Lyme Files: Loneliest

This is not an illness that people can understand unless they have it or have watched someone go through it.

People would say, "Oh, this one time__" in an attempt to let you know they KNOW. My friend once said she understood my fatigue because she was pregnant and also tired.

Another friend spent about an hour explaining how her dermatologist had found a mole that was pre-cancer and she was able to have it removed. She told me how scary it was to be told to have cancer and how she was so lucky to find the top specialist who could treat her and follow up with her. She said she understood what a "medical scare" was. She also was very careful to use sunscreen.

I just remember wanting to connect with her story. To find the common thread of illness. We had none. I asked if she wore bug spray at all, she said it was toxic and she didn't like the smell of it. I told her to be careful since I was struggling with tick-borne illnesses like Lyme.

"Well, at least it's not cancer," she told me.

It is the loneliest illness - or as lonely as invisible illnesses truly are - because no one knows what you are going through. No one is going to understand you, help you or believe you - even if they think they want to.

There's no company selling lime green items to support some Lyme Disease fund. There is no giant 5K or bike ride or bake sale to let you know how bad this stuff is. There is no "face" of Lyme Disease or any tick-borne illness.

You Don't Look Sick
As people, we have an image of how "sick" looks. Sick is thin and bald. Sick is mental illness portrayed on Criminal Minds and other police procedural dramas. Sick needs a wheelchair or medical stuff hanging out of you. Sick is a very specific age or at least a rotting smell.

If not, you are not sick. You are lazy. You are faking it. You want attention. You are toxic. You are dramatic.

If you couple that with the fact I had something that the medical community saw as something I couldn't have - it was a time I was really on my own. Well, me and my Mom. She's a minxy lady who, somehow, kept me on track.

There was no support group for Lyme when I had it. There were groups of people trading survival techniques and secretly trading doctor information. And people who were sick and disconnected and angry. And people who couldn't remember what they were talking about in the middle of talking.

Watching someone come back from a blackout didn't make them easier to live through. You just grasp at each other in this fog of sickness and defeat and rattle off the words you can remember. I remember seeing new faces looking around with this wide-eyed look at the range of illness in Dr. Burke's waiting room. Too often, there were faces I never saw again. Not because they were better but because they died. Maybe the support group was something of a HIPPA violation - when you ask where someone is.

It was (and IS) a world of survival and anger and the people who needed support the most were too sick to seek it. Too sick and already told they would get better when they decided to get better. These people are silenced by meaningless and untreatable things like Chronic Fatigue Syndrome (CFS) and fibromyalgia. 

At My Sickest-isk
Here is a photo of me - April 16, 2006. This is what I looked like literally a little over a year before I was about to die.

I look like a cute, attractive girl. This is how the medical community and how people who met me saw me.

Well. . not everyone saw me that way. Let's give a moment to tone back the vanity. I was, you know, a normal looking 26 year old. I don't look like someone who is "sick." At this point, the amount of pain and memory loss and everything had stopped me from seeking help. I was living at home and just trying to get by.

I'm even doing my favorite thing ever - being on the Internet.

Here I am in June of 2007 - still hardly looking sick. I actually look a little overweight maybe.

So. . if someone doesn't look sick, doesn't act sick, doesn't do sick good enough - can they really be sick?

If you have Lyme and other tick-borne illnesses - it doesn't even matter. You need to keep all these things quiet. If you lose your doctor, if you lose the people who do believe you are sick by talking - you have nothing.

Lyme Files: Relapse

I endured five relapses. That means, five times a treatment seemed to work and then I got sick again. These parasites go cystic, the hard protein balls which protect them from any attack. It means they are not attacking the body or creating any toxins - but then they come out again.

After I got through the last the last relapse - I had a long talk with myself and decided if the babesiosis came back again, I would choose a more palliative care. There are people with tick-borne illnesses who have gone longer than me with relapse and infection, I don't know how they do it. I just felt I had lost so much and if I could function with the infection it would maybe let me get on with some type of life more than forever being choking down pills and herxing.

I could live for a while on this but it would be a life of managing the systems knowing it would ultimately kill me.

 This is what that looks like - these are posts from the notes I had been keeping:

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March 17 2008:

both my parasites are back and they have infected my brain again leading me to have worser-than-normal memory issues, missing time (aka black-outs), fatigue, pain and overall unwellness. Both are resistant to the 15 pill-a-day treatment I am on so, we’re stopping treatment.

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April 24 2008:

After a 10 hour stay at the doctor's office. . .

The parasites have gone cystic. This means, they have encased themselves in thick walls of protein that are very hard to break down and are floating around. Good news, I suppose, is this is a sort-a remission but they can live like this well after I am actually dead and reemerge at anytime. I am on one new medication to get rid of it.

They can cause problems. .as any foreign body bouncing around the system can.

I still have several "troubling" neurological systems (like randomly falling over and not remember anything and having a headache) so the doctor wants to do some more brain scans to see exactly where the lacerations are. If it's anywhere near the central brain, that's another round of treatments/therapy that will be needed.

My heart is beating fine, I had an EKG, it's just beating slower than normal which is. . .what it is. I always said I was a calm person.

I still have fatigue and pain so I am being pulled off all but three medications to see what issues are being caused as side-effects of the medication and what is related to damage/sickness. The doc would like to do a nerve test to test my pain receptors.

My blood work is looking good, other than my body storing anything I eat as fat. I am going with a strong 20lbs weight gain from my normal weight. I have a nice, fat belly. I still have to take it easy because too much "stress" will throw everything off.

The real issue is not a lot of research exists on what I am going through and Lyme co-infections like this in general. Most discussions start with "An autopsy on rats showed. . ."

By the way, two of the three meds - one is for tuberculosis the other is for leprosy. I walk into CVS coughing and scratching just to see the look on the pharmacist's face.
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At this point, Dr. Burke wanted to put in another PICC.  But my veins were starting to collapse and scar. What most people don't realize is the infection was also causing my capillaries to burst and weakening structures in my body. Getting a PICC in might not have worked,

He tried to put in a port so I could get some stuff in my easier than getting pricked every time. It was a fail. He didn't fail because he wasn't good at it - it was my body's inability to handle it. This meant my new IV treatments would be administered in the doctor's office with a normal IV.

Each spot you see is where 5 inches of needle was under my skin and not a single vein. . .These are on both sides of both my arms.

