The other day, I wondered to myself, how would the rich deal with this disease? I'd never heard of a celebrity or professional athlete contracting it, but surely this must have happened. Indeed, it has, and I found two stories about it.
The first was a shocker that cast a different light on a prominent fixture of early noughties popular culture: Paula Abdul. In 2005, Abdul did an interview with People magazine about her lifelong struggle with CRPS, which she contracted in high school after a cheerleading injury and a few subsequent car accidents. Long story short, she went through the usual crucible of misdiagnoses, surgeries, and pain medications before meeting with a rheumatologist who prescribed a medication that has worked wonders for her for decades: Etanercept, or Enbrel.
The other story was that of a football player for the Seattle Seahawks, Naz Jones, who contracted full-body CRPS at the age of fifteen, which he retrospectively assumes must have been a result of a number of youth football injuries. He spent months in a wheelchair, his limbs alternately swelling, in constant pain. He worked arduously through intensive physical therapy, pushing himself far beyond what was tolerable, his goal to become a professional football player. Of course, he also finally found medical intervention that helped him where pain medication had not: Enbrel. He's now on his third year as a Seahawk.
Enbrel is an injectable medication that treats autoimmune diseases by blocking tumor necrosis factor (TNF), a cytokine (basically, compounds that regulate inflammation response). Cytokines are produced by glia, which are a recent frontier in inflammation research. Because it is widely-accepted that CRPS involves glial activation, this explains the application of Enbrel, a medication which mitigates a compound key to the glial activation that causes inflammation.
At present, Enbrel is only FDA-approved for five different treatments: rheumatoid arthritis, juvenile idiopathic arthritis and psoriatic arthritis, plaque psoriasis and ankylosing spondylitis. However, I came across a fantastically comprehensive pain blog, painmatters.wordpress.com, which has collected myriad etanercept-related case reports across the last few years of off-label applications of this drug. Here is a post collecting instances of extraordinary success for CRPS patients, and here is a series of case reports by a doctor who claims to have successfully treated a variety of neuropathic disorders with very limited (typically single-dose) etanercept injections.
Enbrel is not perfect. According to Drugs.com, Enbrel/etanercept increases the risk for a rare kind of lymphoma. The cancer correlation is not very well understood, as apparently, those who have rheumatoid arthritis are already more susceptible to cancer, likely due to the fact that it is an expression of an autoimmune disorder. Also, it's a brand-name drug with no generic version. GoodRx.com says that Humana (the insurance provider I used for this test) classifies it as a Tier 5 drug, the most expensive class of drugs according to insurance providers. That said, I think it may be possible to get it covered if you have it prescribed for rheumatoid arthritis rather than for off-label use (CRPS).
I don't have anywhere in particular to fit this into the structure of this website, but, given how very, very little there is about applying Enbrel to CRPS (I was able to find a total of five tweets about it, two of which were a response to the Naz Jones article,) I felt compelled to share this. Talk to your doctor if you are interested in this treatment. Some of you are at the point where you will try anything. This could be worth it.
Hi! It's been about a month, but my research has positively been a whirlwind. In the Mechanisms section, I've updated Inflammation and The Gut, which I've renamed to The Gut & Bacteria. I describe glial cells in the Inflammation section, which are definitely worth learning about if you've never heard of them. I've also changed Ultraviolet Blood Irradiation, a Treatment I hadn't yet described, to Treating for MAP, which I will now explain.
A couple months back, I came across a case study of a family widely infected with mycobacterium avium subspecies paratuberculosis, or MAP for short. Notably, one family member had Crohn's disease, a debilitating gastrointestinal inflammation condition, and another had CRPS. Both patients were treated with a combination of ultraviolet blood irradiation and antibiotics for their MAP infection. Upon elimination of MAP, the patient with Crohn's no longer had any symptoms, and the patient with CRPS also no longer had any symptoms.
