On June, 18 2012 I woke up with sore hands—more specifically a very sore right hand/wrist and a slightly sore left hand. There aren’t many things biologically that cause symmetric pain or difficulty. My first guess was Rheumatoid Arthritis, but I didn’t share this thought. I dutifully changed my laptop set up to make it more ergonomic, began Aikido hand stretches with the advice of a friend, and otherwise tried to ignore what, to me, was painfully obvious. Pun intended. It’s not the first time that my education and experience empowered me with information that I really would rather not have retained. I’m joking, of course, but sometimes I wonder what it would be like NOT to know the specifics of some health-related problem I’m experiencing. I’ll revisit this in a different post.
By June 29, my partner was driving me to all my appointments because I could not use my hands. By saying I could not use my hands let me explain that it was painful to pull up my pants after using the bathroom, hold a coffee cup, set the table (let alone cook), get up from a chair using my hands as leverage, use my cane, and, therefore, walk etc. You get the picture. My physical therapist assured me that I was structurally stable and refused to listen to my concerns. I began informing my MDs of this new development. My neurologist assured me it had nothing to do with my MS. My GP, who didn’t even bother to examine my hands, ordered an x-ray and referred me to a rheumatologist. From his nonchalant behavior and lack of professionalism, I knew it was the last time I would see him. Note to self: Find a new GP.
It was at this juncture, the last days of July, that I received an email from a friend asking me to assess the scientific validity (also known as BS factor) of some work she was looking at. Could these ideas possibly help us? She had just been diagnosed with her second auto-immune disease. We had a regular club going it seemed. What I read floored me. She had forwarded me information about Loren Cordain’s talks regarding MS and the paleo diet. Also forwarded was information about a researcher, Fasano, who does work on leaky gut.
The Paleo Diet and Multiple Sclerosis (MS) 1/7 parts
I sat and watched Cordain’s talk and cried. Actually, that’s a lie. I sobbed. It made so much sense to me. It wasn’t just some new fad claiming to be a cure; it actually made scientific sense. They were talking my language! I wrote down the citations on Cordain’s slides and read them. I was so convinced, I began paleo on August 1, 2012. I dove into reading Fasano’s research of linking leaky gut syndrome with auto-immune disease. Between Cordain and Fasano, I believed I had my answer as to WHY I developed TWO auto-immune diseases.
I saw the PA in the rheumatology office on August 1. By this time my hands were quite swollen, and the pain was into my shoulders and neck, as well. I just wanted a confirmation of my suspicions so that I could get on with my life as I did after being diagnosed with MS. I still hadn’t thoroughly voiced my thoughts to my partner as his life had been totally turned upside down by listening to me gasp with pain whenever I attempted to use my hands or shoulders, trying to run his two companies AND run a household. I was a wreck and utterly useless. I briefly perceived it might be better to not tell him at this point that I believed I had a second auto-immune disease, but you can’t exactly “go paleo” without notice. I had to empty the house of all the non-paleo items like flour, pasta, legumes, canned tomatoes, etc. In my current state I, obviously, needed help to accomplish this task.
The physician’s assistant (PA) was very pleasant. She examined my swollen hands, ordered tests, and confided to me that 1) she herself had RA and 2) she would no longer be working as the PA in that office. Great. My cyclic citrullinated peptide (CCP) antibody test came back negative, but the lab botched the Rheumatoid Factor (RF). I asked that the MD (who the PA worked for) order additional tests since I had to be redrawn for the RF; I had just discovered that all women in my family have Hashimoto’s, and I wanted to check my thyroid function. He declined via his nurse, and I learned that he didn’t realize I’d already seen his PA because he didn’t bother to read my file. Scratch another MD.
By this time I was in so much pain I was close to not being able to function. If I had to get up in the middle of the night to use the restroom, I rolled out of bed but had trouble sitting on the toilet as that required my hands to sit safely (I don’t have the leg strength to sit without using my hands). I couldn’t get back into bed, so I slept on the floor with a blanket. Life was truly depressing.