Lyme Files: Vision

I never had good vision - let's be clear. I come from a long line of bad vision. I was going to need glasses or contacts.

Lyme did ravage my one eye, though. It is far worse than my other eye - my body was fighting this fight naked and alone, it made a decision that my naturally weaker eye would get less nutrients. The muscles are weaker and my vision was always slipping

My Lyme doctor, Dr. Burke, wanted me to visit an eye doctor who specialized in Lyme related things. I never went. I go to the same eye doctor I always did.

Even though the degeneration of my eye was clearly documented throughout the years, it was just. . .what I had.

In the long run, if part of my vision loss was due to Lyme, I probably wouldn't really be able to tell.

What I see
My vision was a mass of floaters a lot of the time. I get them occasionally and everyone has gotten them - mine were just like bumper cars at an amusement park. There was no point that I didn't have floaters. They aren't harmful in themselves and they aren't unnatural in general. But having a lot can be a sign of issues.

Floaters

The other problem I had with my vision was right before I got diagnosed.

My 10,000 yard stare was not only because my body could barely function and staring blankly at a wall was just fine in my book - it was because my brain had swelled so much it was pushing against my eyeballs. This made my vision tremble and I could not focus on anything in front of me.

I could no long read because it was as if my head was rapidly shaking back and forth. The farther things were from me, the less dizzy I would get from it.

So I sat, staring at the farthest point from me one summer evening.

I remember telling my Dad - I couldn't read, things were moving too much. I just wanted to look where I wouldn't be sick. It's a state where you are use to using your eyes to find your place in the world and now the world is bouncing around. Your eyes are always weak - you can't focus on anything with them going all blurry. It's the same thing that happens when you are really tired and can't read a computer screen - it was just happening all the time.

When I got my diagnosis - Dr. Burke warned me that I could have a stroke. My brain was pushing down my spine, against my eyeballs and a stroke would be happening soon if I didn't start treatment. Even with treatment, he wasn't sure I wouldn't have one.

We weren't concerned with my vision.

The Others
There was on man who was going through treatment who did lose his vision. He was self-employed and his insurance would not cover any treatments. As a result, he paid 100% for his insurance and then 100% for the cost of his medical. When the insurance denied his need for treatment to keep his vision, Dr. Burke went to bat for him and they sued the insurance company.

Ultimately, he lost his vision.

Lyme Files: Tinnitus & Hyperacusis

Tinnitus
I had tinnitus. An endless high-pitch shrill in my ear at all time. To this day, even though it is mostly gone, I hate white noise, pink noise and make a very conscience effort to adapt to my husband's need to have a fan on while we sleep.

Wiki says:

Tinnitus is the hearing of sound when no external sound is present. While often described as a ringing, it may also sound like a clicking, hiss or roaring. Rarely, unclear voices or music are heard. The sound may be soft or loud, low pitched or high pitched and appear to be coming from one ear or both. Most of the time, it comes on gradually.In some people, the sound causes depression, anxiety or interferes with concentration.

I don't remember when it started. I do remember when I talked about it to family, they said my hearing must be so good because I am young that I can hear things.

I remember always hearing things.

Some were auditory hallucinations -  was probably 10 at the time they started. More on hallucinations later.

(I build suspense like champ!)

Tinnitus will drive you mad and it got worse and worse through treatment. Since my brother was at college, I said I would sleep in there because it must have been the air in the vents doing something or it was the sound created by the sound barrier of the highway close by.

I just heard this range of ringing all the time.

I heard it just as loud in his room but I wanted to believe so badly I didn't.

So, there it was. A constant, nagging ringing.

Even while I had  PICC hanging out of me and getting treated, I needed to tell those around me some of this was in my head. Because. . .for 10 years, everyone told me everything was in my head.

Hyperacusis
I also had Hyperacusis - and to this day still get it sometimes though much more rare and it's temporary.

Wiki says:

Hyperacusis (also spelled hyperacousis) is a health condition characterized by an increased sensitivity to certain frequency and volume ranges of sound (a collapsed tolerance to usual environmental sound). A person with severe hyperacusis has difficulty tolerating everyday sounds, some of which may seem unpleasantly or painfully loud to that person but not to others.

It would be a normal day, normal whatever and BAM, sounds hurts! Things don't get louder, I intellectually know they are not louder, but the sound hurts. It's like instead of going into your ear an you heard it, it hits all the nerves in your ears and makes you want to fold your ears back like a cat or dog or go "WHY ARE YOU TALKING SO LOUD?"

This included my own voice - my own voice hurt to hear.

I wouldn't matter how low the music/voice was, it just hurt. As if the sound hit a certain part of my inner ear or my brain and covered it in a fuzzy blanket of hurt. Your voice hurts. This music hurts.

One of the places I still get this is when talking on the phone. I have to always explain my fear of the pain coming from sound as, "I don't like to talk on the phone," because no one believed that sound could hurt. And just like the tinnitus - it seemed to unbelievable to disclose. It was just another "thing" that was "wrong" with Amanda.

So, yeah. The phone. I hate talking on the phone because it still reminds me how bad the pain was. I don't like the feeling of a phone by my ear. I still sometimes wait for stuff to click in and hurt again.

Excuses I use:

• It's hard to hear with the traffic. 
• Must be my phone. I need a new one.
• I don't know where they put the receiver.
• This phone isn't good for talking.
• I'm always in meetings, I can't always talk.
• It takes too long to access voicemail, can you text?

One time a friend called and it hurt and I told her not to call me anymore - but she didn't have texting on her phone yet. I just didn't have the words - the legit mental ability - to tell her it wasn't because I didn't want to be friends, I was just in pain.

The natural flow of Lyme destroys your relationships. Insanity might desctory relationships but ignorance always does. And no one knew about Lyme back when I was sick - and that was in 2007.

Lyme Files: Lyme Law

While laws are always changing – and few people take time to read bills and laws and all that – Lymies are actually trying to fight for laws in their states to get testing and treatment. Or just, you know, funding for research.

A lot of the government issued funds are for "awareness." Some of the funding went to the Lyme Corps. You probably don't want to Google them to hard. It's a really bad program. 

