Melissa's Lyme Life Story

My name is Melissa Severance and I am currently 35 years old.  I have been married for 12 years and we have 4 beautiful children.  I love crafting, the outdoors, being silly with my children, listening to music, and being a member of the Church of Jesus Christ of Latter-day Saints.  I am a stay-at-home mom and am currently the, (Children’s,) Primary President in our ward at church.  I also have Chronic Lyme Disease.  My body is constantly in pain but you wouldn’t guess by looking at me.  Every single day I fight Lyme disease and battle with my body to help keep it in balance.  Every single day I am fighting inside to keep the smile on my face and enjoy life.  I do most of the time but sometimes I just need to not be alright and let it go for a while. 

This is my story.

I don’t remember getting the bull’s eye rash as about 50% of patients get.  I don’t remember being bit by a tick.  I was completely unaware of what Lyme disease was.  I was unaware of how deadly it was and how the disease wrecks havoc on your whole body. 

Once I was diagnosed we originally thought I may have been bit when camping last October.  Now we believe it happened decades ago, meaning my kids as well as my husband has it, too.  Both of my doctors in Arizona and Nevada told me that we would only know how long I have had it based on my treatments and how long they will be needed.  I was told I had Neuro-Lyme or CNS Lyme, (central nervous system,) and I was just beginning to show signs.  I also have beginning signs of Lyme carditis and learned this after being hospitalized from it this summer.  I was in the early stages of Chronic Late Lyme Disease.

My symptoms became worse around October of 2013 when the weather was finally becoming cooler in our dry desert.  Back in early October our family, all but my oldest, caught a nasty stomach bug.  I was the only one to also have a head cold and sinus infection at the same time.  It was so bad I had to stop all exercise.  I would Zumba twice a week and do AIRobics on the trampoline at my husband’s work.  I was a very active mom, playing and dancing with my kids all of the time.  I was always happy, willing to be playful and was always up for serving others.  I sacrificed a lot of my time to help my children and friends in anything they needed.  I loved my life!  It was great!

About a week after the stomach flu had left our home, we all went camping with our ward at church up in Mt. Charleston.  It was only for one night and we were there for a day and a half.  During the night the temperatures were below freezing.  We were all warm as can be, I in a sub-zero sleeping bag. 

During the night I awoke suddenly with extreme shakes.  My husband wrapped an emergency thermal blanket around me inside the sleeping bag and I still could not stop shaking.  He said that I felt warm and I tried to concentrate on my breathing with no success.  It took over an hour for my body to stop the violent shaking.  My head was hurting tremendously. 

Everything comes crashing down

The next day was better and I continued the day with a headache and fatigue from a crazy night’s sleep.  We had a lot of fun with friends on the mountain!  We went home and that night I crashed with a horrible migraine.  Within the next few days I was sick again.  Calling a nurse hotline I was told that I may have a type of a non-viral walking pneumonia but needed to come in to be fully diagnosed.  My right ear began to hurt and the pain was so intense it would bring me to my knees without any warning.  Cold weather did not help.  Any cool breeze sent pain throughout my body.  I started spending more and more days in bed or on the couch with my children running around me.  The pain was so intense I was nauseous constantly. 

Time passed and by the week of Halloween my ears were both in a lot of pain, mostly on my left side.  My whole head was in intense pain and I still had a cough from being sick.  I was emotionally struggling with being sick now for over 2 weeks while missing events with my kids.  I pushed through and went to our wards Trunk-or-Treat at church.  On Halloween night, I skipped around and found that since I couldn't get rid of the pain I would be happy and enjoy the night either way.  That didn't last long.  As soon as we were back at my sister-in-law’s home I was in excruciating pain.  I paid for it for days afterward.

A month passes and I am battling fatigue, pain and dizziness.  There were more and more days in bed, unable to function properly.  My brain felt in a fog from the pain and my sleep schedule was completely off.   My whole body was aching.  Thanksgiving passes and I can hardly bear the pain.  We had no insurance and I had hoped it would go away on its own.  It didn't.  It just became worse. 

Time for an intervention

On December 4, 2013 I decided I could not stand the tortuous pain any more.  My husband and I agreed to that I should go to an Urgent Care immediately.  I was diagnosed with a double ear and sinus infection.  He said the left ear was the reddest.  I took all of my medications exactly as prescribed and the pain was only reduced a bit.

