Ugh! Non-Specific Results

The following blog entry was originally posted on 4/6. A note at the bottom was added on 4/9.

This is the story of my life -- non-specific symptoms, inconclusive results. Ugh!

MUSCLE BIOPSY RESULTS

I went to the neurologist this afternoon to get my muscle biopsy results. My results were slightly abnormal, but not abnormal enough to figure anything out. Here's an excerpt from the five page report my doctor gave me:

There are scattered atrophic fibers, most of which are type 2 fibers. This tendency for type 2 fiber atrophy is non-specific and can be seen in chronic deconditioning, steroid use, or myopathy related to underlying endocrine disorders. Specifically there are no ragged red fibers, ragged blue fibers, and all the oxidative enzymatic reactions were normal thus no evidence of mitochondrial abnormalities is present. There is no evidence of denervation, reinnervation, abnormal deposits, inflammation or vasculitis.

Impression: Abnormal muscle biopsy. Tendency for type 2 fiber atrophy.

Basically, there is no obvious evidence of any major neuromuscular disease OR mitochondrial disease, but my results were still abnormal.

I asked the neurologist about the "chronic deconditioning" and she said she typically doesn't see this degree of atrophy in people my age. She said something about 80 year-old's, but I missed half of what she said because I was still processing my results. Maybe she was comparing my level of atrophy to that of an 80 year-old. I know I am not nearly as active as most people my age or as active as I used to be; however, I am not completely inactive because I still work full time and live and work in places with stairs that I have to take.

I asked how my results compared to other people with ME/CFS that she's seen, and I was surprised when she said that she doesn't usually perform muscle biopsies on people with this ME/CFS. She said decided to do the biopsy on me because she felt my particular medical history and symptoms were such that further testing were indicated.

I commented to the doctor that I seem to receive the label "non-specific" quite often and that I keep having things just slightly wrong with me but not wrong enough for them to explain much. For a moment, I expected the doctor to tell me that this was all she could do, and I would just have to live with these non-specific results. I also thought she'd blame my lack of exercise for all my symptoms.

Fortunately, the doctor did not respond in the way I expected. In fact, she surprised me with her support.

She said what we do know is that my results are not normal. Furthermore, my results are abnormal enough that she thinks it's worth pursuing additional testing on my biopsy tissue to check for other mitochondrial diseases. I can't tell you how good it feels to have a doctor take me seriously and be so supportive in my quest for answers!

My neurologist will be in touch with the mitochondrial disease expert I met with a while back to discuss what additional tests to do on my muscle sample.

In the meantime, my neurologist is starting me on a mitochondrial disease "treatment" to see how I do. She has prescribed 100 mg of Co-enzyme Q10 three times a day and 100 mg of riboflavin (vitamin B2) three times a day (these supplements are available over the counter). Coincidentally, I had micronutrient testing done several years ago and was found to be deficient in both CoQ10 and riboflavin. For some reason I stopped taking CoQ10 (I don't really even remember why), and I switched from B2 supplements to a general B-complex vitamin that contained B2.

I guess I'm going back on the CoQ10 and B2, but this time the doses will be higher than I took before. Here is an interesting link to some treatments and therapies often used for mitochondrial disease.

SLEEP STUDY RESULTS

I mentioned a few posts ago that I had a sleep study done. My sleep study was followed by a Mutiple Sleep Latency Test (MSLT), which took up most of the day.

Several years ago my ME/CFS doctor suggested I get a sleep study because I was complaining of insomnia. To my surprise I was diagnosed with obstructive sleep apnea and prescribed a continuous positive airway pressure (CPAP) machine. I quickly stopped using the CPAP because it was noisy and kept me from sleeping rather then helping me sleep.

Because I am on a mission to look for ways to reduce my constant fatigue, I decided to get another sleep study so that I could get a new CPAP. I had my old results sent to my doctor. To my surprise, the sleep doctor I met with said that my old sleep study results seemed strange.

In fact, the five-year old document gives me the diagnosis of sleep apnea but also states that I had zero apnea incidences! What made the old sleep study results even more fishy was that they said my main complaint was excessive snoring and waking up gasping for breath. I have NEVER complained of this. What?! Had I been given a false diagnosis of sleep apnea just so they could sell me a CPAP?

The good sleep doctor suggested that I go ahead and have another sleep study done and also suggested I do an MSLT to check my daytime sleepiness. I should probably mention that I was open with my CFS/ME diagnosis from the start, but he still thought the sleep study and MSLT were options worth pursuing. I've been really lucky lately because the doctors I've seen have been aware of my CFS/ME diagnosis but still treated me with respect and didn't blow me off.

