Lyme Disease: Stories From the Front Lines of An Epidemic – Jordan A.

(with permission)

Hello, my name is Jordan A.

I grew up in a small town in Minnesota. When I say small town I am talking graduation class had 21 people in it. I checked out the population census the other day and it was a little under 400. Grew up like anyone else in the 80’s & 90’s a little strict but fun childhood. Funny never thought about ticks like the way I do know. Didn’t give two licks about them other than they are not fun to get on ya and that they are a nuisance . So during the school trips and the family camping trips, I wore long socks with my jeans tucked in. 

Once I was out of H.S. I traveled. Not out of the country traveled but went wherever I could when I could get there. Took semi truck trips with a trucker friend all the way up to Maine. Lived in places for a few months like O.K., NE, KS, SD, anywhere I could get too. Then in 2002 I had a feeling that I NEEDED to get home to Minnesota. I went home and stayed there from 2002-2005 mostly working in the family tire business or driving a school bus. Was a mess of a person, though. Lots of personal things were getting me to a dark place. So an opportunity came about for me to move to FL. Even though I was established and ready to settle so to speak. My heart was trapped, my soul was grounded and I was a free spirit.

In May of 2005, I moved to Tampa FL. There I established friends and in and out of different jobs and moved a lot throughout the city. Finally in 2006 started working as a temp for a company named UDR, inc. They liked my drive and bought out the contract. I worked and did whatever was needed to help succeed in the company and in life. In 2007 I was introduced to whom I call a friend now, that helped me achieve a stable life without being or feeling trapped. I was finally established in 2007 and was able to go visit home, for the life of me my life get foggy. So do not know if it was for my Grandmothers funeral or for a real family visit. I know from then on I tried to get home as often as possible. My family came to visit intermittently as well. 

Here is where the story really starts, this is where I try my hardest to relive my life the past how many years to try to remember if there was a bulls-eye rash if I remember a tick ever. As I was saying I got hired into a company that I loved. I would do anything including dress up in any outfit for 

directional of traffic. I thought I was going to be in this company til retirement. Sorry, jumping.

Anyway in 2010 I started really developing weird habits what I called them, almost an aggressive TMJ, or clenching in my sleep. My weight was odd, I could eat what a 500 lbs man would eat 50 wings, loaded fries, and more in one seating. Yet the largest I got was 200 lbs just put it all, the stomach cramps, the weight gain, everything on my injuries from work and or lack of exercise, lots of beer.

By this time I was a Service technician and was learning as much as I could when I could. Going out of my way to be the best person not just technician but person for the company as I could. Even dove into a dirty man-made pond for curb appeal on the property for a dog that was not kidding swimming in there for HOURS. Gotten woken up by him around 6:30-7:00 am and not until after I got to work clocked in and tried other avenues. So a really long time, there were residents of course some had different schedules so they were getting frustrated, long story short I really did anything I could 

for the company. 

Then in 2011-12 I started to really get sick. Major stomach issues, fatigue, vomiting of what I called glow sticks aka bile, I was stubborn and still went to work. Some of those times I did try to call out don’t get me wrong. By that time I was a concierge at the property, 3 promotions in 4 yrs. I started to go to the doctors by Feb/March 2012 First my primary- She diagnosed me as a hypochondriac at first, Was stating that she thinks it is strange that I have all these pains and issues yet all test are normal. Yet I stayed persistent. With a blood test it showed that my liver enzymes are really high and she, I started to 

lose a lot of weight was from 200 lbs to 175 within 3 months. So she recommended me to a endocrinologist, he misdiagnosed me with colitis. With that he recommended a me go on Elavil, got blood work to prove colitis, and also vitamins. When I went back for the blood results he said well all the blood work is normal. There were a few numbers off but nothing that he was too concerned with, and it is not colitis. I asked about the medication he had me on and he said stay on everything and plus more vitamins. Then he suggested a psychiatrist. Yep, he thought that all the issues the stomach cramps, the vomiting, all of it was in my head. That I was developing a eating disorder. 

