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Batch regimen recently stopped working - help (Read 10633 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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Batch
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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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JT08
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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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William
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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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Batch
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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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