On Tuesday, Maryland Gov. Larry Hogan signed a bill into law that requires health care providers warn patients in writing:

“Your health care provider has ordered a laboratory test for the presence of Lyme disease for you. Current laboratory testing for Lyme disease can be problematic and standard laboratory tests often result in false negative and false positive results and, if done too early, you may not have produced enough antibodies to be considered positive because your immune response requires time to develop antibodies. If you are tested for Lyme disease and the results are negative, this does not necessarily mean you do not have Lyme disease. If you continue to experience unexplained symptoms, you should contact your health care provider and inquire about the appropriateness of retesting or initial or additional treatment.”

The Lyme Disease Association has a list which they keep updated as to laws in various states – check it out by going to: http://www.lymediseaseassociation.org/index.php/state-activities

But Seriously?

As someone who doesn’t like the government in my business or telling anyone what to do – I find this both awesome and horrible. There are actual laws on the book in states that goes against (the incorrect) federal treatment guidelines. 

I can do nothing but applaud the effort and the people who got these laws in the system and passed. 

But.

What happens if a doctor doesn’t say this? Nothing. Did you  know about these laws? Probably not. Did you know federal law trumps state law? 

But. 

Why can't I talk to my doctor and why can't I get the test I want and why can't we have a conversation and why can't I get treatment? Why is my body and my future dictated by a selection of bills and laws that are written under the guise of "for my own protection."

Why don't we listen to the science - ALL the science?

Who We Fight For

As a Lymie said - while this fight is for Lyme Disease and tick-borne illnesses, the path will open up so much research and get so many people looking and thinking and communicating, other illnesses and disorders will also get attention. Maybe the processes or discovery on these spirochetes will change how we treat other incurable and baffling illnesses. 

Lyme Files: The Blackouts

I had a lot of blackouts.

I didn't know what they were until I mention to Dr. Burke that I didn't remember May. That I didn't remember high school - only maybe two things. He told me about blackouts.

Most of them, I was far to apathetic to care about. So I couldn't remember what the day was or what yesterday was. Maybe one day it was Monday and the next day it was Thursday. I didn't care. Maybe it was spring or summer or fall. I kept notes and alerts on anything that mattered. If my phone didn't buzz to tell me to do something, who cares.

The first big blackout I had was when I had the PICC. I had a whole collection of memories swimming around in my brain and I think things were going well and then I was standing in my parent's kitchen.

I was suddenly in the kitchen.

Look around you for a moment and now imagine you are just standing in your kitchen. It's as if you transported there but you have no idea how you got there.

It's different than zoning out. It's not like when you are at work and the next thing you know it's lunch. "The next thing you know" it not the same as a blackout.

You can feel in your brain you have missing time and memories. When it's "the next thing you know" you still have memories even if time went faster while you were working or talking.

I had been somewhere else doing something else and now I was in the kitchen.

So, I was just in the kitchen. Beyond not knowing how I got there, I didn't know what month it was or season. I just was there in this space and time.

Sometimes I would blackout and find someone standing in front of me talking to me. Sometimes I would blackout and would spend hours trying to remember what day came after Tuesday or what month came after March.

To this day - I don't know if it is normal or not - I can't count months backwards. I sometimes am unsure when November comes. Is it after September or October? I'm not sure if March is spring or winter - because April doesn't seem to come after it.

And even when I knew it was summer, I kept having to tell myself over and over "Summer, winter, fall, spring, summer winter. . .no . . .summer, winter" - I couldn't keep the seasons straight and I didn't know how to dress right. I was always cold, anyway.

But, I was far to scared to tell anyone. I didn't need to tell them "another thing" that was wrong with me. Another thing. That's what my struggle was to those around me - another thing.

"Amanda, is this another thing due to the Lyme?"

I had to split myself into two - the person who sat with the bafflement of trying to figure out what was happening. And the person who didn't look sick.

"Is this another thing, Amanda?"

Lyme Files: Co-Infections

When I first heard about "co-infections" I though Dr. Burke was saying "cone infections" and. . I also didn't care about life.

Oh, the apathy! It was the curse of pure numbness along with the joy of pure numbness.

When he told me Lyme might not be that hard to get rid of, I probably had other infections. And so began the hardest and most brutal journey.

If you have been following my Lyme Files, you'll know no step has been less than brutal.

Lyme is not hard to get rid of with the right antibiotics administered for the right amount of time. However, in the US and other places, we don't test or treat it. Lyme is creepy and slippery - it removes antibodies from the system, it shuts down immunity like someone with AIDS, letting everything else in. When it does die, it fills your soul with toxins. But, it can be beat. So it brings in friends.

I have only met a few people with JUST Lyme. We are called Lymies, but, we have collections of infections - fungus, parasites and bacteria - that might never go away. If Lyme is hard to figure out, forget these tick-borne illnesses. Also called vector-borne illnesses because if one living creature has the infection, everyone in that area has been exposed and more than one will have it.

I had acquired:

• Babesiosis: This is also called American Malaria. It is a protozoa which lives in your blood and destroys your red blood cells.  
• Bartonella: This is also called Cat-Scratch Fever because it leaves long red scratches on your body. 
• Mycoplasma pneumoniae: Found in most cancer patients, smallest buggers ever, resistant to antibiotics due to their stealth design, not really fatal but like to eat your body. Medical science does not view chronic mycoplasma infections as being significant. Just go home. It mostly gave me a sore throat.

Lyme is hard enough to get a diagnosis, back in 2007, these co-infections had no testing and certainly no doctor knew about them because. . .well. .studies existed. Good studies. But they were silenced..

Only Lyme Literal Doctors (LLDs) knew about them. They could search your body and blood work for the signs and symptoms. They could dig through research and your own treatment information to find ways to keep your body fighting for just one more day.

I looked into some of them - overwhelmed by the list before me - and the knowledge that as the Lyme cleared up, who knew what would be waiting in my system. I survived my first month of treatment and was moving into my second round.

I remember thinking, "I'm so happy I don't have Rocky Mountain Spotted Fever (RMSF)" because that felt like the worst thing I could have.

I kept hope alive!

But More
It wasn't just other tick-borne illnesses that got into my system. Since I was on IV antibiotics for months and then oral antibiotics and also heavy rounds of  antifungals and antiparasitics, I figured I couldn't get anything new. I figured the more pain I was in, the more progress I was making.

The truth was, you can pump your body full of medications, you can herx your heart out - if your body is to exhausted to use the help, it didn't matter. I still dealt with everyday type things right down to the common cold. It was just all wrapped up in there.

