Another Lyme Warrior

Mckenna is a friend I met on Facebook through mutual friends. She was in the process of being diagnosed when I met up with her for lunch. I was amazed at the differences in our symptoms but also similarities. Her symptoms were more neurological, but she was also having depression and anxiety symptoms. She has experienced much more denial with Lyme Disease than I have, so I have asked her to share her story. She is a Lyme Warrior.

Hi, my name is Makenna. I have Lyme disease.

Although there are many, one of the most difficult aspects of this illness that has most presently been on my mind is how darn controversial it all is. Never in my life did I imagine I would be the victim of a chronic illness, and especially not of one where there are those who don't acknowledge its existence and rather tell me that it's all in my head or that I'm faking it all for attention. 

I began experiencing symptoms from my Lyme disease mid-June, 2014. (My symptoms are mostly neurological - twitching and spasms originating in my left arm and leg that resemble symptoms of epilepsy and MS.) We went to doctor after doctor, took test after test, and nothing. Since no one could figure out what was wrong with me, my primary physician figured that  I had Conversion Disorder, where too much stress and anxiety manifest itself physically - a disorder that can be cured with therapy and the right medication. I spent months on this "treatment" with no improvements, because it wasn't all in my head.

I now have a much greater understanding of my disease and how to handle my symptoms, but before we had a diagnosis, we really hadn't a clue the best way to respond. I now know that when I have a seizure or have a difficult time breathing that they are all symptoms of my Lyme disease that will eventually pass on their own. Before my diagnosis, however, an episode of seizures or breathing problems often brought us straight to the ER, not knowing what else to do. When they couldn't find anything wrong, they again would dismiss me with instructions to see a therapist, settling that it was all in my head. Right after my husband and I started looking into Lyme disease, I had another episode that landed me in the ER. When the ER doctor finally got in to check up on me and after Sam explained about my possible diagnosis of Lyme, the doctor pulled Sam outside of the room and told him that I was crazy. He said that Lyme disease isn't real, that I was just having an anxiety attack, and that I was just faking the seizures to get attention.

Even after I was diagnosed and my illness finally began improving with the treatment, I ran into controversies. My sweet sister and brother-in-law have the best of intentions, but they read some anti-Lyme information on the internet and were concerned that my method of treatment was bad and dangerous to my health. When I told them that my symptoms have actually been improving with my treatment, they suggested that it could be due to a placebo effect. I know they didn't mean to, but that really hurt me because that once again suggests that all of this is just in my head. I've never been one to enjoy the spotlight much and feel I can be credited as a an honest, reliable person. With that, you can believe that I'm not making this up or faking anything for attention. 

Lyme is not in my head, it is a real life disease that is doing things to my body. I just pray that someday, that fact will be universally known.

-The Lyme Warriors

Read more about this Lyme Warriors story on her blog at http://makennawhitworth.blogspot.com/2015/02/where-in-world-did-this-come-from.html?m=1

The ER incident

I have started this post over and over again since I first started this blog. I have tried writing it in first person, third person, 5th person (ok not really), but a lot has held me back from telling me the full story. First I had PTSD over it so I had to get therapy help for that... Then I just found myself relieving it everytime I tried. Then I was blaming myself and saying "if I would have said this, or not done this, I could have made it... But I see now, with trying to write my full story, and "The ER Incident" specifically, I can't do anymore than explain the facts. What I felt. So I dig out my old mission journals and I'll quote them a lot. I also hope to get another point of view on this story in the future from a seperate party, to gain perspective, for a different post though because this on is going to be long. But here it goes...

5/15/14
"Today has been one of those bad days... I couldn't fight to be happy today like I usually can. I was fighting just to function, to go and not drop. I broke down crying 4 times today! Our last lesson of the day was going to be hard, I hate myself for telling Sister Eames that I didn't think I could go into the lesson, I hadn't had the spirit all day and there was no way we could teach the next lesson without it.  But we prayed for strength and I felt the spirit! We had a great lesson, but now I'm exhausted."

5/17/14
"So last night Sister Eames and I stayed up until 12:40ish AM talking... I finally found myself opening up and telling her that I have self harm thoughts a lot of the time. She told me I needed to tell president right away. She was scared, and I started to panic because I realized that I had suddenly put a huge load on her and she was upset. Then I noticed today that once I said it out loud it became real to me and I felt sick inside and gross. Last night we prayed together and I bawled like a baby, she gave me a hug... I am just trying to not be afraid now because I know fear is the opposite of faith, but I called Sister Holm, and she told me to call my LDS counselor, I don't have to go home! I guess that was my biggest worry. But now my biggest worry is my thoughts. Nobody should be afraid of their own thoughts but I am..."

