Like many times before in January these past 7 years, I am seeking a new direction for my medical care as a serious illness continues. A recent autoimmune blood test found antibodies for a particular type of central nervous system disease. So of course we are off now pursuing the next big thing! Here’s an initial brain dump on the subject (absolutely no pun intended!).
Autoimmune disease (AD) is a disease in which the body’s immune system attacks healthy cells. There are up to 100 different types of AD (depending upon which resource you use) and 3 triggers that I can discern that initiate the onset of symptoms:
Gene expression that gets turned on. This is where your have genetic markers for a particular condition coming from somewhere in your family tree that starts to express itself as active disease when triggered by stress, infection, toxicity, or some traumatic event.
Infection by bacteria, fungus, or viral agents. This appears to apply when the infection is severe or chronic.
Cancer. This may be a chicken-or-egg type of dynamic where a patient may never know what came first.
Docs have diagnosed me with a few conditions in the past that may be considered autoimmune disease. But it wasn’t until my Doc finally decided to start testing me for AD antibodies (Cyrex Array #7) that something concrete was identified and it is serious. The condition mimics a neurological disease that my Father had. The biotoxin illness that triggered my 7 years of chronic illness (beginning the same year in which he passed away, interestingly) and subsequent infections may also contribute to my situation. Thankfully, no cancer has been identified so we will stick with the first 2 triggers as entering me into the AD phase of my long term treatment plan.
So I started researching as usual and discovered two primary approaches to neurological disease in general: 1) manage the symptoms of a debilitating, degenerating course, or 2) treat it with immunotherapy and medications that have the potential to reverse its course when there is an AD component. My Doc suggested continuing various supplements and physical therapy. A second Functional Medicine Doc suggested a “functional medicine chiropractor” and a neurologist who specializes in Parkinson’s Disease. Of course I will consider these but I am also not going to wait around while my body deteriorates without seeking something more substantial! Fortunately it appears that for me, there may be medical treatment options including what is called IVIg that have the potential to REVERSE THE EPISODES THAT APPEAR SEIZURE-LIKE, VIRTUALLY EVERY DAY FOR NEARLY 7 YEARS! Yes, let’s do that!
Yesterday I set up an account and submitted a brief case history for review by the Autoimmune Clinic at the Mayo Clinic in Rochester, Minnesota. Their neurologists specialize in neuroimmunology, participate in the latest research, and are willing to initiate trials of immunotherapies and medications to help their patients. I had contacted a couple of researchers directly, consulted the leader of a regional support group, watched lectures and interviews, and reviewed the literature on the factors relevant to my case. “Time is brain” and “time is cerebellum” appeared several times in the studies, suggesting not waiting around for something to happen. Overall, this field of study is very complex; I believe that I understand the main principles enough to share with my beloved Stevers and, as one accord, proceed in this new direction in my medical care.
As with anything new and complicated, there are many unknowns ahead of us. Will the neurologists accept my case and when will I be able to schedule my consultation, testing, treatment? How much, if any, will my insurance cover? How will I tolerate a lumbar puncture procedure likely needed for comprehensive diagnostic work-up even if administered under anesthesia? Will we be able to pay for the travel and out-of-pocket expenses that, for immunotherapy, could exceed tens of thousands of dollars? Can any of the treatment, if indicated, be completed locally and how many times will I need to return to Mayo Clinic (a full day of driving away from home)? In the winter when it’s too cold to camp, will I be able to tolerate staying in a hotel often laden with fragrances that trigger convulsive episodes? Will our aging and endearing pup Elle be able to travel and stay with us?
You know we are praying about all of these questions already! I am a bit frightened by the diagnosis I have been given, having worked with persons with movement disorders during my career as an Occupational Therapist. Yet I am also in awe that this information came NOW and not 3 years ago when I first considered a consultation at Mayo Clinic. We have learned so much since then, ruled out other conditions that don’t apply to me, treated conditions that put me in a better position to benefit from an Autoimmune Clinic, confirmed that this illness is not psychiatric, and know the process of travelling for medical care (as in my craniomandibular specialist whose care continues).
I feel like the expression on Elle’s face in this picture. Three paws in view and one paw under the rug with the unknowns lurking underneath there as well. Will there be Rubber Duckies or sweetness from the Lord to lighten this journey? Surely. Each phase of this time in my life has brought blessing with the hardships. Besides, you know I love road trips with Steve! And Elle!
Hang tight Gentle Reader. We may be headed north really soon! JJ
Did you know that you can purchase a heavy duty chair for a sheep? Crazy stuff! I cracked up when I saw it in the midst of researching online sources for parasite treatments. This chair is for trimming the hooves of sheep. I THINK I NEED ONE TOO!!!
