It’s a good thing that the Lord is great and consistent every single moment of every single day, keeping our best good in mind when we are bouncing around a bit in life. Yesterday was a day with two of those hits for me.
I recently described a dilemma I had with a new treatment direction as I trend overall toward recovery from a serious illness. I am grateful for some better days and many more better moments than most of the past 7 1/2 years. I’ve barely grasped the significance of all of the changes let alone managed the new patterns of illness/recovery/illness and so on. The following 2 pictures from my early “birthday celebration” depict this very well I think.
With the blessing of an incredible local endocrinologist (that I miraculously got to see in record timing) I am free to make my own changes with new medications (this time covered by insurance, yay!). Her intervention has led to both successful and sometimes confusing experimentation. I’ve consulted with a local compounding pharmacist, prayed and landed on a plan that includes returning to mercury detox. Mercury can be sequestered in the tissues of the thyroid. I suspect that Hg is getting stirred up, even dumping as I transition from suppressing the thyroid: Docs prescribed high doses of meds for decades but an Endo at the Mayo Clinic recommends drastically titrating them down. I can’t seem to go fast or slow enough to cope with the outcomes each day. Hg as a mitigating factor seems the only plausible explanation to me right now given that I was doing so well initially then the seizure attack episodes returned. And mercury binders, minerals affecting the thyroid inversely affect the pattern of episodes. Mercury showed up again in recent blood work . . . Gratefully I have the best tools around now for both of these avenues.
I felt really beat up and exhausted as we left the house later today yet rallied for the cause of celebrating my upcoming birthday none the less. The tickets were already purchased for a show that is a long car ride away from home and my beloved Steve would be doing all of the driving as usual. It was a good decision to go. I had a really nice time with Steve. Then I took my Hg binder supps too close to bedtime and have been awake all night. Well crapolaski! (That’s Polish, of course.) This time at least I was able to get some correspondence done as the night broke into day. Crying and weeping really take the life out of you for a time, then joy comes in the mourning.
But social media stars Diamond and Silk are exactly the rescue remedy that I needed today. They are a hoot! Don’t follow this link if you aren’t open to other political viewpoints in our hotbed of political correctness in the United States these days. These sisters are polarizing! Kind of refreshing for me: a gal who has chosen to be transparent with the real ups and downs of overcoming a serious illness. The straight scoop is just alright with me. “Don’t sugar-coat it baby! That’s right!” And so is the Word from Lord, Jesus Christ, that sees me through it all. I hope He will do the same for you Gentle Reader. Have you trusted in Him no matter what? JJ
And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.
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 . . .
As you may have read in the About Julie page of this blogsite, I treated for Chronic Lyme Disease early in the four years that I have been battling serious illness. I had not recovered my health four months after a bout with viral hepatitis and our Family Practice Physician convinced me and Steve that latent Lyme disease was keeping me sick. Then the story changed a few times . . .
Treatment for Lyme disease, Candida, mold exposure, mercury toxicity, gut parasites, and infected root-canaled teeth has still left me with the following symptoms four years later:
Hours of daily convulsive episodes, every single day
Painful shoulders, forearms, hips, neck, jaw, and more
Ringing in my ears
Multiple severe chemical, mold, and sound/light sensitivities
Significant nutritional and hormonal deficiencies
Episodic cognitive and emotional setbacks
Periodic night terrors, nightmares, waking terrors
Weakness and deconditioning
Air hunger and chest compression symptoms
Severely disrupted sleep/wake cycle
Food sensitivities despite a restricted diet
Inability to consistently perform activities of daily living or work
Intolerance to treatment
So in other words, my life is kinda hellish a lot of the time! Today was no exception. Then right in the middle of the trauma there were tender encounters with the sweetest man on the face of the earth: my Stevers. We talked in between seizure attack episodes, he provided care when I could not move, and we made the most of a low-key day. It was the “same story, different day” around here. And something else happened too: I may have discovered another piece of this wretched illness mystery: Latent Lyme Disease can affect the gut which in turn can contribute to neurological complications much like the ones that have eluded all of our attempts at recovery.
No, it’s not systemic Candida as I suspected when I wrote my last Treatment Update. It’s called “Bell’s Palsy of the Gut,” a term coined by Lyme Literate Medical Doctor (LLMD) Virginia T. Sherr. “Gastrointestinal Lyme disease may cause gut paralysis and a wide range of diverse GI symptoms with the underlying etiology likewise missed by physicians,” states Dr. Sherr in the April 2006 issue of Practical Gastroenterology (p. 74). There are tests that can be performed to determine the presence of Borrelia burgdorferi along with other microbial pathogens transferred in tick saliva after a bite. In two weeks I will have a diagnostic procedure in which these tests could also be performed. Whoa Lord. Is that why I felt led to add an anti-microbial to my anemic treatment plan?
God is good. All the time. God is good. Today I felt led to add back a probiotic that I actually was able to tolerate this time. The new information about Lyme disease may explain the increasing gut inflammation this past year and my supremely negative response to a trial of a far-infrared light treatment to my abdomen. Or to any abdominal exam. Or to physical therapy to the hip flexors in the lower part of the abdominal wall. Or to certain foods. At any rate, a new door has opened and there are new possibilities for getting well. Perhaps it is time to re-visit the diagnosis of Lyme disease.
Stay tuned. This exquisitely wild roller coaster ride of recovery from serious illness is about to reach a new station. In the meantime, please pass a spoon and 1/2 of a carton of Siggis plain, grass-fed, organic and Icelandic yogurt. We’re going to get this thing right or keep screaming all the way to the bottom of the next hill until we do! (I told you that I worked in an amusement park one summer didn’t I? Yeah, Cedar Point is really cool!)