5/18/14
"My counselor says to go see Dr. Mendez tomorrow (there goes my pday nap), she thinks it just means I need more of the stupid antidepressant. I have noticed, since voicing aloud my harmful thoughts, that they have gotten worse, more dark and harmful. But the worst part is it makes me act out. It is making me go crazy, and the worst thing that is killing me is it is effecting Sister Eames, I know she wants to help but I feel like I am a lost cause right now. I am amazed at how kind and loving she is, and I don't deserve it at all... I mean, she is still talking to me this morning after I yelled at her and accused her of making me fat because she was making me take my antidepressants.... Just that fact alone shows how amazing and loving she truly is, I don't deserve to be her companion. She doesn't deserve to be in this situation. I hate myself when I get mad at her, for making me take something that is helping me stay out here. But for some reason I just loath the idea of anti depressants...Because I keep saying I'm not depressed! I am not a depressed person! I can't accept that. Maybe I need to repent, and get rid of my pride. But I am so grateful for Sister Eames. I hate myself for being such a burden to her. I don't know what I would do without her."

5/19/14
"If I could swear about today I would. And I know sister Eames would too, it was a 'blue dress day' basically it means it's p-day, we have no motivation to get ready, so we both have these blue dresses that are more casual and comfortable, we laugh about it but today when we both came out wearing it we had a good hard laugh, it felt good! But I don't think Sister Eames will ever wear her blue dress ever again. It will remind her of how awful today has been. #worstpdayever..."

And this is where I start to tell my story, I'll quote or paraphrase my journal for the rest, but also mostly from memory... I've relived it in my dreams so many months that I remember it like it happened yesterday it's so vivid!

We woke up did our morning pday routine, in our blue pday dresses, I lied about my email home (again) and told some great stories that happened, but left out the details of my night horrors and my emotional state of wanting to self harm.  Then we headed to Carolina Pinea Regional Medical Center in Hartsville South Carolina. We get into see Dr Mendez and I remember having the hardest time talking to her. The first time I went to her with my other companion, she asked if I was in a "partnership" and how it was going. She couldn't understand that the depression and anxiety was outside of the stress of being on a mission. She didn't know because like most people in the south, she wasn't a member!

So on this visit I tried to be very clear with her, I remember praying in my heart that she would understand and be able to help me. I told her that I was beginning to have self harm thoughts, that I had no intentions to act on them, but that it was starting to become a constant idea that stayed on my mind. I remember Dr. Mendez suggesting I go immediately to the ER (it was on the other side of the building since her office was connected to the hospital). Dr Mendez explained that going to the ER is a procedure she has to do when people come to her like this. She told me it was my best option to get better. And that since I was a liability to myself she was not allowed to let me go. Not really feeling reassured, she said she would go get a nurse to walk us down to the ER. I remember feeling confused, and overwhelmed, why the ER? Dr Mendez brought back in this huge male nurse with tattoos up his arms, I was like, this is the guy taking us to the ER? I was even more confused. Then Dr Mendez asks for my counsellors number so she can call her and ask her some things and we start walking to the ER... 

When I now think back on this time, If that guy wasn't escorting us we would have been able to talk things out, figure out what we needed to do. But as we stepped onto the Elevator the nurse mentioned that the day before the same elevator got stuck with people in it for a good 4 hours. I remember feeling extra sick because I hate elevators. It wasn't until later that my companion told me that she was thinking of something more along the lines of... "We are so breaking rules being alone in this elevator with this huge dude, if it breaks with us and him in here we are so dead." 

As we were walking into the ER I was feeling more and more gross. Something was off. Then the phone buzzed, Sister Eames answered it and the male nurse told us to wait and mumbled about trying to find room 9 for me. Sister Eames was talking on the phone and I was just staring at all the people who were here for physical injuries. I remember thinking, "what can the ER do for me? What I have is a problem with my mental and emotional well being." I can't go to the ER for something like this.

Sister Eames was reassuring Sister Holm something on the phone and it snapped me back into the moment. She hung up as the nurse came back to get us, he tells us we have to walk around and find room 9 with him because he has no idea where it is. Sister Eames whispers something about clarifying with Sister Holm about going from the Dr to the ER. She looked worried thought, she wanted to say more, there was more said on the phone, but as we were wandering the huge nurse finally said "ah here is room 9..."

I'll never forget it. Not in a million years, I still see it in my dreams. It was a small dimly lit white room. It was completely empty, except for a blue mat raised a couple inches off the ground, and some straps that were attached to it so they could hold down the something... Or someone.

