Where to begin ......
Moving Forward
Kim has started her own blog at CPn Help!!! She is kimscupoftea. This is very exciting for both of us. Despite my frustrations with finding a doctor, I'm confident that Kim's going to be ready to get ABX soon. So starting her blog now seemed like the exact right time. We just got a call from her Neurologist's office that the medical record copying service has her records ready! OMG! We now need an outside service in another state to make copies of medical records! So we will make more copies and get a set to Vanderbilt ASAP.
Replies
Sarah - I can't begin to thank you enough for helping me along this path. I sure hope I can contribute even a tenth as much as you to forward this whole effort for all. I'll increase Kim's B-12, which BTW is the methylcobalamin kind which is harder to get, but was recommended somewhere - I forget where. I think we're going to decrease the Evening Primrose Oil and add Acetyl L-Carnitine, Alpha Lipoic Acid and more B-12. Proflavanol is a vitamin C supplement that is produced by USANA. It's ridiculously expensive for vitamin c, but I can say that when Kim doesn't take it, she doesn't walk so well. I can't expalin why this particular tablet is the "must have", but I can't deny it's impact.
Removing N-Acetyl Glucosamine
I can't know for sure, but I have to wonder if this stuff is associated with Kim's current exaserbation. I've removed it from the vitamin mix and put glucosamine chondroitin back in. I feel really bad about this. The new supplements list (with other changes) looks like this:
Supplement . . . . . . . . . .
Wheldon Adjuncts . . . . .
Porphyria Regimen . . . .. Kim’s Current
Vitamin C . . . . . . . . . . . . . . 1000 mg daily . . . . . . 1000 mg x2 daily . . .. . . 4950 mg daily
Vitamin E . . . . . . . . . . . . . . . 800 iu daily . . . . . . . . 400 iu x2 daily . . . . . . .
400 iu daily
Omega 3 Fish Oil . . . . . . . . 4000 mg daily . . . . . . . . . . . . . . . . . . . . . . . . .
1200 mg daily
Evening Primrose Oil . . . . . 1000 mg daily . . . . . . . . . . . . . . . .. . . . . . . . 1300 mg x2 daily
Acetyl L-Carnitine . . . . . . . . 500 mg daily . . . . . . . 500 mg x2 daily . . . . . 500 mg x2 daily
Alpha Lipoic Acid . . . . . . . . . 150 mg daily . . . . . . . 400 mg x2 daily . . . . . . . 345 mg daily
Coenzyme Q10 . . . . . . . . . . 200 mg daily . . . . . . . . 30 mg x2 daily . . . . . . .
72 mg daily
Selenium . . . . . . . . . . . . . . 200 mcg daily . . . . . .. 100 mcg x2 daily . . . . . . 200 mcg daily
N-acetyl cysteine . . . . . . . . 600 mg x2 daily . . . . . . . . . . . . . . . . . . . . . . . . 4900 mg daily
Vitamin D . . . . . . . . . . . . . . . 4000 iu daily . . . . . . . . . . . . . . . . . . . . . .. . . . 5000 iu daily
Vitamin B Complex (1) . . . . . . . . daily . . . . . . . . . . . .. see below . . . . . . . . . . . . . . . . . .
. . . Folic Acid -B9- . . . . . . . . . . . . . . . . . . . . . . . . . 400 mcg x2 daily . . .. . . 1000 mcg daily
. . . Thiamin -B1- . . . . . . . . . . . . . . . . . . . . . . . . . . . 10 mg x2 daily . . . . . . .. 27 mg daily
. . . Riboflavin -B2- . . . . . . . . . . . . . . . . . . . . . .. . . . 10 mg x2 daily . . . . . . .. 27 mg daily
. . . Pantothenate -B5- . . . . . . . . . . . . . . . . . . . . . . 100 mg x2 daily . . . . . . . . . . . . . . . . .
. . . Pyridoxine -B6- . . . . . . . . . . . . . . . . . . . . . . . .. 100 mg x2 daily . . . . . . . 32 mg daily
. . . Biotin -B7- . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 mg x2 daily . . . . . . . 300 mcg daily
Magnesium (1) . . . . . . . . . . . 300 mg daily . . . . . . . . . . . . . . . . . . . . . . . .. . 700 mg daily
Calcium (1) . . . . . . . . . . . . . . 500 mg daily . . . . . . . . . . . . . . . . . . . . . . . . . 1070 mg daily
Sublingual B12 (2) . . . . . 5000 mcg x3 daily . . . 5000 mcg x3-6 daily . .
5000 mcg x2 daily
Lactobacillus acidophilus . . . . . . . daily . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . daily
Turmeric . . . . . . . . . . . . . . . . . optional . . . . . . . . . . . . . . . . . . . . . . . . . . .. 2295 mg daily
Bioflavinoids . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . daily . . . . . . . . . . .. 458 mg daily
L-Glutamine . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2-4 g x2 daily . . . . . . . . . . . . . . . . . .
Glucosamine . . . . . . . . . . . . . . . . . . . . . . . . . . 750-1000 mg x2-3 daily . . 750 mg x2 daily
Chondroitin . . . . . . . . . . . . . . . . . . . . . . . . . . . .. 250-500 mg x2 daily . . . 600 mg x2 daily
Activated Charcoal (3) . . . . . . . . . . . . . . . . . . . . . . . . . optional . . . . . . . . . . . . . . . . . . . . .
(1) Not to be taken at the same time as Doxycycline
(2) This is adjusted in the protocol – see protocol
(3) Taken 2hrs apart from food start with 2 g x3 daily
Thanksgiving
We have a lot to be thankful for, especially everyone here at TIMS and at CPn Help! While we're not quite on the path, but we just know we will hit a breakthrough. We'll be in Pennsylvania with the rest of our Steeler Family and we will nudge a family pharmacist a bit while we're up there. We're taking a copy of "The Notebook" just in case. Please visit with Kim at CPn Help and have a healthy and safe holiday
Ken