ill post the link when I reach 10 posts.
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Batch
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Re: Vitamin D3 and Ghost Town Here?
Reply #6 - Feb 6th, 2023 at 9:10am
 
Hey Jackiegirl,

Thank you for the feedback on some of the Antihistamine Full Monty supplements.† Your response is consistent with nearly all CHers who have bothered to comment on their effectiveness.† I've been taking them for well over a year and they have clearly helped keep me CH pain free.† You are also correct in taking these supplements to help prevent a serious COVID-19 infection.† There are several well designed studies with this same conclusion.

I completed one of my 25(OH)D3 burn down tests where I went without any vitamin D3 (but I did take all the cofactors) between March and November of last year.† My starting 25(OH)D3 serum concentration was 260 ng/mL and I made it pain free to late November when I started experiencing a single mild CH while sleeping.† They were so mild, they resolved on their own in less than 20 minutes at a higher respiration rate. At that point a Grassrootshealth home blood spot test for 25(OH)D3 came back at 120 ng/mL so that is likely my CH threshold.

In stead of starting a 600,000 IU vitamin D3 loading schedule to go completely CH pain free, I took the opportunity to do sensitivity testing of the Antihistamine Full Monty supplements.† I found the Turmeric (Curcumin), Quercetin, Resveratrol and vitamin C to be the heavy lifting work horses that are responsible for providing the majority of the favorable response that keeps me CH pain free.† I also found skipping these supplements for more than two days while near the 25(OH)D3 CH threshold invites the CH beast to jump ugly.† Several CHers who started the Antihistamine Full Monty have reported similar results.

You're spot on.† CH.com does appear to be a Ghost Town. I check a couple times a week and there's not been a lot of posts here for many months.† I'm not sure why, but like you, I hope it's due to more CHers following the anti-inflammatory regimen and treatment protocol.† That said, there are a lot of guests viewing the boards daily.† 96 at this point early today and that's great!

I'll be publishing the anti-inflammatory regimen CH and MH preventative treatment protocol Quick Start Guide at VitaminDWiki in a few weeks and will post the download link here.† This Quick Start Guide is a condensed version of the complete treatment protocol at the following link with several updates for multiple vitamin D3 loading schedules and higher maintenance doses.† It also introduces the Antihistamine Full Monty supplements.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

I use VitaminDWiki.com as Henry Lahore has a download counter so I can track the activity.

Readers of my webpage there have downloaded 83,784 copies of this treatment protocol since Henry published it 21 Jan 2017. It is presently averaging 50 downloads a day.

Take care and thanks for the update.

V/R, Batch
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« Last Edit: Feb 6th, 2023 at 9:11am by Batch »  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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Samiam
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Re: Vitamin D3 and Ghost Town Here?
Reply #7 - Apr 26th, 2023 at 11:24am
 
Good Day all,

Wow, things have changed on the site as to the activity.  This site is still my go to place and a sense of comfort for times that I'm in need.  I'm Samiam and I have been in remission with what it looks like except for a brief brush in 2013 that didn't go full blow 12 yrs.  I have been a Cluster patient for over 43 yrs.  I'm once again starting with strong shadows and quickly started on a steriod dose pack.  I'm hoping this will stop it in it's tracks so fingers crossed.  I may do a second pack just not sure.  I have been doing D3 125 mgs, 2400 fish oil, 400-800 of magnesium daily and I think that really has helped.  The last year has been an extremely stressful time.  The death of my mother, having Covid, the death of my FIL who just passed in January staying up 4 nights in a row not sleeping taking care of him, so I'm guessing for me the perfect storm.  I am just going to read to see if anything is new in treatments since 12 yrs is a really long time.  I wish everyone pain free days and nights.
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pattik
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Re: Vitamin D3 and Ghost Town Here?
Reply #8 - May 2nd, 2023 at 10:16am
 
Hi Samiam,
It's good to see you checking in here. IMO, this is still the best site to find a wide variety of information all in one place. I totally get the stress factor you have experienced, and I experienced the same physical responses for many of the same reasons. As an aside, around 6 months after a few months of continuous extreme stress, I also shed a ton of hair. It grew back, LOL.  Grin I hope your steroid intervention will get things back to normal. On occasion, I have increased D3 dosing (and co-factors) for short periods (a few days-to a week) to get the inflammation down. Any longer than that, you should probably get your blood levels tested to be on the safe side. I hope that by even now, you are getting some relief and hopefully back to being pain free. Take care.
Patti
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TheAndyT
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Re: Vitamin D3 and Ghost Town Here?
Reply #9 - May 25th, 2023 at 10:56pm
 
Hey, Batch...

