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Vikinggirl CH.com Junior Offline I Love CH.com! Posts: 47 Norway Gender:	Re: Needing some help here with D3 - about to give up. Reply #25 - Nov 29^th, 2013 at 6:51pm I am so happy to hear that Rumeke. I bet you will get better and better, just like I did Connie
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Rumeke CH.com Veteran Offline Posts: 173 Westfield, NC Gender:	Re: Needing some help here with D3 - about to give up. Reply #26 - Nov 29^th, 2013 at 7:47pm Thanks Vikinggirl! Even took a two hour nap today..not even a shadow! Judy
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Vikinggirl

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Re: Needing some help here with D3 - about to give up.
Reply #27 - Nov 30^th, 2013 at 2:48am

Hi Judy,

Again you have the exact same experience as I did. After the D3 began to work, I could also take naps during the day without any attacks or shadows. That is the first time this has happend during a cyckle since I started in 1989.
It really is an amazing feeling.

Keep my fingres crossed that you will get totally PF within short Smiley

Connie

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D3 rocks !!!

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Rumeke

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Re: Needing some help here with D3 - about to give up.
Reply #28 - Nov 30^th, 2013 at 9:51am

Vikinggirl!

I had a shadow 2 hrs after I went to bed..debated getting up. Lol Finally decided I'd better and O2 killed it in 2 min. I did have one 2 hrs after that (love the clock in my head) that took 10 min to abort. But biggie is that I had 5 hrs of sleep after that! Feeling drugged but no pain!

I know what you mean about no hit after a nap. When you can't even take a nap w/o getting hit you quickly become a zombie from total lack of sleep. I used to set a timer for a 45 minute nap when my hits were bad (and before O2) so I could get a little bit of an energy boost. Anything close to an hour asleep and bam..the beast would hit.

Thanks for your encouragement! It means a lot!

Judy

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Rumeke

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Re: Needing some help here with D3 - about to give up.
Reply #29 - Dec 2^nd, 2013 at 10:12am

Update!

I am now getting only one shadow at night..aborted with 2 minutes on O2 or just waiting for it to pass. Nothing during the day..no shadows and can even take a nap now! Feeling "normal" during the day.

Batch had advised another load of 20,000 (still taking 20.000 D3 daily and then to decrease my daily to 15,000 before a new D25 test. Wondering if I still need this loading dose?

I just know that after an odd 4 month cycle I can see the light at the end of the tunnel!

Judy

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Needing some help here with D3 - about to give up. Reply #30 - Dec 2^nd, 2013 at 11:39am That's great news Judy, hope this success continues. Joe
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Rumeke CH.com Veteran Offline Posts: 173 Westfield, NC Gender:	Re: Needing some help here with D3 - about to give up. Reply #31 - Dec 2^nd, 2013 at 11:54am Guiseppi, do you think I still need to do my next loading dose?
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Vikinggirl

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Re: Needing some help here with D3 - about to give up.
Reply #32 - Dec 2^nd, 2013 at 1:47pm

I had to take a 50.000 iu loading dose 4 weeks in a row alongside the daily 20.000 iu. After the 4th loading dose, no more pain, no more shadows and life suddenly was not only beautiful, but worth living

If I were you, I would take another loading dose, maybe that will get rid of the last shadow.

Good luck, keeping my fingers crossed.

Connie

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D3 rocks !!!

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Tony Only

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Re: Needing some help here with D3 - about to give up.
Reply #33 - Dec 2^nd, 2013 at 2:10pm

Vitamin D has helped me a lot but it would not control my CH alone, no way.

I was chronic and became that way because of 20 years of heavy medicating and operations.

Found Clusterbusters and was PF for 3,5 years.

Now experiencing my 1st cycle after PF years completely without medications and I am SO grateful. I have been afraid all those medications which lengthened my episodes year by year and turning me chronic in the end had somehow "fried" my receptors that there is no going back. Now the nature of my CH is the same it was before medications over 20 years ago. Everything is possible.

