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Batch regimen recently stopped working - help (Read 25707 times)
JT08
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Re: Batch regimen recently stopped working - help
Reply #50 - Dec 13th, 2019 at 12:39pm
 
Hey Batch, in desperate need of some guidance here. I got my test results back this morning and was at astronomical levels of D Serum - 311 ng/mL.  My calcium serum is at the very upper end but within normal range.  Reminder, I've been on a very extended loading does of 90K IUs of D3 for over a month now. As soon as I pull back even 10 IUs of the D3, I get hit like clockwork either at 1130am or in the middle of the night, or both. It quickly ruins half my day. Imitrex has been a lifesaver but still not great.

As suspected, my doctor was pretty unsure of me taking these high amounts of D3 and had some pushback. He did recommend to bring the D3 way down immediately and cited possible toxicity.

It's quite a conundrum because as soon as I pull back the D3, I'll be suffering on a daily basis. What else can I do? Go back to the Benadryl for the next few weeks? That helped when I took it for about 8 days at end of November. I've started 3mg of Boron. Been on B50 complex for several weeks now. I've changed the sheets, bedding, removed allergen possibilities, etc.

I usually get hit with headaches for 2-3 months at a time. this is about week 7 since this latest bout came back. Is it unsafe to continue taking such high levels of D3 through the end of the year to see if I can ride it out?

What else is left to try? Thanks as always for your advice.
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« Last Edit: Dec 14th, 2019 at 6:04pm by JT08 »  
 
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Re: Batch regimen recently stopped working - help
Reply #51 - Dec 15th, 2019 at 7:10am
 
Hey JT,

Thanks for the update.  Sorry you're still having problems.  My first suggestion is to relax, maintain the vitamin D3 dose that keeps you CH pain free and enjoy the Christmas season.  Although you're now the current record holder for the highest 25(OH)D3 serum concentration at 311 ng/mL on the anti-inflammatory regimen, your serum calcium is still within its normal reference range so there's no vitamin D3 intoxication/toxicity.  That said, you should be able to control your CH at a lower vitamin D3 dose so I suspect you've another condition or conditions cooking away.

To put this in perspective, Dr. Coimbra's MS patients on his protocol (very similar to mine except they take 1000 IU vitamin D3 per Kg body weight/day) don't even have labs for their 25(OH)D3 as they're off the scale, too high to measure), but they do measure serum calcium and PTH.

What is your current weight and BMI? Are you taking any other Rx or over the counter medications? If so, what are they and why are you taking them?

What you and your doctor do need to monitor is your parathyroid hormone (PTH) serum concentration.  It;s important to keep it low, but not in the single digits without frequent monitoring.  With your 25(OH)D3 at 311 ng/mL, it's obvious your labs are being done at Quest Diagnostics or another lab that uses the same Liquid Chromatography Dual Mass Spectroscopy (LC-MS/MS) assay for 25(OH)D. 

The LC-Ms/MS assay method is capable of a maximum measurment of 512 ng/mL of combined D2 and D3. As your vitamin D2 intake is likely nil, your 25(OH)D3 serum concentration can be measured as high as 512 ng/mL. 

If your labs are being done at Quest, then you need to create an account on "MyQuest" at the following link.  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register. It's free.  When you've registered, check for any indications of a PTH lab test.  If none are listed, call your doctor on Monday and ask for a lab order for PTH.  The labs for this regimen include the following:
  • 25-Hydroxyvitamin D3 [25(OH)D3]. CPT Code 82306. Quest Diagnostics Test Name: 92888-QuestAssureD 25-OH Vitamin D (Total), LC/MS/MS
  • Parathyroid Hormone (PTH) Intact and Total Calcium. CPT codes 83970, 82310
This will allow you and your doctor to monitor your serum 25(OH)D3, calcium and PTH over time as illustrated in my labs over the last three years.
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This 3-year log clearly illustrates my 25(OH)D3 has been elevated well above its normal reference range shown in greed to as high as 188 ng/mL. It's been averaging 150 ±5 ng/mL since I switched to the Bio-Tech D3-50 taking one capsule a week in January of this year.  You'll also note that my serum calcium remained within its normal reference range the entire time indicating no hypercalcemia, a.k.a., vitamin D3 intoxication/toxicity.

The interesting thing to note is my PTH trace. As you can see it mirrors the calcium serum concentration.  When serum calcium concentration goes up, the serum PTH concentration goes down.  This is a classic indication of normal calcium homeostasis.

