Lost Time

I know that the concept of lost time is not unfamiliar to those of us with chronic illnesses, but it is particularly concerning for those with episodic chronic illness. Why? Because, we’re not sick ALL the time. Yet, we have periods lasting from hours to weeks where we’re not quite well. And then we have periods of days, weeks or months where we ARE quite well. The contrast between the two is, in my opinion, what drives the greater perception of lost time.

 

Every time I don’t feel well, there’s a sense of another day of chores lost, another day I could spend with family lost, another work day lost to sick time, opportunities for exercise lost, etc.

 

In my case, a migraine attack typically lasts a couple of days. A food allergy flare up typically lasts from a couple of days to a couple of weeks, depending on many factors. My degree of disability during those episodes is also variable, ranging from nearly bed-ridden to almost fully functional.

 

The common element running through all the times and conditions though is the inability to do things I want to do. It’s one thing to procrastinate or avoid tasks because you don’t feel like doing them. It’s another thing to be unable to do things because you lack the physical stamina (i.e., “spoon theory,” I’ll discuss in another blog) or just don’t feel well enough to do them. I get angry and frustrated when my body doesn’t give me the choice. I also find myself loading up on chores when I do feel able to perform, I assume in compensation. Overworking myself when I’m physically able to is probably not good for me either.

 

I’ve found the feeling of lost time has become worse as I’ve aged. This is probably normal, as you know that you have less time ahead of you than behind. Every illness flare up brings with it a sense of getting further behind in a life where you’re already running out of time. Skipping a workout or two when young is no big deal. When you’re older, muscles that you haven’t used in a few days are going to be sorer and you can’t push your body as hard. The older we get, the longer it takes to recover and build back up again. Chronic illness causes me to lose that momentum.

 

I don’t have any magical solution to this dilemma other than to make the most of your time when you’re able to. Most people would say I’m not a procrastinator. When something needs to get done, I get it done. Today, I have a migraine and I had to cancel out on several planned activities. Tomorrow, hopefully, I’ll feel better and can resume a normal workload.

Migraines

So, I’ve written a lot about my leaky guts and nothing yet about migraines. Time to correct that. Whether you consider migraines and leaky gut to be comorbid conditions or not, I’ll leave to your interpretation.

I had the first glimmerings of migraine attacks when I was in my mid teens. The first manifestations were what I now understand to be migraine auras. Since it was a visual disturbance, I described it to my ophthalmologist and he said it was an “ocular migraine” and seemed surprised it was not followed by severe headache. The attacks lasted about twenty minutes and left me feeling mildly headachy and light sensitive, but not overly so.

The classic migraine auras a few times per year were all that bothered me for more than a decade.

Then, in my late twenties, I started getting the gut-wrenching, skull-splitting headaches that migraines are better known for.

Simultaneously, I had a few episodes of numbness and tingling on one side of my body. I underwent extensive testing to rule out Lyme disease, multiple sclerosis and stroke among other things. All of those tests were negative, fortunately. I didn’t make the direct connection to migraines, and surprisingly neither did my neurologist. A diagnosis was inconclusive. Since I’ve now had the occasional numbness in clear connection with migraine attacks in recent years, I’m quite convinced that the early episodes of numbness were also migraine-related.

One thing you need to keep in mind if you’re not already familiar with migraines is that they NOT just bad headaches. A migraine is a neurological disease and presents many widely varied symptoms, and may occur with no head pain at all.

Moving along, in my later thirties and forties, my migraines began to settle into a regular pattern of weekly attacks. Some were worse than others, but I had at least a day per week when I wasn’t up to par. Probably once a month or so, I had a truly disabling attack that required time off from work. This cycle went on fairly steadily until 2016 when I started the Specific Carbohydrate Diet (SCD). The first few months of the SCD, I was completely migraine free for the first time in decades! That alone must mean something. Alas, as I went on to try to add additional foods and supplements back into my diet, I triggered flare ups and also migraines. Most of the attacks were minor, though I had a few really bad ones too.

Now that I’ve had the opportunity to bring my leaky guts under some better control with the SCD, it’s become clearer that my migraines are related to food reaction flare ups and the resulting general inflammation within my body. If I keep the flare ups under control, the migraines stay under control.

Generally speaking, I can often go months now between major migraine attacks. What a relief! I still frequently get what I call mini or micro migraines on a nearly weekly basis, but the level of discomfort is probably a 1 on a scale of 1 to 10. That I can live with.

Since I’m so sensitive to foods and supplements, I can only take a few prophylactic migraine remedies. I rely on specific brands of riboflavin and magnesium to help me out. My regimen consists of 400 mg of Solgar riboflavin (two 100 mg capsules with breakfast and dinner) and 4 tablets of Niche Mag-Tab SR, supplying (84 mg x 4) 336 mg of highly bioavailable magnesium. How do I know if these things do any good? Well, first and foremost, if I try to back down on the dosage of either, the migraines become more severe and frequent. Second, there is a lot of clinical research supporting riboflavin and magnesium as effective, low cost, and minimal side effect, migraine preventative supplements.