What I meant to post for me to stay PF those 3,5 years required other means to go with Vitamin D regimen. RC seeds are Herbal Protocol were my choices and will be my choices.

With my patient case, I will never use medications again, until we have a medication made for us. So my thumbs are up for Entheogen.

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Guiseppi

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Re: Needing some help here with D3 - about to give up.
Reply #34 - Dec 2^nd, 2013 at 2:53pm

I don't have the expertise to answer that one for you. I'm fortunate in that the regimen with only 5,000 of D-3 has kept me cycle free for over 3.5 years. I am fanatical about taking the regimen daily and intend to for the rest of my life. My guess would be to maintain your current dosing until you can get the lab tests done to confirm your levels. If you PM Batch he'll have a better educated answer for ya.

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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Rumeke CH.com Veteran Offline Posts: 173 Westfield, NC Gender:	Re: Needing some help here with D3 - about to give up. Reply #35 - Dec 2^nd, 2013 at 3:13pm Thanks! Will contact Batch!
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Batch

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Re: Needing some help here with D3 - about to give up.
Reply #36 - Dec 2^nd, 2013 at 3:28pm

Hey Judy,

Thanks for the recent updates and good question. Another 50,000 IU loading dose shouldn't pose a problem and might be just what you need on top of your daily dose to go completely pain free.

Do try to see your PCP for a 25(OH)D lab test. That's the best way to determine your vitamin D3 dosing needs.

For example, if your 25(OH)D serum concentration is between 80 and 100 ng/mL, (200 and 250 nmol/L), you can drop the loading dose and throttle back to a maintenance vitamin D3 dose of 10,000 IU/day.

If it's between 60 and 80 ng/mL, (150 and 200 nmol/L), and you're still getting hit, stick with the daily dose of 15,000 IU/day and get tested again in 30 days.

If it's between 60 and 80 ng/mL, (150 and 200 nmol/L), and you're not getting hit, throttle back to a maintenance vitamin D3 dose of 10,000 IU/day.

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, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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Rumeke CH.com Veteran Offline Posts: 173 Westfield, NC Gender:	Re: Needing some help here with D3 - about to give up. Reply #37 - Dec 2^nd, 2013 at 3:46pm Batch! Just PM'ed you...so please ignore! Will call the PCP for a D25 test and maybe a Calcium count to put his mind at ease. Thanks again, Judy
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Rumeke

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Re: Needing some help here with D3 - about to give up.
Reply #38 - Dec 3^rd, 2013 at 10:12am

Finally have an appt with my PCP for a D25 and Calcium test and expecting a confrontation as to my dosing levels of D3. He was fine with 10,000 a day but panicked at 15,000 and a D25 of 62ng the end of Oct.

I want to be as open and honest with him as I can (been my PCP for over 15yrs) but understand where his guidelines are coming from. Is there anything I can take, short of a 10 page printout, to help him understand that this regimen does help a majority of CH sufferers?

Judy

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Rumeke

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Re: Needing some help here with D3 - about to give up.
Reply #39 - Dec 13^th, 2013 at 7:00pm

Update!

So had the appt with my PCP today..filled him in on what I had taken, how much, how long and what my loading doses were. I waited for some "anal leakage" when he saw the totals but he said he had no problem with my dosing.
He was very supportive, asked me questions about my CH reaction to each increase. At the end he ordered a D25 and serum calcium and told me he thought it was great that some had found a possible treatment for CH. He even said hopefully in years ahead this treatment or something along the same line will be prescribed for CH patients as the norm. He said the big problem will be resistance to something that does not require a prescription.

Best of all I am pain free! BTW my BP is down and so is my heart rate!

Now to wait for the results on Monday..

