Five-Two Diet Plan Update

Five-Two Plan

Some of our earliest blog posts explained Dr. Levy’s suggested medication dosing schedule and diet recommendations. We dubbed this the Five-Two Diet Plan so we would have an easy way to write about it.

Two and a half years in and we can report our high/low iron foods cycle diet plan is a success at reducing Gary’s ferritin level. His body seems to have leveled out naturally and hovers in a channel now.

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Following The Low Road: Low Iron Diet

UPDATE DECEMBER 2017: Gary has been following this diet plan for 30 months now. His serum ferritin level now stays between 11.2 and 9.9. His lowest level recorded was 8.8. He cycled off his Ferriprox for a week, and we iron loaded his diet until he was back in the mid 9 level.



Your Life As A Germ Magnet

compromised immune system

Germ Magnet Immune System 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…

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Navigating The Iron Food Road

MRI Color Enhanced

Finding The Iron Content Of Everyday Foods   I’ll be honest – this is a tough one – no, you don’t have to follow the 5/2 diet cycle while on Ferriprox. Gary does because we’re trying to get our money’s worth. In March of 2014, when first diagnosed, the radiology report noted there was only “mild associated cerebellar atrophy.” Working, driving or walking a straight line were all still possible. Chelation therapy using Ferriprox started a year ago in July 2014. We know the deterioration continues even though you are on the medication. Ferriprox needs years to work on trying to remove the iron accumulation. The MRI in February of 2015 (11 months later) shows “prominent volume loss in the superior aspect of the cerebellum.” We probably could have guessed the latest report ourselves. Gary’s symptoms were getting worse so you can understand we feel the need to help this process along. The recommended daily intake of iron   A 57-year-old man needs an average of 8 mg of dietary iron daily to stay healthy. If you check out the Iron Content Database you’ll see the average fast food double meat cheeseburger (355 gm total weight), vegetables and condiments contain a total…

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Benefits of Green Tea

Green tea for memory

  Green tea has enjoyed such a surge in popularity that more than a few people are skeptical. Every healthy living blog touts the benefits of green tea for everything from cardiovascular health, diabetes or weight loss. That will raise an eyebrow or two, but when you do some research, you may find yourself changing your mind. One of the more worrying symptoms of superficial siderosis is cognitive impairment. 20% of SS patients will experience early onset dementia. That’s not an enormous number considering that’s about one in five (of 270 diagnosed cases) but when you might be one of the ill-fated headed in that direction the number gets BIG real fast. Small signs that something was off showed gradually but began increasing last winter. Gary can remember the phone number and address of every house he has lived in but forgets the daily meds he’s been taking for years. A big red flag. Short-term memory problems like losing his train of thought. He begins cooking and then forgets he has something on the stove. It all was becoming progressively worse. Our neurologist diagnosed mild cognitive impairment (MCI) after an in-office evaluation and written test. We were sent to a…

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Following The Low Road:Low Iron Diet


Giving Ferriprox A Chance   When we decided to give Ferriprox a chance, we weren’t aware how hard getting your health insurance company to approve a tier 5 drug for off-label use is. Luckily, we have a hematologist experienced in gaining approval for high-level medications for his patients. Five months passed from when Gary was first diagnosed until the first bottle of Ferriprox arrived at our doorstep. Excitement, hope, anxiety, and worry all packed into one little box.   “Because Ferriprox will be used for years in most patients, we came up with a schedule to avoid iron deficiency. During the week when you’re taking the medication, you should avoid iron-rich foods and vitamin C 2 hours before and after taking the medication. Vitamin C-rich foods include tomatoes, grapefruit, and oranges. On the weekends, to replenish some of the lost iron reserves, eat a steak or something rich in iron. But not iron tablets. Iron tablets take a long time to digest (days) and will interfere with absorption of Ferriprox.” – Dr. Michael Levy   We decided to follow Dr. Levy’s recommendations because we felt an obligation to make the most of every dose of Ferriprox.   Who Knew   Trying…

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Chipping Away: Ferriprox


Chipping Away: Ferriprox   Starting Down The Chelation Road   It was a big day when the first bottle of Ferriprox arrived at our door. Our hematologist had laid out what would be happening during chelation in some pretty easy to understand terms: “Picture the iron that is covering the areas inside your head as a rust that has been building up on the inside of  your head coating parts of your brain and nerves. For chelation to work the drug has to be able to cross the blood-brain barrier. It’s hard and will take awhile to go away.” The protocol, recommended by the manufacturing company All SS patients who are on chelation therapy with Ferriprox have regular blood tests run to track their neutrophil levels and liver function. There have been rare instances of other patients developing agranulocytosis. Agranulocytosis is a deficiency of a type of white blood cell whose purpose is to fight off infection. If your neutrophil level drops too low, you need to cycle off the medication until it stabilizes. One suggested medication dose schedule is taking your twice daily dosage for five days and cycle off for two days. Ferriprox removes iron from everywhere in…

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