D3 regime after 6 weeks - advice needed

[Tsmith]

Hello Everyone,
I have not reached a CH pain free point and I have been following the Batcheller D3 regime for 6 weeks now. I have noticed a slight change in frequency of headaches and less severity. Before the regime I was averaging 3.52 headaches per day. Now the average is 2.28 per day.  I still use O2 as needed and it always aborts the CH in about 10-15 minutes.
Here is my data.

Before starting regime:
Lab: My Serum D level was 24.

For 6 weeks I have been following the  D3 regime with 50,000 IU D3 / day + all cofactors as recommended by Dr. Batcheller + Coenzyme Q-10.  I am still on this level of D3.
Days 8-17 added Benadryl (stopped after 10 days)
Day 12 added Vitamin C
Day 32 added Quercetin

Lab: At Day 32 Serum D level - 150 (Calcium + PTH within normal range)
Day 35 added Resveratrol
Day 36 added Turmeric

I will be getting another lab following the previous lab at a 4-week interval to see where my D3, calcium, and PTH levels are. My headache doctor is on board with this and watching to note the results.

So my question -- I am looking for what I might do next? Is there an additional cofactor to add? I intend to keep up the regime as it is now with  D3 50,000 per day.

 

[Dallas Denny]

@xxx, can you help here Pete!!

DD

[xxx]

Hey TSmith, Gotcha DD,

You're doing great with respect to compliance (following the protocol) and keeping your PCP/GP in the loop.  I love it when doctors are supportive of CHers starting this regimen.  Your labs for 25(OH)D3, calcium and PTH are looking great.  They also tell me you're likely battling inflammation with a 25(OH)D3 at 150 ng/mL and no clear reduction in CH frequency.  I've been knocked out of CH remission with a 25(OH)D3 serum concentration around 120 ng/mL by allergic reactions.  In both cases I needed to load vitamin D3 to elevate my 25(OH)D3 to around 188 ng/mL to experience a CH pain free response.  One of those cases occurred in June of 2018 as you'll see in the 3-year chart of my labs for 25(OH)D3, calcium and PTH.

There are a few things we've found over the last 10 years that act as speed bumps on the way to a CH pain free response.  The single largest speed bump is the inflammatory burden that can come from several sources like infections (bacterial, viral or fungal), allergic reactions to something in your environment or diet, trauma, surgery. and in some cases Rx medications.  Are you taking any other Rx medications.  If so, for what reason. 

As effective as vitamin D3 and its cofactors can be in preventing CH, there are obvious times when the inflammation burden is too great to overcome. Under these conditions, our immune system has likely activated and that adds an entirely new dimension to the problem.  The following notional graphic illustrates an overly simplified example.

What this graphic illustrates is there are times when the CH threshold 25(OH)D3 serum concentration shown in red, exceeds the actual 25(OH)D3 serum concentration shown in green.  When that happens, we get hit.  It's also important to note that the CH threshold is not constant even at a constant vitamin D3 maintenance dose.  It varies in response to immune system activity.  The 25(OH)D3 serum concentration also varies over time due to this same reason. 

Most people think the innate and adaptive parts of our immune system are mostly the various white blood cell types (leukocytes) and the antibodies they produce.  In reality our immune systems are comprised of our skin, the mucosal membranes lining our GI tract, respiratory tract and urogenital tract.  We also have colonies of bacteria living in our GI tract called the microbiome.  Most of these colonies are friendly, but some are not.  This is where diet and a good probiotic come into play.  A diet that avoids sugars and wheat products helps lower the inflammatory burden and the probiotic helps ensure a favorable balance of these bacterial colonies are friendly.

There are three solutions to your problem.  Overpower the inflammation with higher doses of vitamin D3, Turmeric (Curcumin), Omega-3 PUFAs, and 6 mg/day boron or go after possible sources of the inflammation with higher doses of vitamin C, Quercetin, zinc, CoQ10, Methyl Folate +, diet and a good probiotic, or a combination of the first two options.  Accordingly, I would bump the loading dose to 100,000 IU/day for a couple days to see what that does to your CH pattern.  If there's a drop in CH frequency, you're on the right track.  If there's no change in CH frequency, drop back to 50,000 IU/day for another week then back down to 50,000 IU/week as a maintenance dose and go in for another round of labs for 25(OH)D3, calcium and PTH.  Be sure to drink at least 2.5 liters of water a day.  I would also start taking 6 to 12 grams/day vitamin C split 2 to 4 grams three times/day.  I take 10 to 12 grams/day vitamin C routinely.  Vitamin C is a potent antiviral as is the zinc picolinate at 50 mg/day that I take.  The Quercetin is also a potent antihistamine at 8 to 12 mg/day.

It's also important to make sure you're taking the supplements illustrated by brand in the following photo.

The other suggested supplements are illustrated in the following two photos.

Take care and please keep us posted.

