One Year Of Lyme Disease Treatment Under My Belt

It was one year ago, today, that I showed up in the office of my MD presenting signs of a 8-day headache, fever, extreme fatigue and joint pain so bad I could hardly walk.  It felt like someone was stabbing behind both my knee caps with a knife, every time I took a step.  Eleven days prior, my sister and I had taken a hike in the woods on a beautiful Friday before Labor Day.  I slathered myself in DEET bug-spray because I am a mosquito magnet and will itch for a month if I get just one bite.  At the time, I wasn’t thinking about ticks because we were following a fairly well-kept trail, and I didn’t even know that DEET is no good against ticks- permethrin is the chemical that we really needed for protection, applied on our shoes and clothes.  Butterflies were all around us in the woods, and later I would realize that this was a sign from Spirit that everything would be OK… in the end.

 

Only 2 hours after our walk, I received a call from my sister who in the shower, found a tiny poppyseed-sized deer tick on her leg and a bullseye rash.  She received 2 weeks of antibiotics from a doctor at an emergency care center.  I had no idea that ticks could be that small, and I must have spent over an hour in the shower, washing my hair and looking all over for the blood-sucking critter, to no avail.  No bullseye rash anywhere, either, and no idea at the time that over 50% of those infected with Lyme disease don’t recall getting bitten by a tick or find a bullseye rash.  So, not finding any sign of danger, I thought I had gotten lucky.  At this time, I knew relatively little about Lyme disease, apart from what I had heard on the news about how it is spread by deer ticks and is associated with a “classic” bullseye rash.  Oh yes, and that it is supposedly very rare where I live in the Midwest.  My state of ignorance about tick-borne illness was about to change, and quick!

Those next few days, I remember feeling very tired.  I’ve had fatigue before, so this did not send up any red flags.  However, on Labor Day, I took another walk in another nearby nature preserve.  It’s a path I’ve taken hundreds of times with my dogs, family or friends, around a gorgeous lake near a campground.  But this time, I noticed something strange within minutes of hiking.  A shooting pain in my foot, which I had broken the Summer before, accompanied my every step, so I grabbed a walking stick as a makeshift cane.   That foot really hadn’t bothered me in over 6 months, and for a minute I wondered if somehow I had rebroken it?  About 5 minutes later, both of my knees felt like an ice pick  was piercing deep into the joints, behind my knee caps.  Honestly, we weren’t even halfway around the lake and for the first time on a hike EVER I thought about turning around and going back, because I honestly didn’t think I could make it up and down the hills. 

Somehow, I limped my way back around, probably taking twice as long as normal.  What a relief to finally be able to sit down in the car, whew!  I proceeded to get a headache as soon as I cleaned up and got changed for dinner, putting on a perfume that normally didn’t bother me at all in small amounts.  This time, as soon as I sprayed it, my head started throbbing, and I tried to wash off what I could before we left to find something to eat.  Once at the restaurant, I had no appetite but made myself eat something.  This headache would stay with me for 8 days, when I finally realized that I had missed the tiny tick that must have bitten me between the shoulder blades, just left of my spine.  There was no bullseye or other rash but I itched in this spot for weeks, and for months, it would feel like someone had punched my back right on the vertebrae directly next to the probable bite.

A week and a day later, that following Tuesday, September 14th, I was working at a friend’s house.  Normally, she doesn’t keep her house as cool as I like mine, and I have always gotten overheated easily, so it took me a few hours to realize I was getting a fever and my cheeks were flushed bright red.  I felt “woozy” and when I stood up to tell her I had to leave and call my doctor, when I put it all together.  I prayed on the way out the door that my MD would treat me for Lyme disease even though I had no bullseye rash or tick.  The day before I had read on the ILADS website that 50% of those infected don’t find either one.  Like a sign that I was drawing the right conclusion about my symptoms, two whitetail deer, a mother and baby, were standing out in my friend’s front yard as I walked out to my car.  For a long moment, I stopped and we just stared at each other, knowingly. 

I got to see the nurse practitioner instead of my doctor, and as this was the first time we had met, she was very hesitant to prescribe anything without seeing a bullseye rash or knowing that I had actually pulled a tick off of me.  I begged her, telling her that my sister had both, that I looked all over and somehow must have missed the one that bit me on my back and fallen off before I started itching there, and aching in that vertebrae, which I could feel every time I moved my arms.  I told her about the severe joint pain that was keeping me from walking normally, and the fever.  Also, I had a history of headaches, but never one that was with me for 8 days, steady and unrelenting- there when I went to bed and there when I got up- no matter how much Excedrin Migraine I took.  Reluctantly, she wrote out a script for only 10 days of doxycycline, yet I sighed in great relief.   I thought that would be the end of my worries with Lyme disease, but little did I know, it was really the beginning of my journey and awareness about this much misunderstood illness. 

I went home and started researching Lyme disease on the Internet, and realized that I have had many of the symptoms and common misdiagnoses for decades, since I got my first (known) tick bite on a school field trip to Pine Mountain, KY.  I remembered that on the bus ride back, my friend and I had checked one another’s scalps for ticks.  she found one on mine and pulled it off.  That was the last time I thought about it, and probably didn’t even mention it to my parents or anyone when we got back.  However, that was the beginning of some very dark days & ill-health for me for the next 20 years.  The rest of my senior year of high school, I missed so much school from “chronic mono” I almost didn’t graduate and wouldn’t have had I not had a 4.0 GPA and been the class Valedictorian. 