Here are the important notes from the two page sleep study report:

When I got these results from the sleep study, I felt so mad at the old sleep study company. I will refrain from jumping on my soapbox about medical ethics for now.

The MSLT was unlike anything I'd ever done before. Basically, I spent the day at the sleep study facility and was given opportunities to take 15 minute naps every two hours. The mean part is that every time after I fell asleep, they'd wake me up. It was awful! When I nap, I usually sleep for hours...not minutes.

I had inconclusive results. Surprise, surprise! My results were abnormal, but not abnormal enough to mean much. Here are the important notes from the MSLT report:

The results indicate some level daytime sleepiness but are not consistent with a diagnosis of narcolepsy.

My doctor labeled me with idiopathic hypersomnia -- meaning sleeping too much for unknown reasons.

At least my MSLT confirmed what I had always thought but never actually had any data to back up -- that I am often tired AND sleepy. "Tired" is more of a worn out feeling, while "sleepy" is the sensation of wanting to sleep.

The doctor asked if I wanted to try the medication Provigil (generic: modafinil), which is used to treat daytime sleepiness. After doing some reading, I've found that modafinil is often prescribed to patients with MS to help their fatigue. There are also some patients with ME/CFS who use the medication. Here's a 2009 article by the CFIDS Association of America on Provigil. Note: Provigil's generic equivalent is now available in the US.

I have decided to try generic modafinil (which costs me just $10 for a month's supply, thanks to my insurance company) to see if it helps me feel any better. I have some reservations about taking the drug. It is not an amphetamine, but it does have stimulant properties. I will try my first dose this weekend. I'll be sure to report on how things go!

Time for bed.

---------------
Note Added 4/9/12

I've decided to postpone taking the modafinil for a little while. I have a history of experiencing the rare and unusual side effects of medications (including anaphylaxis), so I'm waiting until my immune system calms down a little.

My immune system is currently in an allergic state because I was recently (though unintentionally) exposed to dairy/casein, so I'm dealing with itchy rashes at the moment. Some of the prepared foods I've eaten in the past few days must have had hidden dairy.

I try to ask about ingredients before I eat something if I haven't prepared it myself, but sometime either I forget to ask OR the person answering doesn't really understand food allergies and says the food is safe when it really isn't. Whatever the case may be, I am itchy.

I think these recent developments are actually good because I'll be able to see if the CoQ10 and B2 make me feel better without the use of modafinil. I'll keep you updated!

Part V: Nutritionist & Turning Point

On my first visit to the pelvic health center they suggested that, in addition to going to treatments at their facility, I see a nutritionist and a psychologist. They explained their center uses an holistic approach to healing. After I got past the "so you think I'm fat and crazy" reaction (sorry, but this is really how I felt at first), I realized that it couldn't hurt for me to follow their advice. It could even be a good thing.

I have lost 14 pounds since February, 8, 2011. That's 14 pounds in 11 weeks! What's even better is that I have not been on a diet of deprivation (i.e., starvation), nor have I had to go hungry or eat just small bits of "rabbit food" (i.e., tiny salads). I am eating as much food as I want (without overeating), and I am still losing weight. The trick is that I have changed what I eat.

As I mentioned in a previous post, PCOS and Pre-Diabetes, I was diagnosed with insulin resistance in January as a result of my PCOS. I started taking a medication called metformin to help with the condition, but I did not really see any results after a month.

Even before my first appointment with the nutritionist, I started a new diet program in February (they actually call it a "lifestyle change") through my work. The basic concepts I took away from the program were to:

• cut sugar intake -- no sugar in the first few weeks of the program, then in moderation after that; when having anything with sugar, it must be with a meal that includes protein (this helps the blood sugar and insulin levels from spiking)
• eat protein at every meal -- protein will keep you from feeling hungry for longer periods of time
• keep the size of your stomach in mind -- while the program did not focus on portion control, it explained that the human stomach is naturally about the size of a loosely held fist; somehow knowing my stomach really isn't that large keeps me from eating too much
• eat more slowly -- eating slowly will naturally cause you to eat less because your brain will feel satisfied sooner
• stop eating when satisfied -- which is before you have overeaten

The program lasted 10 weeks, so there are many more concepts that were covered; however, the ones I listed are the ones that have stuck with me. What made this particular program so doable was that it did not tell you specifically what to eat or not to eat (other than the sugar thing). Just cutting sugar (desserts, sweetened snacks, sodas, sports drinks, and anything else with sugar added),  allowed me to lose four (4!) pounds in the first week alone.

