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About to start D3 Regimen...


Dagobah
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In the middle of a cluster cycle, going to try the D3 Regimen. Wanting to make sure I have things straight by combining the updates I've read on here from Batch plus the original instructions. Can someone check my homework here?

Products:

 

Instructions

Load (1 week):

  • 0.5cc, Daily
    • Micro D3
  • Two pills, Daily:
    • Fish Oil
    • Magnesium
  • One Pill, Daily:
    • Bio-Tech D3
    • Magnesium
    • Kirkland Multi-Vitamin
    • Methyl Folate
    • Super K
    • Vitamin B-50 (for 90 days, then stop)

Taper Down (1 week):

  • Two pills, Daily:
    • Fish Oil
  • One Pill, Daily:
    • Bio-Tech D3
    • Magnesium
    • Kirkland Multi-Vitamin
    • Methyl Folate
    • Super K
    • Vitamin B-50 (for 90 days, then stop)

Maintenance:

  • Two pills, Daily:
    • Fish Oil
  • One Pill, Daily:
    • Magnesium
    • Kirkland Multi-Vitamin
    • Methyl Folate
    • Super K
    • Vitamin B-50 (for 90 days, then stop)
  • One Pill, Once a week:
    • Bio-Tech D3 

Labs to request:

Before starting / 1 month / 3 months / 6 months:

  • Serum 25(OH)D3
  • Calcium 
  • PTH (Parathyroid Hormone)

 

Notes:

  • If any allergic reactions occur, stop taking immediately and consult with doc
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Hey! You actually need 2 magnesium’s per day during the loading stage to absorb the vitamin D. Take one in the morning with food and one at night with food. If not you might get diarrhea. 
 

kat

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1 hour ago, kat_92 said:

Hey! You actually need 2 magnesium’s per day during the loading stage to absorb the vitamin D. Take one in the morning with food and one at night with food. If not you might get diarrhea. 
 

kat

Ah thanks! I must have missed that. I'll update the original post to reflect that (for myself and others).

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59 minutes ago, spiny said:

I hope that you find the relief that many of us have found with this regimen!!

Me, too. Been dealing with this for 30 years. Luckily my cycles are only every few years, but it's still hell. Hoping this helps.

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Hey Dagobah,

You've got the supplements and basic lab test schedule spot on.  Kat is spot on about doubling the magnesium dose while loading to at least 800 mg/day.

We're finding faster responses and a higher level of efficacy if CHers load vitamin D3 with 100,000 IU/day (two of the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 capsules) plus 0.5 cc/day of the Micro D3 for a total loading dose of 140,000 IU/day.  We've also found that staying at this loading dose until CH pain free for at least two full days before starting a taper down to an initial maintenance dose of 100,000 IU/week ± 50,000 IU tends to result in a lasting and complete cessation of CH.  Most CHers achieve success when the total loading dose reaches 700,000 IU of vitamin D3 (5 days loading) but some CHers and migraineurs need a total loading dose as high as 1,400,000 IU of vitamin D3 (10 days loading).   The difference appears to be related to BMI and/or an immune system response to something like allergens.

If you're CH pain free after tapering to the initial maintenance dose, the labs at 30 days is fine.  If you're still getting whacked after two weeks loading, drop the vitamin D3 dose to 50,000 IU/day and see your PCP/GP for labs of your 25(OH)D3, calcium and PTH.  If your serum calcium is within its normal reference range and your PTH has not reached the low normal limits of its reference range, continue loading.

Take care and please keep us posted.

V/R, Batch

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15 hours ago, xxx said:

Hey Dagobah,

You've got the supplements and basic lab test schedule spot on.  Kat is spot on about doubling the magnesium dose while loading to at least 800 mg/day.

We're finding faster responses and a higher level of efficacy if CHers load vitamin D3 with 100,000 IU/day (two of the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 capsules) plus 0.5 cc/day of the Micro D3 for a total loading dose of 140,000 IU/day.  We've also found that staying at this loading dose until CH pain free for at least two full days before starting a taper down to an initial maintenance dose of 100,000 IU/week ± 50,000 IU tends to result in a lasting and complete cessation of CH.  Most CHers achieve success when the total loading dose reaches 700,000 IU of vitamin D3 (5 days loading) but some CHers and migraineurs need a total loading dose as high as 1,400,000 IU of vitamin D3 (10 days loading).   The difference appears to be related to BMI and/or an immune system response to something like allergens.