In this case, less PTH means less 25(OH)D3 is hydroxylated in the kidneys to 1,25(OH)2D3, the hormonal form of vitamin D3 thatpulls calcium from the gut and/or bones to maintain serum calcium in its normal reference range.  As less 1,25(OH)2D3 is produced, less calcium is being pulled from the gut/bones.  In short, our parathyroid glands keep us from experiencing hypercalcemia while taking higher doses of vitamin D3.

I'm an old Navy fighter pilot so when things don't look right, I trade airspeed for altitude and climb up to look things over before making any serious decisions.  In your case, the high vitamin D3 intake and resulting high serum 25(OH)D3 concentration tells me your body is fighting inflammation and/or an allergic reaction in what I call a Calcitonin Gene-Related Peptide (CGRP) cascade.  CGRP cascades are usually triggered by histamine from an allergic reaction.  That makes histamine to a CHer like Kryptonite to Superman.

That a first-generation antihistamine like Benadryl (Diphenhydramine HCL) worked to lower the frequency of your CH is a good indication an allergic reaction is part of your problem.

As an allergic reaction is the likely culprit, the histamine released has turbocharged the neurons and glia in your trigeminal ganglia, hypothalamus and likely other parts of your brain to express CGRP, Substance P (SP), Vasoactive Intestinal Peptide (VIP) and likely pituitary adenylate cyclase activating peptide (PACAP). 

This is a cocktail of bad news to CHers as it triggers a circular chain reaction where these neuroactive peptides trigger the release of even more histamine and that histamine triggers the expression of even more of the bad news cocktail.  In the mean time, this cocktail of neuropeptides is causing neurogenic inflammation and uncontrollable CH pain.

There are three ways to stop this circular chain reaction.
  • Reduce exposure to the allergen to the greatest extent possible.  You've taken some steps here but there are others
  • Start a week to 10 day course of a first-generation antihistamine like Benadryl (Diphenhydramine HCL) at 25 mg X4/day.  You've already done that
  • Increase/titrate the vitamin D3 dose until you experience a CH pain free response.  You've done that too
I've gone over your posts so know you've already taken some steps to reduce your exposure to some allergens.  That said, I saw nothing in your last 14 posts about diet.  There's a better than even chance there's something in your diet causing an allergic reaction.  Accordingly, I would start the Atkins - Ketogenic diet asap. 

This combo diet is not as spartan as one might think.  For starters, no sugars of any kind and that includes fruit juices.  They're high in fructose and we don't need fructose.  No wheat products, bread, pasta, crackers, cookies, cakes or pizza.  Avoid grain oils like Mazola and Canola.  Not only are these the wrong kind of fats, they're also likely contaminated with glyphosate, a.k.a., the herbicide RoundUp.

Good fats include organic butter, lard, extra virgin olive oil, avocado oil and my favorite, extra virgin coconut oil.  You can eat all the organic meats, poultry and eggs you want.  A couple of servings of wild caught salmon, halibut and Ahi tuna is great.  You can also eat all the green and colored organic Non GMO veggies you want.  Limit fruits to a couple handfuls a day of dark berries like blueberries, blackberries, raspberries or grapes.

It's best to start this diet with a two day fast drinking only water and taking your supplements.  Doing this will burn through the glycogen (blood starch) stored in your liver.  Once it's gone you'll start metabolizing fat and when that happens, hunger pangs go away.

Some things you should do at this point to reduce the calcium load on your system include:
  • Avoid all calcium supplements. (the 200 mg in the Kirkland Adult 50+ is OK)
  • Avoid all calcium rich foods, i.e., all dairy products and most nuts
  • Drink at least 2.5 liters of water a day. This helps flush any excess calcium down the dumper.
I would also start taking Resveratrol and Quercetin as illustrated below.  Take as directed on the label.
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These two supplements increase the expression of the vitamin D3 receptors that attach to DNA strands to enable the genetic expression controlled by vitamin D3 that down-regulates the expression of CGRP, SP, VIP and PACAP, the neuroactive peptides responsible for the neurogenic inflammation and pain we know as cluster and migraine headache.

I would also add CoQ10, Turmeric (Curcumin) and Liposomal (fat wrapped) Vitamin C that stays in your system longer.
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These three supplements all act as anti-inflammatory agents.  Coenzyme Q10 revs up mitochondria and is good for the old ticker. The liposomal vitamin C acts as a potent antioxidant and a natural antiviral, antibacterial and antifungal agent.   Accordingly, I would mosey over to Costco today and pick up the additional supplements and keep your headache diary up to date so you can track any trends.  You can also order them from amazon.com.