These co-infections often knock out organs that would normally help launch an attack. My body was holding it together about as well as I was. I didn't talk to my body and it didn't talk to me.

Ok, I yelled at it. I pepped talked it. I learned more about anatomy and systems than I wanted to know. I begged it. I learned about probiotics before it was a thing. And when and how to take them and other supplements along with the medications.

And I gave up - a lot.

Bartonella
Bartonella, Cat-Scratch Fever. The Bart. It took me a while to remember the name of this one. I figured it would be easy - the way these little kids can rattle off complex names of cancers. It's not easy.

Bart is one of those rare, normally resolves on its own and isn't a big deal. Kids get it all the time. It's not an issue.

But, neither is Lyme. So. . .

Read about how CDC identifies new species of Bartonella in humans - I mean, probably been around for like 40 years, but, way to go CDC. The CDC also decided to proclaim that:

Bartonella has been detected in lice, ticks, fleas, sand flies, mosquitoes, wild animals and house pets. It’s suspected that ticks can transmit the disease to humans, though that has not been definitively proven. 

I didn't have an immune system to fight it off. The medical community saw me as a healthy, young person. I wasn't.

I knew I had this by these long, red, bleeding scratches on my sides and back. Mounts of hives. They are almost like rips of the skin but they do not going in the direction of the skin. It looks like a cat scratched you - hence the name.

I took pictures of them in my - oh so fashionable - Ralph Lauren boxers. Keep in mind, the doctors and even friends who I showed this  to said it was just me doing it to myself. Or I needed to get my wandering uterus under control and stop complaining about my stretch marks and workout more.

The scratches on my side actually hurt and bled. Because these lines hurt - I DID scratch myself. So, I could dismiss this as something I did to myself. After all, it was summer and my room was hot. At least, I had to say how hot my room was to explain why I was burn up, sweating and drenching my sheets.

Night sweats. They are a thing. OMG. I have never had anything like that and I thought it was normal. I always said my room was the furthers from any heating and cooling of the house. Else how could I be shaking with cold and then sweating.

I was drenched. My sheet were permanently stained with the salt and medication I sweat out. They were yellow and brown all the way to the mattress. Anyone who saw my stripped mattress agreed it was disgusting. I mean, it was a strain. I guess not everyone has human sized sweat stains.

It was uncomfortable. I wondered if I fell asleep drunk in a bathrub? Nope. Just sick.

And then Burke told me these were symptoms. And these symptoms were going to get worse and more complex before it was done.

I had so many things going wrong that I don't know what was because of the Bartonella, really. Everything causes pain and "flu-like" symptoms. 'Cept one thing.

The Rage.

Rage.

I had the Bartonella rage.

Holla at your Lymie sister if you know what I mean!

I don't know the words I can use to explain. I can tell you what it looks like - it looks like Criminal Minds. It looks like Law & Order. It looks like those evil, nameless, one-sided characters who butcher humanity and keep you up late at night.

Explosive. Homicide. Ugly. Unrelenting. Rage.

As the Bartonella died inside me, leaving all the broke, dead remains of the infections throughout my infection-ravaged body, it mixed with everything and. . .I never hated everything and anything so much in my life.

. . .we hope to raise the possibility that patients infected with Bartonella can have a variety of mental health symptom. . 

What I can tell you about the rage - I never felt something like that. I only have the memory of how it felt inside me, I can't make myself feel that way again. I was standing in my living room wanting to fight, wanting to pick a fight, be a fight.

I firmly believe there are many people in psyc wards who have Bartonella. Because I lived every single one of those aggressive mental problems without a single reason. If I had lived with someone else, I am sure I would have killed him. I would have taken a knife from the block, walked to them and stabbed them again and again.

If I was not so exhausted, I would have gotten in my car and killed anyone I saw.

If I had not been told my whole life, "it's just in your head" and that I needed to "get over it" maybe I wouldn't have been able to stand there for hours in my rage doing nothing. If I wasn't run down with fatigue and pill counting - I would have done it.

I am so lucky.

I cannot communicate to the world how lucky I was because everything inside me wanted to murder. A child. A baby. A woman. A man. My parents. My friends. Strangers. If I had been around another person, if I had been able to walk down the stairs without being so out of breath - I would have.

And I mean. . I came really close. I had plans.

Good thing it was only in my head.

Ultimately, Bart mimicked the range of horrors I already had. Flu-like or. .whatever numbing term is used to describe Hell.

Babesiosis
My secret killer. Babesiosis. The Babes. Babesia. If you don't know anything about Protozoas - just do some friendly reading. They are actually smart little entities.

During this whole treatment process, this illness was the worst. Only seen as rare, often having no symptoms and easy to treat in the medical community, it almost killed me.

It still is inside me, lurking. It is in remission. It is not cured.

Check out this "Monsters Inside Me" about Babesiosis - this is Episode 7, you can probably check out the whole story of Brittany Goff.

I relapsed on Babesiosis five times because it is smart and avoids things. I was on IV stuff It was the only illness Dr. Burke told me I had to make a choice about - I either treated the symptoms and got on with my life or I tried to destroy it all, possibly unsuccessfully.

I was on two forms of IV therapy for the Babes.

When the protozoa reproduces, and all at once, millions of your red blood cells explode all at once and cause anemia. It feels like you are drowning - you body is screaming to get oxygen. You are in a gas chamber breathing but your lungs can't process the air. Deep, full breaths do nothing. You are left begging for air.

It's panic inducting. Those two words don't even come close to explaining it, though.

My legs would just fall out from under me, my head would rush into darkness and sparks, and I would panic. It wasn't an anxiety attack - it was actual, real, honest, fear and every signal my body sent to me that it was dying.

I have had panic attacks and anxiety episodes and they are slightly better than the Babes. Because they end. However horrible the attack it, it ends. Babes just breaks you down because it is it's own being trying to live in a host. It's not an invisible chemical reaction of mental illness - it is a living, breathing, breeding thing.

I had to teach myself not to panic.

When it hit, suddenly and whenever. I had to stay calm and breath normally - panting did nothing as much as my body craved it. I would sit, be still. Count my heat beats. I knew I was good at it when I actually got mad at the feeling of drowning.

I always had some water nearby to both help me breath normally and to make sure I wasn't dehydrated. I kept the water cold to give me a sensation to focus on. At the worst, it made me feel better.

