I'm Not Alone

If there is one reason I started this blog, it's for the sheer purpose of spreading awareness.  How many of you had heard of Lyme Disease before you started reading this?  How many of you know someone who had/has Lyme Disease other than me?  Probably not very many of you...  But not for the reason you think...

The more I blog, the more I get the sense that I have a lot of people who are reading my blog.  Excellent.  First mission accomplished!  Awareness is clearly spreading and that is the number one goal.

The more I blog, the more I get the sense that other people are seeing me as one isolated case; one random, poor girl who has a rare disease that no one knows anything about; one person that you should feel bad for.

If there's one thing I have become desperate for people to understand, it's that I am none of those things.  None of them.  I am not an isolated case.  The disease I have isn't rare, and doesn't only affect me.


The Center for Disease Control says that in the United States there are 300,000 new Lyme diagnoses per year.  Do you know how hard it is to get a Lyme Diagnosis??  Especially according to CDC standards (they're outrageously high.  Most people who have Lyme test negative by CDC standards...)??  It took me 17 years to get re-diagnosed after my initial infection at age 10.  17 YEARS!  There are 300,000 confirmed new cases of Lyme Disease per year according to the CDC, with outrageous standards.  That's quite a few people.  Now think about all the people who are walking around with it and have no idea they have it yet.  We are talking about hundreds of thousands of people in the U.S. alone.  Lyme is present on every continent, including Antarctica now (recent finding).  There are over 300 strains of Lyme Disease worldwide and 100 strains present in the United States.  Do you know how many strains they test for?  Take a guess...

One.  One strain.  There are one HUNDRED strains in the U.S.  And couldn't it be possible that some people living in the U.S. contracted their disease while abroad?  They test for one strain.  If you don't test positive, apparently you "don't have Lyme Disease."  Okay, NOW imagine that 300,000 people happen to get CDC positive tests results in a year based off of a test for ONE strain.  There are 100 strains. And those 300,000 people with positive blood tests are the lucky ones who even got to the point of taking a blood test (see my 17 year waiting period above)!

"The CDC has taken an alarmingly restrictive position on Lyme testing, transforming criteria that was developed for surveillance purposes, into diagnostic mandates.   The two-tier testing paradigm for Lyme Disease recommended by the CDC misses approximately half of actual cases...  According to CDC criteria, you must first test positive using a highly unreliable antibody screen.  Next, the CDC requires a highly criticized combination of two IgM bands (that they only recognize in the first 4-6 weeks of infection) or five IgG bands.

In a March 2015 study, Johns Hopkins’ researchers found that 39% of patients with physician diagnosed erythema migrans rashes (which alone is diagnostic for Lyme Disease) remained seronegative on a Western Blot. Even more tellingly, the majority of seropositive individuals on both acute and convalescent serology had a negative IgG western blot, demonstrating that IgG seroconversion on western blot was very infrequent. 

Is this starting to sink in?

Now add the co-infections.  When you're initially infected (likely by a tick bite, but not in all cases), it's a lottery as to what combination of diseases you'll get.  Perhaps that tick was carrying just Lyme Disease.  Perhaps it had Lyme and Babesia.  Perhaps it had Lyme, Babesia, Bartonella, and Erlichiosis...  Perhaps it was carrying one of the other infections and not Lyme at all.  The initial tests for Lyme Disease test for just that--  Lyme Disease.  And the initial tests are laughably inaccurate and miss HALF of the cases who are chronically ill.  And what about the hundreds of thousands of people who have any one of the other 99 strains than the one tested for, or any one of the other co-infections without Lyme Disease??  Their tests come up negative and they are left in limbo, untreated.


If you do happen to get a positive test, any doctor will treat you for Lyme...  For a maximum of one month.  "There has never been a study demonstrating that 30 days of antibiotic treatment cures chronic Lyme disease. However there is a plethora of documentation in the U.S. and 
European medical literature demonstrating by histology and culture techniques that short courses of antibiotic treatment fail to eradicate the Lyme spirochete.  Short treatment courses have resulted in upwards of a 40% relapse rate, especially if treatment is delayed."  