More time passes and the pain still remains.  Sleep is the only thing that makes it go away, that is if it didn't wake me up constantly from the intensity of it.  My sleep schedule was so off that I had what I call “painsomnia”.  Staying awake from the pain, sleeping only from sheer exhaustion and mind you this went on around the clock for weeks.  I was becoming dysfunctional and had a hard time waking in the mornings to take my children to school.  Thankfully my husband could take them when he was not traveling.  The holidays were great but I had pain that was gradually getting worse.  It was maddening.  I was always on edge, short tempered and had little patience for anything.  Having constant pain that shoots large amounts of shocking pain through my left ear every few hours…  I couldn't take it anymore.

Our insurance started on January 1, 2014 and we luckily received our cards in the mail that day, too.  On January 2^nd, I went in again to the Urgent Care.  They sent me in to be x-rayed of both my head and chest.  The doctor came back in to tell me that even though my ears were no longer red inside I had cysts in my sinuses and will need to see an ENT, (Ear, Nose & Throat).  He also told me that I should get my back addressed to fix my scoliosis since a majority of the discs were about to deteriorate completely.  Surgery is easier the younger you are.  All I could think of was that surgery is going on the back burner for now…  I maybe have an answer to all this pain!!!  The urgent care doctor gave me another antibiotic, Loritab, a nasal spray, and pills for dizziness.

New symptoms and more tests

As I waited the week for my referral to be processed for the ENT, I started getting new symptoms.  I now was experiencing neck stiffness, joint pain and extreme headaches.  I was having a hard time walking without feeling the shooting pain all over.  January was a very rough month.  I slept most of the month away or was in a drug induced pain-killer state.  I was taking the pills a lot to keep the edge off.  I was pretty much useless to everyone.  I would wait anxiously all day to get my kids from school so I could finally take my pain pills.  It was rough. 

Once I received the referral it was another 2 week wait just to get in to see the ENT.  I took my prescriptions as directed and time passed.

At the Ear, Nose and Throat doctor’s office he did a visual examination including using a simple scope.  He said we will have to run tests in office first to eliminate the basics.  I was sent back to do a hearing test, a pressure test of my ear and a vertigo test was done.  All were passed with flying colors.  A CT Scan was ordered since he did not have the Urgent Care’s x-rays. 

Four days later I had my scan and went home to await the follow up appointment the next week.  My pain was gradually increasing all the while.  The pain was increasing all the while and was so intense that one night I woke up and all most vomited instantly from the pain.  Another time it brought me to my knees right in my own kitchen.  Another day I was at Target getting something for my kids and I had to stop and sit on a lower shelf to deal with the pain until it subsided and I could go home.

A week after my test I went into my ENT to review the results.  He came in and immediately asked if my pain was more on the left or right.  I replied the left.  He responded with, “It’s best if I show you the results.”  I looked at his laptop and he went over the paper report.  He told me that the paper report had two different results.  In other words, there was a typo.  I watched the image of the results and it showed two polyps in one of the sinuses.  It appeared to be on the left.  I was excited.  Then he told me that CT scan results are like mirror images not as if I am looking at the patient.  It was definitely on the right.  NO!  I was very upset that this was not the cause of the intense pain nor could it be residual pain.  He numbed both of my nasal cavities and performed another procedure to scope further in.  He easily saw it on the right.  I was thankful we had discovered this and was told we will need to biopsy and operate soon.  I was given a max of 3 months to continue searching for answers.  We needed to have a biopsy to make sure they are benign before removing.  I have yet to have this surgery. 

I was suggested to see an OMFS, (Oral Maxillofacial Surgeon,) for possible TMJ.  I came home blessed, scared and frustrated.  I immediately called my PCP, (Primary Care Physician,) to establish myself as a patient.  I also called in a second opinion with another ENT the day after my PCP appointment to make sure there wasn't anything missed.  Now I just had to wait… 

A bit of relief from pain

On the night of February 1^st, I was sitting on my bed folding laundry and my left eye started to hurt tremendously and swelled.  I massaged it a bit and closed my eyes but the pain did not stop.  What I can only explain as pus started leaking out of the left corner of my left eye socket and a lot of it.  My ear was immediately relieved of pain almost completely!  It went away within the hour and the next day was only a little sore and red.  It was Sunday and I was feeling great!  I told everyone what had happened even if I thought it was gross!!  I wasn't in pain!  It was an amazing feeling!!