How long did this feeling last, you might ask, Minutes? House? The feeling would last for weeks along with fatigue - basically until body could replace the red blood cells I lost. I knew I was getting better when I could reduce the amount of breaks I needed to talk climbing the stairs in our house.

We have 13 stairs and I normally climbing up on all fours and taking 3 breaks. Just hanging out on the stairs until I had the energy to move up a few more. Eventually I could climb up with no breaks. Until the next baby-babes-boom.

I wouldn't say I learned things by sitting on the stairs. I do know areas of the house I don't think other people do.

I did get this awesome reaction from my medication I started talking for it. I didn't notice until I sat down on the toilet and went - Fiddlesticks.

When I mentioned I also had sores in my mouth - then I realized side-effects were REAL things.

Babes & Obsessive Compulsive Disorder (OCD)
Babesiosis gave me real insight into Obsessive Compulsive Disorder (OCD). The strain I had caused ODC and I spent 10 hours straight of my life walking back and forth from my sofa trying to get a picture frame just right on my TV stand.

OCD is a joke or excuse people use when they don't know what it feels like. And I was as guilty as anyone else to joke about "omg, my OCD" when really I wanted to say, "I'm being passive-aggressive dick to you."

What it feels like is the entire world is ending, everything you love is being tortured and killed in the most horrible way. Panic. Hell. Zombies. Wild fire. The total wrath of God is coming an only you know about it. Everything is your fault, everything is up to you - and all you have to do is this one thing.

Again.

Again.

Again.

Again.

See, when you do the thing your OCD is telling you, you are overwhelmed with the most perfect peace and calm and love and joy and everything fuzzy and warm like you have never felt before. It is better than orgasm. It is your best friend, biggest love all wrapped up in your favorite food during the most perfect day.

Then it starts again. Everything horrible until you do this thing. So you do it, again.

OCD impacts your life in a super-negative way. You can't function. I couldn't function for 8 whole hours. I could eat, I couldn't sleep, I couldn't pee. I had to save the world.

To be honest, I probably had slight OCD tendencies before Babesiosis - I am a compulsive lip bitter but other than cut and bleeding lips and an inability to actually stop - it doesn't prevent me from doing anything.

I am super lucky, there.

The thought-process connection is there, but, it doesn't stop me from doing anything - including drinking salt rimmed cocktails. OCD is debilitating. Lip biting is just weird.

Babesiosis has left this imprint on my brain so for a whole year, I had to wash my hands obsessively.

I didn't feel unclean - I actually eat food off the floor and do all sorts of stuff the movies say people with OCD can't do.

I had what felt like anxiety gloves. Fuzzy, invisible gloves I had to wash off.

I washed them when I was sad. When I was happy. When I was anxious. Sometimes I would touch something wrong during the whole ritual and have to start over. A session could last about an hour. And sometimes I would have to do them over again even if I did it perfectly because it didn't feel right.

Babes also attacked my bladder - possibly the Bart, as well. I would feel like I had to pee bad. When I go to the bathroom, I couldn't pee. And I couldn't empty my bladder when I did start peeing. Babes leads to an increased risk of bladder cancer.

I really enjoy peeing now, that's for sure.

Returning to Dr. Walker
At some point, I got the flu when I was being actively treated for Babesiosis. I went to my family doctor, Dr. Walker for a Z-pack. I would have gone to Burke, but, waiting times to see him were 10+ hours for an appointment.

People were just so very sick and he needed to take his time with them. It was the same when I would show up - he never rushed anyone. He read everything, he questioned everything.

Since I was in treatment, I told Dr. Walker what drugs I was on because I didn't need her to give me something that I couldn't take because of some bad interaction. My mother said not to breathe a word of my treatment - because Dr. Burke could lose his licenses or worse if Walker got too concerned.

But, I had to tell her. What was she going to do? She certainly didn't care enough to listen to me before, why would now be some revelation of rescue?

She looked them up and questioned why I was on these drugs. After all - as a patient, it is also my fault if a doctor doesn't do what another doctor would do. Like, I should know better. I have been accused of many things - "knowing better" has never been one of them.

She had heard of Babesiosis, which I found odd. I was assuming she knew nothing of it - so that was a nice surprise. Then she said, "Oh, you have been traveling?"

"No. I've been very sick with Lyme."

"Oh, everyone gets Lyme these days," she dismissed the sum total of my critical illness, my struggle, my fears, my pain - the sum told of half my life. In fact, she didn't even remember how she tested me and said I didn't have it. Maybe she thought I picked it up after I left her office in 1998.

Then she said: "But you can't have Babesiosis, it only exists on Block Island."

If I could feel crushed - I think I would have. But Lyme had already stolen my voice.

Lyme Files: Herxing

If someone has or had Lyme, a funny thing to say is, “Hey, you ever herx?”

And we laugh. And laugh. And cry. And choke on our own spit. And they say, "Who are you, again? Why were you asking about turtle flower dragon puff? Hi."

Does this herxing make me look sick?

It’s not funny at all, actually. Only in the way when stuff is really, really bad it’s so ridiculous and you are like lolz, kill me! LOLZ!

After suffering all the miserable effects of being sick with tick-borne illnesses, after being told a million times how sad, lazy, horrible, useless, attention-seeking and crazy you are. . .you get hooked up for your first treatment.

Sometimes that’s IV, as it was in my case, or oral medications.

(Slight lie, the few days before I got my PICC in, I was on strong oral antibiotics).

For a moment, you get high. I think you get high. I never took drugs that weren't perscribed -

Funny story: When I was on oral antibiotics, they were they huge horse-pill white, chalky things. I took two a day. Well, I forgot what I took on the second day so I saw that the bottle had, let's say, 30 pills. Then I was like "I have been on these for one day" so I spilled out all the pills and counted. But, I normally forgot what I was counting well before 30. Or how many days I had been taking them. Or how many I needed. Or how to subtract. Needless to say, I took four or something in one day. My Dad finally counted them out for me. That's neuro-Lyme.

Anyhow, then someone tells you about the Jarisch–Herxheimer Reaction. Hopefully before your first round of treatment. If you can remember.

The official definition from Wiki states:

The Jarisch–Herxheimer reaction is a reaction to endotoxin-like products released by the death of harmful microorganisms within the body during antibiotic treatment.

What happens is you flood your system with the stuff that is going to kill the bacteria or parasites or fungus. And they die! Victory!