The goal of all this is to remain CH pain free, but at a lower vitamin D3 dose.  It will take time for your 25(OH)D3 serum concentration to fall.  Data I've collected so far indicates our 25(OH)D3 burn rate under normal conditions, without any vitamin D3 supplements or cutaneous vitamin D3 from sunlight, drops at a rate of 15 ±5 ng/mL/month. 

If you're unable to remain CH pain free at a lower dose, see your doctor for a set of labs including the following and any other labs he thinks you need as there may be another condition cooking away:
BASIC METABOLIC PANEL
CBC (INCLUDES DIFF/PLT)
URINALYSIS, COMPLETE W/REFLEX TO CULTURE

A consult with an immunologist for allergy skin tests is another step in finding out what's cooking.  Finally, there are several physicians trained in the Coimbra Protocol here in the US.  The following link provides a map with contact data.  There may be one near you. 
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MS patients on the Coimbra Protocol take as much vitamin D3 as you're taking and many take even more.  It's a way of life for them

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Dec 15th, 2019 at 7:12am by Batch »  

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Re: Batch regimen recently stopped working - help
Reply #52 - Dec 16th, 2019 at 7:56pm
 
Thank you, Batch. You're a life saver. Copy that regarding continuing the D3 at needed dose. All of this explanation and context is very comforting and interesting learning experience.

Current weight is 175, and I'm 5 ft. 11 inch. BMI is 24.5 according to an online calculator I just used.

I've signed up at MyQuest and requested my results to be uploaded there. Seems like the doctor needs to approve first.

I've made another appointment with an allergist. Few months ago I did food allergy test and everything came back pretty negative. No real allergies. I'll go back for environmental stuff in a few weeks, as I suspect that's what could be bothering me.

Only prescription medication I'm on now is Finasteride to prevent hair loss. Take .25 mg once a day. Everything else I take is D3 regimen related.

I've actually eaten pretty close to a Keto diet for several years now. So I'll tighten up the restrictions on that.

And lastly I just received all the additional supplements you recommended. Starting those today. What's the mgs/per day on the Resveratrol you recommended? Inflammation is exactly what it feels like.. I'm not sure if that's the right way to describe it, but I frequently feel pressure in my head near my temples, eye, and back of skull when I'm in a cycle. It's almost like my head/brain are inflamed which has me feeling like I'm often right on the verge of another headache. Those feelings have been extra pronounced the past several weeks. And when I'm not in a cycle, they go away completely.

Is there any harm in doing another 10 days of Benadryl? I'll be traveling for Christmas and will be in a house with several pets and potentially new allergens. No idea how that will affect me, for better or worse, but perhaps the Benadryl helps as a preventative of things getting worse?

Thank you!
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Re: Batch regimen recently stopped working - help
Reply #53 - Dec 17th, 2019 at 6:42am
 
Update

As of this writing, I am in my 14th day of the loading dose regimen (50k iu/day of D3), seven days of which I’ve been using the recommended soluble D3 and methyl folate, and I have been pain free now for four days straight. In the 14 days after starting the regimen, I had 3 real bangers. Two of them were 4-hour “Why me? Woe is me!” KIP 9/10s that also included residual headaches the entire following day. (I must have been in “peak cycle”.) Needless to say, this was when I wished for oxygen. (Those two were also triggered or exacerbated by alcohol, which I have now completely cut out.)

The way I describe it is: I know I’m still in cycle, as I can still feel the beast occasionally “knocking,” but the vitamin regimen has reduced this knocking to a faint, polite, gloved, old lady’s knock rather than the Viking battering ram it would otherwise be.

My one question is this: I don’t have a PCP or GP doctor because I am an otherwise healthy 36 year-old and just have never (fortunately) needed a doc. Would a PCP or GP be able to order the lab tests AND prescribe the oxygen? And would one of those urgent care, doc in a box places work? Or how should I go about finding the right doctor?

Thanks again! So much, so much.
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Re: Batch regimen recently stopped working - help
Reply #54 - Dec 18th, 2019 at 9:24am
 
Hey JT,

Thanks for the reply to my questions.  Your weight, height and BMI are spot on and exactly the same as mine were prior to Thanksgiving...   Now I need to follow my own advice on diet. . . well, after Christmas.  I know how well it works. 

Another 10 days of Benadryl (Diphenhydramine HCL) is OK.  That said, William brought up a good point and another option in lieu of the Benadryl, the three month course of Vitamin B Complex.  The updated version of this treatment protocol (I hope to have it up on vitamindwiki.com for download before the end of the year), now suggests Methyl Folate plus in place of the vitamin B 50/100 complex.  It's a formulation of Methyl Folate, Methylcobalamin (B12), Niacin, B1, B2 & B6.