I have been trying for a few days now to get the latest version of the regimen by clicking on the links provided. However; the links are not working. I cant tell you for sure if it is just me or everyone else.

My best and kindest regards,
Andy
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Batch
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Re: Vitamin D3 and Ghost Town Here?
Reply #10 - May 26th, 2023 at 12:52pm
 
Hey Andy,

I sent you a PM.  Check your InBox.

A photo of the latest supplements by brand and dose for the basic regimen follow.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

I order all from amazon.com.

Take care,

V/R, Batch
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« Last Edit: May 26th, 2023 at 12:56pm by Batch »  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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TheAndyT
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Re: Vitamin D3 and Ghost Town Here?
Reply #11 - May 28th, 2023 at 7:30pm
 
Copy that! Thanks a bunch!
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Miguel Amaral
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Re: Vitamin D3 and Ghost Town Here?
Reply #12 - Jul 27th, 2023 at 5:16pm
 
Hi all , hope you're all well !

Been around in the forum reading a lot† in the last weeks as unfortunately my PF days came to an end on June 18th .

My last cycle was December 2018 when I started the D3 Regimen , had a pretty good response and went PF in around 30 days .
Since then my routine blood tests showed my D3 has been around 100 ng/ml and that worked for me with 10.000Ui a day with the cofactors .
Used to make an anual break of the D3 in† August during summer holidays .

Last blood test before this beast visit was on January 2023 :† D3 was 99 ng/ml and other values were within range .
So when the beast came up again my instant reaction was to revisit Batch's posts and start the D3 loading program.
Didn't had the chance to get imediate blood test prescription as it always takes a week or two to get a doctor appointment .
started the† D3 loading program on June 18th and went for the blood test on July 7th .
Result came out at 204 ng/ml with the calcium pretty much in the upper value but still within range .

But 4 weeks into this cycle and with this D3 value the beast was still knocking every 36/40 hours .

I went for the anti-histaminic route with 50mg a day ( pill , not liquid,† as it's not available here in Portugal ) for 10 days.
But I may have made a mistake :† I was a bit scared with the 204 ng/ml value so I stopped the D3 ( keeping the cofactors however ) .
During the 10 days of anti-histaminic I noticed a change on the cycle pattern for better .
However as soon as I stopped the anti-histaminic things got again a bit more ugly ...

I'm a bit lost and don't really know what to do . I'm on the maintenance dose at the moment .

Keeping my fingers crossed for all those PF days to come back .
And thank you all for all the help I've found here .†† Smiley
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EETTX
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Re: Vitamin D3 and Ghost Town Here?
Reply #13 - Jul 29th, 2023 at 5:38pm
 
I'm actually in the exact same boat Miguel.† I'm chronic but managed to get myself into remission since November 2020 and I'm coming out now.† In the process of the getting my Vitamin D levels checked but I expect they will be very high.†

I'm also getting hit every other day right now but the frequency is slowly increasing.† Really hoping Batch shows up soon because I could really use some advice on what to do next.

Also want to say thanks to everyone here.† I've been on and off over the years.† The support has always been appreciated
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Batch
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Re: Vitamin D3 and Ghost Town Here?
Reply #14 - Jul 29th, 2023 at 9:10pm
 
Hey EETTX,

You've a common problem.† Don't worry about your 25(OH)D3 serum concentration.† I've run my 25(OH)D3 up to 272 ng/mL but kept my serum calcium and PTH within their respective reference ranges.

I would start a 600,000 iU vitamin D3 loading schedule taking 100,000 IU/day vitamin D3 for six (6) days then drop back to an initial maintenance dose of 15,000 to 20,000 IU/day.† This should get you back CH pain free.† Test again in 2 weeks for serum 25(OH)D3, calcium and PTH.† You'll want to see an increase in 25(OH)D3, but calcium and PTH should remain within thier respective reference ranges.

If you're still getting hit and your serum calcium is okay, I would do another 600,000 IU vitamin D3 loading schedule and test again.

The following illustrates my lab results over a 5 year period using this loading schedule for the last two years to remain CH pain free.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Take care and please keep us posted.