Now your body is flooded with dead, toxic bits and pieces of bacteria, parasites and fungus. Some of it is just like junk in your body, some of it legit turns into arsenic and you can trigger a heavy mental test.

Some of the stuff goes cystic, which means you can't kill them. They are just these balls of protein that your body can't break down and the medication can't get into to kill. They can stay like this for days to years. In fact, in autopsies of rats, they were found in the liver still waiting to come out.

Do I look sick yet?

The more die-off, the worse you are going to feel and the harder your body has to work to get all the dead junk out.

You just feel worse. If you didn't feel bad, you will be bedridden to vomiting to full on mental breakdown. Sometimes I felt drunk - and I know some people said that didn't sound too bad, but, just imaging feeling horrible and the world is spinning 24/7.

During a herx is when your kidneys, spleen and liver can fail because they are under attack by the bad stuff AND now have to work harder to get these additional toxins from your system. Don't worry - there are weekly or bi-weekly blood tests for this. I was told to never let anyone take blood from my PICC because if you did it wrong, it could collapse or clot. So, that's extra needles for me.

Herxing always happens. No one can say they have not felt it.

That includes you!

In fact, it happens when you are sick with something - let's say strep throat - and you take medication. You hit that point where you feel the worst ever and then you start to feel better. You normally feel worse after that first dose or so because you are fighting and infection and a clean-up. Now, just imagine it's so bad your body is dying faster than it was dying before.

I had puking mostly during the first round and due to specific medications  - I am a master of quiet puking. Since I wasn't into eating a lot, I also dry-heaved. I'm sure someone who knew me has seen me cough, gag and heave a few times. That's a herx reaction.

I was dizzy and my body felt like it weight 500 tons. I lost my fine motor control - I was so frustrated at the computer because I couldn't get the mouse in the right place. I also got very itchy and felt the darkest, deepest, soul-crushing weight of completely despair and inability to function.

Herxing is not just physical - it is emotional. You have to learn to divide yourself from it. That's why one time I was puking (like, puke from my nose, puking) after the most burning, watery diarrhea I ever had and sobbing under this unmanageable weight of emotional annihilation and I got a whiff of the toilet freshener I had just put in the bowl that morning as I was flushing, and I yelled to my boyfriend at the time, "This is the best smelling toilet ever!"

He told me, "That's great, just let me know when you want to go to the hospital."

Lymies do not go to the hospital. We don't get treatment there, we get lectures about why we are doing this to ourselves. We are told how we feel bad because long-term antibiotics are doing it and we need to stop this nonsense and just get out more. I mean, it is the antibiotics doing it and it is in my head.

*Two thumbs up medical community*

Some Lymies have seizures, pass out or lose control of their bowels. You never know what is going to be the worst of the herx - it's a magical surprise that can happen at anytime on treatment.


Remember when I wrote sometime the stuff goes cystic? You can herx when it comes out and you still have medication in your system.

It's random.

This one time, I'm at work, trying to remember what a pencil was (I worked at a great and oddly very forgiving place) and BAM. . .time to puke and debate committing suicide.

Might have been a few hours before that I took a pill or infusion. Hopefully not a pill. I choked my puke down if it was a pill - I did know how long it had to stay in my tummy.

In retrospect - I'm pretty sure the drug was in my system when I felt like puking. Revelations come daily for years after, folks.

Choice of Lyme
Herxing is always horrible, it makes you feel worse than you ever thought you can feel AND it can be deadly. Welcome to treatment. We hope you survive.

The statement, “It’s going to get worse before it gets better” might have been invented by someone herxing. Every treatment, every upping of meds, every new med will result in you being worse than you were before – which was already the worse you ever felt.

It can be amazing what you can survive. And that's not always a positive thought.

This is why sometimes Lymies are chronic by choice. Your body may not be able to handle the die-off, it might lead to organ failure or other stuff.

One of the reasons the CDC seems to be hanging on to the outdated guidelines is because treatment can be really bad and it's better to die slowly than risk hurting more. Then they also stated 30 days of antibiotics - TOPS - cures Lyme and you can't get any other infections and any symptoms after that is just in your head because you can't have any more infection.

You know, like when you have cancer and get chemo underground because chemo can be really bad and people should have to go through that. And, by the way, chronic cancer doesn't exist. You just need a pill and to think yourself better.

Nothing against people with cancer - it just a statement that is so weird when you put cancer in there. But when you put "Lyme" or "tick-borne illness" it sounds. . .equally ridiculous. No one would ever tell a cancer patient s/he cannot get treatment because the type of cancer doesn't exist in the country or state the person is from.

Anyhow. you might not be able to handle it as a person - your ability as a human to cope with the horror and misery alone without the ability to connect to anyone or talk about it can be a lot.

I was given the choice more than once to continue treatment or just manage the symptoms and make peace with having creatures and parasites living in my body.

You don't get take back the choice - because if you start and stop too many times, your parasites will become immune to the drugs, then you will have NO choice but to manage symptoms.

My choice was to treat. Not because I was heroic or brave or incredible or a warrior - it was simply because I knew no other life than horror and pain. And I hoped this round would kill me, 'cause I sure felt really close to dying.

I herxed for five years.

It Always Gets Too Bad
Herxing hit me bad a few times. I took some weekends off from treatment under doctor's orders. I also had to stop treatments a few times for a week or month or so to give my organs time to process and heal.

Minutes before herxing

For oral medications, I had 20-30 minutes. I would yell to my coworkers, “Took a pill, you got 20 minutes of me being competent.” Oral medical mattered less when I was on IV stuff. I was on both for a while – for different things. 

For IV, it was sometimes a feeling of awesomeness followed by the herx.  

My thyroid stopped working twice - I just took more medications to replace what it wasn't doing so I could continue treatment.

My immune system crashed once - dropping down to almost non-functioning.

My spleen almost exploded. I don't know how that would feel or what that would look like, but, I had to take extra medications to protect my spleen and it swelled and rubbed on my ribs.

I took medication with chocolate, because I already hated it. I still can't really handle peanut butter.

If only I looked as sick as this all sound, huh? Sadly, I did not look sick so it made everything I went through easier for people to deal with and discount.

Lyme Files: Pain

Lymies talk about pain. Sure, we all have been in pain. So, I will do my best to explain what the pain is like.

IS LIKE.

The damage to my brain and my organs has left me with chronic pain. I have pain to this day.

Everyday.