By July 2012 I was offered/asked for another promotion that moved me from Tampa FL to West Palm Beach FL. This is where it really gets interesting. I was coming and going on the property helping out. I connected really well with the service manager and the other staff at the time. I helped on and off for about 4 weeks. during that time there was communication between many people and myself including District managers. That is when I made the promotion decision. It was great, we as a whole team turned a property on the verge of being on its way out the door to a great place. The numbers were on the rise. Me and the manager and other team members were pulling 12-14 hr shifts. Time cards were ridiculous amounts of hours put in. Weekends were none existent. Soon we were at a nice NORMAL pace, where we were working 8 maybe 9 hours in a day. Numbers were evened out, work orders were still high but not surprised with the amount of units on the property. By then it was Oct. 2012, I was at a low weight of 145 lbs give or take. Everyone at work agreed I was sick or on some kind of drugs. That is when my body started to get the best of me. There was a time that I had to call out sick, I then not to long after feeling really flush, tired, living on my own. I put all the items I would need next to me on a table with a chair nest to the patio so that everything was easily accessible. yet still I called up my boss and asked her to come over. I knew not to many people other than her and select few that were busy, just moved remember had been to busy to even make friends. Anyway she came over and She after much talking, arguing, weird symptoms such as paralysis, nausea, passing out, etc. she made me go to the doctor. We went to an ER walk-in center place. HAAAAA!!!!! what a joke of a trip….. conversation goes like this. Keep in mind that I could barely walk, talk, stay coherent, tremors, was freezing. 

Nurse: Hi how are you today, i am going to just take your vitals

Me: -Ooookkkkaaaayyyy *slurrrr, oooooooowowwwwooowwww that hurts 

Tried to pull off cuffs, my skin was ultra sensitive and the pressures felt like I was going to see my muscles turn into a hot dog squished out of a casing. 

<my eyes start to water. The nurse looks at me with sad eyes

Nurse: that hurts that bad huh?

Me: *nod

Nurse leaves, I sit in the room alone shaking and trying to stay awake. The doctor finally comes in. Does not even say hi nothing sits down the nurse walks 

over to the side of me between the bed (where I am) and the doctor at the table (you all know what table). He does not look up just reads charts. 

Doctor: so why you in here

Me: U-um I can’t I  *** stammer stammer, close to passing out

Doctor: okay so you have to tell me what is wrong if you want me to help you. *very aggressive tone

He looks at a nurse who gave him a hmmm look. Then I gesture for me to write so that I can tell him. Remember can not talk that well. By this point, my throat feels like it is closing up.

Doctor: Is this a joke, no we DO NOT have time for this kind of stuff. Either you tell me what is wrong or you can go. 

Me: IIII Caannnttt talk

Doctor: Well all the Bp’s are normal 

Me: may I leave *all broken up speech

Doctor: Fine

He walks to the door, turns and looks at the nurse who in turn gives him a WTF look he says what all the stuff is normal, she wants to leave. So I started to get up, that is when he noticed the lack of ability to use the legs.After getting an even worse look from the nurse  and seeing it. 

Doctor: well I don’t want her to leave but looks like she is.

I then as I am walking down the hall one hand on a rail the other in the air waving F-U.

I got into the car and told my boss lets go. She asked what happened I told her it was all a joke and I will rest it out. 

Once work slowed down thankfully, my family came to visit. We went to Disney. It was a lot of self-medication AKA Marijuana (this was the only drug that was not chemically compressed to help me eat and sleep and keep nausea at bay. Found this out by Feb 2012 when the symptoms were increasing). There was a lot of what I know now as Lyme rage, a lot of painful moments in all aspects such as physical, emotional, mental. This is where the story gets a bit hard for me. 

My family and I are close, all in a different bond of a way. SO me, my sister, and my mother are so in sync, like one is rational and sound life advice, one is the kindest heart you have ever met no matter what the cost or repercussions, one is the humor and counselor. So it was hard for me to have those ones I love see me in this condition. the extreme weight loss, the vomiting, the fatigue. It is not me at all, there are there are physical and attentive quips that would come out of me that made me who I am. I felt I have lost a lot of me pertaining to that. Unfortunately, I had not at the time been able to find even close to a happy medium. It was an all or nothing for me. The visit was limited but my nieces and nephews, sister, husband and mother still had fun to the fullest that was given to us. During this time we had gone to an expo that had a chiropractor booth. They did a test and recommended and set up an 

appointment for me.