If you're CH pain free after tapering to the initial maintenance dose, the labs at 30 days is fine.  If you're still getting whacked after two weeks loading, drop the vitamin D3 dose to 50,000 IU/day and see your PCP/GP for labs of your 25(OH)D3, calcium and PTH.  If your serum calcium is within its normal reference range and your PTH has not reached the low normal limits of its reference range, continue loading.

Take care and please keep us posted.

V/R, Batch

Thanks so much.  If I'm unable to get labs prior to beginning, would you still recommend the 140,000 IU/day load?

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Hey Dagobah,

Good question.  If you're still getting hit with CH, the answer is yuppers, load vitamin D3 at 140 IU/day until completely CH pain free for two full days then start a taper down to a maintenance dose that keeps you CH pain free.  I'll SWAG that vitamin D3 maintenance dose will be 100,000 IU/week ± 50,000 IU/week.

Take care and please keep us posted.

V/R, Batch

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Started the regiment today at 4pm. Fingers crossed!!!

I may have made one mistake in the original post above. I was thinking the Methyl Folate+ was different than the Vitamin B50. I only need one of those for 90 days, not both, right?

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On 7/28/2021 at 11:44 AM, xxx said:

Hey Dagobah,

Good question.  If you're still getting hit with CH, the answer is yuppers, load vitamin D3 at 140 IU/day until completely CH pain free for two full days then start a taper down to a maintenance dose that keeps you CH pain free.  I'll SWAG that vitamin D3 maintenance dose will be 100,000 IU/week ± 50,000 IU/week.

Take care and please keep us posted.

V/R, Batch

Batch,

Been having some success. Strangely, my clusters this cycle have turned into mostly migraines. More manageable, but it's not something I'm used to. Is this common?

Felt like I was making progress and dropped the D3 yesterday to 50k only to get hit this AM. If you have any insight here, let me know. My plan is to continue with the 100k/day for up to a week if needed and then taper down to 50k/day for a week and then onto maintenance dose. My labs are scheduled for the end of this month.

Also, the double magnesium does a number on my stomach. I've found splitting the pills up and taking after the two biggest meals of the day helps a lot. If anything I've found myself eating more before taking the pills to offset the GI issues.

14066956_ScreenShot2021-08-06at10_27_33AM.png.33a217acfdf5466310bc516cbc2e9338.png

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Hey Dagobah,

Good on you!  You're on the right track.  Love the headache log.  Changes in your CH patterns are consistent with the vitamin D3 starting to take control over your CH.  Don't be concerned about the total vitamin D3 dose, it's your labs for calcium and PTH that count.  As you're slamming the CH beast and making progress, see your PCP/GP for your labs next week.  As long as your serum calcium stays within its normal reference range and your PTH is above the low normal limit, keep on trucking!

I would go back up on the loading dose until I was headache pain free for two days then restart the taper by adding a day between loading doses every 5 to 7 days.  You'll know when to slow the taper.

Take care, hang in there and please keep us posted.

Hugs, V/R, Batch

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7 hours ago, xxx said:

Hey Dagobah,

Good on you!  You're on the right track.  Love the headache log.  Changes in your CH patterns are consistent with the vitamin D3 starting to take control over your CH.  Don't be concerned about the total vitamin D3 dose, it's your labs for calcium and PTH that count.  As you're slamming the CH beast and making progress, see your PCP/GP for your labs next week.  As long as your serum calcium stays within its normal reference range and your PTH is above the low normal limit, keep on trucking!

I would go back up on the loading dose until I was headache pain free for two days then restart the taper by adding a day between loading doses every 5 to 7 days.  You'll know when to slow the taper.

Take care, hang in there and please keep us posted.

Hugs, V/R, Batch

Are there target lab #s we should be looking for?

I see the D3 #s. I know I'm low, around 33. Currently taking 4000iu a day.

