Category Archives: Alternative Medicine

Finally Answers, Five Years Later

Last November marked five years since my pulmonary embolism which led to the discovery of my kidney disease: Idiopathic Membranous Nephropathy. The idiopathic part, which literally means unknown cause, is the part of my diagnosis that has bothered me the most all these years.

WHY?

Why the hell did my body–the healthy body of a runner with no other underlying disease or malady–develop this disease?

It’s been a roller coaster of a ride through immuno-suppression therapy and all the terrible side effects, three hellish months of strict veganism, and becoming a vegetarian to gain my health back. Years of vegetarianism to stay in remission, which I thought I could handle and which, turns out, is harder than I thought it would be with school and a family who does all the cooking. All this and still no real answers to why it happened in the first place. Especially after forty years of health with no lead-up or warning.

December 2017 marks the official removal of the ‘Idiopathic’ part of my disease. I FINALLY have answers to the why question and let me tell you how surprising they are…

I’m skipping ahead so let’s go back to the beginning. The beginning that didn’t look like remotely related to me personally at the time.

I have several friends who struggled with food that made them sick a few years back. Two of them researched enough that they believed they had a gluten allergy since eliminating gluten eliminated their symptoms. Both went to extreme measures to avoid all things gluten, and still got sick. Both are kick-ass and didn’t take it lying down. Which led me to the LEAP diet and MRT test.

I halfheartedly longed for a way back to my omnivore days where I could eat lean chicken and the occasional filet minion when the need arose. Seeing my trail-blazing friend figure out exactly what she was allergic to (yeast, not gluten) and able to manage her debilitating pain without medication had me hopeful that this was the way to do it.

March of 2017 I started working with my friend’s dietitian who specializes in kidney disease. I did the MRT blood test in May and (halfway) embarked on the LEAP protocol in June. MRT stands for Median Reaction Time and is a measure of how my blood serum reacts to 105 different foods. It gave me a list of foods that I’m allergic to split between a “you should never ever eat these” red list, and a “you should try to avoid these as much as possible” yellow list.

What does any of this have to do with kidney disease? MY kidney disease is an autoimmune disorder which is triggered by inflammation in my body. That’s the same reason vegetarianism keeps it at bay since digesting the flesh of animals increases inflammation. Now you’re with me, right? My whole thought process setting out was this: if I can trade the decreased inflammation from not eating meat with not eating whatever I specifically am allergic to then I could theoretically eat meat again.

It was a long shot. I knew it. I didn’t care. Stranger things have happened, (look at me with a kidney disease!) so why not try.

In December, my nephrologist (fancy word for a kidney doctor) confirmed that the changes I’d made to my diet based on my MRT testing had resulted in such stunning changes in my blood work that she was confident in saying that we’d found the cause of my disease.

Did you catch that? Cause = food allergies. I can’t make this shit up, people! The last five years of hell are because I was eating foods that my body doesn’t deal with well (for forty years). I’ll write up all the details (it will be a VERY long post, I warn you) but this is the gist of my answers.

It is stunning and overwhelming to think of this one case, mine, and wonder how many more people out there suffering with crazy health scares that don’t make any sense might have similar causes. It’s a soapbox topic from the beginning of my blog, this food that isn’t a food and how terrible we eat as a country, but this takes it to a whole new level. Don’t you agree?

Stay tuned if you want nitty gritty details because you know I’ll share them! And my dietitian is doing a case study of me (look, mom, real science and shit!) to publish. Maybe I can somehow help others in similar circumstances by sharing my story. For me, I’m just glad I get to eat meat again!

 


The Reluctant Vegan and Her Sweet Rewards

Three months ago my doctor dropped her latest dietary restriction bombshell: no more animal products at all. Yep, after a year of vegetarianism I had to shift to being vegan. I fought it – tooth and nail – because: dairy. I’d already cut out most of the eggs I ate and all of the shellfish because of their high cholesterol content. But can you fathom a life without butter, or yogurt, or cottage cheese? Or baked goods made with eggs? Yeah, me neither.