MAP is a pathogen that causes a wasting disease called Johne's disease in cattle, but, until fairly recently, was not believed to be a human pathogen. It is now suspected of causing Crohn's, is sometimes also associated with causing ulcerative colitis, and is also suspected of causing rheumatoid arthritis (arthritis caused by inflammation) for people with a specific genetic defect. The theory is that MAP is passed from cattle through dairy or beef, or by waterways downstream from animal agriculture. It is likely dormant in the majority of those it infects. This is bolstered by the fact that "Mycobacterium tuberculosis causes active disease in only 10% of infected humans."
I found another disparate case study that, I believe, supports my suspicion that MAP does cause CRPS for some. This one is about a woman who presented with mood disturbances, neuropathy, hypothyroidism, joint pain, and IBS symptoms. After many years of misdiagnoses, she was eventually treated for her MAP infection with antibiotics, and described the resolution of her symptoms thusly: "My life has dramatically and astonishingly improved."
It is worth noting that hypothyroidism is common in CRPS patients. It's also worth noting that the patient with CRPS in the case study linked above also had hypothyroidism. Lastly (and most uncertainly), keep in mind that IBS symptoms and joint pain could have been the result of inflammation in those areas, as they often are. Combine all of this with the neuropathic disorder, and my interest is piqued.
There are a few problems with pursuing this treatment angle. First, there is very little data correlating CRPS with MAP. While a study was performed on a swath of rheumatoid arthritis patients to determine if they had MAP, no such study that I could find has been performed for CRPS patients. Second, testing for MAP is, apparently, difficult. Sitting before me as I type this is a fecal microbiota test which purports to include MAP in its result set. However, I have to wonder why this test is so easy to perform while every test in a trial or case study is performed from a blood culture. Is it because fecal tests are less accurate? Is there a meaningful difference between detecting MAP in the blood versus detecting it in stool? I just don't know enough to say. According to the HumanPara Foundation website, a test similar to the one I have (GI-MAP) is described favorably. HumanPara also suggests a lab in New Zealand, which performs a blood test.
The other problem is the esoteric nature of this approach. My partner reached out to their GI doctor, asking for MAP testing. The GI doctor responded that they don't know what that is. Should we end up with a positive MAP result, I suspect that we will have to give a PowerPoint presentation on MAP at a doctor's appointment in order to convince them to prescribe the necessary antibiotics. To compound the difficulty of selling this angle to a doctor without sounding like a "Munchie", ultraviolet blood irradiation is having a renaissance as a panacea for a variety of Instagrammable invisible illnesses, and, because of its virtually non-existent side effects, is widely and readily administered by health spa-type practitioners. Seeking these alternative (but very real, well-studied, clinically-proven) treatments often comes with the caveat that you may not have them administered under the supervision of an MD, which, I have to say, is very frustrating.
I'm exhausted, so I'll sign off with this: the research for this condition has taken me to some surprising corners of medical history, many of which are being drawn back into the light as new facets of how this disease presents are being discovered. It's exciting! I'm excited!
(Warning: the leech discussion is graphic and discusses leeches, blood, and wounds in detail. No one discussed was ever in danger, but the descriptions are not for everyone. You can skip to the dividing line to read about inflammation.)
Hello! Since I last updated, we moved forward on hirudotherapy treatment. There is a single hirudotherapist in our area, and given the relatively cheap price (~$250 per session), it was the easiest and most affordable treatment to try next.
My partner's CRPS originated from, and currently emanates from, a bunionectomy, specifically the scar site right above the big toe. So, per a promising series of case studies described by a podiatrist, we attempted to get leeches attached to the actual scar, as well as all over the affected area (the big toe and the surrounding area, basically.)
Unfortunately and ironically, due to the effects of CRPS, bloodflow is too limited in that area for the leeches to want to attach. Despite our best efforts, including smearing a bit of blood on the desired area, they wouldn't bite around the scar. It was a strange and important reminder of the fact that hirudotherapy, for all of its complex chemical processes, is very simply an animal biting you and making you bleed.