August 14 found me sitting in a different rheumatologist’s office where he examined my hands, my negative CCP and RF results, and diagnosed me with inflammatory polyarthritis which is a nice way of saying sero-negative rheumatoid arthritis. Even with the negative results, his exact words were, “Looks like a duck, quacks like a duck…it’s a duck.” He wanted me on methotrexate, the “gold standard” for RA treatment, immediately. I said no. I was going to Japan in September and was not going to be on a “new” drug while out of the country. I knew my body well enough NOT to do that. This decision would prove to be monumental later, but that’s yet another post. I told him that I planned on following the paleo diet and had, in fact, already started. He frowned and said since he worked in Boulder, he’d seen it all. Diet was definitely NOT going to change my hands. The current scientific research showed the faster you could get the swelling and pain under control, the better the long-term prognosis for the disease. Pain and swelling means that damage is ongoing. He encouraged me to at least begin oral prednisone. We could revisit the methotrexate discussion when I returned from Japan. I declined and left the office. I got as far as the building lobby before my brain kicked in. How could I turn my back on scientific data that plainly showed the faster I was able to get the damage under control, the better my prognosis? What fun is Japan going to be when I’m in so much pain? I decided to start prednisone to ease the swelling and excruciating pain but continue with the paleo diet. I retraced my steps to his office; call in the prednisone Rx, please. I REALLY wanted to believe the diet would work, but I didn’t yet trust in it fully. I only had anecdotal evidence from the web and tons of books on paleo. What if I chose the wrong path?
Old school won had won that day. I began prednisone, but the next day I was in the office of a functional medicine MD. This is the point where it is important to understand the following: I was desperate. I was just diagnosed with a SECOND auto-immune disease. A SECOND incurable-illness. No cure. Yes, you are still living, but part of this life is going to be a very real amount of pain and suffering. After all, I had all this down from living with MS for the last 20+ years.
The doctor was pleased to see I was already paleo but set out a plan to get me onto natural anti-inflammatories and do extensive testing to find out exactly what foods I was allergic to, and what specific genetic coding I may carry which may cause nutritional deficiencies. I also filled out an extensive personal and medical history.
When the tests came back in mid-September, I was not amused. I am host to a healthy population of campylobacter bacteria (implicated in RA) and have fungal dysbiosis. I carry genes that are permissive for celiac disease and a specific methylation mutation in my folate pathway that precludes me from taking many pharmaceuticals including methotrexate—a folate antagonist. Oh, and I harbor an unknown parasite. Clearly I need to start charging rent. Aside from the huge number of foods I knew I was allergic to (tree nuts, peanuts, shellfish, berries etc.), I am allergic to dairy, eggs, brown rice and a host of additional food items. Good thing I had already decided to go paleo. I was now convinced the way I had been eating my entire life, consuming things I am allergic to, was part of my auto-immune picture.
I began taking a multitude of supplements based on my MD’s expertise and the test findings. My body was depleted of a large number of nutrients. In order to get well, I needed to remedy that situation. Aside from that, I also needed to rid myself of the yeast and the bad bacteria. This was going to be quite the undertaking. Little did I know just how big of an undertaking this would turn out to be.
We went to Japan as planned and returned in October. Being convinced as I was of the impact of my diet on my conditions, I wanted to postpone the discussion of methotrexate. In the end, my rheumatologist agreed to extending the low-dose prednisone until the end of December—no further. Tapering off the prednisone began, and I was terrified. I continued with my supplements, and the doctor continued to modify them as she saw fit. I tried several different supplements in the quest to rid myself of yeast only to make myself very sick. Back to the drawing board and attempting to return to some sense of stability seemed to be my normal state. It was terribly frustrating.
The end of December also saw the end of the low-dose prednisone taper. I had stuck to the paleo diet with all of the additional requirements for auto-immune disorders (no tomatoes, nightshades, etc.) since August 1. I was pain-free. It worked. All of my supplements and the very strict diet (call it paleo on steroids-ha, ha) worked. I was still terrified. I felt like a fraud. I felt like I was hiding a secret in my hands and that the rheumatologist would look at them and tell me the destruction he saw, what I had allowed to occur, but I had no pain.
I saw him in January 2013. He took my hands in his and peered at them, poked and prodded. I couldn’t even meet his eyes I was so afraid. He said, “What’s your secret?” I responded, “Strict paleo and my functional medicine MD’s supplements.” He asked if I wanted an ultrasound to look inside my hands to see if we could find any ongoing disease activity. We looked and found nothing. The ultrasound revealed nada, zip, no swelling, no internal inflammation. My RA was in remission or just plain gone. I’d prefer to think of it as the latter.
The caveat in this story is the following. If you watch Cordain’s talk, near the end he presents the results of an experiment with an N=4. By going paleo, the 3 people who were newly diagnosed with MS were able to stop their disease in its tracks—basically reverse the symptoms. The 4th person who had MS for much longer plateaued but still had deficits from her years spent with the disease. In my case, I believe the newly-diagnosed RA was silenced by my change in diet and nutrition where the MS, present for a much longer duration, has plateaued. Now we’ll see about reversing as much as I am able.
I will add that at the time of writing this piece, January 2014. I remain paleo, religiously take my host of supplements, am still working on ridding my body of the squatters, but I have no symptoms of RA. I am also regaining function previously lost because of MS.
PS I have a new GP and haven’t seen my rheumatologist since January 2013. I see my functional medicine MD regularly. 🙂