My heart jumped to my throat! I understood why the huge nurse had to not walk, but escort me to "Room 9"! They already knew I was crazy! They were going to lock me in this cell and put me in a straight jacket, I thought! As we walked in I couldn't look at Sister Eames, but the nurse says "this is a security guard," She said pointing to and older black man in his 40's. She said it as a warning, as if saying "Go ahead and try and hurt yourself... I remember thinking for a second that I could totally out run that dude if I needed to.

A good example of what "Room 9" looked like minus the couch.

As the metal door slammed shut behind the nurse I sat down and cried, we were alone, and I was hysterical. Sis Eames then explained the phone call she had taken, it was my mission presidents wife, Sister Holm. My companion said that Sis Holm was called by my LDS counselor, who was called by Dr Mendez. Dr Mendez told my counselor that I was suicidal (not true) and I was wanting to harm myself (which my counselor already knew). So Dr Mendez said she was going to the ER but that she couldn't tell her anything else. So the therapist tells Sister Holm and at that point they thought I had hurt myself, or had tried to take my life. Sister Eames tells me then that she had to reassure Sister Holm that I had not done anything to myself. That I was just being sent there by the doctor. 

I felt worse and I started to cry harder. My loving companion had to tell reassure Sister Holm that I hadn't hurt myself, when at that moment, it was all I wanted to do. I hated that I was there. I hated what I was putting Sister Eames through. I hated my brain, my body my existence. 

Then the phone rang, Sister Eames grabbed it and we looked at the ID... It as President Holm. Just then the nurse walked in, so Sister Eames walked out to take Presidents call. She stood right next to the security guard so we could be in sight, but she was absorbed in the call. 

The nurse asked me my birthday info and put a bracelet on me and I remember glancing from the security guard to Sister Eames and back, he was watching us intently, like he was ready to pounce at a moments notice. And Sister Eames was looking more and more sick and scared on the phone, she then turned walked further down the hall. She started to speak low and fast to President, I couldn't hear her though. I filled out some general paper work, signed a few papers and they left. Saying that a nurse would be back in a few to take my vitals...

I was alone, the big heavy metal door slammed shut and out the rectangle window through the wires in the glass my companion was still talking. I started to cry harder! I had never been more scared in all my life. When she finally came back in she looked just as scared as I felt, and I hated myself even more for that.

She handed me the phone I took a deep breath and even though I was shaking I answered it.

He asked me in the most loving and kind, yet urgent way if I was alright. He asked if I had tried to hurt or kill myself in anyway. I answered "no sir." Trying not to cry again. He asked if I had remembered the rule that we were to call and ask permission before going to the ER. I answered "yes sir" and explained that Sis Holm knew we were going to Dr Mendez, but then Mendez sent us over to the ER so fast afterward we weren't able to think about anything else.

He then explained how I was to not sign over myself to the hospital. I was not to accept a bracelet. I was to insist, rudely, if I needed to (I was shocked that he was giving me permission to get angry but that was literally the vocab he chose) be immediately released to Sister Eames. He said tell them anything. But to get out. He told me of past missionaries that went to the ER for the same thing I did and they held missionaries there for weeks, Doing tests, calling them a "danger to society" saying that they can't be released to anyone, especially not someone who claims to be their "Mission President". All the time I was feeling worse and worse. He then said that I should refuse to sign anything, and insist that I see the doctor and ask to be discharged.

I had to tell him that I was wearing the bracelet and had already signed everything, his answer was like a dagger to me "Sister, that means that you are now a ward and in custody of the hospital. Sister Holm and I are preparing to leave to come get you right now, but in the mean time do everything you can to get out, and refuse everything! Tell them we will send you home on a plane with special nurses, just get out sister, we are on our way." After saying he loved me and that he was praying for me he said goodbye.

I hung up wanting to die. 

I cried so hard and shook in fear as I explained to my companion what he had said we needed to do. That they were on their way (they were 3 hours away). I told my companion that he suggested I should go home, and I stopped talking and just started sobbing. 

And this right here folks is why Sister Ivie Eames is my hero, and why she was sent as an angle to me at this time: She pulls out her hymn book. And starts singing her favorite hymn. Be Still My Soul. She then says a prayer for both of us. She then hugs me and tells me that if I am going to convince the doctors to release them to her I am going to have to stop crying, and shaking, and be confident. I'm going to have to show them I can handle this in my own. Then she told me what president had said... She said he sounded furious, that we had gone to the ER without calling, and we needed to get out of this room, she said he suggested to her that I go home as well. And then she told me that she needed me to be strong and get out of this situation. She said I couldn't think about home. I just had to think about calming myself to get out of this room.