As is my nature, I argued with her about why this extreme measure was necessary. My timid, soft-spoken doctor threw the most solid argument there was right back at me. “Your cholesterol is too high and you’re the one who tells me you want to do things naturally without drugs. This is the only way.” Our relationship over the last couple of years has been one filled with negotiation and partnership – aspects I feel necessary for proper treatment but which I fear are rare to find. Over the course of the appointment we came to the following negotiated deal: if I changed my diet and improved my cholesterol numbers she would consider a faster weaning process for the immunosuppression drugs that I can’t wait to stop taking. I’d been focusing on getting through every day of that drug with the mantra “December” repeated over and over. To hear in September that the long-anticipated December didn’t mean what I thought it meant but rather the start of a six month process of lower doses, I was ready to explode with frustration.

I was a woman on a mission. A vegan mission. I read the book she recommended and felt a little better prepared for this difficult and extreme lifestyle. And was happy that it wasn’t what I think of as nazi vegan that she was ordering – where if there is even a hint of butter or eggs involved in the making of a dish you have to reject it – but rather 90% of total calories from plant sources.

And so began the three hardest months ever in terms of eating. I gained weight because more often it was easier to eat nothing at all than try and figure out something that worked, which resulted in the evolutionary response of retaining everything because we’re in a famine. When I did find something that was allowed, it usually was an overabundance of carbs with a side of more carbs. It was hard not to be dejected about food every day. Eating out was a chore and even my patient and supportive husband got frustrated with my attitude on many occasions of attempting to eat out together when I’d pour over the menu only to declare “there’s nothing I can eat here”.

The last month has been like the last stretch of the longest race in history forcing myself to eat within guidelines until I could get my blood work done. Frankly I was convinced I wouldn’t see enough of an improvement to justify this insanity and was willing to succumb to the dreaded addition of cholesterol medication so I could go back to “just” being a vegetarian. God what I wouldn’t give to be able to eat fish again!

And then I saw my numbers…

Triglycerides down 100 points! Total cholesterol down 50 points! An improvement in every category – even when I didn’t eat anywhere near the pristine goals I had been given. (Have you tried to eat every single meal of vegetables when you only shop for groceries once a week? You have to buy in such large quantities and then they spoil before you can eat them so you end up wasting far too much. First-world problems, I know.) Staring at the data that didn’t lie, I couldn’t decide if I was happy or mad. I was beyond ecstatic that my efforts had produced such drastic changes in my blood work. But that also cemented the need and the validity of this damn vegan lifestyle that I don’t want to maintain.

This morning was my appointment with my doctor. Given the success of my efforts from the last three months, I had spent the last two days gearing up for my latest negotiation – being done with immunosuppression. I even skipped taking my morning dose in hopes she would agree and I’d never have to take the damn thing ever again. As it usually happens, I didn’t get exactly what I wanted but somewhere in the middle. We talked about how hard it is to eat well-rounded meals and the drawbacks of being vegan. To my surprise she said she agreed that fish once in a while if I maintained the lack of milk and eggs would be okay. As for the immunosuppressant, instead of a lower dose for three months and then more blood work that she wanted, or the stop taking any of it today that I wanted, we compromised on a half dose for one month and then bi-weekly blood tests for two months to monitor closely whether I stay in remission. It means I don’t have to refill that prescription ever again. What it will cost me out of pocket for lab work after my high deductible resets next month will be more than worth it.

So, I remain a reluctant vegan who does eat fish on occasion and dairy only rarely. Things could definitely be worse! It is hard to believe I’m nearing the very end of this crazy bout of kidney disease. *knock on wood* I hope my kidneys have been fooled into forgetting they have anything wrong with them and remain forgetful long after I stop taking the drugs that created the forgetfulness in the first place. Four more weeks and the real question of what my life looks like long-term can be answered. Now if you’ll excuse me, I’ve got some tuna to eat!


The proof is in the blood work

I did a little experiment this past month. There is something so appealing to testing a hypothesis that I find impossible to resist. After the initial scare of “I almost died” and it’s close cousin “I have kidney disease” were over and I’d settled into treatment, there was apparently not enough excitement in my life.