Thx

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On 7/27/2021 at 12:20 PM, Dagobah said:

In the middle of a cluster cycle, going to try the D3 Regimen. Wanting to make sure I have things straight by combining the updates I've read on here from Batch plus the original instructions. Can someone check my homework here?

Products:

 

Instructions

Load (1 week):

  • 0.5cc, Daily
    • Micro D3
  • Two pills, Daily:
    • Fish Oil
    • Magnesium
  • One Pill, Daily:
    • Bio-Tech D3
    • Magnesium
    • Kirkland Multi-Vitamin
    • Methyl Folate
    • Super K
    • Vitamin B-50 (for 90 days, then stop)

Taper Down (1 week):

  • Two pills, Daily:
    • Fish Oil
  • One Pill, Daily:
    • Bio-Tech D3
    • Magnesium
    • Kirkland Multi-Vitamin
    • Methyl Folate
    • Super K
    • Vitamin B-50 (for 90 days, then stop)

Maintenance:

  • Two pills, Daily:
    • Fish Oil
  • One Pill, Daily:
    • Magnesium
    • Kirkland Multi-Vitamin
    • Methyl Folate
    • Super K
    • Vitamin B-50 (for 90 days, then stop)
  • One Pill, Once a week:
    • Bio-Tech D3 

Labs to request:

Before starting / 1 month / 3 months / 6 months:

  • Serum 25(OH)D3
  • Calcium 
  • PTH (Parathyroid Hormone)

 

Notes:

  • If any allergic reactions occur, stop taking immediately and consult with doc

I see the Methyl folate is crossed out, so I do not need it?

I don’t have CH, but NDPH. So basically same headache for 4 years with varying degrees of pain on a daily basis. Been under control at anywhere from a 1 to a 4 on my scale since February using LSD every 10 weeks or so.

Do u guys think the regimen is the same? I never get a full day of pain free but enough very low levels to live.

You guys gave been great since I started posting this week. Really appreciate the knowledge and compassion you all show for each other and towards me.

Thank you ✌❤

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I would say you are correct on your question on the Methyl Folate. I do not take it. 

I would definitely give it a good try. Like a month at least. It will likely be of help. 

Anytime I feel a shadow, low level pain, I hit the caffeine. Nine pm? Yep and no problem for me to sleep after either. Actually many CHers hit it in the middle of the night to help keep the pain at a more manageable level when they are headed to the O2 and go right back to sleep. So, you might try that when you feel your head ramping up and see if it helps to stop the increase in pain.

Kat is using it for her head too, so that speaks to treating 'other' forms of head pain. I hate calling them headaches!! People with migraines use it too. Just get your labs done as stated above. If you have to wait on the labs, begin the vitamins and get tested as soon as possible. 

ATB!

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9 minutes ago, spiny said:

I would say you are correct on your question on the Methyl Folate. I do not take it. 

I would definitely give it a good try. Like a month at least. It will likely be of help. 

Anytime I feel a shadow, low level pain, I hit the caffeine. Nine pm? Yep and no problem for me to sleep after either. Actually many CHers hit it in the middle of the night to help keep the pain at a more manageable level when they are headed to the O2 and go right back to sleep. So, you might try that when you feel your head ramping up and see if it helps to stop the increase in pain.

Kat is using it for her head too, so that speaks to treating 'other' forms of head pain. I hate calling them headaches!! People with migraines use it too. Just get your labs done as stated above. If you have to wait on the labs, begin the vitamins and get tested as soon as possible. 

ATB!

Thanks Spiny.

What are the levels I'm looking for in the labs? I know the D3,I'm at 33ng.

What about the other 2.

I have started using more caffeine,  I usually was doing half decafe half Cafe blends.  Trying to avoid stimulates. But now I'm seeing some benefit with low level annoyances.

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@AlanK, the so called "normal range" on the 25 hydroxy D test is 30 to 120 ng/ml, however, the sweet spot for most seems to be in the 80 to 85 ng/ml range.  I'm unaware of the values for the other tests Batch reccomends but I imagine that info is included in the D3 document in our Files section

Dallas Denny 

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Hey DD, AlanK, All,

The 80 ng/mL "sweet spot" (target 25(OH)D3 serum concentration) is actually the mean 25(OH)D3 serum concentration reported by 80% of participants in the online survey who experienced a favorable response to this treatment protocol.  If you look at the following normal distribution chart of CHer reported lab results for 25(OH)D3 after ≥ 30 days on this treatment protocol below, half of these CHers required a higher 25(OH)D3 serum concentration up to 180 ng/mL to achieve a CH pain free response.  What this really means is they needed a larger vitamin D3 loading dose/longer loading schedule and higher vitamin D3 maintenance dose than 10,000 IU/day.

