Need your ideas

[Maryo52]

I've been living the blissful life of no attacks for five and a half years (Vit D regimen). But . . . Late July developed an infection in my artificial knee, surgery with antibiotic washout, IV antibiotics for six weeks, now on oral antibiotics for six months. So many medications were put into me. I got through it all and just when I started to see the light of day, the attacks returned. I have upped my Vit D well past the level that worked and attacks are horrible, four a night. No sleep some nights. Got back the big O2 tank, came with regulator that went to 8 liters, quickly phoned and arranged an exchange. No other abortives in my household (except ice packs). I've been battling pain/illness for seven weeks and have battle fatigue. I'm 69.

My PCP gets a little overwhelmed with my cluster disease. I've arranged an appt. with my neurologist on Monday so that's good. Neuro has lots of books in his office. One huge book was simply titled "Vitamin D." I knew he was my guy. He'll come up with ideas and my PCP prescribes accordingly. So that works OK even though it's taxing to my PCP.

I know about busting and had a failed attempt at growing fungi 5-6 years ago. Even if I got it all lined up, it would be weeks before I'd be able to try that route. And I would like to. Is there a handbook of some kind with all the necessary details? Is m-----ALT available anywhere in the US?

Any other ideas to help me endure this punishment?

Thanks and love

 

 

[BoscoPiko]

No clue other than to tell you your not alone...

[xxx]

Hey Maryo,

The infection triggered an immune system response that reduced your serum 25(OH)D3 concentration below the therapeutic threshold for CH.  All you need to do is start a vitamin D3 loading schedule.  This will elevate your serum 25(OH)D3 back above the CH threshold and you'll be back CH pain free in no time.

The newest and most effective loading schedule calls for 100,000 IU of Bio-Tech D3-50/day and 0.5mL/day of the Nutrasal Micro D3 (40,000 IU/day) taken under the tongue (Sublingual).  You can order both from amazon.com at the following links

https://www.amazon.com/Bio-Tech-Pharmacal-D3-50-100-Count/dp/B000A0F2B2/ref=sr_1_6?dchild=1&keywords=Bio-Tech+D3-50&qid=1631955086&rdc=1&sr=8-6

https://www.amazon.com/Nutrasal-Micro-D-3-Vitamin-D-3-1oz/dp/B00ESKNGCW/ref=sr_1_7?dchild=1&keywords=Micro+D3&qid=1631955202&sr=8-7

Take this combined 140,000 IU/day loading dose for a maximum of 5 days then drop back to an initial vitamin D3 maintenance dose of 100,000 IU/week.  That's two (2) of the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 capsules/week.  That works out to 14,285 IU/day.

When you see your neurologist, ask for lab tests of your serum 25(OH)D3, calcium and PTH (Parathyroid Hormone).  You're shooting for a 25(OH)D3 serum concentration between 80 ng/mL and 140 ng/mL per the following normal distribution curve from reported 25(OH)D3 lab results in the online survey.  You want your 25(OH)D3 serum concentration to be under the right side of the green normal distribution curve between 80 ng/ml and 140 ng/mL.

You'll need these same lab tests two weeks after completing this loading dose.  It may be easier to see your PCP for these labs as most neurologists are not into nutritional medicine.

Take care and please keep us posted.

V/R, Batch

[spiny]

Maryo, you might also consider ordering seeds. Cheap, pretty fast, and legal to purchase. Type 'rc seeds'  in the search bar to see some posts on it. There are a few places that sell them and one is in NC , with great current recommendations. Dalt is no longer available at all to my knowledge. 

Upping the D is a great idea! It seems that our need for it goes up when other mess happens. And many are extra low due to the bug keeping us way from vacations and such.

As a nocturnal, I will give you my ways of dealing with those hits: Sleep in a recliner, with you head above your heart. Prop up with pillows or whatever to get comfy. You will wake sooner and have less pain. For some it eliminates some hits as well. Grab some caffeine at the first sign of a hit. It can stop some and will assist in dealing with the others. I slam one down heading to the O2. You know how to use your O2 and do your post breathing already, so I will leave that part alone here. Additionally, I have some coffee late in the day - after dinner to help put off the first one. 

For short term relief, get a Prednisone Taper pack and take it. It should buy you a few days sleep while you wait for the D3 to kick in for you.  It likely will give you 3-4 pain free days to catch up on some sleep and let the D3 build up in your body.

ATB!!!

[Maryo52]

Thanks Spiny.

I bought some energy shots today after discovering my M60 tank is nearly empty (or perhaps the regulator is faulty). I used it maybe five times each Fri & Sat nights for ten minutes or so/10 liters. I wouldn't think it would be empty but I fear it is, or is close to empty.

I've loaded 100,000 iu a day for several days. My PCP gets a little flipped out about my levels when they're in the 90s. But I can ignore that. My PTH and calcium are fine. I suspect that my recent prosthetic knee infection + surgery and antibiotics is somehow interfering with the Vit. D. I've developed a tremor during my illness -- that's neurological, caused by what I wonder? And because of my antibiotic therapy I'm not sure I'm a candidate for a prednisone taper because it lowers immunity but I'll ask. 

I'll try to sleep head above heart tonight. 

I'll explore RC seeds. 

I appreciate any and every suggestion!!!!

Thanks and love, M