V/R, Batch

[Tsmith]

@xxx
Thank you for this information to adjust the regimen. My change now will be:
D3 - additional 50,000 for two days
Turmeric - up from 2 pills to 3
Omega 3 - up from 2 to 3 pills
Boron - adding 6 mg per day ( I have ordered this).
Probiotic - ordered
Zinc - ordered.

Diet: I am stopping anything sugary to include foods with added sugar on the label, etc.
Alcohol - two glasses of wine per day
Water: 2.5 liters per day

I have a lab coming up in a couple of weeks.
I am using the specific products you listed.

Thanks again. Let's see what happens as far as achieving a pain free level with these changes.

Tsmith

 

[xxx]

Loading at 100,000 IU/day for two days should elevate your 25(OH)D by 20 ng/mL which should bring your total serum 25(OH)D3 serum concentration up to 170 ng/mL.  It takes roughly 24 to 36 hours for each dose of vitamin D3 to be hydoxylated by the liver to 25(OH)D3 so if there's no response 24 to 36 hours after the second loading dose of 100,000 IU vitamin D3, I would be tempted to add one more day at this loading dose.

Of course a trip to your PCP/GP for another round of labs for your serum 25(OH)D3, calcium and PTH will be in order one way or the other in a week or two.

The rest of your plan looks sound.

Please keep us posted.

V/R, Batch

 

 

Edited November 9, 2020 by xxx

[Tsmith]

@xxx
Batch,
I'm doing the list of supplements described in my last post and so far have not achieved a pain free level. I am having fewer attacks and of less severity. I did a 100,000 D3 for 3 days as you suggested and am now back to 50,000 daily.  I forgot to mention in my last post that I take daily heart medications: 20 mg avatorstatin and 30 mg lisinopril. Any chance that these are having an interaction with the supplements? I'll be doign a lab in two weeks.  Thanks again!

Tsmith

[xxx]

Hey TSmith,

Sorry to be so slow in responding.  My bird dog must have missed your post or I missed its email alert.

My suggestion is to see your doctor for the lab tests of your serum 25(OH)D3, calcium and PTH. If your serum 25(OH)D3 is still over 150 ng/mL and your serum calcium still in the normal range, there's something else going on.

Reviewing the bidding.  From your earlier post, you indicated you were taking the supplements illustrated in the following photo.  The Bio-Tech D3-50 is proving to be faster acting with a higher bioequivalence in elevating serum 25(OH)D3 than the same dose of the oil-based liquid softgel vitamin D3 formulations.  The Methyl Folate+ is proving to be more effective as well for the same reasons.

You're also indicated you're taking the following supplements in the next two photos.

If you're taking all of the above, please let me know.  There are a few more supplements and an additional lab test that may point us in the right direction to getting you CH pain free.

The next supplement to add is N-Acetyl-Cysteine (NAC).  It is a precursor to L-Cysteine.  This is an amino acid that enables the enzymatic processes that among other things, up-regulates the expression of the vitamin D receptor (VDR) molecule. 

VDR attach to molecules of the vitamin D3 metabolite, 1,25(OH)2D3 at the cellular/nuclear level and that enables vitamin D3 to attach to a strand of DNA to initiate genetic expression.  It's this genetic expression that helps prevent CH.  In short, no VDR and there's no genetic expression no matter how high the 25(OH)D3 serum concentration.  I order the NOW NAC at the following link.

https://www.amazon.com/Now-Supplements-N-Acetyl-Cysteine-1000-Tablets/dp/B00KT3H13C/ref=sr_1_4?dchild=1&keywords=L-Cysteine&qid=1605713283&sr=8-4

Again, it's very important that we see you labs for 25(OH)D3, calcium and PTH. 

Take care and please keep us posted.

V/R, Batch

Edited November 18, 2020 by xxx

[Tsmith]

@xxx
Hi Batch and thank you for your response. I am taking all of the supplements you have recommended in the photos as well as additonal zinc. I am scheduling a lab for early next week. Were you suggesting an additional lab test to add to the D3, calcium, and PTH? I can also try adding the NAC suppment you suggested.

Tsmith

[xxx]

Yes.

[Tsmith]

@xxx
 

Hi Batch and Everyone,

A couple of updates on the D3 regimen.  I get my labs through Compunet and the  results they give back for D3 at the highest level are shown as >150, but do not give me a specific number above that. My Dr. replied that this was all the lab could do. So now I need to find out if other labs might provide more specificity and inform my Dr. about this.

On the Ratio test, I have not gotten this one, but my Dr. said this could be done with a calculation using the current data. Are you aware of this approach?  I am still waiting to hear back on this one. I'll do basic another lab in January: D3, calcium, PTH.

Basic daily feedback: still having headaches 1-3 per day. Exertion and cold tempperatures often bring them on, but not always. Every now and then I get one at night that wakes me up, usually around 1 or 2 AM. Frequency and severity are definitely decreased.