Sept. 2012, went to the chiro visit. They did there further tests and x-rays and found some skeletal structural issues. Late Oct, Nov 3 x wk, started chiro treatments for the related find at the expo. They started me on a rehab cycle that included shots for the joints and muscles, rehab exercises, and adjustments. Not gonna lie during this process I started to feel better, a lot less pain in the joints. With the results from the tests other than the skeletal issues, there is found peripheral neuropathy. That explains why when walking no matter what I am doing they give out. I literally drop like my legs were swept out from me. They turn to jelly, then ache for hours. Yet once I have the control no matter what the pain you still get up. You still show you are okay. 

At some point within that time, I went to GA to visit an old friend of many years. She is one of those friends that you have for life, no matter what we are going through how long we do not talk. Once we talk it is as if we never had a moment apart. That too was a bit of an anxiety trip. By this time I still have no 

idea what is wrong with me or how to readjust myself to give people who they are used to without the self-consciousness or the ashamed of what I have become settling in. It definitely was a different visit that any other. Still fun always is but different. 

Late Nov. 2012 my body is shutting down. Work is stressful, simple tasks are becoming so hard. Can’t think properly, can’t function. Still no clue what is wrong with me, couldn’t keep any weight down to 136. Yet I was still trying to have a life, I transferred here in June/July of 2012 for this new job. There is so many new things, so many new people to meet. Started to get into church and many plans with them as well. Things like learning to skim-board, long board, go on mission trips with the church, become a remember of the church etc.. In the stream of this I met a female that I was to meet and become good beach/ hang out friends with. That is not how it went down. Once I met her I knew it was gonna be more than friendship even after long hours of trying to convince myself that is NOT what I needed. 

My bosses are getting really pissed that I am struggling, coworkers are feeling I am not pulling my weight and I really am on drugs. There came a day in this month that my boss and I got into it about what is going on. 

Him: I am sick of the disrespect

Me: not disrespecting, just can’t keep it together, besides if you would pull your own weight and not put it on me cause I am sick okay I don’t know 

what is wrong but there is DEFINITELY something wrong and you ain’t give a shit

Him: see now you really think that is what and how you talk to your boss, insubordinate.

ME: fine I’m going home

Him: no you are fired

Me: what you are kidding me. 

We walk into the other bosses the one that can override him. Lots of loud talking, lots of cursing, lots of accusations, and silver tongues. Ended in not a fire but me giving my 2 weeks. She agreed that it is not in my best  interest to keep pushing my body. I then went home, and talked it over with my GF. Yes, I had met someone after 4 yrs of celibacy, after not having any time to meet anyone. Once I had the time, Nov. 15, 2012, is when I met Stephanie. She accepted my medications, she accepted the fact that my body was sick. She has been through more than I could imagine with this sick. There are more that are affected by this than just the person  that has it. It affects everyone that comes into contact with a person with the disease. Once talking was done and I thought I went back to the office, I was to turn in my notice but instead I said nope let make a few phone calls and see if FMLA and STD are in the deck. 

Sure was, I then in Dec 18 2012 was on FMLA and getting doctors lined up. I went to a gastrologist who was great at first. Really had me convinced that I had hyperparathyroidism. Like all the other doctors he put me on more medication and dosages upped on vitamins, etc. Looking at the ultrasound of my thyroid had him convinced. The tech who did the scan was shocked and in all her career of over 14 yrs never seen anyone so sensitive to the wand pressure, man did that feel like the hulk himself had his paws all wrapped around my throat. The doctor and her starred at that screen like they were watching UFO or BIG-foot clips saying wow never seen one so white and inflamed, while I am laying there with tears in my eyes from the pain. 