7fIH1fP.jpg

I've spent a good deal of time working with the CHers (and their doctors) who didn't respond to this treatment protocol using a 25(OH)D3 serum concentration target of 80 to 100 ng/mL.  What they had in common was their serum PTH was still in the mid-Normal range.  When they increased their vitamin D3 intake with loading doses between 100,000 IU/day and 150,000 IU/day, their PTH dropped to a low-Normal range and they started responding with a significant reduction in CH frequency or they experienced a CH pain free response.  What's also significant is their serum calcium concentration remained within its normal reference range.

This vitamin D3 treatment protocol has evolved slightly over its 10 years existence.  When we shifted the type of vitamin D3 from the oil-based liquid softgel formulations to the Bio-Tech D3-50 50,000 IU water soluble form of vitamin D3 in mid 2018, we saw an increase in the 30 day significant response rate from 80% to nearly 90% and an increase in the 30 day CH pain free response rate from 54% to 60%. Shifting from the generic vitamin B 50/100 complex to the Methyl Folate + B complex also helped. 

It's important to note these changes were not made in a vacuum.  This is a patient-centered and patient developed treatment protocol so "we" made these changes after observing the increase in efficacy.  The "We" is critical here as these changes/improvements could not have been made without input, feedback and active participation by the CHers and their PCP or neurologists following this treatment protocol.  Accordingly, in a very real sense, this is Your treatment protocol.  It's also important to note that I have also actively participated in these changes to the treatment protocol taking larger vitamin D3 loading doses elevating my serum 25(OH)D3 higher and taken higher vitamin D3 maintenance doses to maintain that higher 25(OH)D3 serum concentration.  Over the last four months, several of us have taken a loading dose combination of two (2) Bio-Tech D3-50 capsules and 0.5 mL of the Micro D3 nanoemulsion taken sublingual, for a total daily loading dose of 140,000 IU of vitamin D3.  This combination resulted in a rapid and effective elevation of the 25(OH)D3 serum concentration and more importantly, a cessation of CH without going bust on serum calcium or PTH.

IXaXfL2.jpgGaEir5t.jpg

The following 4-Year chart of my labs for serum 25(OH)D3, calcium and PTH tells the story.

hpLNn1Q.jpg

My PCP had no problem with my 25(OH)D3 serum concentration at 277 ng/mL as my serum calcium remained within its normal reference range and my PTH serum concentration didn't get too low.  He did order a 24 Hr urine collection to make sure I wasn't dumping calcium in urine.  Here are the results:

Tests: (1) Calcium, 24Hr, Ur w/Creatinine (003324) 28 May, 2021

  Calcium, Urine 24hr        146 mg/24 hr                26-354

 

  Calcium/Creat. Ratio       118 mg/g creat.            14-318

 

Serum 25(OH)D3 at 277 ng/mL (692 nmol/L). No Hypercalcemia and No Hypercalciuria

At this point I need to make the following disclaimer.

The vitamin D3 treatment protocol discussed above is solely for educational purposes regarding potentially beneficial therapies for Cluster and Migraine Headache. Never disregard professional medical advice because of something you have read on our website and releases. It is not intended to be a substitute for professional medical advice, diagnosis, or treatment in regards to any patient. Treatment for an individual patient should rely on the judgement of your physician or other qualified health provider. Always seek their advice with any questions you may have regarding your health or medical condition.