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Rumeke CH.com Veteran Offline Posts: 173 Westfield, NC Gender:	Re: Needing some help here with D3 - about to give up. Reply #40 - Dec 13^th, 2013 at 7:09pm And how could I forget ..BATCH for his guidance and support through this 4 month cycle! I will never forget it! Judy
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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Needing some help here with D3 - about to give up. Reply #41 - Dec 14^th, 2013 at 4:23pm Hi Judy, Thats great news. Wishing you pain free days forever. Hoppy.
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Rumeke CH.com Veteran Offline Posts: 173 Westfield, NC Gender:	Re: Needing some help here with D3 - about to give up. Reply #42 - Dec 14^th, 2013 at 5:03pm Thanks Hoppy! Spoke too soon...2 5 minute shadows last night woke me! Grrr! Going to wait until I get my D25 and Calcium tests back on Monday and go from there. Been on 10,000 for 2 weeks so that may be the reason.
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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Needing some help here with D3 - about to give up. Reply #43 - Dec 14^th, 2013 at 5:36pm Hi Judy, Sorry to hear the is still hanging around. Maybe try upping the vitamin D3 to 15,000iu for a couple of weeks and see how you go. Hoppy.
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Rumeke CH.com Veteran Offline Posts: 173 Westfield, NC Gender:	Re: Needing some help here with D3 - about to give up. Reply #44 - Dec 14^th, 2013 at 5:43pm I think that's what I'm going to have to do. As my PCP said..hey you do what you have to do to get relief and since it's not going to hurt you...go for it!
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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Needing some help here with D3 - about to give up. Reply #45 - Dec 14^th, 2013 at 6:56pm It's also safe take a loading dose of 50,000iu vit D3, once a week for two weeks. Hoppy.
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hell-jee CH.com Newbie Offline I Love CH.com! Posts: 15	Re: Needing some help here with D3 - about to give up. Reply #46 - Dec 18^th, 2013 at 2:13pm Remeke What was your results of the Vit d and calcium tests?
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hell-jee CH.com Newbie Offline I Love CH.com! Posts: 15	Re: Needing some help here with D3 - about to give up. Reply #47 - Dec 18^th, 2013 at 2:27pm remeke And why is it happening to me every+- 2.5 hrs???
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Rumeke

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Re: Needing some help here with D3 - about to give up.
Reply #48 - Dec 18^th, 2013 at 7:15pm

Sorry, just got my full report today in the mail. My PCP decided to run a complete profile to see if the increase in D3 had an effect on my other counts.

D25 is at 89.2ng/ml
Calcium is 10.0mg/dl

Everything else is great according to him. He knows what my doses have been since August and that I have been only taking 10, 000 a day since Dec 3rd and asked that I not increase my dose for now.

I still get a shadow now and then, they last about 5 minutes if that. I'm still on the regimen except I keep forgetting to take my calcium. I also have stopped the Centrum silver because it hurts my stomach (I tried reg Centrum years ago and it did the same thing) so need to find another vitamin that has the Vit A, K2 and Boron.

Not totally PF yet but close enough that I am not going to complain!

Judy

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Batch

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Re: Needing some help here with D3 - about to give up.
Reply #49 - Dec 19^th, 2013 at 11:01am

Hey Judy,

Thanks for the update with lab results.. They're outstanding!!! The normal reference range for total calcium is 8.5 to 10.5 ng/dL so it's looking great with your 25(OH)D at 89.2 ng/mL.

As you're still not completely pain free you might try popping the two 5,000 IU liquid softgel capsules between you teeth and keep the contents in your cheeks for a few minutes... This will increase vitamin D3 absorption as it bypasses the lower GI tract and goes straight into your bloodstream through your cheek lining.

This is very safe as vitamin D3 used to come as a liquid with eyedropper before the advent of the softgel capsules. I do this frequently... There's no bad taste and the softgel ends up like a little bland gummy bear before dissolving.

You may have a low arterial/systemic pH.. Too much acid... so you also might want to try the GOMBS diet. Greens, Onions, Mushrooms, Beans/Berries and Seeds/Nuts. A handful of each with every meal can elevate a low arterial/systemic pH and that should help the vitamin D3 for a completely pain free response.

See the following link for more on GOMBS:

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Take care and thanks again for the update.

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, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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