My point is that Lyme Disease is still hugely misunderstood, even the medical community.  When I say this, I want it to be crystal clear that I have never and will never mean this as an attack on any particular medical professional.  My sister is a nurse, my sister-in-law is a nurse, my grandmother was a nurse, my father is a doctor of chiropractic, I have two cousins who are physician's assistants, another who works in a surgical office, an uncle who's a surgeon, countless friends who are doctors and nurses, students who are doctors and nurses...  And I love and respect them all.  There is a serious flaw at the very core of our medical system regarding this disease, which is none of their faults.  The flaw is that the IDSA (Infectious Diseases Society of America) writes the regulations and guidelines for both diagnosing and treating Lyme Disease, and those guidelines are TERRIBLY wrong, ineffective, and outdated, as are the blood tests.  This is why there are medical and naturopathic professionals who have studied Lyme Disease extensively, are ILADS certified (International Lyme and Associated Diseases Society) and are specifically "Lyme Literate."  They can accurately and effectively diagnose and treat Lyme and co-infections, and treat for long enough to get the patient into remission.  This is why it is imperative that someone who is suspicious they have Lyme Disease see an ILADS certified doctor to either get properly diagnosed with Lyme, or to properly rule it out as a possible cause of illness.


Please feel free to reach out with any questions.


Thank you, thank you, thank you for listening!




References:
-http://www.cdc.gov/lyme/faq/index.html
-http://www.ilads.org/lyme/about-lyme.php
-http://www.ilads.org/lyme/lyme-quickfacts.php
-http://lymediseasechallenge.org/the-facts/
-http://lymediseasechallenge.org/testing/
-https://www.envita.com/lyme-disease/lyme-disease-testing-a-difficult-diagnosis-contributes-can-lead-to-problems
-https://www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/

New Things

I started two antibiotics that were new to me in January, then switched to Cefpodoxime and Bactrim in February, mostly because my doctor was concerned about my cardiac symptoms and wanted to get me off of one of the antibiotics I was on in January.

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?

Onward, Ho!

Where do I begin?  I've put off writing an update because I don't really know where to start.  The last time I wrote was October 29th.  I was feeling really well, coming off of my antibiotics after a year of being on them, and switching doctors.  Over the next month, things stayed mostly the same, but I had a slight backward slide-- not bad enough yet to make me think I was necessarily relapsing, but it crossed my mind (although I shot that thought right down... no, no no) and symptoms were definitely very slowly creeping back in and I didn't feel like I was continually getting better anymore like I had been.

I had my first appointment with my new doctor on December 1st.  I told him what I just told you and he gave me four possible reasons for the slight backward slide and two possible options for moving forward:  

Potential reasons I was sliding backwards:  

1.  We simply didn't treat long enough and the Lyme and coinfections are still active.  

2.  Perhaps we were on the right track but the combination of antibiotics that I was on didn't bust open the cysts that the bacteria form to hide in, so as soon as you stop treating they come crawling back out.  

3.  Perhaps we did treat long enough and I'm experiencing "Post-Treatment Lyme Syndrome," which he said he firmly believes is a real thing...  Not in the way that Western medicine refers to it (Post-Treatment Lyme Syndrome in Western medicine= You were treated with a short course of antibiotics, which should cure you, but you still have problems.  There is no known cause or cure.  They must be in your head.  Seek psychiatric help), but instead meaning that you have treated, you have seemingly successfully treated, and your body is still healing from the damage the Lyme and co's have done to your body.  This could take some time to heal (nervous system, hugely) and over time symptoms should continue to diminish, although a few may stick around from permanent damage.  

4.  I could have exposure to environmental toxins that are keeping me from completely healing.  

Possible options for moving forward:  

1.  Jump right back in on antibiotic treatment because it sounds like a slow relapse.  We could do oral, injectable, or IV antibiotics.  

2.  Hold off for the next month and see how things change, and in the meantime continue treating with just herbal tinctures and supplements.  

-In either case, also check for possible environmental toxin exposure (i.e. mold).  

At the time I was reluctant to jump back in on antibiotic treatment.  I think he would have preferred IV, but no matter which route we took, I didn't want to do it again.  This is only because I was holding out hope that over the next month things would start to get better again...  Or honestly, that even if they continued to get worse, then we would know for sure that antibiotics were a necessary option again.  

I continued on just a Bartonella tincture and my usual supplements from December 1-January 14.  He did add in so many new supplements that it pushed me to over 40 pills a day.  I hated that (I still do...) and it seemed insane to be taking that many things, but I understood his reasoning and liked where he was going with it.  The supplements he added are specifically to bind and remove toxins from my body, and to aid in immune support.  Both are things I really need.  Lyme leaves a boat load of endotoxins in your system, and the medications leave who know's what behind.  So, 40 pills a day it is.    

