That February switch proved to be interesting for me. I had a good herx reaction for a couple of weeks, with pretty amazing head, neck, and jaw pain, muscle cramps, internal tremors, heart palpitations, migrating pains, etc. One of the most frightening things was only a couple of days before my most recent appointment, mid-March. The left side of my face hurt. I had a general headache on that side only, all of the teeth on the left side of my head hurt, the skin on the left side of my face hurt to touch... I could tell it was nerve related, and I've had that sensation before on other parts of my body, but never on my face. The fact that it was half of my face freaked me out. My doctor said this indeed sounded like a precursor to Bell's Palsy (paralysis or weakness in one side of the face, caused by damage to a nerve). No thank you. Thankfully it didn't get any worse and went away over 3-4 days, and he advised me to go straight to urgent care or an emergency room if Bell's Palsy ever starts showing up.
Protocol:
During my mid-March appointment he decided to keep me on the same two antibiotics, but we're adding a third with the goal of digging deeper and busting open cysts that the bacteria have likely formed. I'm slightly confused, because between my old doctor and my new doctor we have two different opinions... My old doctor told me that the combination of antibiotics that I was on previously were targeting the spirochete forms, the cyst forms, etc. My new doctor respectfully disagrees and believes that according to his knowledge, the antibiotics I was on previously would not have targeted the cyst form of the bacteria, and that this is likely why I started to relapse when we stopped treating-- the little buggers come crawling out of the woodwork as soon as they stop sensing invasion. To further clarify what this means...
Understanding bacterial forms:
Lyme and coinfection bacteria are extremely stealthy and are capable of transforming into three distinct forms. Let me repeat that... These bacteria morph. They change forms when they sense a threat (whether that's invasion by your immune system, or a form of treatment) in order to survive and proliferate. They transform into spirochete, cell-wall deficient, and cyst forms. Each form has different characteristics, symptoms, and vulnerabilities; hence, each form must be treated differently.
Most antibiotics target the spirochete form, which I think of as the free-floaters. They're shaped like cork-screws and can drill into every tissue, bone, and organ in the body. Over time they can form and hide in cysts (tiny, microscopic, internal cysts), which are very difficult to penetrate with treatment.
An awesome cyst-buster is Grapefruit seed extract. I've started with that until I start the cyst-busting antibiotic in a few weeks. I'm not sure if this will be a new experience or not since I'm not sure if we were busting cysts with my old doctor or not. If this is a new experience, God help me. I can't imagine the die-off reaction could be any worse than anything I've already experienced, but busting open cysts full of bacteria sounds like a recipe for lots of herx reactions either way, so please wish me luck. So far so good with the Grapefruit seed extract.
Protocol Continued:
After reviewing my old labs and realizing that my viral load is also off the charts, he decided to start targeting that as well. I started a supplement that he wants me to take for a minimum of three years to bring down the viral load (Epstein-Barr, i.e. Mono, for example). He said next time we'll add Mycoplasma treatment.
We added anti-inflammatory supplements (turmeric, mostly) since Lyme and co's cause so much inflammation and that's where a lot of the symptoms come from. I have seriously been amazed that I'm not having a severe herx from both adding the Grapefruit seed extract and the Lauricidin (antiviral), both of which he said I could herx from. I'm wondering if that can be attributed to the anti-inflammatories.
I'm now taking over 65 pills a day, and have an alarm on the hour, every hour from 8:30am-9:30pm to remind me to take my next doses. It's kind of crazy and kind of drives me nuts, but if it's doing the job then it's not so bad.
The other day I read a blog post that really struck a chord in me. I found it very relevant and felt that I could relate to it very well. I thought I'd share those paragraphs here:
"The Mighty, by Alexandra Kaye:
The one thing I have the hardest time dealing with in my life is the lack of understanding.
That’s pretty broad, so let me break it down.
...Few of these people actually understand. I believe they can never grasp the fullness of it until they experience it firsthand.
Here’s what I feel they (doctors, family, friends, strangers) can’t understand about my chronic illness:
Fatigue
It’s not just, “Oh yeah, I didn’t sleep last night, either.” It’s more like, “I have slept 14 hours a day for the last six months, but I feel like I haven’t slept for three years.” Simply living is exhausting. Literally, standing up is tiring for my body (thanks to postural orthostatic tachycardia syndrome [POTS]), and when I’m in any position that’s not laying down in bed — heck, sometimes even in bed when I am “relaxed” — I’m always consciously holding all of my joints in place. It’s tiring. Things that may come naturally to others are things I have to exert energy for, on top of everything else that takes energy, and it causes fatigue, which is not the same as being tired. Also, just being in pain causes fatigue. There’s painsomnia (a term coined for those of us who can’t sleep because we’re in too much pain), which makes us groggy all day. And brain fog.
I can’t recall anything that happened more than a few seconds ago. My brain is so cloudy I can’t sift through it, so please don’t get mad that I forgot half the things at the store or forgot to do the laundry.
Chronic pain
There’s so much to this that isn’t understood. People think I fake it because they don’t understand that when one lives with it for so long, you learn to do things despite it. I learn to go to work with a migraine, ignore the stabbing pains I randomly get, or to occasionally eat that one food I know I shouldn’t because it’s going to give me hell later but it tastes so good. In those situations, I’ve consciously weighed cost and benefit, and decided it’s worth the cost. People will ask why I can do the things I enjoy but not other things they want me to do, and it’s simple: I know what’s going to hurt, and I’m OK hurting myself to do things I love, but if I do everything people ask me to do and it hurts, I will have nothing left for myself. Some days I will do those things, but some days I have to be selfish and do things for myself — we all do; we all have to take care of ourselves, and that’s how I do it. And yet, there are some things I am not going to do despite the pain. Some things will make my situation worse, and I’m not going to do something I know is only going to make myself more sick, which leads me to my next point.
