We live in the Southeastern United States. My husband has a very rare neurological disorder. No one in the five most prestigious institutions in the US nor any neurologist, internist, integrative, or a multitude of specialists have ever seen his symptoms before. If Johns Hopkins ever sees another patient with is symptoms, they will name the syndrome after him. That being said, his biggest issues are movement and balance. His initial symptoms began after using statin drugs for cholesterol while at the same time being treated for H Pylori infection (confirmed with endoscopic biopsy). He endured seven courses of Levoquin and five courses of Cipro, all while being on a PPI. (He never had elevated cholesterol, by the way. His doctor was giving statins to ALL of his patients, no matter the age. My husband was just 39.) The PPI blocked vital B12, among others, from being absorbed, and PPI ruined his gut flora. The multiple antibiotics proved to be neurotoxic and contributed to complete anialation of his gut flora, causing a microglial neurological inflammatory cascade. His immune system was wrecked and he suffered from multiple upper respiratory infections, until his immune system stopped working at all. He also endured a tetanus vaccine and was unable to clear the metal (mercury and aluminum)adjevunts received along with the vaccine. The loss of B vitamins, caused his homocysteine to elevate, blocking his methylation/transulfuration cycles, and further impacting inflammation. He ended up with chronic muscle stiffness and pain, joint pain, fibromyalgia, fatigue, and an inability to initiate even the most simple of movements (like blinking his eyes). The statins cut off his paroxisomes from being able to do their cellular jobs, further impacting his exhausted mitochondria, and interrupted his ability to produce bile salts. Statins also did those other nasty things like cut off sterol production, COQ10, and bile salts (among other nasty things). His H Pylori was never eradicated and ran rampant inside of his intestines. He also ended up with severe candida and parasitic infections. He was a mess. It took about five years for his liver to run out of stored vitamins (yes, even some water soluables are stored in the liver in the event of starvation) and for his body to break down completely neurologically. The National Institute of Medicine's top neurologist diagnosed him with a rare ALS, Alzheimers, Parkinson syndrome. Boy, was that a depressing day, but it turned out to be the complete wrong diagnosis!
No one willing to treat him, we set out on a quest to learn about what went wrong through the course of his many "medical interventions" aka treatments/therapies/prescriptions. Once we realized his homocysteine/methylation/transulfuration cycles MUST be the first step in addressing healing, we began to slowly add in appropriate supports. Dr. Amy Yasko's websites, vimeo productions, books, CD's and online forum were/are invaluable in learning which SNP's he had that were impacting his cycles and what we could do to support them nutrigenomically. Using her resources, we got John's cycles running again, healed his gut, got inflammation under control, and began removing metals and microbes from his body. We had to address Lyme, Candida, Hook Worm, E-coli, mercury, nickle, aluminum, and yes, H Pylori. We also had to address his paroxisomal issues through proper fatty acid introduction to his diet.
At age 51, he is now no longer in pain, his joints are almost back to normal, his gait/balance is improving, his skin is improving, and his homocysteine is almost within normal limits each time we test. He has gotten rid of Lyme, E-Coli, and Hook Worm. We will always be fighting candida and H Pylori but we are managing to keep them under control. I am uncertain whether without proper methylation/transulfuration cycle support, gut health, and diet that H Pylori and candida can EVER be completely eradicated. We are striving to manage them and win as much of the battle as possible, especially by maintaining optimal gut flora through probiotics, maintaing proper pH balance physiologically (magnesium compounds are marvelous for this), eating a GFCF organic diet complete with the proper oils (MCT, avocado, primrose, CBD, Phosphytidil choline), and most importantly reducing neuroinflamation through detoxificastion route supports (magnesium threonate, CBD oil, primrose oil, probiotics). If and when his body can tolerate it, we will plan to introduce more detoxification route supports to reduce his heavy oxidative stress load in the near future. However, the oils he is already using (esp CBD) are very supportive of this we are learning. Another improtant piece of the puzzle is atlas orthogonal treatments from a highly trained and specialized chiropractor using the Sweat technique (this is a topic for another time). AO treatments served to re-estabilsh cerebral blood and CSF flow impacted by his formerly stiff muscles and inability to move properly due to his neurological limitations.
His new (since Jan) integrative neurologist is highly optimistic in a full neurological recovery. (
) A lot of prayer and trial and error has gone into and continues into healing my husband, but praise God, several times a week his brain "clicks" into normal and he is completely unimpaired and normal in all respects. After the episode of normal has ended, he returns to his impaired state. The miraculous moments are very brief but are now becoming more frequent. They give us every hope of a complete recovery. Boy, do we love those moments! (But boy, we sure don't understand why they do happen, or we would make them happen all the time for sure!!)Oh, and his H Pylori symptoms? They are still around but much less frequent: hearburn and reflux and those we actually don't know about.
It has taken years to get to where we are. But it has been a not so terrible journey, considering the outcome if we had given up (or believed the NIH idagnosis). Please be encouraged. The road may seem long, but God made our bodies to heal themselves given the proper care and feeding. The answers are out there and surpringly simple. They just take more effort than opening up a pill bottel and swallowing.
It requires a devotion to asking questions and seeking answers... And lots of prayer.