V/R, Batch

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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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EETTX
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Re: Vitamin D3 and Ghost Town Here?
Reply #15 - Jul 29th, 2023 at 11:42pm
 
Thanks a bunch Batch, I will give it a shot.
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EETTX
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Re: Vitamin D3 and Ghost Town Here?
Reply #16 - Aug 6th, 2023 at 2:58pm
 
Hey Batch,

I completed the 100K IU Vitamin D for 6 days that you recommended and even extended it a couple of days but things are deteriorating rapidly.  I've also added the antihistamine "full monty" in the guide you sent me.  Are there any other recommendations that you can make?  I'm not sure what else to do.
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Miguel Amaral
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Re: Vitamin D3 and Ghost Town Here?
Reply #17 - Aug 13th, 2023 at 8:00am
 
A liitle update on my previous msg :
So I kept the trust and maintained myself on the maintenance D3 dose only after the 10 days of anti-histaminic.
Slowly things started to improve and last episod (Kip 5)† was already July 28th .
Hopefully the path will be to keep getting better & better .

PF days are my wishes to everyone and thanks again for sharing the knowledge .


Miguel Amaral wrote on Jul 27th, 2023 at 5:16pm:
Hi all , hope you're all well !

Been around in the forum reading a lot† in the last weeks as unfortunately my PF days came to an end on June 18th .

My last cycle was December 2018 when I started the D3 Regimen , had a pretty good response and went PF in around 30 days .
Since then my routine blood tests showed my D3 has been around 100 ng/ml and that worked for me with 10.000Ui a day with the cofactors .
Used to make an anual break of the D3 in† August during summer holidays .

Last blood test before this beast visit was on January 2023 :† D3 was 99 ng/ml and other values were within range .
So when the beast came up again my instant reaction was to revisit Batch's posts and start the D3 loading program.
Didn't had the chance to get imediate blood test prescription as it always takes a week or two to get a doctor appointment .
started the† D3 loading program on June 18th and went for the blood test on July 7th .
Result came out at 204 ng/ml with the calcium pretty much in the upper value but still within range .

But 4 weeks into this cycle and with this D3 value the beast was still knocking every 36/40 hours .

I went for the anti-histaminic route with 50mg a day ( pill , not liquid,† as it's not available here in Portugal ) for 10 days.
But I may have made a mistake :† I was a bit scared with the 204 ng/ml value so I stopped the D3 ( keeping the cofactors however ) .
During the 10 days of anti-histaminic I noticed a change on the cycle pattern for better .
However as soon as I stopped the anti-histaminic things got again a bit more ugly ...

I'm a bit lost and don't really know what to do . I'm on the maintenance dose at the moment .

Keeping my fingers crossed for all those PF days to come back .
And thank you all for all the help I've found here .†† Smiley

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reptile
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Re: Vitamin D3 and Ghost Town Here?
Reply #18 - Sep 21st, 2023 at 9:25pm
 
Hi,
This is for Batch.
I am a 35 yr CH sufferer. I have tried many remedies, of course. O2 works well for me as do triptans and occipital nerve blocks. This combo keeps me from being disabled, but nothing like the "cure" people using your program describe. I am ready to try your program, but before I do I want to make sure that nothing I am doing will interfere.
I take 120 mg of Verapamil. I use Zomig nightly as a prophylactic and have for yrs and thus avoided any nighttime attacks. I take topiramate and have numerous times attempted to titrate down but every time I do my symptoms get worse, so I go right back up. For yrs I tend to get attacks between 11:15 am and 3 pm about 10-15 days/mo year round. The occipital nerve blocks generally keep† them from being terrible. Oxygen puts most of them down in 10-15 minutes. There are exceptions, of course. If I have to be away from oxygen during this time frame, I take 1/2 of a Zomig, but I can't do this too often or I risk rebound, a nasty state to be in.
Your advice is appreciated.
Thee Reptile
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Batch
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Re: Vitamin D3 and Ghost Town Here?
Reply #19 - Sep 22nd, 2023 at 10:36am
 
Hey Reptile,

Continuing your present clutch of CH prevent meds shouldn't pose a problem starting the anti-inflammatory regimen.  Do try to see your PCP or Neurologist to get lab assays of your serum 25(OH)D3, calcium and PTH (Parathyroid Hormone) before starting this treatment protocol.

Doing this will accomplish two things:  (1) It will establish a baseline for these three values so you can monitor progress.  and (2), When this treatment protocol starts working, you'll have educated your doctor.

I've sent you a short PM that should help.

Take care and please keep us posted with your progress with this treatment protocol.

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