I knew she was right. Taking deep breaths I was trying hard to calm down. When the nurse came in to take my vitals and I said "um excuse me, I would like to actually go home, I don't want an IV or anything, I just would like to talk to the Dr and speak to her about going home." I was surprised at the strength in my voice, and the nurse looked at me like I was just trying to get out of the loony bin. I'm sure she had heard this same thing from people in room 9 before. She said she wouldn't do an IV but she had to take my temperature and Blood pressure and then she would get the Dr, but the nurse didn't sound happy.

I was doing my best to not start crying again. And with in 5 minutes the Dr was in my white cell. I explained that I didn't want to be treated here. That I believed it was a misunderstanding, and that I wanted to be released to my mission companion. The Dr was very kind and listened much better than Dr Mendenz did. She asked if she could talk to me alone privately. I said no, because 1) There was no way I was letting Sister Eames leave me in that white cell on the blue mat by myself. and 2) as missionaries we weren't supposed to be out of sight and sound of each other. But then the Dr said, "I can't let you be released to her unless I can see that you are able to be stable enough to talk to me alone. She said it kind but forcefully too. I agreed and the security guard and Sister Eames were left outside the huge metal door to watch me through the window. I can still remember seeing her standing on her tiptoes trying to see me from outside of the room as I talked with the Dr.

She asked me a lot of questions, but they were questions so that she could gain an understanding. I told her how I had been on Antidepressants and that they worked for a few weeks and then my symptoms would get worse, and so they would up the dosage and it would work and then the symptoms would get worse. I explained how I had never had a history of depression, that I didn't even understand what was going on, when I had the thoughts to hurt myself. She asked if I was going to kill my self. I said no. She told me that Dr Mendez admitted me stating that I was suicidal and a harm to myself and others.

I asked her if she thought it was true and she said no.

I was so relieved! She said that I was on too high of a dosage of Antidepressants and so she lowered it. I asked if I could go home... She looked at me for a long time, and I looked back praying in my heart so hard that I wouldn't have to stay in this white room anymore. She finally answered and said, "you can go, but you must sign that you will stay under 24 hour watch for the next 3 days and you will have to have to sign saying you won't harm yourself or others in front of me and a third party. IF you do these things I will release you to your mission companion."

I was so relieved I sank back into the blue mat and sat stunned. The doctor left to go get the paper work, and Sister Eames came back in. I was so relieved! I told her what was said between the Dr and I, and then I said, "it was a miracle! I prayed so hard and I'm getting out!" Sister Eames was happy too, she had been praying hard on the other side of the door. After a half hour of signing papers and figuring things out we were permitted to leave. The 24 hour watch paper was kinda funny, because we were stuck with each other 24/7 anyways.

When we called president to tell him, he told us to get our P-day stuff done quickly and go strait home. He said he would talk to us later about what we were going to do. He also told me he had called my parents, I wasn't sure what he told them, but he had notified them. He and his wife weren't coming to see us though. I never thought I would be so relieved to not have to see my mission president, but at that time I was!

After all that we were exhausted. We felt gross because we had disobeyed president, and had been ripped apart from each other, it was so scary for me. And I made it worse on myself because I took on a whole lot of self blame because I felt like I had dragged Sister Eames into the worst companionship of her mission. And I still hated myself for it....

(You can find the rest of the story in later posts ER Part 1, and ER Part 2 in the links)

-The Lyme Warrior

The Lyme Disease Challenge

I did the Lyme Disease Challenge! It was just me taking a bite of a lime wedge and then posting it with a fact to raise awarness! Here is my picture! People need to know! This is the website where you can donate LymeDiseaseChallenge.org all proceeds go to ILADS

-The Lyme Warrior

Irony

This is going to be one of the shortest blogs of my life....

Neal A. Maxwell once said "Irony is the crust to the bread of adversity."

And where we all face ironies like, the soccer star that tears their ACL before the big game. Or you get honked at for your driving and you drive a car that your just glad it started this morning, there's no way you are pushing it today (oh wait... That might just be me and my car.) But we all face those little nagging things that eat at us. That bug us and it's like "oh yes please just twist the knife in a little deeper." 

Well I'm having one of those moments today... Today is MAY 12th, national Lyme Awarness Day.... How ironic is it, that the exact day set apart for raising awarness for a disease that is being treated by our government as nonexistent, how ironic to see on this same day, it is also my birthday. And I have Lyme Disease. Wow. At first I was like oh well small world. But now I think about it and I'm like, ouch that sucks... Please just twist the knife a little deeper than it already is. 

