I want to give you a quick (and exciting!) update regarding my treatment.
As of Wednesday, I was cleared to have my port placed and start IV antibiotics when we are in DC in a few weeks, woohoo!
There is a lot of stuff we have to take care of between now and then:
Reorganizing the bedroom and deciding on what kind of storage solution we are going to need for my IV supplies, feeding tube supplies, and all other medical accoutrements.
The plan (so far) is to drive up to DC on 2/13, have my port placed on 2/14, and have my first IV appointment, as well as my scheduled appointment with Dr J, on 2/15.
The appointment will take around 4-5 hours, since we’ll be doing a trial of the first antibiotic as well as learning all about port care, maintenance, dressing changes, flushes, hooking up to the IVs, etc. I’ve become kind of a health/medical nerd throughout this journey, so I’m actually excited to learn all about it!
I know the road ahead isn’t easy. I know the past several months I’ve been pushing myself more than usual, but that’s BECAUSE I know the herxes that are to come. Even still, I am determined to stop at nothing to regain my health, so I will soldier through, come what may.
More updates as more developments unfold!
I've started to write this blog post more than once, so maybe the browser knows I'm being too long winded and will continue to crash until I write succinctly enough. Hey browser, not my problem I like words and details.
I posted a video update about my appointment at the Jemsek Clinic on January 10th, but I wanted to try to create a somewhat condensed, but informative, written out update, for any of you who may prefer reading to video, and also as sort of a treatment journal for me, as we get ready to start this serious next step in treatment.
I apologize if at times it seems disjointed, but I'm going to try to use lists and bullet points, etc., to make it easier to follow.
What we are addressing
Even though I had a rough summer/early fall in this department (you can view that whole saga by going to this playlist on my youtube channel), now that my GJ tube is placed and is giving me adequate nutrition daily, Dr. J is pleased with this. I'm still progressing, and all of this is amazing, given how difficult it was for a while there, so we are all glad to know we also have the doc's stamp of approval in this department!
Sleep has improved somewhat over the past several months, but not significantly enough..yet. Some nights are obviously better than others, but I think we all realize we're running out of medication options to help aid me in this process (the list of medications we have tried and have had to mark as "not optional" or "adverse reaction" or "no effects at all" for me is comically long, I'm sure many of you can relate.). Dr. J did add something to help with sleep (see med discussion below), but I'm already discontinuing it due to vivid nightmares.
However, sleep still is improving, it's just a slow process. At this point, Dr. J doesn't think sleep issues alone are enough to deter the start of treatment any longer. (woot!)
We had a conversation in the office that I've been having with myself for months. The consensus: At this point, my body has responded adversely, or not at all, to every available, appropriate medication we've tried for neuropathic pain (a large degree of my pain), along with medications in other classes to help with this or other types of pain. We've had minimal to no success. We know my pain can only get to a certain point of relief before we have to say, "okay, that's the best we can do for now, we can't risk these infections breeding any longer while we wait to try to control pain that won't be controlled...yet, at least."
This wasn't easy to hear, but like I said, I had known it myself for months, so it also wasn't surprising.
MAST CELL ACTIVATION DISORDER / HISTAMINE INTOLERANCE
We know this is a very big issue for me, and we have been treating it the past several months, as well, trying various methods (a few successful, many more not so), and it remains a major issue of concern, which is the reason for some of the new medication tweaks changes, listed below. My body is essentially turning on the inflammatory cytokines for nearly every foreign substance, causing a constant state of inflammation and production of histamine in my body, a body who can't detox out the related toxins at a proper rate.
Medication and Supplement tweaks and additions, and reasons
- To assist with mast cell activation disorder; a mast cell stabilizer, thereby affecting histamine and overall inflammation, along with other beneficial effects to the immune system.
- Currently in limbo on whether or not it will be possible to get, because insurance does not cover it and it's not inexpensive, but we are exploring a few options.
An older tricyclic antidepressant which can also have beneficial properties for sleep and even has anti-histamine properties. We were trying this along with other therapies I'm already trying, hoping it would help in the sleep, and ideally histamine issue, areas, but after two nights of taking it, I had to stop. One of the side effects is, assuredly, "nightmares," and mine were so vivid and terrifying it's not worth the potential risk, given my sleep was also less in quality and quantity than without.
Now, we had given this a try early summer of 2017, for unrelenting nausea, lack of appetite, pain, and sleep. We were hoping it would be, as it is for so many, a "wonder drug" for some, if not all, of those issues. Of course, even though I try not to get my hopes up, I always find them floating above me. We are giving this a trial run again, but after a few days taking it at my recommended dosage and schedule, I've not noticed any help (no harm, either, but no help, nevertheless) in any of the above areas, or elsewhere. Since this is ridiculously expensive (please don't get me started on health insurance, we could talk all day and it wouldn't be pleasant for anyone involved...and I really don't fancy getting frustrated right now. ;-) ), even with the small percentage insurance covers, which is only for a fraction of the amount of medication my doctor wrote on the prescription, this may again be off the table as an option. Juriy's out.
While mostly used for its anti-anxiety properties, lorazepam also has an anti-histamine type effect on certain receptors other traditional antihistamines don't hit. Since I have become tolerant to the drowsy side effects of many medications throughout my life, including lorazepam, since I took it for a few years in my past, we added the option of low dose lorazepam during the day, to help work on those histamine receptors without knocking me out.