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These are the same B vitamins suggested by Dr. Stasha Gominak, MD in her headache and sleep regimen and Dr. Cicero Coimbra, MD, PhD, in his vitamin D3 treatment protocol for MS.  After the 3-month course of these B vitamins, there are sufficient amounts of the same vitamins in the Kirkland Adult 50+ Mature Multi to prevent any deficiencies.  There's no problem taking the Kirkland Mature Multi with the Methyl Folate plus.  It will just replete any deficiencies a little faster.

Regarding the Finasteride.  It could be part of your problem.  It's a 5α-reductase enzyme inhibitor that reduces the formation of dihydrotestosterone (DHT) and the molecule is small enough to cross the blood brain barrier.  This could have a downstream effect on vitamin D3 pharmacokinetics and pharmacodynamics.  Finasteride has a relatively short half-life of 6 to 8 hours so stopping it for 3 to 4 days should give you time to see if it's been reducing the effectiveness of vitamin D3 in preventing your CH.

Here's another thing to try, a sodium bicarbonate tonic.  This was one of the country doc's go to remedies for a wide number of ailments.  Sodium bicarbonate (Arm & Hammer baking soda) is a natural alkaline agent that elevates systemic pH to the alkaline side of neutral. 

As CHers and Migraineurs tend to have a low systemic pH, too much acid during their in-cycle periods, a sodium bicarbonate tonic made with a half teaspoon of Arm & Hammer baking soda in 4 oz of water taken every 2 to 3 hours might make a difference in getting your CH back under control.

Take care and please keep us posted
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Re: Batch regimen recently stopped working - help
Reply #55 - Dec 18th, 2019 at 4:02pm
 
Hey William,

Thank you for the update on the efficacy of the vitamin D3 loading schedule.  It's music to my ears and better yet, a testimony that will encourage other CHers to give this very safe and effective method of stopping the CH beast from jumping ugly a try.  Thank you also for reminding me about the Methyl Folate Plus.

Regarding finding a PCP/GP, great question.  My suggestion is to find a Naturopathic Physician near you by filling in the required information in the following link.

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Why a naturopath?  Simple.  They're doctors (ND not MD) who have graduated from one of the 7 accredited Naturopathic medical schools in North America. The curricula at an ND med school is roughly the same as the MD med schools with one major exception, NDs are taught a minimum of 150 hours of nutritional medicine, then there there's another class in nutritional science.  All that is followed by direct hands on work with patients. 

The MD will get at most, an hour of nutritional medicine and that is to tell patients to follow the very sad Standard American Diet (SAD).  The following two links will explain why the SAD diet is so dangerous.

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As MD med schools are heavily financed with large grants from Big Pharma, their curricula are biased to treatment of patients with a pharmaceutical solution and the majority of these pharmaceuticals treat only the symptoms, not the cause.

Accordingly, where the MD will turn to the school book solution taught in med school, to a man made pharmaceutical to treat what ails you, the naturopath will take a holistic approach to look for the cause of that ailment with a complete exam, lab tests, and a lot of questions to get a total picture of your overall health. 

With that information in hand, the ND will likely suggest a lifestyle change complete with diet, sleep and exercise.  The ND will also suggest or prescribe vitamin and mineral USP supplements to augment the diet.  The naturopath will only turn to a pharmaceutical as a last resort.

If push comes to shove - depending on your state's laws, you may be able to go to a medical diagnostic lab to request these three serum assays without a physicians lab order.  Some of these diagnostic labs have a resident physician who will write the lab orders. 

Accordingly, I would do an Internet search using the search terms "medical diagnostic lab" plus your zip code.  In some cases, the cash price for these labs is less than what they charge the medical insurance companies. Accordingly, when you do find a lab to do these three lab tests, it doesn't hurt to ask about their cost.

Hope this helps.  Take care and please keep us posted.

V/R, Batch
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Re: Batch regimen recently stopped working - help
Reply #56 - Jun 29th, 2021 at 4:33am
 
Good morning,

regards to all of you Smiley
This is my firs post but I'm reading you carefully for the last three years when I self diagnosed CH later confirmed by neurologist (for more than 10 years doctors treated sinus infection).

To make long story short, I've been on D3 regimen for almost a year now (started last summer when the beast hit hard on me), and I've been 9 months PF. Nice period of my life..

Now, started again.. no matter on regimen, I even tried Benadryl last 10 days + 50000 iu D3.. still hurts.