It's so weird how ironies sort of naw at us. But oh well! It's not going to ruin my birthday! :)

-The Lyme Warrior

New Music Video Has a Message for Early Returning Missionaries | LDS Daily

New Music Video Has a Message for Early Returning Missionaries | LDS Daily

Symptoms (the master list)

So some poor soul out there, probably waiting for a cure for their Lyme Disease, has made a master list of all the recorded symptoms of Lyme Disease. I have just posted the ones that I either 1) have had in the past, 2) am currently having right now, 3) appeared before I was diagnosed or, 4) some that just come and go. And of course there are those symptoms that have been with me through it all. Anyways, here is the list of my symptoms:

Abnormal sensitivity to hot or cold
Cold hands and feet
Extreme fatigue after minimal exertion
Cold sores
Low blood pressure
Lymph-nodes painful, swollen
Night sweats
insulin resistance
"Brianfog"; inability to think clearly
Difficulty moving tongue to speak
Diminished or absent reflexes
Fainting or blackouts; feeling like you might faint
Headaches
Joint or arthritic pain not relieved by NSAIDs (i.e., ibuprofen)
Light-headedness, feeling spaced out
Migraine headaches
Muscle twitching
Noise intolerance
Paralysis (bells palsy)
Paresthesias (numbness, tingling, crawling, itching sensations) in face, head, torso, extremities
Sensory alterations (sent is strong as a pregnant woman)
Tremors, trembling
Becoming lost in familiar locations when driving
Difficulty with simple calculations
Difficulty expressing ideas in words
Difficulty moving your mouth to speak
Difficulty making decisions
Difficulty following directions while driving
Difficulty remembering names of objects
Difficulty remembering names of people
Difficulty remembering faces
Difficulty recognizing faces
Difficulty following simple written instructions
Difficulty following complicated written instructions
Difficulty following simple oral (spoken) instructions
Difficulty following complicated oral instructions
Difficulty integrating information (Putting ideas together to form a complete picture or concept)
Difficulty putting tasks or things in proper sequence
Difficulty paying attention
Difficulty following a conversation when background noise is present
Difficulty making and/or retrieving memories
Difficulty understanding what you read
Easily distracted during tasks
Feeling too disoriented to drive
Forgetting how to do routine things
Forgetting the use of common objects (such as, what to do with the shampoo when you are standing in the shower)
Forgetting how to get to familiar places
Impaired ability to concentrate
Losing your train of thought in the middle of a sentence
Losing track in the middle of a task (can't remember what to do next)
Poor judgment
switching left and right (confusing)
Word-finding difficulty when describing something
Using the wrong word when speaking
Decreased appetite
Frequent constipation
Food cravings (especially carbs and sweets)
Increased appetite
Nausea (extreme)
Unexplained weight gain or loss
Dysequillbrium (balance problems)
impaired coordination
Dizziness or vertigo
Words on printed page appear to jump off page or disappear when staring at them
Acuity changes not related to prescription changes
Prescription changes more frequently
Swelling around eyes
Disease when you turn your head or move too quickly
Intermittent joint swelling
Joint aches (arthralgia)
Morning stiffness
Generalized pain
Abrupt?unpredictable mood swings
Anxiety or fear for no obvious reason
Appetite increase/decrease
Decreased self-esteem
Depression or depressed mood
Feeling helpless and/or hopeless
Feeling worthless
Frequent crying for no reason
Helpless/hopeless feelings
Inability to enjoy previously enjoyed activities
Irritability; over-reactions
New phobias/irrational fears
Panic attacks
Personality changes
Rage attacks for little or no reason
Suicidal thoughts
Food sensitivities
Bruise easily for no reason at all
Altered sleep/wake patterns
Difficulty falling asleep
Difficulty staying asleep
Nightmares (frequent, extremely vivid and disturbing)
Unrefreshing/Non-restorative sleep
Abnormal or other changes in sweating
Activity level reduced to less than 50% of pre-onset level
Delayed reaction to overactivity/exertion (onset 24-48 hours after exertion)
Electromagnetic (EM) sensitivity (Electrical storms, full moon, affect function of electrical devices)
Fatigue, prolonged, disabling, made worse by exertion or stress
Periods of concentrated thinking causes physical and mental exhaustion
Symptons worsened by extremems of temperature (hot, cold), stress, and/or air travel
Thickened "sleep" around eyes in mornings

So there ya have it, that is the story of my life since December 2013. There are an estimated 300+ symptoms of Lyme if you want to read all of them, CLICK HERE! It is the most up to date full list I could find, it was last updated January 2014.