Throughout December I still felt pretty well, overall.  So much better than I'd been in so long.  But as I looked back over my daily "health/symptom journal" for December and the first half of January, I noticed there were way more days than I realized that I'd written that I'd had some pretty rough days, or at least parts of days.  Even more symptoms were starting to creep back in, and the severity was increasing a little bit.  Still not to the point where I was thinking "this is bad, I'm relapsing,"  but reading my notes on January 14th was definitely a slap in the face to wake up and realize what was happening.  I don't know if I was in denial or what.  I just so didn't want to get worse again or to let myself even think for a moment that I possibly was.  For some reason I thought I could keep it in check with mind-over-matter...  Silly me, I know how Lyme works.  

More backward slide:  

On January 8th I had an entire day where I was bed-bound.  Unbelievable headache/neckache/jawache; feeling suddenly flushed, fever-ish, chilled and nauseous; sensitivity to light and sound; feeling of heaviness upon standing and immediate weakness...  Started the moment I woke up at 8am and lasted until 12am that night.  I've experienced this many times.  I knew it wasn't particularly a good sign, but excused it as a random bad day because although I stopped antibiotics, we were still treating with herbal tinctures..  So herx reactions were "allowed."  Mind you, I hadn't had a day like that in a long time, so I should've known.  Then the following Monday I got one of those horrible cramps... in my chest (aagghh), while I was teaching (aaaggghhh), that was so terrible I couldn't hide it if I tried.  I did try at first.  Then my student turned to me after asking a question and not getting a response, to find that I had tears streaming down my face and was grabbing my chest.  She was so sweet and I was so thankful for that.  I'd never had that happen during a lesson to the point that I couldn't hide it.  I excused myself to our bedroom where Tyler was studying and burst into more tears until it passed then pulled myself together to go back out and resume her lesson.  Ugh.  Over the next few days I had an increase in traveling body aches and pains; more headaches; the weird thing were my vision rapidly shifts from left to right and back, like you're fast-forwarding a movie or something; more twitches; big heart flips; crawling sensation on my scalp; tingling in my left thumb... 

January 14, 2016 appointment:  

My appointment on January 14th was good for me.  I hate change.  I was not happy to be switching doctors at this strange point in my treatment, but this new doctor pulled through for a second time and I am really thankful to be working with him.  Upon reviewing my December 1-January 14 symptom log, with special attention to the previous week in particular, we determined I was slowly relapsing, and that I could continue slowly relapsing for a long time, or I could wake up one day back where I was a year ago.  Those are not options.  This time I wasn't reluctant to start on antibiotics again (although I am really bummed that I have to).  He started me back on 1,000mg of Ceftin/day and 1,000mg of Clarithromycin/day.  These antibiotics target the spirochete form of the bacteria.  In a month or two he plans on switching out the Ceftin to something else and adding in a 3rd antibiotic to bust open the cysts that the bacteria form to hide in.  

He really wants me to do Major Auto-Hemo-Therapy (MAH) once a week for 12-15 weeks...  This means they would draw some of my blood, mix that blood with ozone, then run it back into me via IV while simultaneously treating it with a UVB light.  He says he has a great success rate with this treatment.  It's also not covered by my insurance because it's performed in-office (out of network... naturopath) and is an "alternative" treatment.  This would be something like an additional $650/month, out of pocket.  We just can't afford to add that, so I chose not to do it and to "wait" until we're magically endowed with an additional $2,400.  Sooo until then...  Le sigh.  

He recommended doing IV hydration in addition to the MAH therapy, but said it wasn't necessary if I treated at home by adding salt to my water.  So I'm doing that...  Kind of.  The first time I did it, it made me sick for the following 4 days, so I've been afraid to try that again.  He said that the skin on my forearms looked "muddled," meaning you couldn't clearly see my veins...  Meaning that there's a problem with blood flow/circulation, which is common in people with low blood pressure, because there's not enough pressure to force the blood to pump through your veins properly.  Makes sense.  The goal here is to increase blood flow/circulation.  I'll try to get back to adding salt to my water in the next few days.  

Lab Results as of January 14:  

-My ferritin levels were really low again (iron absorption).  He wants me to do green veggie smoothies 4 times a week to help increase my ferritin, so I'm doing that.  Every time I stop supplementing with iron, my ferritin goes right back down again.  We already eat a ton of green veggies, good meat, a ton of beans and lentils...  Hopefully the addition of green smoothies will help make a dent?  

-My white blood cell count was on the low end, indicative that my body is fighting disease (Lyme...).  

-My blood glucose level was on the low end... 

-My BUN/Creatinine ratio was on the high end.  

-My Alkaline Phosphatase was on the low end.  

-My Pregnenolone was low.  

-My Progesterone was low.  