As I spent the next week almost pain free…  It started to come back.  Not as strong but enough that I no longer needed pain pills during the day.  My PCP was sick and we had to reschedule the appointment with her.  I went into the 2^nd opinion with another ENT and he seemed bothered that I even came in.  He looked at the results from the CT scan that I had on disc and numbed and scoped me as well.  It was on the right.   He suggested I talk to my PCP about a CT scan or MRI of my head and neck and to see an Ophthalmologist as well.

My eye still hurt for a while and I was still having random sharp pain in my left ear.  I also had a very achy body and my joints were beginning to freeze up a bit, especially in my knees.  My first visit with the Ophthalmologist was all about the pus.  She said it must have come from an infected oil gland or an eye lid cyst that burst and I must have been mistaken.  I was so upset.  I actually SAW the pus coming out of my eye socket.  I left frustrated but used the eye drops and wipes prescribed.   I returned to her a week later and said that nothing had changed.  I still had pain on the left side of my head and we needed to eliminate any optical problems that may be present.  She finally listened to my history and that I may have an optical pseudo tumor but we need to find the underlying cause if this was it.  A MRI was ordered and I would be called immediately when the results came back.

Finally a doctor who listened

My pain was returning faster than it came before and I finally was able to see my PCP and establish myself as her patient.  She saw my malaise and listened to my medical history as well as where I had been the last year.  I told her where I stood with the other doctors as well.  She said that she wants to see what the MRI shows and once I've exhausted that she suggests an MRI of my brain and whole head.  Then maybe see a neurologist.  If that is exhausted then she suggests going to the Mayo Clinic in Arizona because they have better resources to find out what was going on.  She also told me that I shouldn't worry and they can find what other doctors can’t.  She also wanted blood work done with full fasting.  I was also told that once I received the MRI results to schedule an immediate follow up and if it wasn't possible to leave her a voice mail and she would get me in.  I maybe have Fibromyalgia, Chronic Fatigue Syndrome, Lupus, or Rheumatoid Arthritis.  I was relieved to finally have someone helping me in my journey!  It was a huge relief!  She really wanted me to be better.  To have a “game plan” even if it changes was a huge weight and worry off of my shoulders.  Now, I just had to get this “Mayo Clinic” off of my mind…

I went back in the morning with my youngest for the blood draw.  I fasted, nothing to eat or drink since the night before.  I arrived at 10am and was called back immediately. I was stuck twice in the right arm but my vein kept moving.  I was already faint from all the pain, stiff joints, and lack of sleep.  They tried my left side and it immediately took.  Filled 8 or 9 vials, some big, some small.  During the last 3 vials I became faint.  I warned the lady but at the last one I had to sit back.  She finished and I lost it.  I could hear them but I could not respond.  My body was heavy and so was my head.  I almost passed out.  They had to sit me up and then looked for an ammonia stick.  They found one in another room and gave me a sniff.  BAM!  That did it!  I was jolted right back but then I threw up.  I couldn't stop throwing up to take a deep breath so they put alcohol on a gauze pad by my nose.  It helped.  I eventually felt better and stayed in the chair for a while.  I then moved out to the hall and my youngest sat beside me making sure I was OK.  She had seen the whole thing.  She was almost 4 at the time.  Poor girl.  My doctor heard what had happened and came by to check on us.  She is so caring.  I am grateful to have her as my doctor.  She even talked to my youngest a bit. 

Since then I did not have an appetite.  Shakes are the only thing I can tolerate, mostly with bananas, strawberries, Nutella and peanut butter.  At this point in time I had learned that my dear friends’ mother was diagnosed with stage 4 cancer in her lungs and liver.  After a round of chemo that produced little results they had decided to enjoy the rest of their time together.  It hit close to home and with not knowing what was going on with me I had a hard time that week.  I couldn't imagine what my friend was going through.  I decided that no matter how bad I felt inside that I had to be a part of the world again. 

While waiting for test results from both doctors I was able to see my optometrist and he used a retinal eye camera and everything checked out OK from my exam.  The next day my PCP’s office called me and said my white blood count was low and she is not sure if it is related to my symptoms.  I am being referred to a hematologist for further testing.  I would get the referral in the mail and then I can call to make the appointment. 

