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15 Sep

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More cooks in the kitchen

29 Jun

The past few weeks have been quite interesting in terms of “What’s next?” Fortunately, I have taken some much needed advice to relax and stop pushing so hard for the epitome of “recovery”. I am doing yoga every day using various YouTube videos I pull up. If I don’t get to it in the morning, then I make sure to do a gentle relaxation sequence in the evening before bed. I have been a frequent visitor at the local library pouring over various books on Alternative Medicine, GI health, and different healing diets. I also added two more cooks to my wellness kitchen.

The is no cure for the medical struggles that I face on a daily basis, but rather, I am learning to work synergistically with my body to promote wellness. Forcing my body into my ideal of “recovery” was an epic fail.

I had been working with a local functional medicine doctor who had a brilliant reputation. He definitely helped me get to where I am right now with some supplement recommendations, but unfortunately my time under his care was short lived because I quickly outpaced him in the research department. He referred me to a local woman who is known as the functional medicine guru, seeing nearly 40 hours of patients per week in her office. My consultation with her went wonderfully and I felt completely at ease explaining to her the various frustrations and roadblocks I have found myself up against lately. She knew what I was talking about when I told her that I suspected I had an issue with sulfation and methylation and was shocked that I hadn’t yet been tested for a gene mutation known as MTHFR. Dr. Guru (not her real name!) told me that she loves a challenge and was going to stick by me to see me through this.

So about that mutation. Several of my friends have lovingly coined it the “mother f*cker” gene. And really, that’s kinda what it is. A royal pain in my ass. The mutation is actually fairly common, but there are degrees of severity and naturally I get stuck with the sucky version. This flow chart explains it at a glance.

I emailed my mitochondrial disease specialist recently and asked to be worked up for this mutation. Several weeks ago a fellow mitochondrial disease patient called to chat me up about various issues and she mentions this mutation. I had read about it in the past, but hadn’t given it much thought. She told me that she had been following my blog and that some of my issues resonated with her due to her mutation status. MTHFR is a fancy string of letters that basically means the body has trouble metabolizing folic acid and other B vitamins. This type of metabolic process is known as “methylation” and it is incredibly important for healing, detoxing, and clearing heavy metals. I felt it was important to get worked up for this mutation because one of the standard treatments for mito is high doses of folic acid. If my body isn’t metabolizing it properly, I’ve been essentially poisoning myself for the past 18 months! I found it strangely suspect that I developed an intolrance to my B2 a few months back and my B12 has been off (too high or too low) for years now.

The results came back positive for a mutation on not one but *two* parts of the MTHFR gene – 677 and 1298 (these numbers are just used to identify where on the gene the problem is). I dove into the research, stopped the folic acid and came across Dr. Ben Lynch at MTHFR.net. I was concerned because my mito doctor had told me I needed monthly B12 and insanely high doses of methyl folate daily. Something didn’t seem right with these recommendations and since Dr. Lynch is considered an authority on MTHFR and I have been so sick the past number of years, I decided he should be on my team. I’m not messing around anymore! I had the opportunity to consult with him earlier this week and he was incredibly helpful in providing insight into my situation. He knows what he’s talking about and he was able to give me real suggestions to help progress things in light of this new information. Oh, and he also agreed I could have had serious issues if I had followed the mito doctor’s recommendations. Just sayin’.

So what am I doing now?

  • Moved turkey to Day 2 on the rotation so poultry is on the same day
  • Cut out lemons since they were clearly causing a reaction
  • Moved probiotic to after dinner to help keep it intact on the way to the gut
  • Began increasing my l-glutamine by 1/4 tsp
  • Stopped the folic acid
  • Replaced my Mg Oxide with Mg Malate (Mg Oxide is very poorly absorbed by the body, pretty much any other Mg is a million times better!)

My short term plan is to:

  • Begin castor oil packs as per Dr. Lynch
  • Add slippery elm to help heal the gut further as per Dr. Guru
  • Begin making bone broth

I have been doing lots of reading on the healing powers of bone broth and have decided to give it a whirl. I have been hoarding turkey bones and have even found a local farmer to get chicken feet from (I know, gross, but they produce the best broth I’m told!). My tummy has been a bit unhappy with all of the supplement changes lately and my “anti-probiotic” rash appeared once I moved it to after dinner, but all in all, things are moving forward. Slowly. Very slowly. But I am remembering to smile, breathe, and go slowly intentionally because there is no cure. Only wellness. And as Dr. Guru pointed out, my medical issues are only 1/3 of who I truly am.

Deep Within – Truth Time

2 Jun

My friend sent me this the other day when I was having a particularly rough time. This is my current mantra.