-My CD57 result was 32.  If you remember reading about this in previous posts, this test is not used to diagnose Lyme, but is used in support of a Lyme diagnosis.  A healthy number is over 300.  200 is a "safe zone."  60-100 is the "at risk" zone.  0-20 is "severe illness."  My number back in August, 2014, before we started treating was 14.  My number when we re-tested in December, 2014 (after treating for a few months) was 9 (serious strain on my body)...  My number in December, 2015 was 33.  It's gone up, woo hoo!  Still indicative of the fact that my body is fighting hard and under major stress.  We still have a lot of work to do to get that number way up, but I'll take that increase from 9 to 33!  

Ending thoughts:  

I'm not feeling too bad.  I'm still doing way better than I was before and I am unbelievably thankful for that.  When people ask me how I'm feeling lately I say "pretty good" or "not too bad," and I mean it.  We'll keep chipping away at these little bastards and I'll get to remission.  I know I will.  

The Best Post Thus Far

My doctor had told me that once I'd been feeling pretty well for a solid three months in a row, we'd experiment with coming off of the antibiotics and continuing with just herbal treatment.  Although I was well aware that I'd been steadily feeling better for a while, it was a complete shock to me when she said "you just refilled all your antibiotics?  Okay, so finish them this month and don't refill them" at my appointment at the end of September.  I had to count to myself...  "August, September, Octo... yep, that'll be three months..."  I was taken by surprise, but my eyes filled with tears because I was so unbelievably happy to hear those words.  I cried happy tears all the way home.  I couldn't believe that I'm doing well enough to be doing this.

Scary Parts (in honor of Halloween...?):  

We don't know for sure if it's time to pull off.  This is all a test.  Unfortunately, there's no way to know if we've successfully killed enough of these buggers for me to stop the antibiotics and fight with just herbals, other than for me to come off of the antibiotics and see what happens.  I still have some symptoms, but my doctor seems to think some may be permanent from damage to my nervous system after so many years of Lyme, and some may come and go during especially stressful times in life.  We're trying to figure out what my new baseline is.  Every person should be conscious of their stress levels, and stress catches up with everyone eventually.  But stress, an injury, another illness, any of those could throw me right back to where I was.  I need to live as consciously as possible-- to eat healthily, to exercise, to get good sleep, to limit stress, etc.-- which isn't a bad thing.  

The other scary part:  A relapse could be obvious right away, or it could take months, or years.  So that's comforting.  Also, my doctor said that if I were to relapse, she wouldn't put me back on oral antibiotics because that would mean they weren't getting deep enough into my nervous system; she would do injections for sure.  If you recall, that's what she wanted to put me on initially, but my insurance won't touch it with a ten-foot pole, and it would be about $2,000 for a three-month round.  That's scary for my body and our wallet.  

The other thing that's not helping my anxiety over this is that my doctor is retiring.  I saw her for the last time last week!  Another doctor is taking over her practice, and she's assured me that he's "next-in-line" for Lyme expertise in the Portland area, as far as experience goes.  The timing of me coming off all my meds, saying goodbye to my current doctor, and waiting for my first appointment with my new doctor feels scary to me...   iBut we have plans if things go awry over the next month, and I'm confident that they won't.  

On To the Good Stuff:  

Okay enough of the scares...  On to the good stuff!  I'm not taking pharmaceutical antibiotics anymore!!!!!  Weeeee!  I finished my Azithromycin last week, finished my Rifampin on Monday, and finished my Ceftin on Tuesday, and I am SO happy to be getting that stuff out of my system after a year.  I'm going in to this with happy thoughts that I am well on my way to remission and I don't need those drugs anymore.  I'm focusing on keeping my mind right, and how good of a thing it is to be removing those extra toxins from my body, rather than focusing on the fear of removing them.  I am feeling pretty darn well and began working out again this week, for the first time in a long time.  I did start another Bartonella tincture (herbal antibiotic aimed at killing Bartonella, since that seems to be hitting me harder than Lyme) to replace the pharmaceuticals I just came off of, and the plan is to continue treating herbally for probably 6 months or so, then try coming off altogether.  

My new doctor will pick up right where my old doctor left off, and will continue monitoring me and doing bloodwork to make sure all my organs are functioning properly.  I'm nervous, but so excited, and unbelievably thankful to be at this point.  

Please keep me in your thoughts and send all your positive energy for me to continue healing!  

Onward ho!  

The Difference a Year Can Make

I've said it before, I'll say it again...  Where does the time go?  Man, it seems to go by so fast lately.

It was July, 2014 that I was diagnosed with Lyme, and August, 2014 that I started treating for Lyme.  I really can't believe a year has already gone by.