Is it possible that extreme summer temperatures wake up the beast?? Guess Benadryl will not help (we have around 36 - 38° C last two weeks in Croatia)

I'm desparate, don't know what to do anymore (we cannot get oxygen here, neurologist only prescribed some kind of corticosteroids but I really don't want to use these)

In April I tested 25(oh), was 247 nmol/L

Should I higher the doses of vitamins? Or?? Please help..  Cry

Many thanks,
Ivana
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Re: Batch regimen recently stopped working - help
Reply #57 - Jun 29th, 2021 at 6:31am
 
G'day, Ivana.  Welcome,  and it's so terribly sad the beast is treating you badly.

Have you noticed previous comments about using Red Bull as a possible abortive?  Tastes awful,  I know,  but chug-a-lugged down at the first hint of a hit it has been known to give many CHeads a bit of a break.  Something to do with the caffeine/taurine mix and many people swear by it.

Hanging your head under a seriously cold shower also helps many,  though others swear by using a boiling hot shower instead.  Some of us switch between hot and cold which seems to confuse the monster completely so it goes away.

Sudden and strenuous exercise is known to be a help,  though others find it to be a trigger so everything depends on what works best for you.

Please let us know how you're getting on with things because we care,

Brian down under.




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Re: Batch regimen recently stopped working - help
Reply #58 - Jun 30th, 2021 at 9:48am
 
hot cup of coffee first sign of pain a/c in your car breathing that in always helped me.

Mark.
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Re: Batch regimen recently stopped working - help
Reply #59 - Jul 1st, 2021 at 7:49am
 
Thanks Brian & MDR,
Will try with Red Bull & coffee, a/c definitely makes it easier.
Melatonin helped two cycles before, attacks stopped completely in a few days, but don't work anymore. Angry
I'll keep with D3 & will add Benadryl for few days again.


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Re: Batch regimen recently stopped working - help
Reply #60 - Jul 2nd, 2021 at 3:21pm
 
Hey Ivana,

What you're experiencing where the vitamin D3 anti-inflammatory regimen is not working to prevent your CH like it did earlier is actually quite common.  For some reason, usually an immune system reaction to allergens, neurons and glia in the trigeminal ganglia go into what I call a Calcitonin Gene-Related Peptide (CGRP) cascade, producing more CGRP than the present 25(OH)D3 serum concentration and maintenance dose of vitamin D3 can handle.

I've worked this problem with several CHers, myself included and the solution is simple.  You need to elevate your 25(OH)D3 serum concentration higher by starting an accelerated vitamin D3 loading schedule with higher doses of vitamin D3.

For starters, you need to have the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 as shown in the following photo if you don't already have it.

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You'll also need a bottle of Micro D3 drops shown below. I order it from amazon.com

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The loading dose I now suggest is two (2) of the Bio-Tech D3-50 capsules/day (100,000 IU/day) and 0.5 cc (40,000 IU) of the Micro D3.  The micro D3 has an even higher bioequivalence than the Bio-Tech D3-50 so this elevates your 25(OH)D3 rapidly.

Stay at this loading dose until you've been CH pain free for at least two (2) days then taper the loading dose by droping the 0.5 cc of Micro D3, but keep taking the two (2) Bio-Tech D3-50/day for another 3 to 4 days.  If your CH stay away, you can drop back to one (1) D3-50 a day for another week then drop back to one (1) D3-50/week as a maintenance dose.  Be sure to take all the supplements shown in the first photo.  If your CH return during this taper, return to the previous loading dose for another 3 to 4 days then restart the taper.

It's also best to double the magnesium dose while loading by taking 400 mg with breakfast and 400 mg with the evening meal.  This provides 12 hours and 12 feet of GI tract separation between magnesium doses to help prevent osmotic diarrhea.

It's important to see your PCP for lab tests of your serum 25(OH)D3, calcium and PTH when you're done loading and CH pain free.  Don't be surprised at the new 25(OH)D3 serum concentration as it will be much higher than usual.  Your PCP will likely have his or her knickers in a wad if your 25(OH)D3 comes back over 150 ng/mL.  Not to worry. As long as your serum calcium remains within its normal reference range there's no hypercalcemia, a.k.a., vitamin D3 intoxication/toxicity and your PTH (Parathyroid Hormone) is between 15 and 10 pg/mL, your good to go and the actual 25(OH)D3 doesn't really matter except as a reference point the next time you experience a CGRP cascade.