The Spoon Theory
Personally, I don’t like this metaphor for somebody who has a chronic illness — it’s a little too abstract. I prefer a battery metaphor: My whole body is constantly running on back-up power, on a generator if you will, because my entire life is just tiring. Literally existing is exhausting. When I want to do anything (go to school, work, the doctor, exercise, walk my dogs, socialize, cook, clean, anything) it takes up more power than just the baseline slow drain we all get throughout the day (like when you unplug your laptop and leave it on but you’re not using it, it slowly is draining one percent an hour or so). So you pick and choose, because you can’t always do it all. Some days I will not have any juice left in my battery so I do nothing. Others I will have 50 percent left and choose to spend it socializing or doing something I want instead of what people expect me to do. And some days I think I’m running at 35 percent or 100 percent, and suddenly I crash. I get the black screen and there’s no fixing it, only plugging it in and letting it recharge (sleeping).
Your “Advice”
I do not need your advice on how to live my life. I’m an expert in it in a way that you are not. When you offer advice or say “Try this” or “There’s got to be something else you can do,” I really just find it irritating. I know it’s coming from a good place, but do you really think I haven’t tried everything I possibly can? Do you really think I like living my life like this? No. I want my life back. And I’ve done everything I know and my doctors know to do. After we get our diagnosis, and sometimes even before, we are constantly researching what we can do to feel better.
How to Help
Don’t be upset that I don’t want to hang out, and don’t stop asking. Offer to help me grocery shop, offer to go with me to the park with my dogs, offer to let me text you on a bad day when I’m bored. Do not offer advice unless I specifically ask for it, or try to fix me and my situation.
Exercise
Exercise seems to be the cure everybody wants everybody else to try. Diet and exercise. Lose weight. I am meticulous about what I eat, although I have a sweet tooth and POTS so that makes it hard to stay away from junk food, but I track what I eat and really try to make sure I’m not being completely unhealthy. My diet is limited for reasons you may not understand — I can’t (well, I shouldn’t) eat meat, food dye, artificial sweeteners, hydrogenated oils, high fructose corn syrup, caffeine, high fat, high sugar, white carbs — the list is endless. And you’d be surprised at just how many of the foods you’d think I can eat have those things. So I follow most of those rules, but sometimes I can’t (if don’t want to be rude or I’m out and about) or just want to splurge, but I also can’t exercise. I’ve tried everything, even physical therapy for months, and nothing helps. It all causes pain that doesn’t go away, and I never actually get stronger. I could start working out more, but if I did I’d have to give up most everything else because I’d be too exhausted to do anything else.
Complaining
Most of what is bothering me isn’t even vocalized, so imagine that the things I’m actually saying are the really bad things. And honestly, a good bit of the time people think that we’re complaining when really it’s not a complaint, it’s just a statement. “My head hurts” is a complaint to most, but when I’m saying that, it’s really just what’s on my mind and I’m not looking for sympathy, just absentmindedly talking about what’s on my mind. Or I’m saying it as a reason for something. This is not a complaint, it is a reason why I don’t want to go out.
Medications
I am not going to stop my medications. Without them, I would probably be dead, and I’m not exaggerating when I say that. Also, I’m not going to take every medication you throw at me. I want to know what’s causing my issues, and I would rather have a fix than a pill to cover up a symptom. I would rather experience the symptom in some cases than take a pill that causes side effects.
On the flip side, I can’t magically take meds and be cured. Some do lessen symptoms significantly, some just slightly, but there is no miracle pill for me. Some chronically ill patients get labeled addicts and drug seekers because they ask for pain medicines. I live off of Aleve and Tylenol and I have a few other things I keep for “bad days,” although I’ve never actually taken them because I’m afraid once I start I will have to use them long-term. But I’m also afraid of the day that the doctors tell me my liver can’t handle any more Tylenol and my stomach can’t handle more Aleve, because then I have to move on to the stronger things. So I basically don’t treat my pain, because I want to be able to use the stuff I have for the bad days. I use creams and braces and hot baths and heated blankets to help, which does help, but it doesn’t fix it.
The Mental and Emotional Turmoil
Being inside my head is just scary and annoying, and takes a serious emotional toll. There’s constant questioning. Can I make it through this activity? Is doing X going to cause me pain? Should I cancel those plans? Why do I feel nauseous? Why does X hurt? Should I use my “spoons” on this or that? Is the doctor going to think I’m looking for drugs? Should I try that new medication/treatment? Am I going to get looks and questions if I go out with my cane/wheelchair/service dog? Should I just stay home? Why am I so tired? Why should I have to live like this? Who wants to marry me when I’m like this? Can I have kids? Should I have kids? How hard is too hard to push myself? Is pushing through the pain going to cause permanent damage? If I don’t push myself, am I going to get worse anyway? Why isn’t physical therapy/exercise/X treatment helping? Is this the dose of Aleve that’s going to make me get an ulcer? Will my friends stop asking me to go out if I cancel or say no again?
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