 

Take care and please keep us posted,

V/R, Batch

 

 

 

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20 hours ago, xxx said:

Hey DD, AlanK, All,

The 80 ng/mL "sweet spot" (target 25(OH)D3 serum concentration) is actually the mean 25(OH)D3 serum concentration reported by 80% of participants in the online survey who experienced a favorable response to this treatment protocol.  If you look at the following normal distribution chart of CHer reported lab results for 25(OH)D3 after ≥ 30 days on this treatment protocol below, half of these CHers required a higher 25(OH)D3 serum concentration up to 180 ng/mL to achieve a CH pain free response.  What this really means is they needed a larger vitamin D3 loading dose/longer loading schedule and higher vitamin D3 maintenance dose than 10,000 IU/day.

7fIH1fP.jpg

I've spent a good deal of time working with the CHers (and their doctors) who didn't respond to this treatment protocol using a 25(OH)D3 serum concentration target of 80 to 100 ng/mL.  What they had in common was their serum PTH was still in the mid-Normal range.  When they increased their vitamin D3 intake with loading doses between 100,000 IU/day and 150,000 IU/day, their PTH dropped to a low-Normal range and they started responding with a significant reduction in CH frequency or they experienced a CH pain free response.  What's also significant is their serum calcium concentration remained within its normal reference range.

This vitamin D3 treatment protocol has evolved slightly over its 10 years existence.  When we shifted the type of vitamin D3 from the oil-based liquid softgel formulations to the Bio-Tech D3-50 50,000 IU water soluble form of vitamin D3 in mid 2018, we saw an increase in the 30 day significant response rate from 80% to nearly 90% and an increase in the 30 day CH pain free response rate from 54% to 60%. Shifting from the generic vitamin B 50/100 complex to the Methyl Folate + B complex also helped. 

It's important to note these changes were not made in a vacuum.  This is a patient-centered and patient developed treatment protocol so "we" made these changes after observing the increase in efficacy.  The "We" is critical here as these changes/improvements could not have been made without input, feedback and active participation by the CHers and their PCP or neurologists following this treatment protocol.  Accordingly, in a very real sense, this is Your treatment protocol.  It's also important to note that I have also actively participated in these changes to the treatment protocol taking larger vitamin D3 loading doses elevating my serum 25(OH)D3 higher and taken higher vitamin D3 maintenance doses to maintain that higher 25(OH)D3 serum concentration.  Over the last four months, several of us have taken a loading dose combination of two (2) Bio-Tech D3-50 capsules and 0.5 mL of the Micro D3 nanoemulsion taken sublingual, for a total daily loading dose of 140,000 IU of vitamin D3.  This combination resulted in a rapid and effective elevation of the 25(OH)D3 serum concentration and more importantly, a cessation of CH without going bust on serum calcium or PTH.

IXaXfL2.jpgGaEir5t.jpg

The following 4-Year chart of my labs for serum 25(OH)D3, calcium and PTH tells the story.

GbdwHrc.jpg

My PCP had no problem with my 25(OH)D3 serum concentration at 277 ng/mL as my serum calcium remained within its normal reference range and my PTH serum concentration didn't get too low.  He did order a 24 Hr urine collection to make sure I wasn't dumping calcium in urine.  Here are the results:

Tests: (1) Calcium, 24Hr, Ur w/Creatinine (003324) 28 May, 2021

 

  Calcium, Urine 24hr        146 mg/24 hr                26-354

 

 

  Calcium/Creat. Ratio       118 mg/g creat.            14-318

 

 

 

Serum 25(OH)D3 at 277 ng/mL (692 nmol/L). No Hypercalcemia and No Hypercalciuria

At this point I need to make the following disclaimer.

The vitamin D3 treatment protocol discussed above is solely for educational purposes regarding potentially beneficial therapies for Cluster and Migraine Headache. Never disregard professional medical advice because of something you have read on our website and releases. It is not intended to be a substitute for professional medical advice, diagnosis, or treatment in regards to any patient. Treatment for an individual patient should rely on the judgement of your physician or other qualified health provider. Always seek their advice with any questions you may have regarding your health or medical condition.

 

Take care and please keep us posted,

V/R, Batch

 

 

 

Amazing response, thank you.

I'll run this by by my docs to be sure it won't interfere with with my Crohn's.

If you don't mind me asking, do you have a medical or related background? How did you discover this?