I have frequently stopped to consider the profound impact chronic illness and disability have on my character and growth as a person. I have spent countless hours in and out of therapy wrestling to come to terms with a way of life that is so vastly different from the one I envisioned for myself. The past few months have brought significant changes and have given me a glimpse of what life could be like “if only” I manage to pull my body around to a state of complete health. I have been over-zealously researching, tweaking, charting, scheduling, reading, researching, researching, researching. My efforts have not been in vain, however, and I have noticed that I have more endurance, more stamina, and my GI symptoms have steadily decreased. Unfortunately, the more I research, the more I read about others out there who have spent 10+ years running circles around their symptoms and trying to solve the mystery of their failing health. It leads me to more questions, more “what ifs”, more second-guessing, more doubt, and more of the one thing that has always sent my body in a downward spiral: stress.

The past few weeks I have noticed less improvement and more of a plateau, and some days, I have noticed what feels like a decline. It has left me frustrated, scared, angry, and I am frequently beginning to feel as if there is little point to endlessly pursuing an answer that might not even exist. The intricacies of the metabolic pathways are numerous and even the best researchers barely scratch the surface with their understanding of how things really work.

Last week I had a “lightbulb” moment that was so profound; it sent a surge of adrenaline through my body. My thoughts burst into a stream of consciousness that included a picture-perfect future – health, medical school, a career. I had noticed that I had been having difficulty digesting certain fruits and vegetables and decided to do more research into why, which led me to discover phenol and salicylate sensitivities. I picked up a new enzyme to try, which seemed to be helping until I started noticing some side effects. It’s a balancing act this business of “eating” and it leaves me more and more frustrated as time goes on. Further research left me wondering about a depletion of sulfate in my GI tract, which would help explain the issues with intestinal permeability and sensitivities to so many high-phenol foods.

I was thrilled to have found something that might indicate I was on the road to a definitive answer with steps I could take to improve my situation. Except the more I researched, the more anxious I became. How will I ever figure out what is really going on in my body? How will I ever correct the mitochondrial dysfunction? Which treatment plan should I really be focusing on? And is it sound to pump my body full of artificially produced supplements and enzymes even if it supposedly cannot function without them?

I started to feel myself back-peddling to the “me” I was before all of this started. The me who is perfectionistic, high-energy, with high expectations, whose stubbornness surpasses all tolerable levels. Nothing was or is ever good enough for this version of me, and I felt myself quickly losing all of the lessons in acceptance, patience, and meditation I had worked so hard throughout the past couple of years to grasp. I was feeling unusually restless with all of this uncertainty the other day and thought about what one of my friends would tell me. This friend has known me for several years and has an uncanny ability to help me re-focus and re-center. I thought about what she would tell me if I sent a panicked “I am never going to beat this” text and realized she would tell me to do the one thing I was resisting doing the most: sit with it.

Sitting with feelings of doubt and uncertainty is incredibly uncomfortable. My brain and body want to be “doing”: researching, curing, cleaning, organizing, planning. Sitting with the feelings equates to defeat in my mind, as if I am admitting to myself that there is a possibility that I will not come out the other end of this tunnel fully healed. But that IS a very real possibility, and the more I sat, the more I came to realize that I am not running a marathon to a distant finish line labeled “RECOVERY”. Wellness is a journey and the journey is the experience. I have been so focused on my setbacks and aiming for this epitome of wellness that is unobtainable for even a healthy person, that I haven’t been able to enjoy my progress. MY progress. The progress I made by researching, reading, and implementing a plan that *I* designed on my own! That is a remarkable accomplishment and one that I am intending to take more time to appreciate in the next few weeks.

Conducting an Orchestra

14 May

One of the most frustrating aspects of dealing with chronic illness is finding a primary care physician (PCP) who is not only willing, but ABLE to orchestrate your care. I was very fortunate in that I

That feeling you get when your treatment team is clueless about what’s really going on..

had been under the care of a fantastic doctor when I first started becoming ill. Due to insurance changes, I had to find another PCP which led to years of mismanaged care and me having to learn how to orchestrate everything on my own. I swear it was like showing up at a daycare and trying to conduct a bunch of 3-year olds with Fisher Price instruments. Don’t get me wrong, I LOVE Fisher Price, but the quality of the sound is only as good as the skill of the person playing the instrument…food for thought. Sometimes I think baboons would have communicated and worked better together! Of course, one might accuse me of being a sucky conductor, but in my defense, I had no formal training! You work with what you’ve got, and fake it ’till you make it.

Fortunately, I am now back with the original PCP (yay!), but one of the things I learned along the way was how to keep my treatment team on the same page. This is particularly important, especially if you have to apply for disability because your observations and notes about your progress become an official part of your chart.