Here’s some background… My blood work has consistently been getting better and better and with standing orders for testing every two weeks, I could keep a very close eye on things. Last month when I saw my specialist she said I was doing well enough that I didn’t need such careful monitoring and changed my lab orders to once a month instead of every two weeks. Plus, I didn’t need to see her every month but every other month. Remember those essential oils I mentioned that I’d been taking? Well, they are really expensive – not all of them but the ones I needed, lucky me. And the more I researched the oils and supplements the more I wondered if just taking the company’s recommended daily supplements – which included basically the same oils I was taking individually everyday – would work just as well. Not only was there potential cost benefits if they did, but the convenience of pre-packaged supplements was far more appealing than the mess associated with putting drops of oil in a tiny little gelcap twice a day.

So, last month instead of reordering the Clove oil I was out of, I ordered the supplements instead and decided to test the theory that they were just as beneficial as what I’d been doing.

A month later, my skin is clearer, my colon is cleaner and my energy levels are back up into the normal range. I’m super happy with the supplements and will continue taking them for sure because of the benefits to my overall health. But what about my specific health concern?

Yesterday was my monthly lab work. And this morning I saw my test results. Disappointingly, my steady decline in the proteinuria I’ve been enjoying was not there. Instead it was up – almost double – from the level it was last month.

I’m not sure how I feel about this…

On the one hand, I am now determined to start taking the individual oils again like before and see if my hypothesis is correct next month when I expect to see a better result than this month. The excitement of a provable theory exhilarates me. On the other hand, I’m kind of irritated that my idea to save money and get the same benefits from the essential oils through the supplements rather than individual oils is out the window. Now I either have to give up taking the daily supplements or be okay with spending even more money than I was before to do both. Talk about a backfire!

My brain is also trying to compute what else was different this month that could have contributed to the reverse in my trend. I’ve been eating healthier and basking daily in the joy of leafy green veggies that I can eat whenever I want again. I’ve ramped up my exercise with 4 days of regular yoga practice and just added lap swimming thanks to a brush-up-on-your-strokes-and-learn-how-to-kick-turn lesson from my daughter’s swim teacher.

Because I started out taking a half dose of the supplements which is recommended at first, my thirty-day supply has lasted me longer. So I’m going to continue taking the supplements and start back on the daily protocol of individual oils as before for the next 30 days. And then we’ll see what the lab work reveals next month.

Any bets on the results? And is anyone else as turned on by ACTUAL MEASURABLE DATA as I am?


Light at the end of the tunnel

It’s been a month since I started treatment for my new reality. I’ve got a frequent flyer card at the hospital. Having standing orders for lab work every two weeks is all it took. I’ve figured out my daily medication dance – some I take in the morning, some I take on an empty stomach, some I have to take with food, some only at night. It’s kind of crazy when I step back and look at it but I’ve gotten it down to almost second nature.

Last week I met with my kidney specialist to see how I’m responding to her treatment plan and figure out next steps. It was amazing to see what a difference my labs show after such a short amount of time. Kidneys still functioning perfectly, my proteinuria is down to 3 from 18 a month ago. My risk factor for long term decline is down to only a moderate chance. She also said that I’m no longer in danger of developing new blood clots and if I keep this up I should be all better in a few months and can taper off my meds. Best part: no more fluid restrictions and I can *try* running again and see how it goes. 

There was a little bump at the end of the week when I was so light headed and feeling sick at work that I went to the nurse and had my blood pressure checked. It was SUPER low so I went home and called the doctor. Apparently it was hot enough outside added to my higher dose of diuretic I’ve been taking that I was dehydrated. Drank some Gatorade and lowered my diuretic dose and I’m all better again.  

This week I met with my regular primary care doctor since it has been three months since we made our deal about going back on Coumadin – three months to the day as it turns out although I didn’t do that on purpose. It just happened to be the day I ran out of my medication and I didn’t want to refill that prescription again. He agrees that I’ve made enough progress that I can stop taking it. Hopefully forever this time! I’ve been celebrating with a huge salad every chance I’ve had because I can eat whatever greens I want to again. 

It’s no secret I’m into natural and alternative medicine and I wonder how much the essential oils I’ve added to my daily regiment have aided in this quick turn around from diagnosis to now. I look at it that they are all natural and they can’t hurt so why not add it to my mainstream medicine regiment. If it helps, I’ve gained speed toward good health; and if it doesn’t it won’t hurt anything by trying. After all the research and how much better I feel when I use them, I believe it is helping so I’m sticking with it.

Here’s to summer and improved health. Although I could do without the heat outside, I’m certainly not complaining about anything in my life right now.