I experienced the same CGRP cascade problem in April and May due to a high pollen count so kept titrating my loading dose up to 100,000 IU/day of the Bio-Tech D3-50 and 0.5 cc/day (40,000 IU/day) of the Micro D3 for nearly two weeks in mid-May to remain CH pain free.  The following 4-year chart of my labs for 25(OH)D3, calcium and PTH tells the story.

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The inverse relationship between serum calcium and PTH is interesting.  This is a classic example of calcium homeostasis in action preventing too much serum calcium - hypercalcemia.  This also indicates I'm getting the maximum therapeutic effect from the vitamin D3.

When my PCP received my lab results, he commented that my 25(OH)D3 was higher than usual, but as my serum calcium was within its normal reference range, my PTH not too low, and the rest of my annual physical labs were in the green, he had do problem with my 25(OH)D3 up at 277 ng/mL.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Jul 2nd, 2021 at 3:30pm by Batch »  

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Re: Batch regimen recently stopped working - help
Reply #61 - Jul 3rd, 2021 at 4:59pm
 
Wise to consult your doctor before taking this huge, and potentially dangerous dose of D3.   Below are some genuine medical reports from real scientists and doctors who have studied Vitamin D3 toxicity. Well worth reading and discussing with a medical professional in advance.

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Re: Batch regimen recently stopped working - help
Reply #62 - Aug 2nd, 2021 at 4:52pm
 
Hello Batch,
I am fairly new to this regimen and I am little bit confused.
You mentioned above that one should usually avoid calcium supplements, since D3 dosage increases calcium blood content, but in the list of supplements, listed at the first post of the "D3 regimen thread", there is calcium (220 to 500mg/day). Perhaps I am looking at an older version of it.
Also does vitamin K2 act as a calcium blood level regulator, i.e. it prevents hypercalcemia.
I took high vitamin D3 doses a few years back, without any other supplements, and started having severe mental health problems, consistent with hypercalcemia, which stopped after discontinuing the high D3 dosage. I would very much wish to avoid that.
Thank you very much in advance.
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Re: Batch regimen recently stopped working - help
Reply #63 - Aug 17th, 2021 at 5:36pm
 
Hey Stefan,

There's no need to avoid calcium rich foods or calcium supplements at the maintenance doses called for in this treatment protocol.  It's when you start going over a vitamin D3 maintenance dose of 500 IU/Kg ~ 40,000 IU/day that reducing the calcium load becomes prudent.

Regarding hypercalcemia, in the 10 years I've been providing information outreach to thousands of CHers and their doctors on this vitamin D3 treatment protocol, I have yet to see a report of hypercalcemia.  The 25(OH)D3 serum concentration is a very poor indication of hypercalcemia, a.k.a., vitamin D3 intoxication/toxicity.  The only commonly used laboratory assay used to determine hypercalcemia is a serum calcium concentration greater than the normal reference range.  A 24 Hr urine collection can also be used as a secondary measure.

I've routinely kept my 25(OH)D3 around 150 ng/mL and recently as high as 277 ng/mL, yet my serum calcium concentration has always remained within its normal reference range as illustrated in the 4-Year chart of my labs for 25(OH)D3, calcium and PTH (Parathyroid Hormone).

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My PCP has no problem with my 25(OH)D3 serum concentration even at 277 ng/mL as my serum calcium has always remained within its normal reference range.  A 24 Hr Urine collection found my urine calcium well within its normal reference range so I wasn't dumping calcium in urine.

I try to maintain my PTH serum concentration between 10 and 15 pg/mL as this indicates I'm getting the maximum therapeutic effect from vitamin D3.

It's strongly advised to take all the vitamin D3 cofactors illustrated by brand and dose in the following photo of supplements I take and suggest to other CHers.

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One of the more important vitamin D3 cofactors is magnesium.  We need at least 400 mg/day while taking vitamin D3 as the enzymatic processes that hydroxylate vitamin D3 to 25-Hydroxy vitamin D3 consume magnesium rapidly.  Without magnesium supplements, vitamin D3 will decrease serum magnesium concentrations rapidly leading to a poor calcium-magnesium ratio resulting in muscle cramps.

Take care and please keep us posted.

V/R, Batch
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Re: Batch regimen recently stopped working - help
Reply #64 - Aug 9th, 2022 at 4:12pm
 
Hello Everyone, Batch!!

Been a while since I have been on here but like a lot of us....the beast brings us back to the comfort zone. I have not stoped the regimen at all since I started it years ago and I have sailed through years of being pain-free; 8 years to be exact!! For reasons unknown, the beast hit me a week ago and it hit me hard. Never in my life have I had more than one hit a day but now I am getting hit 3-4 times a day and at high KIP.  I have raised my doses to the loading numbers for the past 7 days and no improvement. After reading a little, I will also order some Benadryl for
now. Dunno what else to do at this point. Pain-free wishes to all!

