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AlanK

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Posts posted by AlanK

  1. 3 minutes ago, Bejeeber said:

     

     "....with BOL-148 we have to conduct an ascending dose Phase I trial, which we’ll be starting next quarter. We plan to share top line data from the study in the first quarter of next year, and then we’ll move straight onto Phase II..."

    So highly appreciative that this is occurring, while also remaining exceptionally jaded (after so many false starts and disappointments) regarding the question of whether we will ever get our hands on this non hallucinogenic super LSD / super busting substance that has clinical trials dating back to the 1950's

    I checked clinicaltrials.gov to see if it was listed. Nothing there, guess not ready to announce officially or it's private? 

     

    I'd be happy to get a compound that acts like L but with the duration of MM.

    • Like 1
  2. 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. 

  3. 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 

  4. 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.

  5. 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 ✌❤

    • Like 1
  6. 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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