I saw my nutritionist a couple weeks after I started the above program. He agreed that I should not be eating any sugar. He also strongly believed that many of my problems were rooted in gluten sensitivity. Though skeptical at first, I embarked on a gluten-free and casein-free diet. (See my post Gluten-Free Me?! And Casein, Too? to read about the start of my gluten-free diet.) In my second appointment with the nutritionist, he gave me a personalized diet and supplement plan.

The main points I've taken away from my nutritionist's plan for me are:

• No gluten
• No casein (milk-derived products, including butter, creamy dressings and sauces, etc.)
• No sugar -- in addition to the obvious, this includes fruit drinks, fruit jams/jellies/preserves, and random food items with sugar added (reading food labels is more important than it used to be); I am allowed to have dessert about half a dozen times per year on very special occasions (such as my birthday, my husband's birthday, and special holidays)
• Eat more veggies and less fruit -- fruit contains so much sugar that it can act like a dessert and spike sugar and insulin levels; if I eat fruit, it is always as part of a meal along with a protein and healthy oil
• Eat the three macronutrients at every meal or snack -- protein, healthy oil high in omega-3's (like olive, almond, or avocado), and a complex carbohydrate (like spinach, other veggies, beans, etc.)
• Take supplements -- he gave me a pretty extensive list, but the most significant change was to take huge amounts of pharmacy-grade omega-3 fish oil (interestingly, I was already taking most of the supplements the nutritionist recommended; I will list my current supplements in a future post)

Because of my huge improvement in the way I feel, I have no doubt that I needed to go gluten and casein free. I have much more energy and am the closest to feeling truly healthy than I have ever felt since getting sick with CFIDS about ten years ago. I never imagined that just changing the way I eat would help me so much.

Embarking on this "extreme diet" has been easier than I anticipated. Don't get me wrong, it's been challenging and sometimes maddening; but it's been worth it. I think I was just so desperate to start feeling better and so tired of being sick and tired for so long, that I was ready and willing to make such a big life change. It took me about 8 weeks before I started to feel a big difference, and now that I am seeing so much improvement, I don't want to stop. I see the light at the end of the tunnel. For the first time in a long time, I am starting to believe that I will get better.

Interestingly, because my genetic test showed that I had two copies of a gluten sensitivity gene, it meant that both my parents gave me the gene. I told my parents about my results, and they decided to go gluten-free, too. Incidentally, they are feeling better on a gluten-free diet.

I can't say that my healthier eating habits have directly helped my vulvodynia, but they have certainly helped so many other aspects of my health. I'm amazed.

No More Cheese or Yogurt!

I know I promised to talk about my vulvodynia treatment in this post, but something came up that I wanted to write about. As I mentioned earlier this week, I'm working on cutting not only gluten from my diet but also milk products because of a possible casein (milk protein) intolerance. I already know that I have lactose (milk sugar) intolerance.

For over a month, the only milk products I had were what little milk product might be in fake butter, certain potato chips (sour cream and onion flavor), and salad dressings (usually Caesar). It's important to note that I did not have the above products very often.

Well, the last couple of days I had some serious milk products...and I'm paying the price.

Two nights ago, my husband and I had a lovely homemade dinner of tilapia, asparagus, and baked potato. In the past we have substituted plain yogurt for sour cream because we thought yogurt to be healthier than sour cream. That night was no different. We put plain yogurt on our potatoes. A couple hours after dinner, I had stomach pains and diarrhea. However, I did not connect the yogurt to the stomach problems until the next evening.

Last night we went to a Mexican restaurant for dinner and ordered queso (cheese dip) for our chips. Big mistake. I felt fine all through dinner, but I started to feel nauseated on the drive home. By the time we got home (about two hours after having the queso), my stomach was bothering me even more. Sure enough. Diarrhea. About 10 minutes later, I vomited from the nausea.

If I had not had a problem the night before, I might have blamed food poisoning on my stomach issue after the Mexican restaurant. However, because of the timing of things, I was pretty convinced that my problem was yogurt and cheese. So convinced, in fact, that I ate my leftovers (minus the cheese) for lunch about six hours ago and feel fine.

New Note (5/1/11): I found out today that some restaurants use queso that includes gluten. No wonder I had such a violent reaction. My body was reacting to gluten, casein, and lactose!

In addition to the gastrointestinal issues last night and the night before, my eczema has flared up quite a bit. I even developed a new area of rash just under my right ear. Hmmm...sounds like an allergic reaction to me.

I can't remember if I included links to the differences between lactose intolerance and casein intolerance in my gluten post, but eczema or skin rashes are common symptoms of casein intolerance. Diarrhea can be a symptom of both lactose and casein intolerance.