-Andy
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Re: Batch regimen recently stopped working - help
Reply #65 - Aug 14th, 2022 at 4:49pm
 
Hey Andy,

Sorry to hear the CH beast is jumping ugly and knocked you out of CH pain free bliss.  This happens and it has happened to me with my 25(OH)D3 serum concentration at 150 ng/mL.  The likely reason is an immune system response to allergens.

The first step is to see your PCP and ask for labs of your serum 25(OH)D3, calcium and PTH.  I would also ask for the hs CRP (High-sensitivity C Reactive Protein) assay.

it's a safe bet you're battling an immune system response to allergens.  When insulted by allergens, the immune system's Mast Cells degranulate (spit open and dump their contents) releasing large quantities of inflammatory mediators as illustrated in the following graphic.

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Leading this pack of inflammatory mediators is Histamine.  Histamine to a CHer is like Kryptonite to Superman - Bad News as none of the standards of care preventatives like verapamil, MM or vitamin D3 will work when we're insulted by histamine.  That means you need to treat the immune system response to allergens.  This is where the Antihistamine Full Monty comes into play.

The Antihistamine Full Monty is a collection of supplements with antihistamine properties that include 3 grams/day each as a loading dose of Turmeric (Curcumin), Resveratrol, Quercetin and Omega-3 fatty acids.  It also includes 200 mcg/day Selenium, 8 grams/day vitamin C and 5 mg/day Melatonin taken at bed time.   If there's no response in a week, I would add 200 mg/day CoQ10 and 5 grams/day D-Ribose.  Both boost mitochondria health. You can mix the D-Ribose with water and drink it.  As a sugar, it will taste slightly sweet.

Take the loading dose for five days or a significant reduction in CH frequency whichever occurs first, then taper to 2 grams/day for another five days then taper to 1 gram/day.  I tapered to 1 gram/day of the first four supplements in March and I'm still taking them.  Dealers choice on the Selenium, but I still take the Melatonin occasionally at bedtime and 8 mg/day vitamin C daily.  If you're wondering about vitamin C, watch the video of Linus Pauling titled Preventing Illnesses and Diseases with Vitamin C at the following link.

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I buy the bulk powdered vitamin C in 1 Kg bags and stir 2 level teaspoon measures in 8 ounces of water and take sips all day until it's gone by bedtime.  This is the least expensive form of vitamin C and dosing throughout the day is best as our kidneys filter vitamin C rapidly.

I realize this is a boatload of pills to take, but the Full Monty is proving to be very effective in achieving a CH pain free response during allergic reactions as an alternative to Benadryl.  Most CHers respond to the Antihistamine Full Monty during the first week.   You can discontinue the Antihistamine Full Monty following at least two weeks CH pain free, but keep these supplements handy.  You never know when the next allergic reaction will happen.

Take care and please keep us posted.

V/R, Batch
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Re: Batch regimen recently stopped working - help
Reply #66 - Aug 21st, 2022 at 3:53pm
 
Batch,

Thanks for the reply. Im not sure I understand the dosage correctly when you put it in grams so I will describe what I am doing in different measurements.

First off, I will be ordering the 4 blood tests today to hopefully get them done by the end of this week. Secondly, yesterday was my 10th day on the Benadryl, I have no changes to the CH yet. I have two days since I tapered my D3 intake from the loading dose down to 20,000IU daily. I must add that I have several years taking additional supplements to the regimen. These are daily: 500mg Bromelain, 1000mg Turmeric Curcumin, 2000mg Quercetin and 3000mg Kudzu Root. I beleive that I should raise these doses temporarily?

I also beleive that this is very important to point out............. I am fully vaccinated against covid-19 (two shots, plus a booster shot). Even being fully vaxxed, I contracted Covid on July 9th. I tested clean from Covid on July 20th. The Beast came back on July 28th. Coincidental? maybe. But I feel a little suspect on it all. Today will be my 25th day straight with the beast visiting me. Yesterday was hell  Smiley.

I will share the results of the blood work as soon as I have them available. Again, thank you for your time and guidance!

Pain-free wishes to all!  Smiley

-Andy
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Re: Batch regimen recently stopped working - help
Reply #67 - Aug 22nd, 2022 at 4:25am
 
Andy,

You're fighting two devils.  The cluster beast is bad enough, but manageable for most Chers following the anti-inflammatory regimen treatment protocol.  Three jabs of the COVID-19 mRNA biologic coupled with an infection likely by the omicron mutant variant, doubles the degree of difficulty in controlling and preventing CH with this treatment protocol. 