Blood work back and this is the convo…

Doctor: well I have good news and bad news. What you want first

Me: don’t care

Steph: Bad

Doctor Bad news is, blood work back. It is not hyperthyroid anything. He is stumped, the blood work has him worried tho. There are high numbers in my ALT and AST, double/triple the normal numbers. Which makes me worry it is liver. You are sure you do not have hepatitis, alcoholic, pill popper? 

ME: nope no no nope not even,

After standing up cause there was nothing more to say

Doctor: Maybe it is the THC you are getting.

ME:  Are we sure it is not the ELAVIL that the endocrinologist put me on? (did some research with me gf, called drug induced hepatitis)

Doctor:  Since it is not medically monitored. Oh yes yes that could be it. Okay well Sorry couldn’t help you more. *kiss on cheek with a hug.

WOW!!!!!!!!!!!!!!!!!!!! as I am leaving the nurse runs down the hall and sticks her head out the window

Nurse: the doctor wants to see you back in 6 weeks

Me: Why so that he can tell me he still doesn’t know what is wrong with me?

Nurse : true guess your right, If you need us let us know

Me: yep thanks

Jan. 2013, I had previously gotten through tell one of the church members an appointment with a homeopathic, Premier health. They during the first visit which was in Dec drew 17 vials of blood. we sat in her office and talked about my symptoms, we chatted about what I am trying to achieve. When she was  ordering the tests and everything the blood work was the fun part. She was rambling on about which ones to get and at the very end she ordered a LYME test to be done. January 4 2013 I was diagnosed with LYME disease and the MTFH gene. She has a plan, Doctor: Argentyn 23 IV every wk once a wk for 6 weeks. 

Me: great then it will all be out of me it will be done and over with. (in my head of the time of this and after she tells me what is wrong with me, 

not knowing nothing about the Lyme disease. My mind goes to my father and west niles, and with the way, the doctor was acting about it) 

Doctor: Yep, with other words no clue what she said

Me: great okay so how we do this

Doctor: well unfortunately it is not covered by ur ins and it is 125 a session if you pay in advance it is 100. 

Me: wow okay then lets do it. ( at the time I had my job I was good, I thought that the doctor was telling me it was going to be back to normal for 

my life in 6 weeks.)

Me: was wondering cause of the other numbers ( some of the tests were to see about the hepatitis accusation) do you think that the ELAVIL is causing 

it?

Doctor: possibly, 

Me: can I with your assistance ween off of it then (tried once before and my body went nuts thinking that was why the EPISODE, I call them, occurred 

the time my boss had to bring me to ER) 

Doctor : sure lets take it slow, 1/4 at a time. Few weeks at a time. 

Me: okay see you next time

Contacted my job, had to keep in contact every two weeks anyway. I liked to fill them in even more often if necessary. Went in to tell them the diagnosis. We all played it off, said great we found out what is wrong with you. Funny thing is should have known from that moment on that they did not care as much for me as for the job.

Next thing out of there mouth once all the logistics of the attempts to resolve the issue was dealt with was, so when will you be returning.

ME: I don’t know the doctor said 6 weeks of treatment so about that for now. Anything new I will let you know. 

Okay then well good luck and keep us posted

ME: will do

So I tried to stay as relaxed and enjoy life as much as possible during treatment. But not within a few days were me and Stephanie talking about the money of the cost of vitamins, treatment, gas for travel time, etc. at that time in life it made no sense to not combine houses and find a cheaper living, so we moved into a house with more room and better cost of living. Unfortunately the path veered to the right and we were headed forward. 

By late January early February 2013 my treatments were going okay. I started to have what is known as HERX., we started to video tape them. There is nothing more entertaining than watching yourself on video when you can not remember any to none of what is happening around you at the time. I talked to my doctor about it whom I had only seen a once or twice between these months of treatment. Most was on the phone or through computer with the IV lady. she recommended a supposed infectious disease, nope IDSA rules that doctor. He didn’t say much to me barely did anything. I showed him one video and he said “yep, well we don’t need to do a spinal fluid test on ya it definitely is in you spinal fluids” while looking like he has never seen anything like it before. One minute he has many Lyme 

patients next he doesn’t know what anything is about the disease. Then he goes on to say what do I want out of this: what is with this question what is the answer you get the most I WANT TO BE HEALTHY AGAIN!!!! So I tell him after all the drama and trauma of my body after removing myself off ELAVIL. There is going to be many people in this book with this part of the story soooo lets make it simple and I’ll put the basics and stuff I think are unique