However, we did get successful attachments on the ankle (which is affected by CRPS), at the middle of the top of the foot, and just above the scar, on the inner-most side of the foot. The hirudotherapist also wanted to attach a couple at the tailbone, and so we let them. We were not charged per-leech, but for the session as a whole, which was around 90 minutes long. All told, there were seven leech attachments, five of which were on the foot. The case studies we attempted to model this experience on involved roughly ten simultaneous leech attachments.
The leeches themselves are initially gross, but ended up being really fascinating to observe. They were kept in a large glass jar, like the kind that barbers store their combs in, and were swimming in circles around the case as a snake would swim, or hanging halfway in and halfway out of the water by one of their ends, both of which have suckers. The hirudotherapist would scoop them up into a syringe with the pointed end broken off (basically a tube with a plunger), and would push the plunger to get them to plop out onto my partner. Leeches are basically worms, so they'd inchworm-crawl around until they found a spot they liked, would bite, and then would curl up like a little capital 'U' until they got too fat with blood to support their own weight, at which point they would just hang from the bite. Despite the extreme sensitivity of CRPS, my partner reported virtually no pain at all from all of this, which really speaks to the surprising power of leech saliva. The bites didn't hurt afterwards, either.
We knew going in that leeching was going to cause bleeding for up to 48 hours, and that the bites would not really hurt, but would absolutely itch for a while. It is safe to say we dramatically underestimated both of these side effects. Upon having the leeches detached, my partner's bites were dressed with menstrual pads. The hirudotherapist said they were the most absorbant bandage they'd yet found. We weren't bothered by this, but we did think it was kinda funny.
The pads were completely soaked within two hours. I can't imagine how much gauze we would have otherwise gone through.
The blood flowed evenly for over a day. The blood itself seemed thin and clear, which I'm guessing is a consequence of the blood-thinning agents in the leech's saliva. It also coagulated in jelly-like gobs at the bite site. I really cant stress enough how much leech bites bleed. It's not like a cut, even a relatively deep one. The bites just free-flow at basically the same rate for much longer than you expect, and the dressing needs to get changed quite often.
The bites themselves are little tringles, and they visibly bruise around the bite. The bruising is dark enough to look concerningly like an infection. It looks like a small traumatic puncture wound. They remained this way for over a week. Make no mistake: leeching is a little gruesome.
I don't know if they itched much from the start, but around the fourth or fifth day, there were periods during which the itching was maddeningly intense. It was a little alarming! Thankfully, this eventually subsided. I had read that they can itch badly for two weeks, but I don't believe it lasted quite that long.
In addition to the ick factor, the effect of blood loss is similar to donating blood. My partner was tired and woozy for a couple days after the treatment. Given that they are currently underweight (and were underweight prior to the treatment), we are going to abstain from a second attempt until they gain some weight. In my opinion, this is the most important thing to consider when deciding on when or if to undergo hirudotherapy.
It has been two weeks since the treatment. As hirudotherapy stimulates capilary growth and bloodflow, we used this session to attempt to increase bloodflow in the foot towards the affected area, at which point we would have a second attempt to get the leeches to bite on and around the scar. Unfortunately, my partner is just too underweight right now to undergo another round of blood loss, so we're holding off for the time being. We are still interested in giving this another shot.
Also now we have seven pet leeches - well, four, because three of them escaped on a hot day...
Now, on to Inflammation!
Today, I read an article by Vice that summarizes recent studies into the association between your gut and your brain. The role of microbiota in mental health has seen a lot of media attention in the last couple of years. It's now generally accepted that microbiota can affect your mood. Microbiota are believed to play a role in how your nervous system communicates with the rest of your body, specifically the vagus nerve, and I've speculated that this is partly why vagus nerve stimulation is approved for both stomach problems and pain conditions. The article I read today, The Vaccine That Could Prevent Stress, Anxiety, and Depression, discusses how a specific bacteria, mycobacterium vaccae, is believed to play a role in mitigating inflammation itself.
