u/CleodusaVeraAlyce

The screening MRI was a failure and gave blurred images to the point where they had to reschedule it for next Wednesday. I was still as can be in that machine and yet the simple act of breathing was causing the images to be severely blurry. They think it’s because my shoulders move when I breathe, and I honestly don’t know how to prevent that. They plan on putting sandbags on my back during the next MRI to see if it makes a difference. If not I guess I’m going to have to figure out some other solution for managing this brca1 mutation. It is ludicrous to me that advanced AI imaging (supposedly the most advanced MRI of our time they say) can fail to this level. 🙄
Tips? Advice?

Mold recovery is a strange process, after a month of being strange smell free (the gym sock odors disappeared on Easter) the gym sock smell came back about 10 days ago and would come and go (I was the only one smelling it) finally it turned into a stagnant urine smell. Last night I smelled a pungent scent of cough syrup after nasal spray. This morning I woke up thinking breakfast was being cooked cause I smelled what smelled like bratwurst or smoked sausage. The smell kept coming and going throughout the day 🤣 the sausage smell was with me at home, at Aldi, you name it. The strange smells started about 1 month after adding EDTA to the amphotericin B. This has to be my most bizarre recovery symptom yet 🤔
How does it go from socks to sausage? I have to wonder to myself am I smelling biofilms breaking down in my nose or am I having olfactory hallucinations? 😵‍💫🤣

Anyone on here willing to chat who deals with pots but also has to manage a high cancer lifetime risk too? Cancer survivors who have pots are welcome too. Looking for someone to chat about experiences.

Recovery from mold sickness is no easy task, and while I cannot definitively say I’m cured yet, it appears I’m getting closer.
Amphotericin b nasal spray was a game changer, especially pairing it with EDTA. It seems to compliment itraconazole pill capsules well by enhancing their antifungal benefit.
Good signs I’ve noticed:
-haven’t had a true killer migraine headache since early January (all headaches since have been dull short lived sinus ones that are infrequent)
-no more motion sickness in the car 97% of the time, if any off feeling happens it is dull and I can’t even call it motion sickness at this point.
-boat rocking sensation has pretty much gone away during awake hours completely, occasionally feel off balance when sleeping on a particular ear and have mild vestibular disturbances but greatly improved.
-I can tolerate exercise most days (the minimum needed to sustain health and brca1 status to reduce cancer risk)
-weight loss going from 155 to 145 over the past 5 months (I developed a mild unexplained weight gain of around 25 pounds upon moving into our home 3 years ago)
-fatigue is more short lived, and I feel quite energized in the afternoon
-heart racing episodes have greatly improved
-and most interesting one is water intake needs have dropped. I used to need 2 gallons to feel ok but now I can tolerate as low as 1.5-1.6 gallons per day. Probably the most remarkable of all is seeing that dysautonomia starting to fade away.

I can’t say for certain how close I am to being cured, but this does say to me that while I’m not officially at a normal quantity of water yet, still get nightmares at night and still have to be careful how I time hydration and eating. I can say at this point symptoms are more mild and background noise than screaming at me anymore.
Side effects are minimal, I’ve noticed a distorted sense of smell at times on these nasal sprays. And sometimes I smell phantom odors like gym socks and sewage that other people don’t smell, but it seems to be infrequent. After my baseline MRI for brca1 screening is complete in a few weeks I will be retesting blood to see where I’m at.
It appears all the aggressive work we did on our home environment is working, and so are supportive add on treatments.