The first mention of Lyme

Later that day or the next day, (I cannot remember when,) my PCP’s office calls back and says that I am not seeing a hematologist anymore because I had a funny Lyme test.  I was now being referred to an infectious disease doctor and would get that letter in the mail so I can make the appointment.  LYME???  My first reaction was, first, I had no idea we ran a Lyme test.  Second, what the heck is Lyme?  I knew I had a family member with it and I only knew a little about it.  It wasn't a discussed thing so I never asked questions and stayed out of their business.  I was in Target at the time.  I stopped and sat down in the isle I was in and called my husband.  I didn't know what to think! 

After telling a few friends and family members about the test result and referral I heard the first comment about Lyme that started it all…  “I know someone who has died from Lyme.”  Excuse me?  WHAT did you say?  DIED?  I better research this… and boy did I.  Apparently a lot of people have.

A few days later I had my MRI done of my eye, with and without contrast.  I was so exhausted that I fell asleep during both 45 minute tests!!  Even with all the loud clicking, humming, and buzzing of the machine.  I went home and waited for the results from that test.

Two days past from my MRI and my ophthalmologist herself calls me with the test results.  I had a 7mm round hyper Intense T2 signal lesion in the left posterior nasopharynx; likely representing mucus retention cyst.  Also there was mucus in the left sinus cavity and suggests sinus-itus. She is faxing the results to my ENT for further review.  I set another appointment with my ENT and waited for that.

In the mean time I see my dentist and do a full work up of x-rays and he checks for cancer in my mouth.  Everything looked great.  I STILL have not had a cavity and my gums, teeth and roots all look great.  I receive a referral to an Oral Maxillofacial Surgeon and wait for that referral.

Appointment with the ENT proves nothing to be connected to the pain and the cyst will be addressed when the polyps are removed. 

A misdiagnosis of Lyme?

I finally receive a referral to an infectious disease doctor.  I inform the case worker of my situation and we have all my blood work faxed to their office.  She put together my case to present to the doctor and would call me the next day.  It was almost a week later before I heard anything from the infectious disease doctor and I had to call them myself to get a hold of them.  The case worker told me I do NOT have Lyme disease.  I cannot be seen.  WHAT?  The doctor didn't even see me?  So I call my PCP office and ask them to inform my doctor of what was said to me.  I get a call back from the nurse telling me that my doctor is livid.  How could the doctor dismiss my case without even laying a finger on me?  She wants me to get a second opinion and that I may have some form of infectious disease that is causing all of my symptoms.  Another referral was in the mail for me.

For almost 2 weeks I wait for this referral for the infectious disease doctor as well as the one for the OMF Surgeon.  Nothing comes.  I call my PCP’s office many times asking where it was and finding that the referral department was not on site so I now had to contact another location.  Almost a month later, I finally get an answer back from the staff saying that my PCP doctor wants me to seek out a tertiary care facility like the Mayo Clinic or UCLA.  They were too busy to handle my case.  They were already over booked and she didn’t want me to wait any more. 

I got on the phone with my insurance company and asked about tertiary facilities and there were none in Nevada.  Everything would be out of network or not covered at all.  We were going through a rough time financially and this was horrible timing.  After discussing my circumstance with my husband we decided to try another PCP who may not be as busy.  I loved my doctor and it was sad to see how busy the office was.  So, I called insurance and switched to re-establish with another doctor.  At this time I also had to call my dentists office after not seeing a referral in the mail for a month and a half.  I finally got the information from them and set that appointment up.

A second opinion

My PCP appointment finally came and I asked for a second opinion.  He pulled the blood work from the other office and came back into the room.  He didn't ask any questions but immediately said, “You have Lyme.”  For a whole month I thought I didn't have it.  Now I do?  I told him what the infectious disease doctor said and he asked for proof of it.  I told him that I was notified over the phone that I did not have Lyme and he would not see my case.  My second PCP was confused.  He said I didn't qualify for being positive by the CDC standards but I had an anti-body band that is from Lyme.  There are no false positives, just false negatives.  He discussed nothing further with me and referred me STAT to a different infectious disease doctor.  So, I confusedly waited for this referral… in the mail.

