One could say that the days before a cross-country trip are usually filled with a multitude of tasks and anticipation of the good times to come. I’ll give a “yes” to both accounts and now we are back from coastal Alabama with pictures to share.
Paddling the Stellar S16S felt good in Perdido Bay off Alabama/Florida watersSteve and I congratulated Elizabeth and her husband Daniel as she earned her wings to become an Army Blackhawk helicopter pilot
Our happy travelling companion ElleElizabeth piloted a helicopter ride for each of us after graduation. Awesome!
I did a lot better travelling this past week than our last trip in November of 2015, that is for sure. I was able to attend all but one planned activity by pacing myself, meticulous planning, and some improvement in my overall health. The convulsive episodes that still accompany the serious illness I am battling kept themselves largely to the overnight hours and travelling in my truck. And they were much less! Yeah God! It’s amazing how much life can fit in between the setbacks these days . . .
Now that 11 loads of laundry are done, the travel trailer and vehicles are cleaned, and even some garden chores completed I am ready. A nasty new treatment begins later this week. Resuming the infusions of IV antibiotics, a few scheduled appointments, grocery shopping, and making sure our support systems are in place come first before the darkness falls. It really could be that bad. Or maybe not?
They say that breaking up stealth biofilm and killing protomyxzoa rheumatica (formerly known as FL1953) can render a person useless. Or bedridden. Or really, really sick. Then after around 4 weeks, there can be miraculous improvement. My trial run 2 weeks ago of 1 capsule of the anti-fungal brought dizziness, light-headedness, and cognitive slowing. My Lyme Literate Medical Doctor was thrilled when I told him. (He is kind of kooky that way!) “It’s affecting your brain! That is good!” he exclaimed in a way that only a master diagnostician can. Oh boy. “I wonder what the full dosing will be like?” was all I could think about. And how will I eat? Get to the bathroom? Keep up with all of the treatments while home alone when Steve is at work? So many questions remain unanswered at this point.
This is what I know for sure. In a way, the break in treatment for a week of vacation came too soon. I was not ready to go without the IV antibiotics and daily routine that has facilitated this turnaround without some extra struggle. There was a lot of stress amidst the good times. In another way, the break fed my soul! I got to see what living was like for everyone else while being with everyone else. I got to kayak with my beloved River Bear . . . . TWICE! I did more than one thing each day and did alright trying to do so. When we got back home I got to work in our garden two days in a row. Wow, Lord. Then I read an adventure novel in 2 days! How lovely it was to immerse myself in a bit of life again.
So for the unknown treatment coming in a few days I will say this: bring it. I have faced worse than lumbrokinase and prescription Lamisil. I will go slow if I can and employ every herxheimer (aka die off) remedy I have in my arsenal if needed. The Lord has brought me through near-death experiences, daily hell on earth, despair beyond belief. I have been given a taste of life again to encourage me and those around me as well. It is time to dig a little deeper, literally. We have found The Beast in the recesses of my brain tissue. This is war. Lord willing, I am going to get well.
If we don’t chat for awhile, please pray for me and Steve, k? Thanks a bunch Gentle Reader. I am grateful for you. With love, JJ
Lord willing, later this week I will transition from IV infusions of antibiotics from an outpatient clinic to home health care. Our insurance company denied treatment beyond 28 days, leaving us with a massive bill if my secondary insurance will not cover ongoing treatment. Since it will take several weeks to find out the verdict, we cannot keep paying $900 per treatment, 3 times per week while we wait! Hiring nurses (from a home health care agency and one in private practice) on a private pay basis plus ordering supplies and medications online will reduce the price to around $300 per visit. Planning this transition has required considerable time, stress, attention to endless details, and work! The orders are in process with many steps to follow in the next 2 1/2 days. A LOT HAS HAPPENED IN THE PAST 5 DAYS to make this happen. Thank you, Lord, that my brain has come back online just in time. Whew!
I just found out that DNA testing from Fry Labs shows that I do have the FL 1953 protomyxzoa rheumatica (a fungal infection) that can be found in 50% of patients with chronic illness. This parasite survives in the body in the impervious gel-like biofilms that also make Lyme bacteria difficult to eradicate. My LLMD has recommended a combination antifungal (prescription) and biofilm-busting (nutraceutical) protocol that he says could render me very sick for a minimum of 4-5 weeks. Most patients have tremendous recovery thereafter; gratefully I am hoping that the binding agents I have discovered will be an effective adjunct to this treatment plan and reduce the die-off or “herx” reactions. Steve and I are prayerfully considering how to proceed as we were hoping to visit family for an important event out-of-State in a few weeks now that I am “not as bad.” Please pray too! I am soooooo ready to start living again!
