Lyme 101

*Disclaimer: I am not a doctor, and this blog post is not medical advice. Seek professional help (from a Lyme Literate Doctor) if you think you have Lyme disease.

** I am a private person.  I am only creating this blog because I feel that the Lord wants me to do so.  I will be completely genuine and honest by writing this without regard to who the reader is... whether they be my best friends, medical professionals, atheists or the NSA.

Lyme Terms:
Spirochete: A flexible twisted bacterium. 
Herx: The Herxheimer reaction, aka "Herx", is described as a temporary increase of symptoms (or temporary development of new ones) when the spirochetes are killed by treatment and release a toxin.
Lyme literate doctor: A doctor who has educated him/herself about Lyme disease and co-infections.  Because of the controversy in the Lyme world, LLMD's do not advertise as being such.

Lyme disease can be really awful.  It affects everyone differently.  Some people will get a "bull's eye" rash, and some will not.  Only half of people ever remember seeing a tick.  Some will have it progress to the point that they can't walk, it may affect their brain to the point that it disturbs their speech.  Others may just have light and noise sensitivity, dull headaches, or ringing in their ears.  Everyone is different... please know this.

One part about Lyme disease is the fact that you don't look sick.  I can usually fake that everything is fine and life is good, but the truth is that there are some days that I am barely functioning.  I know that this is an experience that Lord wants me to have, so that I can be stretched, grow and help other people.  It is through the enabling power of His Atonement and the love from my family that I am able to keep moving forward.

Another reason for creating this blog is to give people ideas of where they can turn for help.  When my family doctor told me that my labs came back positive for Lyme disease, he suggested I make an appointment with an Infectious Disease Specialist.  I did make the appointment, and afterwards I felt uncomfortable with that decision.  I didn't know what else to do.  My sister-in-law put me in touch with a friend of hers that had Lyme for 20 years.  We spoke over the phone, and she helped me tremendously by providing information about the different helps that are available.  I canceled my appointment with the Infectious Disease Specialist and felt a lot better about going a different route.  Feel free to email me at lymeanite (at) gmail (dot) com with any specific questions.

List my symptoms: 
*in order of most frequent to rarely occurs*
-aching joints (knees, ankles, elbows, fingers, wrists, hips)
-constant dull headache
-confusion
-inability to multi-task
-brain fog
-exhaustion after doing simple things, like walking up the stairs or standing too long
-memory loss
-constantly lacking energy
-low blood pressure
-racing heart
-hoarse voice
-blurry vision
-flu-like symptoms
-inability to drive at times
-a little bit of depression (probably is kept to a minimum because I have been on depression meds for 13 years... it helps me be "normal")
-pin-prick pains
-clicking joints
-anxiety
-itchy skin (usually at night)
-muscle twitches (usually in legs at night)
-muscle aches
-night sweats
-burning sensation up and down legs
-air hunger

While educating myself on the disease, I read The Top 10 Lyme Disease Treatments by Bryan Rosner, Why Can't I Get Better? by Richard I. Horowitz, and watched the documentary Under Our Skin.


Watch full documentary HERE.

I am currently under the care of Dr. Andrew Petersen.  He has been fabulous, and I highly recommend him.

Karate Chop (Diagnosis)

I remember my Mom and Grandma Millie telling me about a talk Elder Neal A. Maxwell once gave that talked about the "karate chops of life"... when our circumstances seem to change in an instant.  One of those karate chops happened on Oct. 12, 2009 when my Mom called to tell me she was terminally ill with cancer.  Another was April 27, 2013 when Scott was in a dirt bike accident.  Here is the timeline for the latest "chop"...

May 7, 2014 - I got the Tdap shot in preparation of attending Girls Camp in the summer.  We were headed to a Scout Camp, and they require that those attending be all current with their shots.  I wasn't sure the last time I had a Tetanus shot, so I decided to get one.

May 12, 2014 - I started feeling aching in both of my knees.  I thought that maybe I had done some weight lifting exercises wrong and strained them somehow.

May 13, 2014 - I felt aching in my ankles.

May 14, 2014 - The aching had spread to my elbows, hands and wrists.  I started getting really scared.  I did some research online and found that other people had aching joints a few days after receiving the Tdap shot.  I was beginning to think that the shot had poisoned me somehow.  I asked Scott for a priesthood blessing.  He told me that "through the power of the Atonement I would be made whole.  I will fill my heart with gratitude for Heavenly Father and Jesus Christ.  I will exclaim to those around me how great and good They are."

May 19, 2014 - I saw my family doctor.  He seemed quite perplexed by my joint pain, and he ordered a bunch of blood tests.

May 23-26, 2014 - We spent the weekend at the annual Memorial Day Breakfast in Oak City, Utah.  I could not stand for too long without my legs feeling like they were on fire.  I was extremely exhausted.  My brother-in-law called in a 3 day prescription of prednisone for me.  I don't think I could have made it through the weekend without it.