Now I have to add a sorta warning with this: Do no freak out and see a few of these signs and think you might have Lyme. You would be very VERY sick. However if you have been sick for a while and can't seem to find answers and your symptoms are on this list, I would suggest contacting your local LLMD (lyme literate MD), and setting up an appointment!




-The Lyme Warrior

A Lyme Story

This month, the month of May, is Lyme Disease awareness month. During this time I'm going to be highlighting different Lyme stories, as well as sharing more of my own back from when I was on my mission...

This first one is one that I found that was published in a newspaper by a Neil Raven in 1991. It's a very cool story, well written, and gives a totally different perspective to Lyme. It's on a boy that is infected with Lyme and it imitates OCD and arthritis.

Bicycle Boy 

 
He was 12 years old, and every day he pedaled furiously on his stationary
bicycle for as many hours as they would allow him. He was so absorbed in his
effort that it was all they could do to get him to stop for meals. 

In fact, before he was hospitalized at a psychiatric instituition he had 
been unwilling to stop for meals, for school work, for the simple exchnages
of ordinary life. At age 12, he had lost almost 30 pounds. He looked, in the
language of the ward, cachetic, or in the language of his friends, as if he
had been an inmate in a concentration camp. 

His parents, after all the agonizing, had coaxed him into a car and 
driven him out to the facility , where they had carried his suitcase as they
walked him to the ward. And they had handed their son over to the care of
others, out of desperation, convinced that he was now beyond their help - 
their son who wanted only to pedal, to exert himself and withdraw from the
world he had once embraced with such sunny exuberance.  

The psychiatrists questioned the parents and the boy - the skeletal,
restless boy, who not so long before had been a good student, a healthy,
happy son. He had been a wonderful athlete, an exciting soccer player, but
he had had some knee problems. Over two years he had had four episodes in
which his right knee swelled enough to require treatment. 

It was after the last episode that he had withdrawn. He spent most of
his time alone in his room, fiddling with a ham radio, not tallking to his
friends or his parents. He stopped doing his homework. And then came the
exercising, the disinterest in food, the weight loss. 

At a glance, the boy reminded the psychiatrists of the young women who
suffered from that dreaded and potentially lethal psychiatric condition,
anorexia nervosa. He had that bony look, that restless hyperactivity. 
But he was male, which is unusual for anorexia nervosa patients. And he
was only 12 -- most patients with anorexia nervosa are older. It could be a
working diagnosis. But when things don't quite fit the pattern, you ask
questions. You call in more opinions. 

They called in Andrew Pachner. 

Andrew Pachner looks over to the framed photograph on the wall of his
office at the Georgetown university Hospital's neurology department. The
photo is a blowup of a single Borrelia burgdorferi spirochete - a
microorganism that bears a striking resemblance to the organism that causes
syphilis. Pachner smiles. 

The photo is one of the few clues that this the office of a physician. 
It is a tiny office, crowded with a large ficus tree. More wall space is
devoted to photographs of his four children than to his diplomas from Yale
College. Yale School of Medicine, and Johns Hopkins. There are photos of
his wife, scenes of His family cavorting among the goats and cattle on the
Maryland farm where he lives and from which he commutes daily. There are
bookcases jammed with textbooks, but it could be the office of a professor of
philosophy. 

He recalls the day he first laid eyes on the 12-year-old bicycle boy. 
Pachner was then a junior faculty member in the Department of Neurology at
the Yale School of Medicine, living on a salary that didn't even approach
subsistence level. While the university looked the other way, all the junior
faculty members moonlighted to pay the rent. Among Pachner's stints was a
job evaluating patients at the psychiatric institute. 

Not all patients were selected by the psychatists for Pachner's review. 
But the bicycle boy was. For one thing, there were those swelling episodes
and the probable history of arthritis. 
While he was still in training, Pachner had drifted down to the Yale
arthritis clinic. Diseases of the joints might seem an unlikely source of
fascination for a doctor specializing in diseases of the nervous system, but
there was a vital connection. Diseases of both are often caused by mistakes 
that cause the immune system to turn against itself - autoimmune diseases. 

The doctors studying arthritis were happy to have Pachner around. Many
of their arthritis patients were suffering from autoimmune diseases, such as
systemic lupus erythematosus, which have neurologic complications. Pachner's
neurology expertise was welcomed.  