In the meanwhile I continue with the OMFS referral and finally have to call my dentist’s office to get the information so I can make the appointment.  Based on my situation they got me in pretty quick.  I arrive at my appointment and the OMFS did a very well history and check up of everything.  More x-rays and a visual examination were done.  He said that everything on the x-rays looked beautiful!  My jaw was popping a bit but I was ordered on a soft food diet for a month to see if symptoms improved.  (They did but not in my ear.)

Finally a doctor, or two, who will treat me

It took almost another month from my second opinion with the PCP to get my referral to an infectious disease doctor.  I was originally referred to a hospital’s ID doctor but since I was never a patient there I could not see him.  I had such a problem getting the referral that once I finally acquired the information over the phone I didn't believe it.  Finally… I see the Infectious Disease doctor, Dr. D. Shah, and he wanted an expensive test ordered to check for Lyme.  It was a quick 5 minute appointment with nothing discussed other than a quick overview of Lyme.  At his point I was well informed about Lyme disease and my husband had been briefed as well.  We both watched the movie “Under Our Skin” and it opened our eyes to the controversy surrounding Lyme.  I researched BOTH sides of the argument and checked my sources.  I was not happy that this ID doctor wanted to only test for one thing.  No, co-infection, no secondary infections, not even to check my immune system or blood work. 

I was upset by this and so was my husband.  We went home and decided we would give another Lyme facility a try.  We found Envita Medical Center in Scottsdale, Arizona.  It was the closest although expensive.  We weighed our options and felt that at least we would have a second opinion and be able to make a better decision about treatment.  I had an appointment set for 2 weeks from the date and I had that much time to raise money for testing.  So I started my GoFundMe.com web page.  I posted about my situation and hoped for the best. 

Symptoms past manageability

In the meantime I was still in pain.  My brain was constantly foggy and I had trouble articulating sentences.  I had memory loss and would get lost driving around a city that I grew up in for the last 35 years.  I was sensitive to light and wore sunglasses inside as well as out because I had to live in a dark room in order to make the migraines stay at bay.  I was unable to watch TV, use my phone or computer with our sunglasses, too.  I also could not stand noise and my kids always had to be quiet in the home and have all volumes at a low setting.  They had to play in their rooms or quietly watch a movie while I lay with them on the couch.  I had chest pains and frequent heart palpitations that were strong enough to make me stop breathing for a few seconds.  My joints were swelling with pain and some days I could hardly get up to go to the bathroom alone.  I was missing out on a lot of things because I just couldn't get my body going from the stiffness and pain.  I could barely eat and when I had an appetite I couldn't eat much.  I was losing muscle tone and adding size to my waist.  I had extreme fatigue, so much that I couldn't get out of bed and my husband would have to take care of everything.  He had to stop traveling in order to take care of me.  This meant a huge cut in pay for us.  I was having fever and chills often with night sweats.  I had numbness all over my body at different times.  I was having migraines and had a constant headache every day.  I would have spinning bouts where I felt as if I was falling.  I would have to hold onto something or someone to grasp that I was not falling.  I already was on anti depression pills, two in fact, and yet I was still having anxiety attacks where before I didn't.  I also would have irrational rage, which I thought was from being in constant pain…  It was maddening, remember?  I had extreme intolerance to hot or cold… Cold being the worst to deal with.  I was taking naps once to twice a day and now have no problems falling asleep because I was always tired.  I would sleep in the car pool lane, standing in line at the grocery store, at the doctors, eating a meal, at the dining room table, sitting on the floor with my kids, in mid conversation with someone while listening to what they were explaining… talking on the phone was the hardest.  It was somehow soothing and I would drift away or fall asleep talking to someone over the phone.  I felt so bad!  It was embarrassing!   

The worst part of all this was that my symptoms were different and could change day to day, hour to hour even down to the very last second!  My ability to function was never the same and I felt completely at a loss of control.  How could I prepare or plan anything if I couldn't predict how I would be that very moment or in a few days from now.  People would see me and say, “WOW!  You look great!  You must be doing better!”  I would smile and reply that yes, right now I was… for the moment.  Inside I just wished I could explain it all but it would take too long and I had no desire to bore others with my “Debbie-downer” responses.  I wanted to be happy and be the friend that everyone could count on!