I began making this update sheet because I was quickly noticing that no one knew what was going on. The clincher was when my last PCP called and questioned why I needed a home visit for Social Services to apply for assistance. “Do you have trouble walking?” he asked. This was less than 10 days after he personally wrote a prescription for a WALKER for me!

The walker my PCP promptly forgot I needed. This same walker serves as an excellent conversation starter with the elderly and gets stuck in boutique aisles while I’m trying to shop on Elmwood Ave.

I decided enough was enough after that conversation and I put together a sheet that I began to fill in prior to each appointment that would become part of my official record. It definitely helped and it definitely counted in my favor when it came time to apply for Social Security Disability Insurance. It is *very* important that each member of your treatment team is kept up-to-date with medications, tests, symptoms, and quality of life. I am including a link to a Google Doc of the form I made. Feel free to use it! My suggestion is to make a folder on your computer for each doctor so that you have a copy of each form you complete. I type in the info, print one copy for the doctor and save the original in that doctor’s designated folder on my desktop. Easy peasy and there’s no longer as much confusion about what’s REALLY going on.

“Do or do not” – Starting the journey

4 May

I feel as if my list of permissible foods is shrinking, but at the same time my energy levels are improving so maybe that is the reassurance I need that I’m doing something right?

When I first implemented my own allergy rotation diet in early March, I included grains and some sugar, but couldn’t get it out of my (obsessive-compulsive-prone) head that candida overgrowth may have been contributing to my symptoms. For two weeks I eliminated all sugar (including fruit!). Let’s just say it did NOT go well…A constant reading of “50” on the glucometer isn’t exactly a good thing! So I did some more reading and reintroduced fruit only to be eaten first thing in the morning on an empty stomach. The rationale behind doing it this way is so you’re breaking your fast with something that is going to be quickly converted and used instead of sitting around in the gut, fermenting, and feeding all the yeasties. For the most part, this has worked well.

The grain elimination shortly followed when I noticed that I was feeling very sluggish and out of sorts

A fitting quote for a May 4th post. Commit to a gluten free diet for 30 days. No cheating, and no half-assed attempts. Feel the difference. Your body will thank you.

following skillet breads or piles of quinoa. Our culture is grain-dependent and while our food pyramid (designed by the government that pays the grain farmers’ subsidies…just sayin’) was built to reflect this, our BODIES were not built to digest all of these grains. In fact, grains cause a significant problem for a lot of people, they just don’t know it.

I recently finished reading the chapter on leaky gut in Robb Wolf’s book The Paleo Solution: The Original Human Diet. The book is a real page-turner, honest! Wolf is a funny guy, and while some of the parts are a bit scientific, he explains them very well. Anyway, he talks about the various proteins found in grains, particularly lectins, which are not broken down in the normal digestive process. We all remember what happens to proteins that don’t get broken down properly, right? Unfortunately, the issue is compounded by the fact that grains contain protease inhibitors as well, which further stunts the digestive process. But grains are cunning little guys (I mean, they did manage to convince the government they were strong enough to hold up the whole food pyramid!) and they can actually fool receptors in the intestinal wall into thinking they are broken down and ready for transport through the lining and into the body! Legumes and dairy have very similar effects on our gastrointestinal tract as well. And what happens when large, undigested proteins end up in the bloodstream, class? Inflammation.

If you’re considering embarking on a nutritional overhaul, my suggestion is to start small and slowly. I was chatting with a friend earlier about possibly embarking on restructuring her diet and I explained that there is no way I could have (sanely) managed all I’m managing now if it had all happened at once. Over the course of the past 2 years, I have slowly eliminated one food at a time as each became a known issue, but gluten was indeed the first to go. So if you are feeling overwhelmed and want to know “What do I do first??” Start there. Cut out the gluten for 30 days. Just 30 days. 1 month. 4 weeks. However you want to look at it. You’ll survive, I promise! The worst it can do is make you feel a bit crummy as you go through withdrawal for a couple of days (because the process of consuming gluten activates the same receptors crack does, and I’m not even joking), and the best it can do is give you some semblance of health back and reduce your dependence on processed foods. If you’re going to do it though, actually DO it. There is no “on again off again” gluten free eating. You need to fully abstain from the stuff for the full 30 days for it to make a difference because remember, it can take the GI tract several days to rejuvenate after a single exposure to an irritant.

“Do or do not. There is no try.” Here are some resources to help you get started:

Celiac.com – A comprehensive site on celiac disease and gluten free eating
Gluten Free Goddess
– Check out Karina’s posts on what to buy, what to look out for, and gluten free 101

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