May 27, 2014 - I got a call from the doctor's office asking me to come in and discuss the results of my lab work.  He told me all of the lab tests came back in the normal range except for Lyme disease.  He just happened to throw that test in at the last minute thinking it was highly unlikely that it would come back positive.  He kept saying, "You could have blown me over with a feather" ... meaning he was so surprised that it was positive.  He asked me if I had traveled to the east coast lately.  I had been to Maryland last November, but I was mostly in a hotel and in meetings.  It didn't seem likely I had contracted Lyme there.  My best guess was that I contracted the disease while in Zion National Park or Snow Canyon for spring break (April 8-13).  I remember having a dull headache and mental confusion for the past month.  On April 15th, I wrote in my journal "It was 1:30 in the afternoon when I realized that we had not mailed in our state taxes this year.  I honestly worry about my brain sometimes.  I feel that I already have a minor form of dementia.  I certainly can't think as quickly as I use to."

The Tdap shot must have overloaded my already taxed immune system and made the symptoms flare up.  I am actually glad this happened, or the symptoms would have slowly increased, but not enough to alarm me to go to the doctor... things have to be pretty bad before I take myself in.

The doctor called in a month prescription of Doxycycline and suggested I make an appointment with an Infectious Disease Specialist.



May 28, 2014 - I wasn't feeling very well... mostly nauseous and tired.  I was also more emotional about the diagnosis and what it might mean.  I made an appointment with an Infectious Disease Specialist.

May 29, 2014 - My sister came to visit and brought flowers.  It was very therapeutic to be able to visit and have her near.  I felt like she was sent on this errand by Mom.

June 1, 2014 - My Dad gave me a priesthood blessing... "As I seek guidance from the Lord, He will lead me in the direction I must go to heal and eradicate this disease from my body."

June 2, 2014 - I spoke with my sister-in-law's friend about her experience with Lyme disease.  She didn't really know she had Lyme until she completely collapsed 4 years ago.  It turns out that she had had it for about 20 years.  There were times when she would be driving and black out for a moment.  She would often completely forget her 4th child when she was a baby... leaving her in the crib while going somewhere, etc.  She is amazed that they even survived.  She went to see Dr. Jason West in Pocatello, Idaho.  It was really good to talk to her and get some information.  I canceled my appointment with the Infectious Disease Specialist and made an appointment with Dr. Andrew Petersen.

June 11, 2014 - Scott went with me to meet with Dr. Petersen.  It was unlike any doctor appointment I had ever been to.  He sat in the office and spoke with us for almost two hours.  He asked me questions and explained the disease in terms that were easy to understand.  He had the lab take 34 vials of blood to run for various tests.  He put me on Tinidazole and Doxycycline.

Living in a Dream

It's not the good kind of dream, like when I was in Hawaii with my parents, brothers & sisters laying on the beach... good times. *sigh*  It is the kind of dream when you are trying to get somewhere really important, but you keep stumbling over your own feet.  That is what life was mostly like from May to November 2014.

One person explained their feelings of brain fog as being similar to dehydration.  REAL dehydration.  When your body is literally begging you for water and is shutting down certain mental functions in favor of sending water to your vital organs.  Thinking about complex matters becomes nearly impossible.  If I tried to plan ahead, solve a problem, assess a situation or analyze something, my brain stutters, whines and gives up like an old engine on a cold morning.  I may be in the middle of a conversation and forget what I was talking about.  It is as if my brain glitches, goes on "stand by" and then tries to reboot.

I tried to compensate for this by writing down notes about everything, but then I would forget to look at the notes.  If it is out my sight, it is literally out my mind.  Multi-tasking is impossible.  I told Dr. Petersen that I was feeling very frustrated because I use to be pretty smart.

Before this illness, a typical day's activities would be...
Wake up at 4:15
Pray & Read Scriptures
Lift Weights
Ride my bike or go for a 2 mile walk
Shower before the kids got up
Homeschool my kids
Plan the meals
Do the shopping
Clean the house
Work on my stay-at-home accounting business
Nap (I have always loved my naps :) )
Family Dinner
Work on my church calling with the Young Women
Family Prayers & Family Scriptures
Go to bed around 9:30

These lyrics to the song "Beautiful Heartbreak" by Hilary Weeks ran through my mind over and over when I was first diagnosed.  I tried to push them out of my thoughts and say to myself "It's not THAT bad", "I was told I would be healed anyway", "this song is just coincidence".  It has come to mean more and more to me over the months.

Spirochete Spree

July 7, 2014 - I took my kids and nieces to an outdoor pool.  The Doxycycline is making my skin more sensitive to the sun.  I started getting a fuzzy feeling in my throat.  It felt like I had swallowed a hair.