I felt so alone even though I had a lot of support around me.  I couldn't imagine not having them.  I vowed to help others feel and know that they are not alone and to NEVER give up no matter what they are going through.  They are worth the fight.  We all are.  If combing your hair or getting out of bed, or putting food into your mouth was your extreme hurdle to overcome then it was OK.  It is OK to be not OK.  It is OK to slow down and focus on yourself.  For me this was a change that was hard to accept.  I was forced into this alternative dysfunctional lifestyle and I did not like it.  I kept wondering what the doctor at Envita would suggest, what the test results from Envita would say, and what my future would hold.  Waiting was so hard at this point.  I was sick and tired of waiting. 

Help at Envita Medical Center

Finally I was in Scottsdale, Arizona and meeting with Doctor Oertle.  He was great and I completely understood everything he was talking about.  We met for 2 and a half hours!  He addressed my scoliosis and explained how it could be affecting the Lyme.  He talked about the disease, bio-films, metal toxicity, chronic fatigue, vitamin deficiencies, cyst formations, herxing, PICC lines verses a Central Port, Ozone therapy, Infrared saunas, Oxybosh which is a blood cleaning procedure where they pull blood out, clean it and add oxygen back into it.  It was a lot to take in but I had researched this all before coming so I was able to keep up with the conversation and understand how the discussions applied to my treatment plan.  My husband was a bit overwhelmed.  I don’t think I prepared him enough. 

We went to lunch and upon returning I stayed with them for another 2 and a half hours with his assistant going over the doctors notes, protocols, tests that we would be performing, (there were 20 blood tests ordered.)  A plan was created based on Lyme only and we would have to wait for the results in about 2 to 3 weeks.  She showed us how much it would cost to receive treatments… $58, 000.  Payment was due every Friday making an 8 week treatment course of about $7,000 due every Friday.  SERIOUSLY??!!  I heard they were expensive but sheesh!  I would have to find a way.  SO, 22 vials of blood were taken, 2 IV bags were given to help with a urine metal toxicity test, and 3 other tests were sent home with me to complete over the next week.  I crashed back at the time share we stayed at from sheer exhaustion from the day’s excitement.

Fundraising for treatments

We knew we were going to find a way for me to be at Envita.  It was the right place that would look at my recovery as a whole and would help me out no matter the test results.  So we finally returned home to North Las Vegas and waited again.  This time with some relief that something was moving forward.  I decided to start a Video Diary on YouTube and publish my blog to not be private anymore.  I also started a Facebook page about my new Lyme Life.  I wanted to share my journey so that one day someone would find my information and just maybe it will help them.  I also needed a place to keep my thoughts so I wasn't always bugging my husband.  I also tried to find a way to raise more money.  I became too sick to keep it all up.  I wished I felt well enough to run my own fundraiser.

Finally the results were in but I could not get them from the doctor until I made a final payment on the tests.  Thankfully my fundraiser acquired enough money to pay off the $1,500 difference.  It was a huge blessing and I was able to set up a phone consultation with Dr. Oertle.  He went over EVERY test… explained what they were for and the results in detail.  I posted about the results that showed anything significant and what they meant on another entry found here:

http://melissaslymelife.blogspot.com/2014/07/and-results-are-in-folks.html

We kept an ongoing list of everything that was discovered and made a plan.  I would just have to await his final treatment plan personalized specifically for me.  In the mean time I really had wished it wasn't Lyme because it not only was a good thing to be Lyme free but it was such an expensive treatment plan.  

$58, 000!!?!!

A new way of living

So Lyme it is… My new life had just begun, although I never quite found out when it all began.  The more I researched it the more I was convinced I had been bitten earlier in life.  All of my adolescent to adulthood problems would make sense now if I had contracted Lyme years ago. 

My husband and I decided to start part of my treatments locally and went back to Dr. Shah’s office for his opinion.  We were blessed to meet with his PA, (physician’s assistant,) Stephanie Wallace.  She went over all of my test results and made a plan to address everything on the list that they could.  Treatment will need to be adjusted each week depending on how I reacted to the medications.  I was sent to the back to have a PICC line inserted into my arm.  It allowed any medication to be sent directly to my heart and pumped throughout my whole body quickly and efficiently.  It also was nice to have since blood could be drawn from the same line.  What a relief to not be pricked and stuck in my arm anymore! The same day I went straight to the infusion room and began my first IV Rocephin drip and received PICC line instructions.  I was warned from my PA that the first week I would be sleepy from the antibiotics, the second week will be tougher and the third week, well, if we can just get me through that then I will be on my way to better health.  “On my way… to better health??”  What was I going to go through? 