The problem with my initial extrapolation of the data prior to reading this article is that my definition of 'inflammation' was too limited. I was thinking of inflammation as physical, observable autoimmune symptoms, like swelling, heat, redness, pain, and dysfunction, in the stomach (like in UC or IBS), or in the body (as in CRPS). While I thought depression and anxiety were related to microbiota somehow, I thought that their effect on inflammation and mood disorders were separate processes. The studies that this article discusses, however, are showing something more profound:
Inflammation seems to directly cause mental health issues, while at the same time, stress and mental health issues themselves provoke inflammation—creating a dangerous feedback loop.
It isn't that your microbiota are causing inflammation and mood disorders separately. They are causing inflammation, which itself then causes mood disorders.
This would explain other studies which suggest that supplementing prebiotics - resistant starches that feed the microbiota in your lower intestine - can improve depression and anxiety (this one which shows lower cortisol levels in the saliva of those taking a specific kind of resistant starch, and this one in an animal model.) Previously-isolated observations of the role that microbiota play in our bodily systems are becoming more closely linked, in ways that suggest your microbiota are inextricably connected to how your body and mind responds to painful stimuli.
There's a lot to digest here (pun allowed), but suffice to say that supplementing mycobacterium vaccae (as well as other healthy bacteria) is something I am now intensely interested in. Unfortunately, I only found a single supplier of such a supplement, who I won't link to because I don't yet know what to make of the company producing it. If you search for this bacteria, you'll find this company pretty easily. The alternative to supplementation is pretty simple: play with dirt. I don't know how both methods of exposure compare to one another, but I'm erring towards supplementation in cases as extreme as CRPS. Either way, I'll update Inflammation and The Gut and pop this in the Treatments section soon.
The vagus nerve stimulation section also includes a personal anecdote from the last two months, during which my partner was administered a vagus nerve stimulator, known as Stivax here in the US. Unfortunately, it didn't work for them, for a few reasons. First of all, it provided no apparent relief for the two of three prescribed rounds for which they had it applied. The reason they didn't go through with the third round is because of the other reason: it is a poorly-designed and difficult device for ambulatory people.
My partner can limp-walk around the house, and can use arm crutches to get around outside (with the pain that that entails). Couple this range of movement with prescribed physical therapy, showering, sleeping, etc. and the device is fighting for purchase on the patient's ear virtually all day, every day. We're talking about a pad the size of a ladybug with two short needles protruding from its face, which press into the hard cartilage of the ear and are held there with medical tape, and are attached to a fixed battery by a short length of thin cable. It's not a sturdy design.
Like I say in the description, I still believe this treatment is the future for this condition, as well as many other conditions, but the Stivax in its current form is difficult to use correctly. The case report I will cite as reference corroborates our experience, as the patient also failed to continue treatment because a similar device operating on the same design principles kept falling out. Oh well.
Please, don't misunderstand me: I encourage anyone with the means to try this device to absolutely TRY IT! It may work for you, and it has no side effects whatsoever, so the only harm is in how much it may cost. If you are less ambulatory, more careful, whatever, it may be a great fit! If, like us, it doesn't work out, don't lose hope in this treatment. There are already new vagus nerve stimulators in development as we speak.
This is the inaugural post on my blog!
I am a web developer, so I decided to build this website from scratch, which was a lot of fun. I didn't have all of the content written yet, but I figured I would complete the content after I completed the website on which to put it, you know? So, I reached a feature-complete state a couple weeks ago, but never announced that I'd finished my website because I hadn't finished the content! So this post is basically about how I am acknowledging what still needs to be done, and in doing so, breathing the first breath of life into this place.
Here is what I have left to do:
I want to better understand some of the currently-incomplete treatment entries, so that'll probably take a couple weeks. Citations shouldn't take as long, as I have most of them bookmarked already. The footnote functionality should be fun and I'll probably stay up too late a few nights making it cool, but it's also least important to launching this site, so it'll happen last 😉 I also have a couple minor design tweaks, but I'll keep those to myself for now.
Anyway, thanks for visiting! Bookmark and come back often, I'm not stopping now!
See you soon!