Moving Along

Yikes, it has been quite a while...  Things were changing so much and I was continually waiting for more test results before I posted again, and now 4.5 months have passed!


Things we've been working on:  
At my June appointment, my doctor found that my white blood cell counts were really low.  He speculated a couple of possible reasons:  that we were pushing too hard with treatment and my body needed a break to catch up, or that there was a problem with my bone barrow.  I was concerned about the latter because my old doctor would tell me at every appointment "your white blood cell counts are on the low-end, but nothing I'm too worried about yet.  Just something to keep an eye on..."  And my new doctor had been saying the exact same thing to me since I started seeing him last December.  Every month it was "something to keep an eye on," and every month I wondered if they remembered that they'd told me that for the last two years.  My doctor said the low count was likely from treating too hard, so we didn't really have an option but to stop treating for a little while-- that way we could give my body a break and a chance to build my white blood cell count back up, and then re-check my counts to make sure they started climbing again.  If they didn't go back up after stopping treatment, we'd know we need to do more testing and look at my bone marrow.

Stopping treatment was rough.  My doctor told me to stop for as long as I could without relapsing.  He told me to start treating again at the first sign of relapse.

The first week off was difficult and I thought "there's no way I can stay off."  But I pushed through and things started to calm down for a little bit, so I went with it.  Over the next few weeks, I felt pretty well overall, but started to slowly have old symptoms pop up-- mostly pain.  I find that there are certain types of pain that I tend to try to push through more than others.  There's the pain that I've had since I was a kid, which I think I push through just because I'm so freaking used to it.  And then there's the more neurological stuff that just plain freaks me out.

When it's joint pain or something that I've experienced since I was a kid, I get this feeling again of "this isn't that big of a deal, I'm fine, I'm FINE."  It's complete denial.  I should know now, after having had those symptoms disappear for a while, that they're not normal.  It feels so normal that I trick myself into thinking nothing's wrong.  I'd be running and in pretty severe pain but would push harder, thinking "you can't stop me from being strong anymore.  I'm fine, I can push through this."  And I mostly pushed through that pain (not to be misread that overcoming Lyme is a matter of will-power.  That's absolutely not true, clearly).  But then Lyme pushed back at me harder and started giving me other types of pain that I know are a really bad sign when I get them.

Sharp, stabbing, sudden, shooting pains that literally bring me to my knees.  At one point I was standing at the kitchen counter and one of those episodes struck and I wailed and held onto the counter and then slid my way down to the floor.  They were quick stabs, like I was literally being repeatedly stabbed with a knife.  It would hit me and be excruciating, then stop for a moment, then hit me harder, then stop for a few moments, then hit me again.  Tears were streaming down my face and I would slowly stand up, wondering if it was going to happen again or if the episode was over.  Fun.

After enough of those episodes I snapped out of my denial and thought "well this definitely isn't a good sign..."

I was off treatment for just over a month.  My bloodwork showed that my white blood cell counts did increase again when I stopped treating-- thank the heavens!  We know that my low counts are from overtaxing those cells.  At my last appointment in July, shortly after I'd started treating again, my bloodwork showed that my white blood cell counts went back down.  Ugh.  So we have this battle...

My doctor didn't like the sound of my relapse and said "we still have our work cut out for us..."  I despise those words because I know he's right.  I'm tired, but the battle is far from over.  These little jerks are hiding, and we need to dig even deeper.  That being said, I am unbelievably thankful for how far I've come in in the last two years.  Thinking back to how I was doing two summers ago, it literally brings me to tears.  I don't know how I lived like that.  I was in extreme pain, 24 hours a day, and had such extreme fatigue and weakness that I had to sit down in the shower and sit down after walking about 15 feet.  And no one could tell me what was wrong.  In fact, I was told nothing was wrong.  Right now I'm running again, and working out pretty hard.  It feels so good.

So we continue moving forward, delicately balancing what my body needs in order to keep my white blood cell counts up and my body fighting a good fight, and what it needs to continue moving forward fighting Lyme and co-infections, without losing the ground we've made there.