I must say that I am so thankful for where I am today, compared to last year.  Last year at this time I remember being terrified of where I may be today.  Knowing that Lyme patients get worse before they get better, I remember wondering what the heck the next year had in store for me.  It's definitely been crazy, but I finally turned a corner at about the year mark.

Now when I look back, I'm terrified of where I was a year ago.  Things were not good a year ago.  Every day that passes and I feel myself getting stronger and stronger, I'm realizing more and more how sick I've been.  Trust me, I knew it when I felt my worst, but it became so freaking normal that it was hard to compare to what I should feel like, and sometimes hard to remember what it's like to not be aware of your misery all the time.  And when you're working so hard to cover it up so people don't worry, you almost start to convince yourself it's not as bad as it is.


A Year In Review:
My state last summer was this.  I had to sit down on the shower floor to bathe myself, because I was too weak to remain standing for that long, the motions of bathing were exhausting, and any heat was pretty intolerable.  My showers took a while because I had to rest while I was in there.  Washing my hair just about did me in.  The act of moving my arms over my head was exhausting- caused my heart to pound, my body to tremble, light-headedness to set in.  And I'd sit there and lean against the wall, breathing heavily, as if I'd just run a marathon.  And I'd wait.  My hands trembled horribly when I tried to shave my legs.  The vision of watching my hand reach down to my ankle with the razor is the vision I would have of someone terribly old, or terribly ill.  That was my hand.  It always scared me to see it.

My state last summer was this.  I felt like a horrible teacher.  Sometimes Tyler had to drive me to the church I was teaching at (3 minutes from our house) and carry my bags in because I was too weak to do it myself.  I had to lean my head against the wall to prop myself up during lessons.  My hands trembled when I would point to a student's sheet music.  I had to stop and catch my breath after demonstrating a vocal exercise.

You get the idea.


Current State:
So much has changed.  And it's still so hard to describe.  So much is better.  I'm still symptomatic and things are still up and down, but I have turned a different corner.  I don't want to give false advertisement here.  Often times when people see I'm improving they think "oh good, she's better."  I am better.  "Better" is comparative, not a final state.  I am better than I was last summer.  Thank the heavens.  I am improving!  I am not "all better."  It's not that simple.

I think I really turned the corner in July.  The title of my last post says a lot...  "More Alive Than Dying."  That's how I felt for the first time in a while.  Things have been progressing pretty well for a few months now, but I was still having lots of episodes that were pretty bad.  Currently, my energy levels are up and down, but all of my other symptoms are changing.  To summarize:

-Twitches (possibly more often, but don't last as long)
-Internal tremors/vibrations/buzzing (used to be an intense full-body vibration that left me feeling like a zombie being electrocuted, and now when it's full-body it's much less intense; it's currently more often isolated buzzing, mostly in my legs)
-Muscle cramps (so last week they were pretty severe- they woke me up every night, with writhing, crying... but they still weren't the worse episodes I'd ever had... hoping this one settles down soon)
-Heart palpitations (still occurring, but less frequently)
-Head/neck/jaw pain is currently nonexistent (this usually happens during a bad flare or herx...  hasn't happened since July, woo)
-Sharp/stabbing pains (there's been a significant decrease lately)

And for the big one...
-Overall pain (traveling/migrating) has decreased significantly over the last month or so.  I don't remember the last time I had this little pain.  Even in June I still had significant pain just walking, or sitting in a car for longer than 15 minutes, and now I have very little pain.  This is the weirdest for me, because it's been the single constant symptom since I was 10 years old.  The pain in my hips mostly is something that I've learned to deal with and literally thought would never go away.  It's starting to.  (TEARS)

So, just when my doctor had been telling me I'd probably need antibiotic injections eventually to totally kick this, I finally turn a corner (hallelujah).



I had an appointment this week and when my doctor did her physical evaluation, she said I'm looking so much better than I was previously.  While she was doing the physical tests that she does (I've never been quite sure what she's actually looking for), she said "when I used to do these tests, it used to be like 'whoa...' and now you've improved so much.  It's different."  That's always good to hear.  My blood pressure is still up and down and up and down.  At July's appointment it was 80/50 again.  She didn't tell me what it was this week, which leaves me to think it was probably low (usually she tells me when it's normal, because we're excited about it lol).

The biggest obstacle right now seems to be my blood sugar.  She has determined I'm definitely hypoglycemic, which likely isn't a direct result of Lyme, but is exacerbated by it.  I've known this since high school because I can feel my blood sugar drop all the time, but no one has ever verified or tried to help me deal with it.  My blood tests over the last year show how unstable my blood glucose levels are, and so do my symptoms.  We're working harder on seeing what we can do to get it under control.  It sucks to feel like you're eating everything right, eating at all the right times, etc, and you crash even after eating because your body is metabolizing and that's exhausting for it...

