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.