My weight was getting harder to control. The doctor had me on so many vitamins and supplements, along with the IV and medication (THC) I was having bad days but the bad before the good is what I would tell myself everyday. There is good right around the corner. Herx almost 3 times a week, can’t eat, tremors, full shakes, seizures. I would pass out and be like in a listening coma. I could hear things when I was coherent, but I couldn’t move any part of my body until What I am told pass out for a good 15 + minutes. 

In the meantime I was in constant contact with my job that was persistent when the time came near on making sure we were all on the same page on my return date. It was in mid-March my life went to what I call RUINS

I was in and out of the doctors office cause of the healing process that you go through during the treatments. So to me I was not ready to go back to work, it is a very physical job and I felt my body had no control. Yet I went to my doctor who in turn did not feel comfortable giving me a full return or a 

full out of work either. see unfortunately my doctor, even though she has multiple Lyme patients, does not feel comfortable without further tests. So I was given a partial return March 12, 2013 I was asked to send in all the paper work, this the doctors note summed up”Patient can work half days, 15 min break ever 2 hrs, no heavy lifting, no power or heavy hand tool use, limitations to stairs, ladders, etc. Needs 

intermittent sitting and standing.”

Like I said that was in a nut shell. Oh major stuff is forgotten in this, my job worked through PRUDENTIAL for there ins needs including my STD. Ha funny story that I left out is that when I first went on STD I almost was denied cause when they gave me the paper work in Dec for it they neglected to tell me that beginning Jan 1 2013 they were switching the ins companies. So the two ins companies fought on who HAD to take the case. Prudential LOST LOL Anyway the end of the day March 12, 2013 I was RELEASED from my position. I called all three avenues to try to find out why when I was approved as a disabled and though I couldn’t be fired. Between FMLA and the STD i should not be going through this right now. No one had any viable answers they just kept saying 

that the other side made the decision and that there is nothing that can be done.

So I started to fight, fight not for my health but for my whole life. It was crumbling at my feet prior to this and now it is crashing; full bulldozer involve demolished. Everything I worked for the past 6 yrs gone with one phone call. One piece of paper determined I was useless machinery for UDR, Inc. I applied for Unemployment immediately, not knowing that it would all be a waste of my energy. See Florida law is that if you are wanting to collect unemployment even if disabled have to apply for full time work. So I met on one standard I was putting out the proper amount of applications but I was not filling them out correctly. I was to be putting full time any hours work. So I got a letter sating so. That I will NOT be receiving the previous letter amounts cause I am NOT fulfilling my duties as a unemployed Florida resident.I was putting what my abilities were last I got to see a doctor. Called multiple lawyers to see if anyone would want to help me fight the company for the wrongful way of releasing me from the position. With one of the lawyers they suggested that I go through the EEOC under the disability act. I sent in a complaint to the EEOC Late March/early April who in turn is now June 2013 finally trying to help me with the case. The job contacted them back with my job back with a demotion from management. I did not feel that was a good deal for me considering that I lost my job have not gotten any money’s except savings and IRA and family. My health has decrease so bad I have reached a breaking 123 at points. There is not enough funds for me to barely live let alone moths and years of financials it takes for keeping me in remission. I do come across moneys from my GF or 

selling items for medication (THC) which is never in high supply or easily accessible without worry of being arrested. Once I voiced my concerns to my lawyer from the EEOC she stated that she is here only to help me with the job rehire, she can not help me with the fight for LTD. I know and have been 

told/suggested to me to try for SSID but I am hopeful that the fight with the job will come through and I do not have to put the working life stress to aid to my declining health. I do not understand how they can offer me a job as a concierge knowing my medical that has decreased over time without the income or health benefits. I am worse than before and work was hard then, enough for the company to fire me over it. Now the position is available and ready for me. Yep not gonna happen.