Speaking of co-infections:  
We also ran a new test, which tests for Lyme, as well as a number of the co-infections (I'd shown positive for Lyme Disease, but had never had tests done to check what co-infections I had).  My doctor told me that after treating for 2 years, he would hope that I'd be in remission, so there's something we're missing, something that's keeping me from getting well...  Co-infections are one of those things.  We'd treated for Bartonella, and even for Babesia a little bit just based on the fact that I had symptoms for those infections, but he wanted to know exactly what we were dealing with so we could move forward attacking those things more effectively.

My results were positive for two strains of Lyme, Bartonella, Babesia, and Ehrlichia.  Woof.


In addition:
I had a pretty terrible episode at the beginning of August, which felt like it came out of nowhere.  I'd been doing mostly fine, and then one evening when Ty and I were at his parents' house for dinner, I was like "hmm, suddenly my back hurts terribly...  Must be from carrying my nephew around all morning..."  And within 30 minutes I looked at Tyler and said "I really don't feel good."  This was a pretty good indication of what was to come, because I never tell anyone I don't feel good unless something is very, very wrong.

I could feel this episode coming on, and it felt awful.  My skin started to hurt-- my entire body-- just hurt, in the weirdest and most uncomfortable way.  This wasn't my usual joint pain or sharp/stabbing/shooting pains, it was general pain of my skin...  Like underneath my skin was lined with something painful..  Almost like electricity? (electric sensations are not uncommon for me, this is just a quite severe case)...  It was so bad that by the time we got home, even trying to respond to Tyler's questions was painful.  Talking was painful.  Breathing was painful.  Any movement of my body whatsoever was excruciating.  It lasted all night and thank God when I woke up the next day it was gone.

Not just Lyme & Co-Infections:  
Sooo, at my next appointment I just briefly mentioned this episode in a manner that was like "well, I did have this weird evening that was really bad, but it was that isolated incident and I've been mostly well the entire rest of the month, so, I'm doing well.."  Turned out my doctor didn't like the sounds of that episode at all (...shocking).  He actually told me he was worried about MS or another neurodegenerative disease (Lyme can turn into these other diseases...), which shocked me that he admitted those things to me so bluntly.  He ordered a brain MRI with a neuroquant analysis (extra imaging-- more on this later) to rule out these possibilities, but also to determine the level of likely inflammation in the brain and the cause(s).  Like I mentioned before, my doctor keeps saying "you've been treating long enough, there's something else that's keeping you from getting completely into remission."  So we've been working on figuring out what those other things are...  Knowing what co-infetions we're fighting was one thing.  The MRI would shed some more light on what we're missing.

I had an appointment and got those results this morning.  Drumroll please...  My MRI showed no abnormalities (no lesions or anything indicative of MS..).  Hallelujah!  What was really fascinating to me was the neuroquant analysis.  These results showed abnormal sizes of certain parts of my brain.  He said this is common with Lyme and mold toxicity...  Specifically from biotoxins from each of these, which cause swelling of the brain.  My neuroquant analysis shows that I have swelling and inflammation from both Lyme and mold, mostly mold!  If you don't know much about mold toxicity, this isn't the best news.  My doctor is sending the results to another doctor so the neuroquant results can be more thoroughly analyzed, so we can figure out exactly how to proceed.

The MRI did show cysts in my sinuses, which my doctor wants me to follow up with an ENT about. I had an MRI about 10 years ago after a strange episode, and it showed the same thing back then...  And I did see an ENT in college when I got my tonsils out, but I don't recall going over my old MRI results.  It's on the agenda.

The MRI yielded great information...  We ruled out MS and degenerative diseases, and found swelling and inflammation from not just Lyme, but mold toxicity.  Now we know mold toxicity is one other thing that's keeping me from getting into remission.

We're also re-testing my viral loads, because we haven't checked them for over 2 years, and 2 years ago my viral loads were off the charts.  This is also a huge contributor to not getting better.



So, we continue to chip away the pieces.  I'm continuing to treat Lyme, Bartonella, and Ehrlichia with Azithromycin and Bactrim, and pulse in Alinia for two weeks on, two weeks off, and am doing a trial pulse of Flagyl for the two weeks I'm not on Alinia; and I pulse in Malarone for 4 days every two weeks to treat Babesia when I'm not taking the Alinia (got that?...  Ugh).


I feel good that we've discovered new things in the last few months that are aiding in the effectiveness of my treatment.  Remission is out there.

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.