In a future blog, I’ll discuss one of the unique methods I’ve tried for migraine relief – the Cefaly device.

Recent Test Results – What’s Wrong and What’s Right

Last year, 2016, I had several blood tests ordered by both my primary care doctor and my gastroenterologist. This year, I had blood and stool tests run by my functional medicine doctor.

Obviously, I won’t bore you with all the technical details. Let’s just go over the most relevant and out-of-range issues.

Basic bloodwork from Labcorp

  • A couple of early tests showed slightly anomalous readings related to liver function. My doctor thought this was probably a sign of systemic inflammation. Later test was fine.
  • One test showed positive for ANA (anti nuclear antibodies). My doctor said this often accompanies autoimmune disorders and inflammatory bowel issues.
  • The 92 Food Allergy profile came back showing a IgG reaction to ALMOST EVERYTHING! Not terribly surprised, however, I consider the results inconclusive. It shows a high response to foods I had been eating regularly with no reaction and no response to foods that I had eaten recently that made me very sick.  So…???
  • A later basic test showed elevated kidney values, indicative of kidney failure, or in my case, too much protein intake. This was after I added beef to my diet. I backed off on the meat and should be OK now.
  • Vitamin D level is low. Working on that. I’ll write a separate blog on how I deal with vitamin D.
  • Thyroid function is marginal according to my doctor, although the test results were all within normal ranges. Under observation for now.

Detailed analysis from Spectracell

This test looks at cellular levels of vitamins and minerals and will better illustrate what you’ve been absorbing from your food and supplements over the past six months.

Most of my vitamin and mineral levels are very good. Even though my diet is very limited on the Specific Carbohydrate Diet, apparently chicken, beef, carrots and squash can be very healthy with a few tiny supplements.

  • B12 is low. Since the bought of anemia in early 2016, I had been taking 1000 mcg of methylcobalamin every week. Doctor said to increase to daily dosing and that should solve the problem.
  • Zinc and chromium is marginally low. I have been unable to take the mineral supplement recommended by the doctor. It makes me sick.

Detailed analysis of lipids and other arterial health indicators from Boston Heart Diagnostics

My overall cholesterol level is considered marginal by current medical standards, but my functional medicine doctor wants it to be higher. She feels that in order to heal and rebuild the cells in my digestive system (fix the leaky gut), I need lots of cholesterol.

The good news is that my body (liver) is not making any excess cholesterol and the type of HDL I have is very good at keeping the arteries clear of lipid deposits. The marginally high total cholesterol is a result of my high meat consumption. If and when I am able to reduce that, my cholesterol will naturally go back down.

This test revealed something no one else had ever told me. I have a genetic disorder called a methylation defect. This means that my body only processes folates with about 20% efficiency compared to someone without the defect. That explains why the Labcorp tests showed circulating levels of B12 were fine, while the Spectracell analysis showed B12 marginally low. Also, this results in elevated homocysteine which leads to a host of problems. I’ll go into more detail in a future blog.

Comprehensive stool analysis and parasitology from Doctor’s Data

No analysis of a digestive problem is complete without a poop test! Nothing unexpected here.

  • Minimal or absent good bacteria
  • Minimal neutral bacteria
  • No bad bacteria
  • No yeast
  • No giardia or cryptosporidium
  • Some indication of inflammation and occult blood

None of this is particularly surprising or inconsistent with previous results. I could tell you that my guts feel inflamed when I have a flare up. And of course most of my good bacteria was wiped out by antibiotics and never quite reestablished.

Sometimes you just have a bad day… week… month…

I really haven’t been feeling well lately. My functional medicine doctor gave me a long list of supplements and foods to try back in June. Most of the trials resulted in a failure. That is, I had a bad reaction and got sick. After a week or so of recovery, I’d try the next thing. And get sick again.

Then, out of the blue, some of the contents of my dietary staple SCD chicken soup started giving me trouble. First, the onions. Took those out and felt better. Next month, it was the celery. I had a lot of frozen soup left with celery still cooked in. So, I ate the soup with the celery picked out. I could probably pick out 95% of the solids. I initially felt better for a few days, then went downhill again. Darn, even the non-corporeal celery in the soup was a problem.

The roller coaster of food and supplement trials over the past few months, combined with the new reactions to cooked onions and celery, has left me feeling not so well.

I have low grade migraine symptoms coming and going. I feel very tired and lack energy. My digestion, while not outright bad, is irregular – sometimes very hungry, other times having no appetite. Bowels are responding with cramps and firmer movements. Oh, and the past few days have brought the dreaded brain fog. The fog has lifted this evening, allowing me enough coherence to write this.

Regardless of what the doctors tell me I need to supplement, my body is yelling at me that it needs a rest. I need a break from trying new foods and frequent reactions!

Enter the World of Functional Medicine

After spending lots time reading blogs dedicated to the Specific Carbohydrate Diet (SCD) and leaky gut, several things were becoming clear to me:

  1. Diet alone was not going to solve my problem;
  2. In the world of things treatable by the SCD, leaky gut is considered a “hard case” and given my responses to food and supplements, I am among the hardest of the hard cases;
  3. Most people need some level of supplementation and medical assistance beyond the SCD to truly get better;
  4. The most often referenced medical assistance takes the form of a doctor of “functional medicine.”