It was a struggle just to wake up every morning, much less get out of bed and function.  I was severely fatigued, with swollen glands in my throat and neck, always running a fever.  Depression fell upon me and would be a constant companion over the next 2 decades.  I was so ill, the full-ride to college I had worked my whole life for was lost in my 4th semester.  I had chronic insomnia and could not fall asleep at night, until it was almost time to get up for my 8AM class, and then I would practically pass out in my chair.  Professors didn’t appreciate that, let me tell you- my not being able to keep my eyes open, when I would sit in the front row in a desperate attempt to stay awake despite mind-numbing fatigue.  My roommate told me I would sleepwalk over to my alarm clock across the room, turn it off, and go back to bed without waking up.  I had never done that before in my entire life.  So, I started missing my classes, the depression getting so deep I went in for help from the school counselors and campus doctor.  Nobody had any idea why I felt so terrible, and I was forced to withdraw from my classes.  My family had no clue what was going on and maybe just thought I gave up, got into drugs, or who knows?  That just made me blame myself and become more depressed, having let down everyone I cared about.    

Years passed, and I was diagnosed with fibromyalgia and chronic fatigue, crushing migraines, hormonal imbalance, major depression and anxiety, severe insomnia, and had over 50 other different symptoms that doctors could not explain.  I do remember very clearly having an elevated heart rate and WBC that my physician could not explain, but no other tests gave us the answers we needed.  My memory and cognitive function got so bad I was constantly losing things and often forgot the names of my neighbors and people I worked with.  NOT normal for a young person in their late teens to early 30’s.  I did my best to will myself through each day, working as hard as I could to live up to the ideals and expectations of my family, friends, and myself.  A part of me knew that I could only get by on willpower alone for so long, and in 2008 my life came crashing down.  My adrenal glands were exhausted from the stress of being so sick and pushing myself to try & have a “normal life”.  I was not able to work for 8 months, and then hardly at all for 2 more years.

I’m leaving a lot out, but this takes us up to a year ago, when I started the doxycycline, and once I realized I’d had all the symptoms for 20 years, my GP extended my prescription until I could see a specialist.  I finally found an out-of-town Lyme-literate doctor in November of last year, who diagnosed me with not just Lyme but also Babesia, another tick-borne parasite.  I was already overwhelmed dealing with the Lyme, and knowing I had a malaria-like blood parasite as well stunned me even further.  In a short period of time, my stomach was not tolerating the high doses of doxy well at all.  After enduring 2.5 months of extreme GI distress, I completely lost my appetite and felt like I was going to die from the antibiotic treatment.  Candida took over, with my good gut flora completely demolished despite the fact that I was taking humongous doses of probiotics in an attempt to replenish it.  Since my LLMD was over 4 hours away and my finances had been drained in the years I was unable to work, I realized that I had to find another way.  After 2 weeks off the doxy, I relapsed bigtime.  So I prayed for Divine Guidance and within a short period of time, my prayers were answered.  Somewhere on the Internet, in my hours and hours of researching Lyme disease, I had run across people saying that colloidal silver had completely put their Lyme into remission, and years later, they were still well.  I’d used it before, and knew how to make it.  I found Nancy Delise’s MS protocol and followed that, since I knew a lot of MS cases could actually be undiagnosed Lyme disease.

 

In December of last year, I started the CS, and in May I finally got up to the full amount that I am presently taking.  My LLMD told me I may have to have treatment my whole life, since I had gone undiagnosed and untreated for so long.  It would at least take years to put it into remission, at least one month for every year I had been infected.  For me, that would be 20 months, counting from May- February 2013.  Dr. Lentz also said that I’d need to be completely symptom-free for 2 months before she would consider stopping treatment.  So, I’m in it for the long-haul and know I must be patient.  My symptoms are much better, but I’m not 100%.  Some days are better than others, but that’s to be expected.  I know that I didn’t get this way overnight and my body needs time to heal.  I may never be “cured”, but I do believe I’ll be in remission, someday.  Colloidal silver has been a Godsend so far, reducing my pain levels by at least 80-90% on most days. 

After thousands of hours of research on the Net and in Lyme disease support groups, I know that this is an illness that builds faith and requires hope.  God is by my side, and I talk to him every day.  Our relationship stronger and closer, now.  I remember Jordan Fisher Smith in Under Our Skin saying he didn’t start to feel “normal” until after 3 years of IV antibiotics.  Now, he is doing better.  And I’m doing better.  Every day here, is a gift.  Every day I am able to work or get out of bed unassisted is a true blessing…  I’ve found out who my true friends are, that they are few, and very, very precious.  I’ve realized that some loved ones and most people don’t understand Lyme disease at all, no matter how much I try and share with them.  I love them, anyway, but it has been really sad, lonely and even heart-breaking at times to not receive support and understanding from the people I care about the most.  At my core, I know no one ever has meant to hurt me.  Ignorance is what is really to blame, not the person.  Lyme has also taught me a lot about forgiveness, including the need for me to forgive myself.  Knowing what I’ve had and been fighting for so long has shed a new light on how I look back on my life, especially the last 2 decades.  I hope and pray that somehow, my pain and suffering can help someone else get diagnosed and treated much sooner than me, which is why I have this blog and share what I find that helps me heal.  Unless God tells me to do any different, this is what I must do to give meaning to having chronic Lyme and Babesia.  Many, many times I’ve thought I wouldn’t make it to the next day, much less the next month or year.  Now, after all I’ve been through, the lessons I’ve learned, and the knowledge and wisdom I’ve gained- in my heart center I know one thing without a doubt…  There’s a reason why I’m still here.

God Bless!

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About Knowlyme

Promoting Lyme Disease Awareness
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