While Pachner was examining patients in the arthritis clinic, he became
an interested bystander to one of the most clebrated moments in medicine - 
the identification of a new disease. An arthritis specialist, Allen Steere, 
had become interested in a group of children in Old Lyme, Connecticut, not
far from Yale. The children had a curious form of arthritis that followed
the apprearance of a peculiar and characteristic skin rash called erythema
chronicum migrans, or ECM. 
Steere had described the condition in 1975. In 1982, Drs. Willy
Burgdorfer and Alan Barbour, working at the Rocky Mountain Laboratory in
Montana, pinpointed the cause of the disease. 

It turned out that Steere's young patients had an arthritis caused by a 
spirochete. Unlike bacteria, spirochetes are not easily grown in the
laboratory. The standard way to study a microorganism is to grow it on a
special broth, a culture plate. But spirochetes, like exotic zoo animals, do
not live long outside their native habitats. Once outside the body, they die.
The human body makes antibodies to the organism , which makes diagnosis
possible, but the antibody tests can be tricky, and occasionally misleading. 

The world's best-known spirochete is Treponema pallidum, which causes
syphilis. The one that causes Lyme disease would prove to be an even bigger
problem than syphilis in some ways, because people could not avoid it by
abstemious behavior. 

It was a spirochete that awaited children as they ran through the
Connecticut woods, doing what their parents thought was healthy and good. 
The spirochete was carried by forest animals, and it waited for the
unsuspecting, anyone who cared to enjoy the great outdoors: hikers, pregnant
women toting little kids, fishermen, gardeners, and farm workers. It was the
tick-borne spirochete that causes Lyme disease. 

The bicycle boy had had his first attack of Lyme arthritis in 1982, two
years before Pachner discovered him pedaling away on the psychiatric ward. 

Pachner was aware that syndromes similar to Lyme arthritis, syndromes
suspected to be caused by an infectious agent, had been described in Europe,
and he knew these syndromes often included some neurological features,
usually a form of radicular pain , whcih radiates down an arm or a leg. 
Radiculitis meant the trouble was in peripheral nerves, which flow to and
from the spinal cord out to the extremities. 

But none of the these arthritis-related European syndromes involved the
central nervous system. None of these European syndromes caused complex
behavioral changes, and no connection had ever been drawn between an
infectious arthritis and any sort of neurological disease that might affect a
person's behavior. 

In order to cause a behavioral change, a disease has to affect the brain
directly and in a widespread fashion. Various forms of vasculitis -
inflammation of the small blood bessels - can do this. Autoimmune diseases
can do this. But none of the infectious-arthritis group of diseases were
known to be capable of involving the whole brain. Focal lesions can "stroke
out" particular functions, causing paralysis, speech deficits, or sensory
loss, but the entire brain must be involved for memory deficits,
disorientation, or obsessive behavior to occur. 

Clearly, what was going on in the bicycle boy was amore than a simple
radiculitis: in which only a single nerve root would be affected. 

By 1982, physicians in Connnecticut had been alerted to the possibility
of Lyme arthritis, and the boy's first attack of knee pain had been treated
with a form of tetracycline. But two years later, when the boy started to
withdraw from life, started to become a behaviour problem, his physicians
made no connection between his psychiatric symptoms and his earlier episodes
of arthritis. "Lyme arthritis" was a disease of the joints or, at most, of
the skin and the joints: nobody had any basis for suspecting a connection
between the knee and brain disease - except perhaps for Andrew Pachner. 

Working in Steere's clinic, Pachner had begun to uncover neurological
symptoms and findings in his Lyme arthritis patients. Another neurologist,
Louis Reik, who had preceded Pachner in the arthritis clinic, had passed on
his suspicions that the Lyme patients might have more than simple radiculitis
complaints. But it was up to Pachner to push ahead with his observations. 
Pachner connected the symptoms of the European patients to the new, more
diverse symptoms he was seeing in the Yale clinic. Reading through the chart
of that 12-year-old boy, Pachner began to get excited. 

Could this boy have an infection that affected not just his knee but his
brain as well? The organism identified as causing Lyme arthritis was a
spirochete. Syphilis was a spirochete, and what syphilis could do to a brain
was well-known. It could cause dementia, bizzare pain syndromes, a whole
variety of symptoms so diverse that medical students are taught to think of
syphilis as the "great imitator".  

Syphilis mimics many diseases because it can affect so many organs:
heart, brain, joints, nerve, eye. Wherever blood goes, syphilis can go. 
Syphilis can cause a vasculitis of the small blood bessels in the brain, the
eye, almost anywhere. Could this new spirochete, this borrelia burgdorferi,
be as strange and protean in its manifestations as the "great imitator"
itself? 

Could it be, thought Pachner, that this bicycle boy has Borrelia in his
brain? 