Thanks,

Tsmith

[kat_92]

@Tsmith hey! I was reading your post and catching up. So, I myself have never achieved a complete pain free level with the D3 regimen and I have been on it every day for almost 2 years. However, ANY change in your headaches are signs that the regimen is working. I envy people that get complete relief with this regimen. It is a good sign that the severity has gone down though. Thank the regimen for that! Have you tried adding some Benadryl to the regimen? Maybe to help with that night time attack. I switched from melatonin every night to Benadryl a few months back. Can’t say it’s made a huge change in my headaches but I don’t feel super groggy the next morning. Please continue to update. I am chronic btw. Shadows all day every day, with ramp ups in severity a few times per year. I also bust with MM and that has been a huge help. 

Kat

[xxx]

Hey Tsmith,

Your doctor needs to order your labs from Quest Diagnostics.  Their lab for 25(OH)D goes up to 512  ng/mL.  To my knowledge, the lab for the 25(OH)D3:24,25(OH)2D3 ratio is only available from Quest with a special form.

I'd switch from Benadryl (Diphenhydramine HCL) to 800 mg/day Quercetin.  Staying on Diphenhydramine for more than 10 days is not advised.  Among other things, Quercetin in a good antihistamine.

See my PM.

Take care and please keep us posted,

V/R, Batch

[Tsmith]

@kat_92

Hi Kat and Thanks for the information on your D3 progress. Yes I did try benedryl for a 10 day period, but didn't see any results. I am currently doing Quercetin in its place. I haven't done an MM bust in over a year, but even then didnt see a change afterward. My chronics continue but somewhat less than before D3.
Tsmith

[freester]

Sorry to hear that Vitamin D isn’t solving the problem. I’m chronic and did everything you did with the same response. In fact the high doses of Vitamin D seem to make it worse at times. I’m currently busting and have done it twice with limited response. I expect that it will take 4-5 more busts to get some results. Chronics usually need more busts so I’m hoping this will help. 

[xxx]

Hey Freester,

Did you manage to obtain a lab test of your 25(OH)D3 serum concentration before stopping the anti-inflammatory regimen? 

After 10 years providing information outreach on the benefits of this 10,000 IU/day vitamin D3 plus cofactors regimen in preventing CH and receiving feed back from most, I've found that among the 18% who didn't respond in the first 30 days and who stopped taking this regimen, nearly all had failed to obtain the 25(OH)D3 lab test. 

In short, these CHers had no idea if they had elevated their 25(OH)D3 serum concentration into the therapeutic region between 80 ng/mL and 140 ng/mL as illustrated in the following normal distribution curve for reported 25(OH)D3 lab tests among 313 CHers responding to this regimen.

Since switching recommendations to the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 in June of 2018 and switching to the Methyl Folate + from the vitamin B 50/100 complex, in January of 2019, the favorable response rate has risen significantly.  Survey results for 2019 and 2020 indicate a jump from 83% to 89% of CHers responding within the first 30 days with at least an 80% reduction in the frequency of their CH.  What is even more impressive is CHers experiencing a complete and lasting cessation of CH in the first 30 days jumped from 53.6% to 66.7% during 2019 and 2020.  I've tracked all the RCTs on CH prophylaxis, none of them have reported 2/3 of CHers participating in these studies achieving a lasting cessation of CH.

Take care and please keep us posted.

V/R, Batch

 

Edited December 17, 2020 by xxx

[freester]

Hi Batch,

I did check my vitamin D and it was 140 ng/ml. Have you ever heard of Vitamin D worsening the attacks?  I’m not responding to hallucinogenics either. 

[Mark101]

I've literally learned about all these treatments for ch.  Alot info i don't get lol. Who would I see about this? A naturopath doctor?

Cheers

[spiny]

Mark, you or your PCP can order the test for D3, calcium, and PTH. You can begin the regimen and get tested in a week or two if that is the way the chips fall. Getting on it quickly is one objective. 

See the first picture that XXX, batch, put up of six vitamins? Buy those and take as he directs. That is the base of the Regimen. That should simplify it enough to begin by yourself I hope. Those vitamins are available most everywhere. The K2 can be a problem to locate, but is easily ordered from Amazon. If you cannot find the particular D3 Brand that is now recommended, use another brand of the same strength - 50,000 units.

If you can only get 5 of the 6 today, get them and take them. The D3 can be found all over, but usually in smaller doses like 5,000 or 2,000. If that is the case for you, then take enough to bring it up to the 50,000 recommended. I take 10k everyday for 3/4 of the year and in winter - like starting this week, I up that to 15,000 per day. I have been on it for years now with great success!!!!

Yes, it is pretty stinking amazing that vitamins can do what pharma cannot. 

[Kylo]

An important detail that wasn't addressed: 

Alcohol is likely the missing link here, and probably what kept you from improving. You mentioned 2 glasses wine/day. Wine/alcohol is one of the biggest triggers. This is probably why this didn't work - though I hope you're feeling better now!