July 14, 2014 - Scott went with me to my 2nd appointment with Dr. Petersen.  He went over all of the results of the blood work:

CD57 - 89 (normal 60-360) It is in the normal range, but the doctor would like to see it about 120.
Serotonin - 21.86 LOW (normal 80-450)
Testosterone - .88 LOW (may be considered normal if I was 60 years old)
Progesterone - .21 LOW (normal .48-1.72)
Thyroid Antibodies - 118 HIGH (normal <35)
Mycoplasma (IGG) - 4.37 HIGH (normal <.90)
Mycoplasma (IGM) - 1134 HIGH (normal <770)
Epstein Barr Virus Nuclear Ag (EBNA) - >5.00 HIGH (Positive is >1.10)

The fuzziness I have been feeling in my throat is yeast.  He put me on Nystatin, which I am to gargle for 20 seconds every night and morning before swallowing.  It's fairly nasty.  The Tinidazole was too expensive, so he put me on are Flagyl, Minocycline and Azithromycin.  I am also on Heparin shots morning and night.

The Nystatin was not helping with the yeast, so he switched me to Diflucan.  This made me more dizzy than usual, but it did not make the yeast go away.  Dr. Petersen told me to go off all antibiotics for one week and take Candinex 6 capsules a day.  That finally made the yeast go away.  I kept on the Candinex and went back on the antibiotics.

It is amazing how awful I feel when I go back on the antibiotics after being off of them for a few days.  It is as if the spirochetes decides to have a party because the parents aren't home. <:-P As soon as the parents get back in town, they kill all of the party-goers which causes me to herx due to the overload of toxins released all at once from the die-off.  My herx reactions are not extreme.  It mostly consists of a worse headache, feeling flu-ish, and more brain fog.

Since the beginning, my awesome brother and sister-in-law have kept me in constant supply of probiotics.  I take them two hours after taking antibiotics each morning and night.

Gratitude

In the past few months, there are many times I have felt exhausted, depressed, scared and confused.  Along with the feeling of exhaustion, I have developed a gratitude for small things such as a nap in the middle of the day, a chair to sit down on, my kind daughter who lets me go to bed early while she cleans the kitchen and starts the dishwasher.  Along with the occasional feelings of depression, I am learning compassion for those who suffer constantly from depression or anxiety, and my heart has softened for those who feel scared and alone.  Along with my own thoughts of confusion, I have gained some compassion for those with memory problems.  I think of Scott's Grandma who just turned 90... She often repeats the same stories over and over.  I love her, and her stories.  Above all, I have been taught more about the enabling power of the Atonement.  I have felt the strength the Lord has been to me in my life.  I think of Matthew 11:28-30 "Come unto me, all ye that labour and are heavy laden, and I will give you rest.  Take my yoke upon you, and learn of me; for I am meek and lowly in heart; and ye shall find rest unto your souls.  For my yoke is easy, and my burden is light."

August 1, 2014 - Scott gave me a priesthood blessing... "As I face the trials ahead, know that God is at the helm.  These trials will help shape my character and the person I will become.  The illness that my body is fighting right now will fully go away because of the care I have given my body these past few years."

I still continued to exercise in the mornings at least 4 times a week and eat healthy.  Although, that usually went out the window when Friday Date Night came around each week. :X

I could usually drive as long as it was not in the late afternoon or at night.  When I was tired, the world would start spinning around me.  There were times that I didn't take driving very seriously... as if I was just playing Mario Kart, and it didn't really matter if I paid that much attention.

October 20, 2014 - I had my 3rd appointment with Dr. Petersen.  I almost started crying in the middle of it when I discussed how I was barely functioning each day.  My mental clarity has been pretty bad, I was tired all of the time, and I could keep the headaches from getting too bad as long as I got a nap and went to bed early.  When I do go to sleep, I seem to go into a coma-like state.  When the kids would come home late, they use to wake me up to let me know that they were home safe.  Now, I keep the light by my bed on, and they have to write their names on a piece of paper and leave it on my nightstand because I am not "wake-able".  Most people with Lyme have insomnia.  I definitely prefer the "coma" over not being able to sleep.

Dr. Petersen put me back on Doxycycline, Azithromycin and Plaquenil.  He also decided to put me on Adderall to help with my mental clarity.

October 24, 2014 - I took my first dose of Adderall 20mg.  I probably should have read the label because I took it at 6:00pm... needless to say, I was wired and up ALL night. @-) I practically finished a whole 1000 piece puzzle.  I was feeling mentally clear for the first time in 6 months.

October 25, 2014 - I decided to take the Adderall first thing in the morning.  I still didn't sleep all night.