If the spirochete that causes syphilis can enter the body through genital
tissues, multiply, migrate to small branches of the vascular tree, migrate
through the thin blood-vessel walls, and set up house in the brain and
nervous tissue, and in heart tissue and aorta, was it so farfetched to
believe that the Lyme spirochete might do something similar? 

Might it enter the body through a break in the skin caused by an insect
bite, the way malaria does, enter the blood stream, and multiply first in a
knee joint causing arthritis, and then wreak havoc years later in the brain,
as syphilis has been known to do? 

Not having an answer, not having solid evidence or similar cases, Pachner
could not voice his suspicions to the boy's parents. He spoke instead to the
psychiatrists and asked them to transfer the boy to Yale - New Haven
Hospital. The parents were told simply that there was a chance the therapy
at Yale could help their son. They were willing to try anything.  

When the boy arrived at the hospital, he was taken to the neurological
ward . Pachner met his parents and explained that he believed there might be
a connection between their son's previous bouts of arthritis and the problems
that had landed him on the psychiatric ward. But Pachner could make no
promises--they were in unchartered waters. 
The boy's parents did not know what to say. Their son's strange course
had been so baffling, their odyssey through the psychiatric wards so bizarre,
they could accept anything. They had no choice but to hope that Andrew
Pachner was correct. 

On the neurology ward, Pachner did a lumbar puncture on the boy, 
inserting a needle into the midline of his back, passing it between the
vertebral bones to the fluid-filled sac called in which the spinal cord floats.

Examining the fluid, called cerebrospinal fluid, or CSF, Pachner noted a
profusion of immune cells called lymphocytes. Now he knew he had something. 

Patients in Europe who had neurological symptoms following arthritic disease
showed similar findings in their cerebrospinal fluid. Those lymphocytes might
be the marker for the presence of the borrelia spirochete. Pachner ordered an
intravenous line started on the boy and 20 million units of penecillin to be infused
daily for fourteen days. 

There was no reason to expect sudden response or improvement. If
Pachner was right, if the boy's current depression and compulsive behavior
were attributable to a brain infection with the spirochete Borrelia, then the
intitial infection dated back two years, to his first episode of arthritis. 
A long standing, deep-seated infection like that could not be expected to be
resolved overnight. 

BUT THE RESPONSE WAS DRAMATIC. 

Within days of the intitiation of therapy, Pachner recalls, "his
behavior changed." 

The parents were speechless . Even now, Pachner finds it difficult to
describe the sensation of watching those first changes in the boy.  

"It was like-" Pachner searches for a word, shakes his head, then finally
says, "a fairy tale. That's all you can say ." 

The boy was discharged. Pachner watched him leave with his parents. 

Two weeks later, the boy arrived with his parents at Pachner's clinic. 
He had gained weight, but more important, he was talking again, was more
outgoing, and had gone back to school. Within months the boy was back
playing soccer and he was doing his homework. The transformation, or the
reclamation, was complete. He was back to normal. 

In the process, the understanding of the disease that had been called
Lyme arthritis had expanded. The disease was no longer limited to the
joints. It would henceforth be called Lyme disease, a disease of many
organs, including the brain. IT WAS THE NEW GREAT IMITATOR. 

Pachner has reported this new disease in many guises. A 21-year-old man
with a history of violent outbursts, confusion, and wild laughing was thought
to have a herpes-virus infection of his brain; treated for Lyme disease, he
returned to normal. A 55-year-old woman who had gone to her doctor with a
facial droop was cured after a diagnosis of Lyme disease led to early
tratment with intravenous penicillin. A 37-year-old man with fatigue, a sore
throat, joint and muscle pains, and facial-muscle paralysis who was thought
to have multiple sclerosis was found to have Lyme disease, and all symptoms
resolved . A 61-year-old man with double vision who was thought to have a
brain tumor was treated for Lyme disease with only partial improvement,
probably because his disease was too advanced to be cured. And a
6-year-old girl suffering from headaches, knee pain, and tingling in her toes
- and later from vertigo and staggering - was apparently cured after
treatment for Lyme disease followed positive studies of her blood and
cerebrospinal fluid...

*The Washingtonian Jan. 1991 Medicine by Neil Raven*

If you want to read the rest of this story click here.

Otherwise I find this story amazing. It makes me appreciate my Lyme symptoms more. I can't imagine how crazy I would feel if I just wanted to sit on a bike all day long! I shutter to think where I would be. It makes me that much more appreciative for what we know now, and where it still isn't much, I can get the help that I need. And I'm grateful for that.

-The Lyme Warrior







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