I am officially cutting out cheese and yogurt now. Before, I was generally avoiding it but not actively cutting it out of my diet. I don't know if that last sentence made any sense, but I'm leaving it in anyway! :)

Gluten-Free Me?! And Casein, Too?

Yet another issue that people with ME/CFS often battle is irritable bowel syndrome (IBS). I certainly have digestive issues. I've been diagnosed with IBS and acid reflux; I also have a range of nutritional deficiencies (vitamin D, iron, B2, CoQ10, glutathione) that I treat by taking supplements.

I alluded in a previous post that I am currently on an "extreme diet." I'm in the process of going gluten-free. For a cereal, bread, cracker, pasta, and dessert lover like me, going gluten-free is extreme.

Not long after I cut sugar from my diet, my physical therapist (I'll explain why I have a physical therapist in a future post) recommended that I see a nutritionist. The nutritionist the therapist recommended thought I had quite a few gluten intolerance symptoms. I told him that I had already been tested for celiac disease because my old gastroenterologist also thought I had celiac symptoms. In the absence of a positive celiac disease blood test, my gastroenterologist had diagnosed me with IBS.

The nutritionist was still convinced that I had a gluten sensitivity because of all my symptoms, so he suggested I go on a gluten-free diet. He said I could also get a genetic test done if I wanted, though he was pretty convinced it would come back positive for gluten sensitivity. After my epilepsy experience, I'm not inclined to believe what so-called experts tell me just because it seems to make sense. I decided to get the test.

I had the test done, and it took about three weeks to get the results. According to the results, I carry a duplicate set of genes that predispose me to gluten sensitivity. The company emphasizes that carrying a gluten sensitivity gene does not mean that a person will definitely develop gluten sensitivity or celiac; however, it does mean the person has tendencies toward those conditions.

The test was relatively inexpensive for a genetic test ($149 plus shipping, as of Feb 2011). The reason the company is able to provide lower costs is because they cut out the middleman. Patients order the test directly from the company (no doctor's orders needed), collect the genetic material (cheek swabs or stool collection) themselves, and mail it back to the company. They also do not accept insurance; however, they do provide a form that patients can submit to insurance companies. I submitted a claim to my insurance company, and they counted the payment toward my out-of-network deductible.

To be honest, I still hold a little bit of skepticism because this company's techniques are questioned by some "experts" in conventional medicine. Yet, if I'd listened to all the conventional medicine "experts" I've seen over the years, I might still be bedridden from my ME/CFS as I was eight years ago. I credit a combination of conventional medicine, alternative medicine, and thinking outside the box with getting me to where I am today -- a fairly high functioning person with ME/CFS. I digress.

The nutritionist also said that going on a gluten-free diet helps a lot of people feel better even if they are not technically gluten-intolerant or gluten-sensitive. I actually started on my gluten-free diet before getting my test results, so it has been a few weeks. I figured I had nothing to lose. If I felt better, it really didn't matter what the results said. If there was no change in how I felt, I could go back to my gluten ways.

I am not yet 100% gluten free, but I have cut out cereal, bread, crackers, pasta, and anything else that is an obvious offender. I have not yet cut out foods with hidden gluten (e.g., certain sauces, dressings, and soups), but that will be my next step. Since I am making a life-long change, I am doing it in phases so that I can be as compliant as possible.

I must admit that I seem to be feeling somewhat better, though I'm told it can takes months of being 100% gluten free before a person notices any major results. As an added bonus, cutting the heavy-hitter gluten products (a.k.a. big-time carbs) in addition to sugars has helped me to lose a total of 10 pounds in about five weeks with diet alone (i.e., no exercise).

Based on my symptoms, the nutritionist also thinks I have a milk protein intolerance -- more specifically a casein intolerance. I have stopped drinking milk (I would occasionally add milk to cereal or oatmeal even though I am lactose intolerant!), eating yogurt, and having cheese as a snack. I am not casein free yet because I still eat creamy dressings and other products with milk-proteins, but cutting out the biggest offenders seems to be helping. At some point, I plan to get tested for casein intolerance. I'm the kind of person that needs multiple sources of evidence before I buy into something.

As I mentioned before, I am making changes to my diet in phases so that I have time to adjust before the next big elimination. Wish me luck!

Oh, if you're wondering what company I used, it was EnteroLab. I have no connection to this lab, so I don't know if they ship internationally.

P.S. I just found this online discussion about EnteroLab and the validity of their results. It convinced me even more to keep up my gluten-free endeavor.