The rages along with the bad eating habits and pain that I am enduring everyday is unbearable. It is putting strains on my life to the point where loneliness sets in everyday. I have to fight to get out of bed. If I stay in bed it is like cabin fever times ten. I get angry over everything, I need to have 

organization to the max. Since I have been sick even before diagnosis I started to develop OCD with cleanliness and organization. Everything had to be put in place, things needed to be cleaned and taken care of immediately. So with all the lack of control and sitting in limbo waiting waiting always waiting for answers there is, a lot of frustrations, a lot of rage. Lost a lot of friends cause I am not able to get out and about. I am to emotional and it is hard to see me with no energy and emaciated compared to what I used to be for them to be friends. I stay inside out of the heat or cold. I am afraid to be out of the house too long. Don’t know when a EPISODE is going to come on. Get weak within minutes of doing things. Get noticed by the way I have to walk sometimes or if my legs give out. Afraid to go out of the good days to enjoy life cause I think well someone is going to see me having a good moment and think it is all a lie. I am well and trying to get the system to fund my life. But either way I am not, I am trying to have the Company that I gave all of my hard earned energy and time too. 

I have had a lot of bad days of pain and discomfort, a few episodes. But when stress gets too high my body does crazy things. I developed what as I researched was a lung infection from the Lyme getting into my fluids. I went to the ER with the symptoms. It did not go as planned. I was to go in get x-rays and be on my way. My immune system must have given up from the weeks and months of coughing and having a hard time breathing. My body went into seizure in the waiting room. They rushed over pulling, prodding, injecting drugs in me my GF crying screaming at them I do not take any sort of medical/chemical induced drugs. Still they proceeded, to do what THEY felt was right. During the whole thing numerous amounts of times my LYME came into play and they ignored said that 

“NOTHING I AM GOING THROUGH RIGHT NOW IS RELATED TO LYME” The seizure the lung issues. There were even two nurses that had contracted Lyme but caught it early and they too cause they have not seen the worst of the worst the stage three the in your fluids and spinal Lyme…. It was all a joke, left out of there with a high bill and low self worth about more than just Lyme. Later that day my GF and I were walking into the house or something and I dropped to the floor stopped breathing for close to a minute of it where she even slapped me in the face, tell me she hated that part, and nothing no movement. A few seconds after I came back to her eyes watering from crying. 

I have come to take life with what it gives me. Keep getting up everyday, some days fight to stay awake, others when I am good enough i do things like this. Write, communicate, try to get out of the house and get papers, phone calls made to try and get my life back on track. Within 6/7 yrs I was rising I was becoming someone I was proud of. Within 6 months this disease took everything away. But once rock bottom hits it is either no way but up or death. Believe me that is never far from the prays of help me help myself. The other prays are please take me away take me home so that I can be released from this everyday pain and agony. Since he is not taking me, he is wanting me to continue. So I have a neurologist appointment next week June 27th hopefully he can figure out why my brain is telling my body/lungs to stop movement. Or why my legs are non existence. Until I can get funds and or further papers/things done. 

On the good days though oh the world was taken for granted from me for a long time. Now I cherish ever time I can get out to the deck for a campfire or get to the beach for one or two good runs on the board. One of the getting out to get things done and or to see if we could find something to make me feel less like a caged bird needing my freedom, we came across a tattoo shop. I couldn’t resist I went in for a consultation of what a tat would cost to show my support and awareness of Lyme. It was a price I couldn’t refuse, No regrets what so ever. I always take months years for a tattoo and they all have a meaning. Many people are like that. But this this was something different. It just flowed. The artists and I compiled the idea and we got it done 5-10-2013 as a awareness movement on my part.

Now it has been shown in an amazing YouTube video that is inspiring to say the least. There is not enough words for this woman in Sweden, Charlotte Bjornstrom. When I saw that I dropped in my chest, it was like I had myself again. My smile was back, I was so honored. The whole video collectivly is like that. Its amazing. Then there are people who inspire many, just by making us feel we have a voice when we are so damaged and in a need for someone to be our muscles out strength our ENERGY to be heard. Many are not there and many wont be for a long time. But there are some that have concured for the time and has become a TRUE LYME WARRIOR.

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