I learned about herxing from various web sites and books.  This information I took from Wikipedia and is the best way to explain it in “English”!  The Jarisch-Herxheimer reaction, (or herxing for short,) is a reaction to endotoxins released by the death of harmful organisms within the body.  Typically, the death of these bacteria and the release of endotoxins or lipoproteins occur faster than the body can remove them.  It usually manifests within a few hours of the first dose of antibiotics as fever, chills, rigor, hypo-tension, headache, tachycardia, hyperventilation, vasodilatation with flushing, myalgia, (muscle pain,) exacerbation of skin lesions and anxiety.  It can also increase all the symptoms you are experiencing since the bacteria die-off releases all the toxins that are in its body at once instead of gradually as when it was alive.  The body just cannot handle it alone.  This is why helping your body detox is SO very important.  Infrared saunas, Epsom salt baths, ozone saunas, drinking LOTS of water and many other things can help the Herxing to not be so violent.  Sometimes no matter what you do the herxing is just too great.  It soon fades away after a few hours and then you start all over again the next day… Day, after day, after day… Week after week, after week… For months.  It never stops and each day is different.  From here I have more blog entries that can be looked at about my journey through my “band-aid” approach at treating my Lyme symptoms until I could afford Envita. 

A blast to my past

SO!  Going back to my past and wondering when I really contracted Lyme.  I may never know but I can see how it would explain all of my other issues I have had for over two decades.  20 years of doctors, hospital visits, urgent care visits, sicknesses, depression, anxiety, chest pains, hypoglycemia, memory problems, unable to focus, headaches, migraines, abdominal pains, and constant problems with my aching body, especially my back, knees, and hips.  I found out in August of 1999 that I had Celiac Disease.  Nothing was out there about eating gluten free and I had to figure it out myself.  It took years of trial and error and rediscovering my disease almost 5 years after my initial diagnosis.  I finally was feeling better, but not all the way.  I still had a lot of symptoms and they were still weighing on my quality of life.  I just kept going on and dealt with the fact that this is as good as it was going to get.  My husband and I joked that I was always “broken” and he still loved me either way.  I was HIS broken wife and would stand by my side always. 

Now that I had a NEW disease diagnosed it answered all the other symptoms that I was still experiencing from being gluten free for over 10 years.  And yes, I am very cautious about cross-contamination, eating out, kitchen contamination, and everything that goes into my mouth.  I don’t even lick envelopes for the gluten that is in the glue used to seal it together!  

Since my symptoms started in full force back in October I researched about how this could be possible if I wasn’t bit that night on the mountain.  Lyme can take on symptoms in full force or be asymptomatic for months, years, or even decades later.  This astounded me!  How?  The bacteria remains dormant until the immune system drops low enough for the bacteria to take over and then it does its horrible magic on the body.  A car accident, birth of a child, death in the family or of a close friend, freezing temperatures, and certain infectious diseases or medical conditions can lower the immune system.  AH HA!  Freezing temperatures.  That is what I experienced that night.  I chose to stay up and help another family set up their tent when they arrived late and then went to warm myself up by the fire of our friends camping site.  (I also melted the tips of my walking shoes that night!  Never place flam like shoes near a heat source…  THEY WILL MELT!!  Ha ha!  I had to reshape the insides just to make them fit again!)

I brought all this up with my Nevada doctor, I mean PA, and she said that only time will tell.  If I went through the 4 to 6 week treatments and was still having symptoms then I maybe contracted it earlier in life.  It was a relief to know that all of these symptoms were not “all in my head,” that I was not a hypochondriac.   I was not imagining all of these symptoms.  They were real to me and finally it all made sense.