I'm reflecting a lot lately and feel so hopeful with where I'm at.  I'm trying not to be overly optimistic because if there's anything I've learned from Lyme, it's that things can change in a heartbeat, and it likes to pull you down when you think you're starting to win.  But I feel good about where I'm headed.

Please keep me in your thoughts and hope for continued improvement!  Onward and upward, folks!

More Alive Than Dying

It's been a little while.  I apologize that a lot of this is for me to be able to look back on in the future...


To recap:

June 10th appointment:  
My appointment went well overall.  She was encouraged by my report of how I'd been feeling over the last month, even though I told her that May had been pretty awful and I had all of my usual symptoms of fatigue, pain, twitches, neurological stuff, the whole work-up.  She was encouraged because regardless of the number of my symptoms (and oddly, even the severity), for whatever reason, I felt different.  I told her I felt like there'd been a shift- that I can't really explain it, but I just feel different.  Stronger, perhaps.  She told me that the way I was describing it was really encouraging; that as soon as her Lyme patients start describing how they feel the way that I was, that they're reaching a different point in their treatment.  So we're definitely headed in the right direction!  Can I get a WOOT!!


I was disappointed that my doctor didn't remember that I'd had an echocardiogram or an EKG done.  We'd already gone over the echocardiogram results at my previous appointment, and I was supposed to be getting the EKG results at this appointment.  To save you from my feelings, I'll skip to the good news-  both my echocardiogram and my Holt monitor (2-day EKG) results were normal enough to not be worried about it.  Thank the heavens!!

So any dysrhythmias that I'm feeling are a symptom of the Lyme, but they're not currently problematic.  When she was listening to my heart, she could hear that there's a steady rhythm, but the first beat is much stronger and it sounds like my heart is working hard...  Makes sense, because that's exactly what it feels like.


Protocol:
We're staying on the same medication- nothing is changing.  For my own future reference, this means:

Antibiotics:
Rifampin- 300mg, twice daily
Azithromycin- 250mg
Cefuroxime- 500mg, twice daily
Bartonella tincture- Half a dropper, twice daily

Other Prescriptions:
Fludrocortisone- 0.1mg
Hydrocortisone- 1.75mg

Supplements:
Interfase- 675mg
Evening Primrose Oil- 500mg
Vitamin D3- 5,000iU
Citramins II- 1 capsule
Niacinamide- 500mg
B Complex #6- 1 capsule
Zinc Citrate- 30mg
Cardio Mag-Lo-Plex- 1 tablet
FlexNow- 1 capsule
Probiotics- 5+ billion CFU's, 450 mg


For the first time she gave me a rough estimate of a potential time that we may begin experimenting with coming off of the medications.  She said we'd probably switch antibiotics in September or October (to Doxy, which makes you super sun-sensitive, so we'll wait until after summer), and if things keep going well then we may try coming off of some meds in December to find out if I relapse or stay strong.  I'm not holding my breath, because every time I see her there's a new plan.  But I don't even care if it's December or not.  It was so refreshing and encouraging to just hear a potential timeline for once; to feel like I have something I'm actually working toward, a goal I can hit, instead of feeling like we're aimlessly treating for God knows how long, with no possible end in sight.  No matter what, we won't do this until I've been feeling almost entirely well for at least 3 months in a row.
For the first time I actually feel like there's an end in sight though.  It might still be months or years away (she still says it wouldn't be abnormal to treat for about two years), but I'm hopeful that this will get into remission and that we've made a dent so far.  When I stop and think about it, I'm shocked that I'm feeling as good as I'm feeling right now.  17 years of this disease and after about 10 months of treatment I'm beginning to feel better.  Unfortunately that is so much more than so many late-stage Lyme patients can say.


Notes for my future self:
My blood pressure was 100/60 at June 10th's appointment, which was an improvement.  She did say that my white blood cell count was a little low- the cutoff is 3.4 and mine was 3.3- nothing to be concerned about, but something to keep an eye on.  We'll check my vitamin D levels again when I get my bloodwork done this Wednesday (7/8/15).  She gave me a supplement to help reduce inflammation and joint pain...  Not sure if it's been helping or if I'm feeling better in that way because I was already feeling better in that way.  She wants me to try the slippery elm to help with herxes, but I'm still worried to try it since I had a reaction years ago.