The COVID-19 mRNA jab and an omicron infection both cause inflammation and on top of that, they weakening your innate and adaptive immune systems.  Accordingly, you're going to need larger loading doses and maintenance doses of vitamin D3. You'll also need the Full Monty supplements.  Adding at least 200 mg/day CoQ10 and 1000/day mg NAC (N-Acetyl Cysteine) will also help.

You've already see your PCP to obtain assays of your serum 25(OH)D3, calcium and PTH.  That's great! You'll also need the hs-CRP (High-sensitivity C-Reactive Protein) assay the next time you see your PCP.  It's a safe bet your CRP will be elevated.  Once we have the results of your assays, we can compute a new total loading dose and schedule.  You'll need the Bio-Tech D3-50 and also the Micro D vitamin D3 nano emulsion.

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In the mean time I would up the vitamin D3 maintenance dose to 50,000 IU/day with the Bio-Tech D3-50 along with all the cofactors and continue the Full Monty supplements plus the CoQ10 and NAC.

Take care and please keep up posted.

V/R, Batch
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Re: Batch regimen recently stopped working - help
Reply #68 - Aug 29th, 2022 at 6:09pm
 
Good day, Everyone! 

Batch...

So I got my blood results in this morning. This is what it all looks like:

HS-CRP  0.6 mg/L
Calcium Serum  10.3 mg/dL
PTH Intact  30 pg/mL
D, 25-OH   >150 ng/mL

I am currently still on the loading doses of the regimen (been loading for 3 weeks) plus the full monty and added the Methyl Folate+ in lieu of the benadryl.
I am still getting hit, but I feel like the intensity of the pain might be going down. They are around kip 5 to 6 on average. Your guidance is greatly appreciated.

pain-free wishes to all.
-Andy
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Re: Batch regimen recently stopped working - help
Reply #69 - Oct 9th, 2022 at 10:02pm
 
Hey Andy,

Sorry for the delay in responding.  I've been on travel all of September.

Your labs look fine.  Howz the head?

Take care,

V/R, Batch
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Re: Batch regimen recently stopped working - help
Reply #70 - Oct 13th, 2022 at 11:51pm
 
Batch,

I hope your travels were for pleasure rather than business as you well deserve!

As far as the noggin; the last day I got hit was Sep 6. Nothing since.

I am curious and wondering why I was still getting hit even though my labs are where they should be.

I have now finally weaned back to the 10k IU maintenance dose of D3 and am doing well.

Anyways; I suppose a new schedule is not needed as it seems that im keeping good track on my levels.

Thanks again for the help and any advice is always welcome!

-Andy
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Re: Batch regimen recently stopped working - help
Reply #71 - Dec 5th, 2022 at 10:08am
 
Hey Andy,

Howz the head now?  Hope you had a wonderful Thanksgiving.  We sure did. 

The reason you were still getting hit with a 25(OH)D3 >150 ng/mL was the elevated hs-CRP.  As suspected, the hs-CRP indicated you were battling inflammation.  We're not sure of the actual mechanism of action associated with inflammation triggering CH and making CH more difficult to control. 

I'll make a SWAG it's an immune system response where the immune system's white blood cells consume available vitamin D3 and its first metabolite 25(OH)D3 more rapidly leaving too little to control CH.  We've seen this happen many times.  When it does happen, the best course of action is to increase the 25(OH)D3 serum concentration with loading doses and a higher maintenance dose.  SWAG = Sophisticated Wild-Ass Guess.

Take care and please keep us posted.

V/R, Batch
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Re: Batch regimen recently stopped working - help
Reply #72 - Dec 10th, 2022 at 11:35pm
 
Batch,

Your SWAG is unmatched by any theory. The head is fine now and I had a great Thanksgiving and I'm hoping for a great Xmas and new year.  I suspect that the Covid shots plus boosters may have brought back the beast for me. Although I don't advocate against the vaccines for every one reading this.

So now I chose to stay away from the vaccines and continue the daily regimen....personally.  every one is different and we should all adjust as such. That is my version of the SWAG.

Anyways, thanks again, Batch and may the force be with you always.

My best regards,
Andy
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Re: Batch regimen recently stopped working - help
Reply #73 - Dec 11th, 2022 at 3:51pm
 
Andy,

You've made a sound choice based on the available credible information.  Have a Very Merry Christmas and a Happy and Healthy New Year.

V/R, Batch
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