So, what exactly is functional medicine and how is it different from any other medicine? Hard to say with certainty. The Wikipedia article on functional medicine is very unflattering and mentions “nonsensical gobbledygook” and pseudoscience. At its best, functional medicine takes a more systemic approach and focuses on the interaction between bodily systems and the environment.  

Keep a couple of things in mind here.

  • First, I am a scientist. My radar for pseudoscience is always on alert. For example, the moment a doctor mentions homeopathy, it’s time to leave the room. Homeopathy is outright bunk. Water memory – you’ve got to be kidding!
  • Second, I have a very real illness that makes me very sick, yet is dismissed by most doctors as something they don’t fully understand or know how to treat. In essence, I have an illness on the fringe of medical science.

The end result of these seemingly conflicting concepts is that I have to navigate a careful path of treatments that may be somewhat outside current mainstream medical thinking while not falling into the trap of pseudoscience, bunkum and snake oil.

So, I set out to find a functional medicine specialist. It turns out, after much research on the internet, there’s a very highly qualified doctor only a couple of miles from my house! That’s the good news. Bad news is that she doesn’t take insurance and is very expensive. At this point, I don’t care too much about the money, within limits.

About a year after beginning the SCD and working with a gastroenterologist experienced in treating leaky gut patients, who left me with the usual “if it makes you sick, don’t eat it,” I made an appointment with a functional medicine doctor.

Hmm, very interesting experience. Clearly, with regard to my symptoms and reactions, she “gets it.” The follow up testing was extremely comprehensive and told me things I had never known before as well as a some details that were no surprise.

Stay tuned, I’ll give you more details in the next blog.

History Part 6 – The Specific Carbohydrate Diet – A New Way of Looking At Food

I know what you’re thinking when you hear about a named “diet.” It’s probably some weight loss fad or medical gimmick. I had read about the Specific Carbohydrate Diet (SCD for short) many years ago and dismissed it for several reasons: 1) it’s HARD to stick with it – many people who try it drop out because of the difficulties in food preparation; 2) it’s recommended for celiac disease, Crohn’s, ulcerative colitis, and severe inflammatory bowel diseases, which I thankfully don’t have.

Well, after almost four years of rice and apples, to which I was developing allergies, I needed a serious and radical change to my diet. My previous doctor always complained that I wasn’t getting enough protein and that there is no such thing as a healthy vegetarian.

In retrospect, I don’t know why I gravitated toward the SCD given other similar choices like anti-inflammatory paleo, GAPS, FODMAP, etc. Perhaps the appeal of a very, very strict and highly controlled diet that was laid out in phases of gradual food introduction was what sold me. Regardless, I decided, in May 2016, to give it a go.

Yes, the SCD is hard to follow. There are many helpful websites concerning the SCD, some of which are listed on my “links” page if you want to learn more. The most basic tenet is to eliminate all carbohydrates that are not simple mono-saccharides. The allowable foods are basically meats, fats, fermented milk products, certain vegetables and some fruits and nuts. Absolutely NO sugar or grain products of any kind are permitted. The first phase is mostly meat, pureed carrots and chicken soup. Think of it as rebooting your digestive system like when you first start an infant on solid food. What do you give them that they can easily digest? Pureed meats and veggies.

The SCD actually has a long history since it was first invented in the 1950s, but it is only recently gathering steam and has been researched and tested in clinical applications at major hospitals. Guess what, it works. At least, for Crohn’s and ulcerative colitis, it is effective. Leaky gut is still barely beyond fringe science and treatment has not been well researched.

But, the SCD is not a diet you just jump into and eat whatever is on the safe food list, unless you really want to fail! It requires a careful phase-in. I started the early phase with the bases of chicken, pureed carrots and homemade chicken soup. They highly recommend bone broth as well, though I take a shortcut and simply use plain gelatin. I spend enough hours in the kitchen as it is. Making homemade bone broth would put me over the edge.

Also, in May 2016, I started seeing a couple of new doctors. I had had a recent annual physical with a new primary care doc. When I told her about my history of food allergies and digestive ills, she looked at me like I had three heads, said “that’s strange” and suggested I see a gastroenterologist. Duh, like I’d never done that!

OK, so I went off onto the internet to try and find a gastroenterologist with some understanding of food allergies. The last thing I needed was to go back to someone who just diagnosed gastritis or stomach virus. Fortunately, my search yielded a specialist who even took my insurance. His diagnosis – multiple food allergies from leaky gut. Well, he was moderately helpful and endorsed my use of the SCD to try and heal my guts. However, after about four visits, a few blood tests to rule out other problems, and five months of time, his advice basically trickled down to “you have to eventually figure out what foods you can eat and avoid anything that causes a flare up.” This is not vastly different from the advice of many years earlier of “if it makes you sick, don’t eat it.”

Ahhh, is there no cure for leaky gut but to avoid most of the world of food?!?!

Maybe… maybe not… Stay tuned for the next blog where I start working with a doctor who really wants to cure me.