It's strange that when you read my symptom log, it still has quite a few symptoms, but my response is "great!" every time someone asks me how I'm feeling lately.  I think the key is noticing that they're not happening nearly as often (previously it was all day, every day, all various symptoms overlapping and hitting me at once; and I was so used to that, that when I would write in my symptom log, I knew that was what I meant- constant).  Now, I may write down that I have some pains, twitches, internal tremors/vibrations, etc, but they're not nearly as often and they're shorter-lived.  They're so short-lived or insignificant compared to what they usually are, that I'm almost forgetting to write in my symptom log altogether.  That says a lot to me.  Overall I'm having much less pain and much more energy.  I have been hitting a wall daily since I'm trying to get so much done.  I've been napping in the middle of every day for about 2 hours...  Still an improvement since I'm able to get stuff done before and after that!


How I'm currently feeling:
I told Tyler that for the first time since I started treatment, I feel like I'm more alive than dying.  I know that sounds dramatic.  I mean it.  I felt like the life was being sucked right out of me, and now I feel like it's starting to be breathed back into me.  I love that feeling.  And here come the tears.


It's a good feeling.

Oh, The Irony! Call Me Kooky, But...

Oh, the irony:  

On my most horrible days, I am a shell of the person I want to be.  I feel useless because I don't have enough energy to do anything.  Because my husband has to leave me in the car while he runs into the store and does all the grocery shopping.  Because I have to lay down as soon as we get home while my husband puts everything away and then makes all of our meals.  Because I am in too much pain to enjoy doing anything and I feel like my tears are a burden to my husband.  I despise feeling useless.  It hurts so much that there are so many of these times.  I feel like so much time is being stolen from me.

So I stop myself.  And I try to convince myself that time isn't being stolen.  Because it hurts too much to think that it is; that I'm 27 years old and I spend quite a few days like this.  I convince myself that I will not let damn bacteria take time away from me.  There may be times that I am unwell, sure.  But I will not be useless during that time.  I will use that time.

So I ask myself, "what am I supposed to take away from this time?  What is it that I'm supposed to learn?"  I think I'll never stop figuring that out, and I think that when I am well again and I look back at this time in hindsight, it'll be clearer.  But I feel like the tears that I shed during the times I feel useless tell me a lot about what I need to learn and how I'm supposed to use this time...


When I stop and think about it, for years I have been terrified of illness.  One of my biggest obsessions with my Obsessive Compulsive Disorder has been over illness (obsessing about it and trying to prevent it through compulsions).  How ironic that all this time I was carrying a stealthy disease.

I continually ask myself why this (Lyme) is happening to me.  The other day I was at the gym with Ty, trying to get in a short workout even though I didn't feel well, and I literally started cursing Lyme out loud with every step I took.  First I started feeling angry because I was feeling weak and exhausted and thought "why??"  And that anger turned into "how do you like all this oxygen in my blood, huh?  Oh, you don't like that?  You don't like seeing me build strength?  Well screw you!"  Tyler laughed and then we both laughed and there's a possibility that those words are a toned down version of what actually happened.  And it made me feel good to talk to the blasted bacteria and tell them that I. Will. Win.

I've always been a strong "everything happens for a reason" believer, but with Lyme I keep finding that I'm falling short (which doesn't make me much of a believer, apparently).  I only fall short sometimes, I suppose.  When I'm feeling well, it's much easier to feel hopeful and to look toward the future with optimism and hope and think "yes, I will be well again!"  When I'm not feeling well, I find that I'm trapped in a hole, wondering how I got there and how I'm supposed to get out, thinking "how much longer am I going to feel like this?"  I think it's the uncertainty of treatment and remission that drives me over the edge.  There are no answers with Lyme.  I'm a control freak, and I just want to know!!  I want to know what kinds of treatment I will continue to endure, how long it will take, how much money it will cost, how Lyme will impact the children we have, if I can get this in to remission and keep it that way...  I just want to know.

As the saying goes, "the ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy."  These words haunt me lately.  I feel I am failing as a human when I am angry at Lyme.  What does it say about me, that I have such feelings of anger and hopelessness about this disease sometimes?  I feel like a hypocrite.  I can tell other people that everything happens for a reason, but I am having a very hard time seeing the reasoning for this illness.  What a crock.

But if I look deeply at the kind of person that I am, from every angle, it kind of makes sense again.  My flaws are that I worry.  That I obsess.  That I feel the need to have complete control.  That I trust no one anymore.  That my faith can be shaken when everything comes crumbling down.  That I am so preoccupied with worrying about what will be, that I am not enjoying what is.

My strengths are my compassion.  My understanding.  My desire to reach out to others.  Writing how I feel through music.  Recognizing other peoples' pain and finding a way to try to relieve it.  Loving others to a fault.