Working with a brilliant naturopathic physician via Skype to review my epigenetic data, lab tests to date and medical/treatment history has finally led to some nutraceuticals that I can actually tolerate. Soon I hope to add specifically formulated IV and injectable nutritionals to the home infusions (instead of driving to a clinic we were considering far from home twice per month). And the excitability of my central nervous system is starting to come down at last: generally fewer and shorter convulsive episodes every day for the past 2 weeks. This has not happened in the past 4 1/2 years until now! PRAISE THE LORD! Experimentation with an Iodine Loading Protocol has further enhanced my results. I have to think that I am on the road to recovery at last . . .
Steve and I are encouraged, humbled, grateful, and watchful as the events of these past few weeks have unfolded. I have been able to get out for a walk once per week and work in the gardens around our home some. Some of the pain and headaches that I battle every day have improved; I don’t really complain when it’s related to digging in the dirt as the sun is going down . . . I feel blessed to have had the friendship and support of a couple of friends here for rides to-and-from the hospital for treatments lately too. And we are starting to plan some of the activities again that we used to take for granted in the past: think Steve’s kayak races, the Tin Can Ranch (travel trailer), and the pup in tow as well.
Enjoy this lovely song that reflects the hope that is becoming clearer for me. I hope that if you are struggling, you will lean on the Lord, Jesus Christ to see you through and keep your eyes on the goal what ever that may be for you. He knows and loves you, cares for the desires of your heart too, Gentle Reader. There are sprinkles of His goodness all around us no matter what the circumstances. Let not the first time we recognize this as only when the healing comes. Let today, this moment be a reminder that the waiting, the “pressing on” as Lisa sings, is an important part of the journey too. Praying for you this night. JJ
An O.T. assisting a client in a tub transfer using bathroom safety equipment.
When I was working in my career as an Occupational Therapist, I coined the following phrase to describe my role to my patients and their families:
An Occupational Therapist takes a look at how a person occupies his or her time and the skills needed to get through the day.
This definition worked well, given the diversity of populations, conditions, and treatment interventions utilized in O.T. Having a simple, quick definition helped me better communicate my 30+ years of licensed and skilled interventions from a variety of treatment settings that might be called upon at any stage over a course of therapy. Together we then crafted a course of action to get the person back into his or her life as best as possible. Funny how the person that may have benefitted the most from all of this is the one writing to you this evening . . .
Recovery from a serious illness has been a case of the phrase “therapist heal thyself” coupled with the expertise of a few other licensed professionals. My part was to study, research, document, evaluate, revise, manage, and just hang in there by my fingernails to get through these past 4 years. However I will credit the Lord, Jesus Christ for providing the courage and hope that my husband, Steve, and I needed to actually start seeing some progress. And guess what, it is starting to happen! The Lord has allowed recovery to begin!
Six weeks ago I began an ongoing, intensive course of IV antibiotics for the treatment of chronic Lyme disease. In the interim I experimented with liposomal melatonin, 5-HTP (a precursor to serotonin), and now CBD oil (from industrial hemp). I believe it is that latter that have helped to move my sleep/wake cycle from that of a brown bat to a gal that is just slightly a night owl. I am starting to dream again and have a little more energy, clarity of thought. Also the years spent chasing down mercury toxicity, mold illness, dental issues, and secondary infections have prepared me to tolerate this level of intensive treatment. Are you ready for the biggest change of all?
The two to five hours per day of violent convulsive episodes is diminishing in intensity and duration! This has been consistent for about two weeks now. PRAISE THE LORD!!!!!!!!!!
We are thrilled for some positive change in my condition! We are now hopeful that the powerful doses of antibiotics will help kill the Lyme bacteria and co-infections likely causing the seizure attacks and other noxious symptoms. Whoa. So how do I fill my days? I am continuing my full time job of daily detoxing, preparing a specifically crafted diet, maintaining a detailed treatment log, medical appointments averaging daily, supportive relationships, study-and-research, medical treatments (some complications came with the IV treatments), connecting online to forums critical to these efforts, the “stuff of life,” and taking a walk at least once per week. Maybe this week it will be twice? Yeah God, the pup will love that one!
Like in the past, right now I am just doing my job. I am grateful that the Lord saw fit to lead me into the profession of occupational therapy as it provided me the skills needed to manage the mechanics of this illness. Along the way my beloved Steve has been the greatest friend, confidant, witness, and spiritual leader that I could have ever asked for to walk this road with me. He has labored tirelessly night and day for me, for us. Thank you Jesus for Steve. There are many unknowns and many more months of treatment yet to follow for sure. No problemmo. With my Lord and Savior at the helm, I will be fine. Lord willing, I am going to get well!
Just thought you might like some good news from the “Hope Beyond” blog, eh? Take care Gentle Reader. And thank you for your support. You rock! JJ
Garfield tells it like it is and that is the way I like life to be as well . . . No pretense here, ever! He must be chemically sensitive too? I digress . . .