I can cope with it. I don't take painkillers or do much. This is because for 15 years nothing worked. You just cope.

Writing this right now, I have burning across my face and the tips of my shoulders are numb. It's my neuropathy - a friendly reminder that Hell is real.

To explain pain to someone, you always need to start with a common trauma. Different people feel pain differently. Sometimes people try to say things aren't that bad - but we all feel pain. I will do my best to describe and find common ground for what it felt like.

What is (not) funny is a lot of Lymies describe the pain in the same way.

Here I was one month before getting my diagnosis and starting treatment - which all happened in June 2007. I made it to the Rocky statue. I couldn't stand like most people you will see posing by good ol' Rocky.

I will say, I am a super connoisseur of pain. As you read these words you have to think more than just the pain - you have to think of the texture, the weight and the motions of it. You have to remember this pain does not go away. It is all happening at once.

I would sometimes tell women it's like having the worst cramps you ever had ALL over you body and not just in your uterus. The actually cramps - not all the other period junk. Just the cramps - all over. If you have ever throw up and been crippled by menstruation cramps. . .yep, it's like that. But all over your body.

I would tell men it was like the worst flu you ever had in your life. But all your symptoms are concentrated on your skin and in your bones and muscles. That flu ache - make it 100-times worse, all over, saturate it with intensity and live that way for 15 years.

First - Painkillers
I was never on painkillers for a few reasons. . .

I was taking a lot of medications. Maybe 20 at a time, and throwing in something to make me comfortable was not worth the risk of other interactions or side effects. "Quality of life" was often not the biggest concern. Treatment and surviving is not about pain, it is about living. It doesn't matter how much you hurt, it only matters you are still alive.

I would have needed more and more and stronger and stronger stuff and I didn't want to become depended on something. Nor did my family.

Remember, too, I had tick-borne illnesses. Or rather - I had "things that don't exist." You cannot give someone with "things that don't exist" painkillers.

If I had cancer or a mangled bone, I could. For tick-borne illnesses, you get nothing.

In fact, many mainstream doctors suggest not getting treatment because it is more painful than the disease. That you don't have. Strong painkillers draw attention to the Lyme Literate Doctor (LLD) and that might cause the doctor to be unable to practice - so, you just gotta deal.

Also, I was out of it, mentally. I was so use to being in pain all the time, I was apathetic. Lymies have the "stare" - your brain just shuts off and everything gets harder to access in your brain from emotions to thoughts to comprehension of surrounds and the universe.

If I hadn't been working (Oh yes, I went to work everyday) and didn't have people forcing me to engage in life, I would have been staring at a wall for 23 hours a day. I would have forgotten what I was doing in that 24 hour.

Pain was just part of life. It gets easier in some ways, you just don't talk about it because. . .why? Why bother? It doesn't make it better and it takes so much energy to explain. Sometimes pain would be bad in one place in your body then it would move in quality or size - that was the best thing ever. When one part of you got a break. You were always in pain, just. .different qualities and textures.

The Don't Touch Me
I use to think people were really rough with me. I also thought I was just a pansy. People hug and rub on each other all the time and enjoy it. I was such a weakling, I couldn't handle simple touch.

The effects of 10 years of, "It's all in your head" and "it's all your fault" never go away even after you get a diagnosis and are in treatment.

My Dad would often come by me and my brother and give us a little shoulder grab and rub. It was a nice thing, like a quick hug because human like physical touch. I would cringe and just get through it. But, I know it was affection. Hugs hurt so bad.

I was and am not affectionate because it just HURT. And it hurt for days or week after contact. I did finally tell my Dad it hurt - and he used the softest touch but it still hurt. I still wanted contact with people but they could tell how I was repulsed. To this day, people believe me to be highly not-affectionate - because in four years I have not been able to completely undo the thought process of, "hang on, this is going to hurt!"

This extends to scratching myself, as well. Every have an itch? You probably just scratch it. I had an itch and I had to weight the pros and cons - itch it and possibly trigger a week long bout of pain throughout my body or let it go. The catch is, sometimes the itch would turn into burning and a week long bout of pain.

I learned I had to endure this quietly because people don't believe you or tell you to suck it up. It's not their fault - they have no idea what it's like.

That's why I am blogging.

Clothes & Skin
Clothes hurt. My bra was made of knife blades that were cutting into my bones. Once the blades were in the bone of my rib or spine, they would just cut away at my skin and gnaw deeper into the marrow with every movement. T

he eye hooks in the back of my bra - I felt those like little knives.

Clothes hurt. Jean pockets were extra pain and bulk. Elastic on socks was always too tight. My toes were numb from too-tight shoes. The tops of my feet hurt from too thin shoes. I didn't have enough padding on my shoes, so my bones rattled in pain with every step.

Naked - sure! Nope.

I would tell my Mom, "The weight of my skin hurts." That was the best way to start. My own body hurt my own body. My skin were epic gym mats wrapped around my body, crushing everything under it.

A simple flick of my wrist or touch would set forth a month long struggle of pain that moved up and down the point of contact to every cell.

My doctor once touched me and I said "ow" and he showed me how hard he had touched me. It was no more than a puppy-paw weight. It was nothing. It felt like a full on punch.

This was my daily amount of pain.

When I was a child, I use to wake up stiff and in pain. I hated it but I told myself I must be a superhero at night - I must somehow leave my bed and run around the world fighting evil and then when I come back, I have no memory. That's why it always felt like I was tired and my body felt full of bruises.

I was 9 and it was 1989 when I doodled about that. When my teachers told me how I needed to focus more. Apply more. Be smarter. I just wasn't. . .getting it.

The Crowbar
One summer, once I was quite better, I went fishing with my Dad and Uncle. My Uncle was moving a cinder-block, and it ended up falling and cutting down the front of his leg. I remember by Dad's reaction, turning away and cringing. And I looked at my Uncle, writhing at having this cement block having sliced down his shin. . .and I was like, "Does that hurt?"

That was not a good reaction. I feel bad about that reaction. I feel bad that I felt like my Uncle and Dad needed to suck it up and help get stuff together and not dick around. Sorry, guys.

I would have pain on the front of my lower legs. It felt like someone had taken a crowbar and with as much force as possible, hit my legs over and over. It felt like the bones were splintering and breaking. Someone once said it sounded like shin-splints but since I never ran or did anything. .well. .nothing else would have caused that amount of pain.