Discussed for neurological function, sleep. OTC Spray. Have not been able to order or try this yet. Will update if I do.
Other Issues Discussed
Digital Motion X-ray (DMX)
Craniocervical instability is definitely an issue for me, as far as Dr J is concerned. It's common with EDS (Ehlers-Danlos Syndrome), and also can be triggered by any number of underlying autoimmune or infectious causes. To get a diagnosis on paper via scan, I need to have what's called a Digital Motion X-ray done, which actually will show the motion of my neck in the scan as I move it, taking a series/a video of the image, so we can see to what degree my hypermobility needs to be corrected
This is usually treated with a temporary neck brace, which often does, and should, reduce the level of my daily headaches, which is something I'd welcome, gladly. We're trying to decide if we want to drive a couple hours away and have it done in KY, or just have it done with the practice they recommend 30 minutes away from their DC office. More to come on this, as well.
He conducted a thorough, but not too thorough physical exam (since he had records from my very first appointment until now, he had a good idea of what needed extra attention and what needed to be physically examined at this point in time).
We did learn that both my spleen and my liver are enlarged, so I'm really focusing on ramping up the detox. Magnesium flake foot baths with lemon juice and/or ACV and/or essential oils and/or any combination thereof, lemon water, burbur/pinella combination tincture, dry brushing, coffee enemas, and more.
Dr J mentioned something at the appointment that wasn't news to me (I've heard him say it on a video I've seen from a conference, more than once), but that was apparently news to Rog, mom, and dad, which was the fact babesia is often the reason people fail to thrive and heal, despite other adequate lyme treatment. So we will be hitting it from the get go, as well.
At one point near the end of the appointment, Rog asked Dr. J, who has treated thousands of Lyme patients, where he thought I fell on the scale of severity as far as patients he (Dr J) has treated. It was almost comical, because Dr J first gave a kind chuckle (not demeaning or anything, we were all kinds of amused thinking about it), then answered, "Yeah, I'd say definitely in the top 10% of worst cases I've treated."
I never thought hearing a doctor say that would give me hope, but that's exactly what it did! It gave me hope, because if I'm in the top 10%, he knows there IS a top 10%, and he has SUCCESSFULLY TREATED THAT TOP 10% and gotten them back to HEALTH! Double woot!
Potentially Exciting News!
And for the grand finale, drumroll please........
As I continue with the supplements and medications I was taking before this appointment, and experiment with the new additions to see what works and what doesn't, we were told to call for a quick 15-minute consult in A COUPLE OF WEEKS so we could assess how things were going, and, given what we believe to be the trajectory going forward...
I COULD BE GETTING MY PORT PLACED AND STARTING IVS IN A MONTH!
Obviously that's SUPER exciting to us, but also means we have a LOT to do to get ready, both around the house and mentally, physically. And, of course, we're waiting of God's timing, but it's looking like His timing may just be right around the corner...we shall see!
I don't currently have my wits about me enough to write out a blog post detailing everything from my appointment at the Jemsek Specialty Clinic earlier this week, but Rog and I DID post a vlog on my channel about it, and I decided that, for now, I'm going to post that here, and hopefully be able to type more out in the future.
Thanks for the continued support as we travel this road. We're getting closer, but there's still a long way to go. We know God's gonna deliver, though!
All week (so 2 days, since it’s only Monday...even though it also was the case over the weekend), I’ve had a feeling I can only describe as nervous anticipation.
My fatigue being at a high right now, and as unpredictable as ever, I’ve had a lot of time to lie here and think. And stress. And worry. And obsess over every possible outcome we could have at my appointment with Dr. Jemsek on Wednesday.
Will we make our trip safely tomorrow? What if the roads are icy? What if we can’t find parking? What if the hotel smells like air freshener or cleaner? What if I’m told I’m still a long ways off from being able to start treatment? What if we get the go ahead to start the treatment process? We’re not prepared for that yet as far as storage, etc, goes. Will I feel uplifted? Will I feel let down? Why do I have expectations at all?
And the last question makes all the ones before it null and void. Because it’s an all-encompassing question I have no right to ask. I know God has already worked the day out for my good, and knows exactly what will happen, and why. And I have to be okay without knowing ahead of time...something I’m learning more as life goes on.
Also, “me anxious about nothing” is a command straight from the Bible, so I know my rumination on the above questions, and more, is a product of my human nature, and as I type this sentence, I am feeling a metaphorical weight lift off my soul, because I am giving every single worry or care I have to Him. Right now.
Cast all your cares upon Him, for He cares for you.
1 Peter 5:7
He will carry us through our trip to DC tomorrow (with a short pit stop in WV to meet our nephew who was born just a few days ago!), through the appointment on Wednesday, and back home again, all according to His good and perfect will.
As much of a perfectionist as I am, I’m also well aware that my perfectionism can never yield true perfection, so I choose to be joyful and cling to HIS perfection as His will is made known, in HIS time.
That said, we could use some prayers as we travel tomorrow, and for my appointment with Dr. Jemsek on Wednesday. This will be my second in-person appointment, but the first since June (the rest have been via phone), so I’m really praying God just gives us peace and direction.
I’ll update on the appointment as soon as I can, once we see where we are and make some decisions.