To get well from a serious illness, one consistently pursues recovery as if he or she is on a journey, not sprinting as if in a race. My journey of late has included a trial of molecular hydrogen, nebulizing sea water to ease a chronic sinus infection, and experimenting with a Glutamate-Aspartate Restricted Diet (GARD). Yeah it’s never just one thingy with me!
Some additional research and a consultation with my Doc suggested a link between the GARD, sinusitis, and latent Lyme disease that might be addressed with a course of antibiotic treatment. Yes, IV or IM Rocephin may address all three. Rat studies have shown that Rocephin can lower glutamate levels thus helping to raise seizure threshold. Since I am a card-carrying lab rat anyways it seemed logical to go for a trial of antibiotics for a week then re-evaluate my tolerance for it during my next Doc appointment in 7 days. Very likely the treatment will continue for several weeks. Today was treatment day #1.
I began this process pressing forth to complete a lab test beforehand so as not to skew the results with the upcoming antibiotic. The preparation required a restricted diet of only 2 foods for 24 hours, fasting, and some stressful sampling procedures all ending just one hour before the first IV treatment at the hospital. The Lord sustained me as I assembled the kit and wolfed down a supremo salad that I had prepared the night before. I left our home shortly after the FedEx truck picked up the completed test kit while giving our dog something to bark, bark, bark about. The wings of my Savior, Jesus Christ carried me to the hospital on just 3 1/2 hours of sleep: less nervous and ready to blast the heck out of whatever might be keeping me sick. Let’s do this!
Not so fast though! Just before heading into the Outpatient Clinic I had a violent expulsion of stool! Whaaaaat? Good golly! Looks like the Lactulose test prep was taking effect all at once! Now what should I do? I was soiled through all of the layers of clothing I had worn to keep warm. Fortunately this all happened in a hospital where they have linens and hospital scrubs available. Alright so I cleaned up, put on the call light, confided my plight to one of the nurses, changed my fashion motif a bit, and returned to my chaise lounger a little wet, a little shook up from everything. let’s do this?
The biggest hurdle for me in receiving the 50+ IV treatments and 50+ lab draws I’ve had these past 4 years has always been the needle stick procedure. Virtually every time a needle either goes in or out it triggers massive convulsive episodes. Fortunately Jennifer, the RN, has more tricks for poking rolling, spindly veins than anyone I have ever seen for care. The first stick failed resulting in the usual shakes and shouts. So we just waited until my world calmed down and I got a few more moments of the best distraction ever under my belt: HGTV on the little swing-away monitor at my station! Watching Island Hunters and the like has saved me from tears many times for sure. (Such a treat! We don’t have cable service at home.)
Gratefully the second stick was successful. Gratefully there were no ill effects during the infusion just fatigue. Gratefully I was able to run an errand to the meat market secretly in wet jeans underneath my scrubs before returning home. Gratefully the nap came easily after showering and without seizure attacks. The hell returned later in the evening but overall I got away with at least one fewer episode today. God is good. He carries me through so much!
I ask the Lord often why things always have to be so difficult for me? I really don’t get any answers other than to know that He sees my suffering and promises to love me through it all. That love is tangible in the graciousness of my beloved husband, Steve, who listens to my stories and sees me through the roughness that characterizes some part of every day. Perhaps someday I will get to see why the “price of admission” for me to get through my life has been so devastatingly high. This stuff ain’t for wimps ya know! In the meantime I will carefully wrap the IV in my arm before showering, clean myself up, run more loads of laundry, and shed some tears along the way. I am not alone and know what to do. I have been through IV treatments before and so have many of my fellow sojourners. We can do this!
At least now there is fresh bacon in the house. And that Gentle Reader is a mighty good thingy! I am sure Garfield would agree! JJ
Molecular hydrogen (H2) has been accepted to be an inert and nonfunctional molecule in our body. We have turned this concept by demonstrating that H2 reacts with strong oxidants such as hydroxyl radical in cells, and proposed its potential for preventive and therapeutic applications. H2 has a number of advantages exhibiting extensive effects: H2 rapidly diffuses into tissues and cells, and it is mild enough neither to disturb metabolic redox reactions nor to affect signaling reactive oxygen species; therefore, there should be no or little adverse effects of H2. There are several methods to ingest or consume H2; inhaling H2 gas, drinking H2-dissolved water (H2-water), injecting H2-dissolved saline (H2-saline), taking an H2 bath, or dropping H2-saline into the eyes. The numerous publications on its biological and medical benefits revealed that H2 reduces oxidative stress not only by direct reactions with strong oxidants, but also indirectly by regulating various gene expressions. Moreover, by regulating the gene expressions, H2 functions as an anti-inflammatory and anti-apoptotic, and stimulates energy metabolism. In addition to growing evidence obtained by model animal experiments, extensive clinical examinations were performed or are under investigation. Since most drugs specifically act to their targets, H2 seems to differ from conventional pharmaceutical drugs. Owing to its great efficacy and lack of adverse effects, H2 has promising potential for clinical use against many diseases.