Take care 

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Alan,

If you read through the info at VitaminDWiki on vitamin D3 and Crohn's at the following link, you'll find this treatment protocol my be just what you need to control your Crohn's.

https://vitamindwiki.com/Search+Results?hl=en&oe=UTF-8&ie=UTF-8&btnG=Google+Search&googles.x=0&googles.y=0&q=Crohn's&domains=vitamindwiki.com&sitesearch=vitamindwiki.com#gsc.tab=0&gsc.q=Crohn's&gsc.page=1

In particular, read the study titled:  Therapeutic Effect of Vitamin D Supplementation in a Pilot Study of Crohn’s Patients. 

As you're going to be taking a vitamin D3 maintenance dose that's twice to three times the 5,000 IU/day dose in this pilot study, I'll make a SWAG your response with a reduction in Crohn's symptoms will be even better.  SWAG = Sophisticated Wild-Ass Guess based on over 10 years experience working with CHers taking this vitamin D3 treatment protocol.

Take care and please keep me posted.

V/R, Batch

 

 

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1 minute ago, xxx said:

Alan,

If you read through the info at VitaminDWiki on vitamin D3 and Crohn's at the following link, you'll find this treatment protocol my be just what you need to control your Crohn's.

https://vitamindwiki.com/Search+Results?hl=en&oe=UTF-8&ie=UTF-8&btnG=Google+Search&googles.x=0&googles.y=0&q=Crohn's&domains=vitamindwiki.com&sitesearch=vitamindwiki.com#gsc.tab=0&gsc.q=Crohn's&gsc.page=1

In particular, read the study titled:  Therapeutic Effect of Vitamin D Supplementation in a Pilot Study of Crohn’s Patients. 

As you're going to be taking a vitamin D3 maintenance dose that's twice to three times the 5,000 IU/day dose in this pilot study, I'll make a SWAG your response with a reduction in Crohn's symptoms will be even better.  SWAG = Sophisticated Wild-Ass Guess based on over 10 years experience working with CHers taking this vitamin D3 treatment protocol.

Take care and please keep me posted.

V/R, Batch

 

 

Thanks, I'll check it out the link. D3 is definitely one thing I get checked 2-3xs a year per my gastro. My Crohn's has been under control for a while, luckily. 

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  • 3 weeks later...

Hey Dagobah,

I agree with your doctor.  You need to stop taking vitamin D3 but continue taking all the vitamin D3 cofactor supplements.  The first question is,  How long do you need to stop taking vitamin D3?  The answer is based on answers to the next two questions.

1..  What is the frequency of your CH?  If you're essentially CH pain free, you should be able to coast without any vitamin D3 for at least a week and possibly two weeks without having the CH beast jump ugly then restart.  If you are still getting hit, what is the actual frequency of your CH?

2.  How much vitamin D3 were you taking for a week prior to the blood draw for these labs?  Whatever it was, I would cut that dose in half when I restarted taking vitamin D3.

There are a couple important things you can do to help lower your calcium serum concentration.

1. Drink at least 2.5 liters of water a day.  If you weren't drinking that much water during the 24 hours prior to the blood draw, this could easily explain the higher calcium serum concentration.

2. Avoiding intake of calcium rich foods like all dairy products will reduce the dietary calcium load and this will help lower the calcium serum concentration.  The 220 mg calcium in the Kirkland Adult 50 + Mature Multi should not pose a problem.

Bottom line, most CHers will face your present problem at one point or another with calcium serum concentration going too high while maintaining 25(OH)D3 serum concentrations as high as yours in order to remain CH pain free.  This becomes a balancing act to prevent your CH while not going bust on calcium serum concentration.  That will require close coordination with your doctor and frequent lab tests for calcium and PTH until you reach a stable vitamin D3 dose that prevents your CH without going bust on serum calcium.

This situation us usually due to an immune system response to allergens so that means reducing exposure to these allergens is a must.  Allergens can be environmental (pollen, mold spores, dust mite poo, industrial chemicals or some food types).  A short course of Benadryl (Diphenhydramine HCL) taken for a few days at 25 mg four times a day and Quercetin at 1000 mg/day can help reduce the effects of histamine released during an immune system response to allergens.

I know this sounds like a lot of work, but in the long run, if it keeps you CH pain free, it's well worth the effort.

Take care and please keep us posted.

V/R, Batch

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