Both of those lists have been the way that I have been for as long as I can remember.  And it all starts to make sense to me.  The things that can bring me down are my weaknesses, and my strengths are my tools that I have been given to overcome them (seems obvious, right?).  I have every intention of working on my weaknesses so that whether this is the only life we live or not, I live it better.  "Better" means letting go of expectations, worries, flaws...  Living with what is and being in the moment.  That doesn't mean that thinking about, preparing for, and looking forward to the future are bad things.  That means that for me, I can't obsess about what the future might hold.  I have to focus on right now, on getting better, on continuing to be a loving person through hardships.  We all have hardships.  Life is about helping to make someone else's hard times a little more bearable, no matter what you believe is the reason for those hard times.

So why me?  Because I have something to learn through this (I say "through this" and not "from this," because I think it will be a continual journey).  And perhaps I have something to teach through this.

If there are things that I'm learning, it's that on the other side of hell there is hope.

It's that I am stronger than I think I am.

It's that I'm seeing a side of my husband that I've never seen before- a new kind of understanding, compassion, and caretaking (Good Lord, I love you so much).

It's that I can get so fired up about something that I'll do anything to fight for it.  Who are we if we sit idly and let the things that hurt us continue to hurt others?

It's that I cannot live in fear.  Above all, I cannot live in fear.  I'm truly starting to feel the karmic circle here for me with Lyme.  Isn't it ironic that my whole life I have lived in fear of illness?  Most of my Obsessive-Compulsive-Disorder is centered around fear of and the warding off of illness.  Is that not ironic??

I guess I feel like I'm getting somewhere; if not actually improved health, at least an improved understanding of my spiritual role in it??  I do think that overall my health is improving, though.

It's time to listen to the messages that life sends us.  Listen to the people that are strategically placed into our lives, listen to the happenings that take place.  Call me kooky, but I think that otherwise, it is all in vain.



Update:

Things have continued to be up and down, and up and down since the last time I wrote.  I had an appointment on May 4th, which I was anxious about, as I had had an Echocardiogram (ultrasound of the heart) a couple weeks prior and knew I would be getting the results.  Turns out, that was a two second conversation consisting of "your echocardiogram was normal..."  Hallelujah!  This rules out structural abnormalities of the heart.  The hospital failed to do the correct EKG that day, which possibly turned out to be a blessing in disguise.  My doctor had ordered a 30 minute EKG that was supposed to be done that day as well, which is pointless if I'm not having symptoms in those 30 minutes (and I likely wouldn't have).  She decided it would be more effective for me to have a holter monitor and wear it for two days anyway.  I got it attached yesterday and have it removed tomorrow.  I had some palpitations and pounding of the heart during activities where your heart shouldn't be pounding, or at rest, so I'm hoping it's picking up some "good" stuff.  The goal is to determine if the symptoms I'm having are from something benign or harmful.  Prayers for something benign, please.

Feeling Wired

My blood pressure was 80/60 again.  Woof.  I'm staying on the Ceftin, Zithromax, Rifampin, and Bartonella tincture (and the host of supplements and the like).  My doctor reemphasized that if she had it her way, I'd be treating with the Bicillin injections (if you recall, they were a couple thousand dollars and my insurance won't touch it with a ten foot pole, which is why I'm on the oral antibiotics instead).  She said she thinks that eventually that's what I'll need in order to kick this to the curb...  Oye.

She really wants me to see the cardiologist for a consultation, so that's in the works.

I went in to have my first IV hydration on the 6th (infused with vitamins), in hopes that it would make me feel remarkably better.  I did seem to have a great weekend, but it was unclear to me as to whether it may have been the hydration helping, or whether it was the natural cycle of the bacteria doing it's thing.  When I woke up that morning before I went in, I had already thought "well this is going to be a better day..."  So I'm not sure.  I may try it again in the middle of the next herx or something.

I've still been having muscle cramps every so often, that usually strike me at night or in the middle of the night.  A few weeks ago they were absolutely horrible...  Writhing, screaming, tears...  Tyler was starting to get used to it and talked me through it saying "you know this is just the Lyme.  You know this will be over in a few minutes...  It will end."  It was comforting to hear those reminders.  This week, I was startled from sleep at 3:30am three separate times due to unbelievable muscle cramps, and I had a fourth one this morning when I was taking Kea out.  These times, they didn't bring me to tears for once- so that's an improvement!

I'll keep you posted on the results of the holter monitor (two day EKG monitor) that I'm wearing as I get them at the beginning of June.




Thank you for taking the time to read <3