Life as a germ magnet. The average person will stroll through life never giving much thought to living with a weak immune system. A person with Superficial Siderosis will often find out the hard way that caution should be the word of the day. Every day we’re bombarded with invisible bugs. You think you’ve taken care to avoid those unseen dangers, but life as a germ magnet just about guarantees something nasty is bound to take hold.
Last winter is the perfect example. Our daughters family was suffering from a particularly nasty flu bug. We had, in all honesty, been avoiding their house, but we found ourselves answering a plea from one of the granddaughters. A stopped up commode. Gary walked in, plunged the offending toilet into submission, and walked straight to a sink in another room. He thoroughly washed his hands and arms. I stood ready with the hand sanitizer and slathered him down. We drove home and within three hours Gary was down, 103-degree fever, and a very nasty case of the flu. I was unaffected even though I had also been in the bathroom cleaning up behind him.
We learned an important lesson that day. No matter how well you wash or sanitize, you will still have no defense from those invisible particles floating through the air.
Will This Never End?
You not only have to contend with germ dodgeball but if you are unlucky enough to come down with something you don’t imagine the fact it hangs on forever.
Gary fought a bout of pneumonia in September. The doctor put him on a course of antibiotics and threatened a hospital stay if he spiked a fever. A week passed, and he was still not much better. A return trip to the doctor, another course of antibiotics, and pneumonia turned into bronchitis. It took three weeks to recuperate and one more week to feel semi-normal again. Say good-bye to “it’s just the sniffles.”
Dr. Levy has also mentioned SS patients will have an extended recovery times from surgeries, greater sensitivity to anesthesia and reduced neurological reserve.
What About My Ferriprox?
Doctors suggest any time you are fighting an infection, fever, or acute illness you cycle off of your Ferriprox. Ferriprox won’t interact badly with an antibiotic but when your body is fighting you need your bodies iron reserves on your side.
Gary cycled off his Ferriprox for three weeks in September. We skipped the low iron diet during this period choosing instead to load him up on beef bone broths, red meats, enriched flour and grain products. The weekend iron loading diet, wide open, for three weeks.
If you ever wondered if the five/two-day cycle diet we follow has any effect on your ferritin levels we now have some pretty convincing evidence it does. Gary had blood work done the first week of September, and his ferritin level was 25. Three weeks off Ferriprox, eating a healthy high iron diet during that time and what was his ferritin level the first week of October? His ferritin jumped from 25 to 45 in one month.
We some concerns his ferritin level had risen so high in such a short period. He went back on the five/two cycle diet with a vengeance hoping it wouldn’t take months to get his ferritin levels back down. November blood tests showed his ferritin had already dropped back down to 29. We go in this week for his December testing, so we are hopeful everything is now back on track.
What Can I Do?
We try to avoid Gary interacting in close quarters with anyone who is sick now. His sister was in the hospital for a month so sometimes high-risk trips were unavoidable, but he was very careful always to wear a mask, wash his hands frequently and use hand sanitizer. You can’t live in a bubble, but you can take precautions to live smart.