One of the slogans of the 12-step program is the title of my blog today. Progress not perfection is my sentiment as I sit on the precipice of either potential progress or doom. Or maybe it will be that it was doom and is now on its way to progress? This is a mini treatment update.
First, the potential doom: I am reacting to most foods, supplements, meds., and treatments in a noxious manner lately. Then, out of the blue I took a 1/4 scoop of sugar laden cholestyramine (CSM) to attempt to counteract the convulsions that came with 1/2 cup of homemade, oven roasted sweet potato fries. I had added coconut oil and a clean protein to my quick lunch to balance any extra carbohydrates from the sweet potatoes. Not sure if it was the carbs or some latent mold in the potatoes but I was down for the count, so to speak, within minutes. I had a more delayed reaction to them and a couple of other things consumed together yesterday so I wasn’t that concerned. Mistake.
So I cancelled my 2:00 p.m. IV magnesium treatment; I could not drive myself there. I figured that I might as well get the CSM treatment over as it causes seizure attacks anyways, even with a 1/4 scoop loading dose of 1 gram. And to my surprise, the attacks stopped! I was still pretty wiped out though. Perhaps there was a war going on inside my central nervous system and the victor was not yet declared. So all I could do was veg out on the computer for a few more hours. It sure beat the alternative of lying in bed shaking some more. Maybe I should have tried to add to my 4 1/2 hours of sleep last night? Oh well. Decisions don’t come easy or get made well in this type of mental state!
Second, the progress: my tolerance for CSM might be improving. If it can stop the progression of a reaction then maybe I can take it without a reaction by itself. I think I’ll give myself a day to recover then try to increase it to 2 doses tomorrow. Lord willing, I may be onto something good! And if that good lasts for more than 3 doses, well then we might actually have something really good.
CSM is a resin typically administered to lower cholesterol. Persons with Lyme and mold illness use it in Dr. Shoemaker’s protocol to bind with mycotoxins that have a neurotoxin effect during treatment. CSM removes the bad guys from the body (according to clinical research); there are some gastric side effects. I was unable to tolerate it earlier this year during the stress of mold remediation of our home and had to discontinue even a low dose.
It’s dispensed as a very grainy powder with either massive amounts of sucrose or aspartame to cover the taste. After calling 6 pharmacies and 3 drug companies last week (including being forwarded to an “off shore medical center” in India for one of them!) I hit a dead end trying to locate CSM without sweeteners. Then a call to my favorite local compounding pharmacist revealed that the powder is indeed available but at incredible expense. He would investigate further and get back to me. In the meantime, the Massachusetts compounding pharmacy from which I get my VIP (vasoactive intestinal peptide) package arrived with a brochure that included CSM without sweeteners! Their price is the same as what I pay for VIP. It’s expensive. Turns out that my local pharmacy cannot even purchase it for the price that the MA pharmacy would charge me. Well then. A plan is coming together.
Unfortunately my LLMD appointment was cancelled Friday. I spoke with desperation to the not-so-friendly, overworked receptionist who notified me of the cancellation, pleading for an order for sweetener-free CSM powder from the MA pharmacy. Have you ever given detailed information to someone on the phone then wondered if they were just pacing themselves on the other end of the line and not really taking any notes? I had that feeling. I had no idea if anything would happen until I could confirm everything with the phone nurse next week. The weekend ended up with many wretched moments as I experimented with the sucrose-laden CSM. Sugar feeds Lyme, Candida, and fungal/mold infections. Not good.
So therein lies my caution with advancing CSM, my new wonder drug, until I have the sugar-free and aspartame-free version. If I’m having mysterious trouble with sweet potato fries oven roasted in 3 types of organic cooking oil to offset the glycemic impact, then I ain’t gonna mess much with the sugary version. Too bad that I get headaches with aspartame. Or maybe it’s a good thing. Aspartame can break down into formaldehyde and is associated with all kinds of health issues. You know what they preserve dead corpses with right? I’ll never forget the smell of formaldehyde from gross anatomy dissection lab in college . . .
Oops. I’m on a bunny trail. Well thank you for reading this rant and helping me to sort out a few things. Since the recent expert evaluation of seizures at a major university hospital didn’t yield any new information, I’ve been wondering what the heck to do next. A person with hours of multiple wretched events per day keeps looking for answers you know, with the brain cells that are left firing in the correct sequence. The Lord has definitely powered the sustaining grace of this renewed pursuit of CSM and any mental ability to write about it.
Oh, and some other progress: just finished the final edits of my upcoming eBook Hope Beyond Lyme: The First Year. I’ll do a final read-through and copyright check then publish it online. Stay tuned for some more good news!
Yeah Lord for anything good that happens from here! Your strength is shining through once again. This vessel is broken, cold, and quite spacey. Help me finish the race you have set before me and publish this work you have created in me. In Jesus’ name, amen.
UPDATE: The CSM is on it’s way across country from Massachusetts to Indiana!