I was recently introduced to molecular hydrogen in a webinar endorsed by Quicksilver Scientific (QS). QS sells a product that makes tiny amounts of hydrogen gas when you drop a tablet in a bottle of water. I posed a question to Dr. Chris Kessler, the speaker that night and before long I was off in a new direction investigating this “new” yet well-researched element. Along the way I found these statements which made the topic very personal to me. While I do not claim to understand these mechanisms very well, when I see similar words and phrases repeating themselves in documentation written by those who do understand them I take note.
In Wikipedia I found a discussion of four major hypotheses to explain the profound fatigue after an epileptic seizure. Remember that I do not have epilepsy, per se, yet this literature often explains the symptoms that I experience. [This may answer the questions a family member of mine (retired anesthesiology nurse) recently had when I described being bedridden 12-18 hours per day due to 2-10 hours per day of convulsive episodes. Yes, indeed!] One mechanism that pointed the potential benefit of hydrogen gas in raising seizure thresholds stated the following:
While not an example of active inhibition, acidosis of the blood could aid in ending the seizure and also depress neuron firing following its conclusion. As muscles contract during tonic-clonic seizures they outpace oxygen supplies and go into anaerobic metabolism. With continued contractions under anaerobic conditions, the cells undergo lactic acidosis, or the production of lactic acid as a metabolic byproduct. This acidifies the blood (higher H+ concentration, lower pH), which has many impacts on the brain. For one, “hydrogen ions compete with other ions at the ion channel associated with N-methyl-d-aspartate (NMDA). This competition may partially attenuate NMDA receptor and channel mediated hyperexcitability after seizures.”[2] It is unlikely that these effects would be long-lasting, but by decreasing the effectiveness of NMDA-type glutamate receptors, high H+ concentrations could increase the threshold needed to excite the cell, inhibiting the seizure and potentially slowing neuronal signaling after the event.
That last sentence was the most intriguing part: suggesting that high concentrations of hydrogen gas could be a mechanism preventing further seizures after an episode. This not only could explain the fatigue but to me raise the possibility of hydrogen ions preventing a reoccurrence altogether?
Now singling out the concept of oxidative stress, it was easy to find research that supports the idea of oxidative stress being a factor in many types of seizure activity. Here is one summary (abstract) of an extensive review article:
Combined, this review highlights pharmacological mechanisms associated with oxidative stress in epileptic seizures and the potential for neuroprotection in epilepsy that targets oxidative stress and is supported by effective antioxidant treatment.
A person can find research to support just about any hypothesis these days. I tend to look for findings published by public/non-profit and not private organizations/companies; review articles that summarize many related studies; topics with lots of published studies in peer-reviewed journals; and of course consistency of themes, mechanisms and findings. Individual studies are best when conducted with larger sample sizes, and whose conclusions state both positive and negative implications of the results. The smaller studies and case histories have some benefits as well when you can see the exact protocols used and I can relate to the characteristics of the subjects. You know, test dummies like “lab rats” and zebra fish . . . NOT! :J
There was one negative implication for me that I found should some upcoming testing implicate the presence of a Small Intestinal Bacterial Overgrowth (SIBO). I am battling right lower abdominal pain that has yet to be diagnosed. Gratefully the pain is decreasing with tolerance of addition of an enteric-coated probiotic and bacteriophage version of another pre/probiotic. Good golly this gets complicated! If the release of hydrogen gas (which is found with methane gas in the diagnosis of SIBO) is a bad thing as some suggest then I will need to revisit this whole idea of molecular hydrogen as a treatment intervention. Oh dear, aren’t we talking about a different kind of bad gas here? Not sure yet. Eeeeek!
Additive for creating molecular hydrogen in water
If my results with this new direction are positive, you’re gonna read about it Gentle Reader! Gratefully a well-known researcher has agreed to assist me as a test-case, beginning with a product that generates molecular hydrogen (MH) via an additive in a bottle of water. I understand that this additive relates to “alkalinity” more than the making of alkaline water, per se. This process is also different from ingestion of hydrogen peroxide which, while touted as beneficial in the epilepsy communities, can be dangerous! If MH balances anti-oxidants and pro-oxidants, modulates gene expression, has the potential to raise the seizure threshold, and has a beneficial impact on ph then those seem like good things to me.
Lord willing, I am going to get well! I will write more later on this subject as I dig a little deeper. And be sure to follow this blog for updates. JJ
Jesus is for the Wounded 
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