I was ok with this pain because it was centralized on the bone. It was a blunt pain. It was an appendage, my legs. It was easy to deal with. I could cope best with this type of pain because it didn't diffuse or melt into other parts of my body. That pain was there or not.

The Butter Knife
I would get pain in my back - once said to be bursitis.

It felt like someone had taken a butter knife and was trying to lift my scapula from the rest of my body.

Like when you try to force open an oyster or clam.

You jam that knife in between and rattle it around and yank it and then use as much leverage as possible to get it up. But, my bones won't give so I just have this knife in my back. And it's UNDER the bone so I can't get any relief because the bone is blocking any heat or cold.

This was bad. The butter knife moves around a lot back there, in both shoulders. I told myself when it was happening, I just had to get through maybe three days of it. Then something else would hurt a lot more and that would be relief.

The Beam Drop
Your hip is a ball-and-socket joint, did you know that? I felt the ball grind into the socket. The bone felt rough, like someone pounded nails through my hip bone so the ball part of my leg were being ground into these nails.

The top of my hip felt as if someone had taken a bar of metal and dropped it on the top.

BAM!

Right on the top of my hip bone. It would seep the rest of my pelvis. Before I was diagnosed, I use to think I was one of those rare women would could feel themselves ovulating because of the pain.

It really sucked. I would often have it worse in one hip than the other hip. So it was a welcomed break when it adjusted.

Thanks, WiseGeek.com for this photo and article on What is Beam Deflection.

The Shot Gun Blast
I had this single point of very sharp pain in the front of my chest in my shoulder. As if someone touched you with the point of their finger. Right? So, very sharp pain there and then the entire back of me would feel as if it had been blown out. It was as if a bullet had entered through my shoulder and took out my entire shoulder, ribs and back. It was raw, hot and screaming.

This was also really bad, and a bad day was Shot Gun Blast with Butter Knife. You'd think they couldn't go together. .and yet.

The Acid Cotton or Plasma Ball
Under my skin and IN my bones I would feel pain.

*shutter*

I first thought of it as if you took some fluffy cotton but the cotton was acid. I sometimes called this the "fuzzy pain." It was quite burny and sharp - as if this fluffy cotton was floating inside my bones and when the little flecks of fuzz touched the inside of my bones, it would burn and spark and hurt.

When I got a little more brain back and re-learned what a plasma ball was - that was what it was. Where those little tendrils hit - PAIN.

This was the most annoying pain. It hurt that the cotton was floating there - but I never knew when it would burn against the inside of my bone and I never knew for how long. It would move up and down my bones, under my skin.

To this day, when I see those plasma balls, I cringe. Ick. thanks Apogeekits.com for the picture.

Fluid Pain
For my knees, I got a lot of pain in the sides of my knees and the back. It felt as if they were filled with acid - like a bag of low-level acid.

It didn't burn, it just slowly hurt and it took up so much room my knee felt unstable because everything was pushing on the tendons.

I did have fluid build up in my knees. You could feel the pocket of it behind my knee and that physically hurt. I did have enough inflammation to cause fluid build up - so, there was physically something there. Not much could be done about that.

Neuropathy 
I still have neuropathy from all the illness and treatment. My nerves and brain are damaged and part of the manifestation is pain.

I originally had the numbness. I would amuse and/or wonder what was wrong when I would shove push-pins into the back of my shoulder and feel nothing. I actually had someone else do it to me once. I felt nothing. Whole patches of my skin and underlining body were numb (minus the pains above).


The first time I had the burning, it was winter. Thinking I was actually burning, I ran outside and lay in the snow. I was freezing and shaking and numb and through all of that, I was on fire. My skin felt as if it was covered in burning oil.

My muscles then went weak and the brain fog came on and. . .you just keep going on with your life.

It always starts the same, like a bad sunburn. Imagine the worst sunburn you had just cresting across your face. Then it just gets worse and worse.

Or if you burn yourself - which I have done on the oven plenty of time -  when you get the mark. Hot, then maybe nothing for a minute, then it starts slow and smooth and then just keeps spreading over your skin and melts into your muscles like a wildfire of pain.

Or when you jump in a hot shower and it is WAY to hot and you scream and leap away - it's the moment you scream that I lived in.

Currently on fire

I lived (and live) with this screaming, burning pain sitting on my skin for however long it takes.

I still get it a couple weeks a month. Sometimes if you see me, I'm just sitting there with acid flowing over my skin. Nothing I can really do about it. What I do try to do is move because it can lead to my muscles tightening and that's just double problems.

I will say hot tubs - they are fantastic! I back when I first got into a couple when I was sicker, I got maybe 20 minutes of pain-freeness from a very hot soak. But, it's a wonderful 20 minutes. Heat therapy for chronic pain is a thing that should be embraced!

I think the crappiest thing about neuropathy, I am not actually hot. As I learned the first time, I can use this like a super power to deal with something very cold.

After about an hour of intense burning, I get the fatigue. It's exhausting feeling this pain - I'm sure my body is trying to fix it. You just have to endure it. And pretend everything is ok.

Lyme is the great imitator, and it makes great imitators out of us all. At least, today, I do not deal with this everyday. Normally only a few weeks a month at most. And I can have whole months off. Right now, writing this. . .it's on like donkey kong across my face and across my back.

As with all things with Lyme - you need to have a split mind. You need to have to save part of your mind to live a normal life, to make plausible excuses for why you can't do things to the outside world and pulling it together to be in that world. Then you  have the other part of your brain doing everything it can to cope with the illness and treatment.

Lyme Files: Lyme Disease Challenge

Now with extra insanity!

This is me, doing the Lyme Disease Challenge - yeah, I'm doing my part to take a bite out of Lyme!

You should do it!

You can load your video or picture on social media of your choice and call out someone to also take a bite out of Lyme! I called out strangers on Twitter and people I hardly talk to on Facebook because I feel like - if we are friends. . .right? That means something.

I also forced a baby, 5-year-old and my BFF to do it. One out of three of them was drunk at the time. You know what goes really great with lime? Gin!

Here are the details about the challenge in a simple graphic:

And here is the official video of me really thinking a lime was going to taste a lot different. I really have no idea why.  

"Where's my gin?!"\

If you need some Lyme facts - check out all my Lyme posts at The Lyme Files. Because I forgot that part. Totally. Forgot. Maybe you should share a fact first.

YES. Share the fact FIRST.