My progress so far

I have now finished 6 and a half weeks and have been off of IV Rocephin for a whole week tonight.  I can tell you that I can see a huge difference from how I was just 2 months ago.  Although I still have a lot of symptoms.  I still have to preserve energy for larger events or bigger tasks, I still have headaches and ear pain, and I still have very stiff joints including my knees and legs.  My back and hips combined with my knees make it hard to walk but I can do it much better than before.  I still have chronic pain but I am able to manage it with rest, staying away from dairy, (and gluten,) and stretching a lot.  My brain fog has improved and my memory is better.  I still have issues remembering things but I don’t give myself a hard time about it anymore so I move on quickly and correct myself… That is if someone else doesn’t correct me first, which happens a lot! 

I meet with her again tomorrow to see where to go from here.  I have had my PICC line for 8 weeks now.  I may get it out and start oral antibiotics and just maintain until I can get to Envita next year.  Although I am nowhere near my old self I can handle this until I get full treatment.  Time will tell!

I can only hope that my Lyme story will help explain what I went through this last year.  I have been unavailable for the most part to my family, friends and to my callings at church.  It has left me with zero social life and has shown me who my truest friends are.  I am eternally grateful for everyone who went along with me on this journey and who stuck by my side even through their own trials.  I am very blessed… blessed to be born in a day and age that has the resources readily available for me to learn about my disease so I can be an advocate for my own health.  Who knows, maybe someday I can help others based on my experiences.  If I could save even one life from this horrible disease then it would all be worth it.

A testimony

I am thankful to be who I am and where I am at today.  I am thankful most of all to have the gospel of Jesus Christ in my life.  Many days and nights I relied on priesthood blessings to help ease my pain.  I would have blessings for healing, comfort or just because I was having a hard day.  I know this is what got me through all of this.  My Savior, Jesus Christ, was there by my side through it all and I know from revelation to me through the Holy Ghost that I was not alone, that I mattered and I was to fight this.  I am thankful to be a Latter-day Saint and for the choice I made to be baptized when I was 18 years of age.  For being eternally sealed to my husband and children in the house of the Lord, our beautiful Temple on the hill.  I am thankful for all the callings I have had at church during this time.  It gave me a reason for distraction and a way to continue serving others.  I have learned a lot about leadership through being president of our amazing primary children.  I am only as good as my counselors, especially when they have carried the load of responsibilities while I was away.  I have learned delegation and to let others do their job without hovering over them.  I have learned how to accept service when it was so hard to receive in the first place.  It does not mean I am weak and I now know it take a village to raise a child.  Everyone I serve with impacts the children in many different ways.  I have learned that I must always fulfill my callings to my best ability in order to be the instrument in Gods hand that he wants me to be.  I must reprioritize what is really important in life and to see the eternal perspective of things. 

A serious pep talk

I know I will always have room to grow and will have set backs but I can reread this and move forward again with perseverance.  Every moment of losing your cognitive abilities, losing functions of your body, being in the loneliest and scariest places in the depths of your mind, no one by your side telling you it will be ok or I am here, just laying around and wondering if this is it, if this is what kills me and if not then why not die to alleviate the pain…….

Unfortunately you have to get worse before you get better with Lyme.  Herxing does that to you.  This rollercoaster ride is not easy but with the Lord I can do all things.  I will beat this and so can you.  No matter what you are going through know you are never alone.    Know that this too shall pass and even though I know nothing of living with late stage Lyme for years upon years…  I know that every life is important.  No matter how you feel inside.  Progress is progress… mentally, emotionally, physically and spiritually.  You must look at healing yourself as a whole being and not just the physical symptoms.  Address the emotional side through a friend, counseling or just meditating.  Address the mental side through education and awareness.  Address the spiritual side by speaking to God.  Talk to Him, He is there.  You were given life’s trials not as a punishment but as a way to choose what path in life you are heading that will lead you to the kingdom of God.  This life is not our final destination and our rewards in the hereafter are unimaginable.  The blessings of your diligence in all things will come in abundance.  You will feel the greater love of God.  I testify this to you and want you to know that Jesus Christ our Savior loves you.  Our Father in Heaven loves you and you too can have his constant companion in your life.  The Holy Ghost can comfort you and bring you great knowledge of things that only a clear mind and contrite spirit can understand.  In times of chronic illness is where we are closer to God.  We call out to him for relief and understanding.  He is there.  Just listen and find his words in his scriptures.  It will guide you and be a light in your darkest times. 

You can get through this. 

Just hold on. 

Love,

Melissa Severance