“A sheep or a heavy duty chair?” you ask. Who knows, maybe both! Because that is just how insane things have gotten over here, trying to diagnose and treat a serious illness without a clear path to follow. The latest example is trying to treat for parasites. They harbor metals and toxins so it makes sense that my treatment would be so complicated, especially when markers for metals and toxins have been high for me at some point. But try and define which parasite you have after numerous tests are inconclusive, you end up going down a dark hole of guessing or worse yet relying on alternative energy testing — neither one of which are appealing to me.
But I have seen parasites over here. The worms you can see; the microscopic protozoa you cannot. Over the past few months I have been treating them with a variety of herbals or limited doses of medications. Some symptoms got better and my worst symptoms got worse for a day or two. So what is it: protozoans or worms? Both? Where would I have picked them up anyways? Why have I gotten temporary relief with some symptoms and violent convulsive episodes and headaches with others? The answers don’t come easily yet it appears that it is because I am on the right track after all. Inflammation and brain swelling follows die off of parasites if they are in your brain, your central nervous system. Many helminths can cause seizures. Fortunately/unfortunately, brain scans have not found any cysts. The only remaining diagnostic tools are more obscure labs or a lumbar puncture to test my cerebral spinal fluid. I had spinal injections many years ago. I don’t want a lumbar puncture!
So here’s how insane things have gotten lately:
If my Doctor’s office cannot find the right labs to process additional parasite testing then I am responsible to search for them nationwide and provide the office with all of the information, facilitate the referrals, and obtain the test procedures. By the way, experience tells me that very likely I will have to follow up on getting the results to the Doctor’s office, confirming receipt as well figuring out how to fit reviewing them into my appointments already limited by cancellations 25% of the time by their office. New appointments are 5 months from now . . .
The trial-n-error of a variety of herbal, over-the-counter, and drug options for treating parasites has left me having to manage virtually every aspect of this potential cause of illness. Research continues to dominate my waking hours, trying to find the best review articles and treatment strategies for those that may apply to my care. Thankfully my Doctor, after much resistance and lectures on his liability concerns, will review this literature and make recommendations in light of it. The newest step in me having to find appropriate laboratories seems too much to bear. I guess I have no choice but to proceed and hope I find the right information online somewhere, Lord willing. More time and dozens of more seizure attacks will follow daily in the interim. At least Ibuprofen is helping now with the headaches!
The billing of two of three past treatment situations are my “special project” each week. Looks like I just got the first one resolved from an ambulance trip in January so hey, let’s add two more, eh? Getting pre-auth for a special injection and getting reimbursement for a specialized test in July remain. No problem. This is why we go through so many reams of paper around here dontcha know? Printing out the documentation for tracking everything, following up, yada, yada, yada fills my days. Just doin’ my job, ma’am!
My latest dilemma is the most crazy: if I am convinced that parasite treatments are needed but I am unable to obtain the strongest ones via a traditional medical route then others in my situation have ordered medications from veterinary or international sources. Ordering meds online scares the heck out of me! Members of certain Facebook groups claim both are very safe options and have worked well for them when their Doctors poo-pooed their requests for treatment. I just dunno about this . . .Systemic parasitic infections are often a clinical diagnosis just like chronic Lyme. The latter seems to be more acceptable in illness-focused groups than the former. But the evidence is growing (pun intended!) that one of the strategies opportunistic infections use to stay alive inside of you is to hide in larger parasitic organisms. The body may even harbor parasites to keep these smaller organisms from killing us. And the research confirms that parasites harbor toxic metals in possibly yet another symbiotic, protective mechanism. At some point you have to address both the chicken-and-the-egg in these toxic relationships. Kill the parasites and out comes other toxins both organic and inorganic. Talk about a “herx!” At least now I have an Ultra Binder to minimize the herxheimer reaction.
Very simply, the only rescue remedy I have remaining to stop the worst of the convulsive episodes is a high dose of steroids. Nothing else helps for more than a few minutes. The problem with this is that my Doctor won’t prescribe but a few doses because of osteoporosis (that likely came from antibiotic treatment for chronic Lyme last year). I understand his thinking. However, he doubted me when I told him that I only used it sparingly even though I showed him the bottle with remaining doses still in the bottle! He decided that it would be appropriate to use steroids when the convulsive episodes exceed 7 hours. SEVEN HOURS! That was what I did a week ago Saturday. It was hell! If I did not have those remaining few pills left, I would have landed in the Emergency Room again. Holy cow. Holy sheep? What an insane treatment plan.
So I continue to stay up very late at night most nights because sometimes it lessens the convulsive episodes. Often there are breakthrough spikes while I sit here with you and while my beloved sleeps soundly just beyond the door without me . . .
What an insane treatment plan indeed. So gather ’round anyone lost in the sea of forgotten medical mania and serve up a tincture of sheep elixir for a sorry night of seizing under the moon. Or maybe not. I have no idea at this point. But I gotta tell ya that wrapping up in a nice wool blanket on a bark-a-lounger sounds pretty good right now. Move over Sheepy. This gal’s gonna need to rest more than you do right now . . .