October 27, 2014 - I took 10mg of Adderall by opening the 20mg capsules up and pouring half of the beads into empty capsules.  It was the perfect formula.  I felt mentally clear, and yet I still was able to take a nap and sleep well at night.  I felt about 85% my normal self.  I still had minor joint aches and more tired than I use to be, but my body is still fighting a disease so that is to be expected.

When I first went in to see Dr. Petersen, he told Scott and I that the recovery process can be anywhere from 8 months to 3 years.  Now that I was feeling so well, I thought.. "I'm going to be on the 8 month side of things."

November was a happy month.  I went on a business trip to Maryland and had a great time.  It was so nice to be feeling 85% normal.

The Brew

In July 2014, I started having trouble with yeast (candida) overgrowth.  I guess it shouldn't have been a surprise... due to the Lyme, I had been on antibiotics for over a month.  It started as a fuzzy feeling in the back of my throat.  After gargling with Nystatin for two weeks and taking Diflucan for another two weeks, the yeast was still there in my throat.  I stopped all antibiotics and took 6 capsules of Candinex a day.  That finally took care of the problem.  Ever since then, I have been drinking "The Brew" every morning in hopes to keep the yeast in check.  It has been 8 months now, and I have not had any further problems.  I should mention that I take probiotics every morning and night as well.

The Brew Recipe:

1/4 C Boiling Water

1 Tbsp Raw Honey

1 Tbsp Lemon Juice

1 Tbsp Apple Cider Vinegar (Organic)

5 Drops of Liquid Cayenne

3/4 C Cold Water & Ice

Directions:  Dissolve Honey in the Boiling Water.  Add the rest of the ingredients and let the drink chill for a few minutes.  Drink it down. :-&  

I drink this first thing every morning.  I make sure I have something close by to eat right after... banana, peanut butter, ANYTHING...   I use to drink it without the lemon, and that was nasty.  The lemon actually makes it a lot more tolerable.

Remembering Lot's Wife

I have been thinking a lot about Lot's Wife lately... Inspired by the talk "Remember Lot's Wife" given by Elder Jeffrey R. Holland in 2009.  Elder Holland asks "...what did Lot's wife do that was so wrong? ... as a partial answer... Apparently, what was wrong with Lot's wife was that she wasn't just looking back; in her heart she wanted to go back.  It would appear that even before they were past the city limits, she was already missing what Sodom and Gomorrah had offered her. ...Is it possible that Lot's wife looked back with resentment toward the Lord for what He was asking her to leave behind.  ... So it isn't just that she looked back; she looked back longingly.  In short, her attachment to the past outweighed her confidence in the future.  That, apparently, was at least part of her sin."

I have found myself thinking too much about what life use to be like, and wanting to go back to my old life.  THAT IS NOT THE PATH TO HEALING.  It is such an easy trap to fall into... only thinking of ourselves, especially when we are the ones needing so much extra attention at the moment.  I read somewhere that people who spend some time each day reaching out to others who are suffering with the same disease or circumstance, suffer less themselves and are able to heal faster.  I BELIEVE THAT!  I know that my future is bright.  The Lord has great things in store for me, and I need to have the faith to "partake of the bitter cup, without becoming bitter".

I felt pretty good during the month of December.  Christmas is absolutely my favorite holiday, but this last Christmas was different.  I felt at peace when thinking about the Savior and His birth, but I had a hard time getting excited about decorating, gifts, etc.  My feelings about Christmas were definitely "bi-polar".  My heart just wasn't in it, and I felt guilty for feeling that way.  I had no idea that these new feelings were most likely related to the Lyme.

January 5, 2015 - I was filled with anxiety all day.  I didn't really understand why.  I assumed it was because tomorrow would be the day we start back to homeschooling, routines and my daughter's 16th birthday.  I wasn't ready to go back to all of that.  Plus, it is a busy time of year with my accounting business.  Everyone needs their year end finances completed, so they can get their taxes filed before the deadline.

I had my 4th appointment with Dr. Petersen.  My husband couldn't come with me, so I dragged our 17 year old son.  He was ecstatic (:|  I told the doctor that it didn't seem like the Adderall was working as well as it use to.  My mental clarity is really bad,  and I don't trust myself with driving.  I can drive, but it is like having your 80 year old Grandma drive... She can, but should she be really???  He put me on Adderall 10 mg, Doxycycline, Azythromycin, Plaquenil & Bactrim.

January 6, 2015 - Scott gave me a priesthood blessing of comfort and peace: "I will not be healed from my illness right away.  I will learn to rely on the Atonement.  I need to smile, and use all of my senses to enjoy the blessings around me.  I am laying the foundation of a great work."

January 15, 2015 - Rachel has been taking classes to get her CNA license.  She took my blood pressure this afternoon, and it read 92/58.

January 19, 2015 - I did some research to see if Lyme disease can cause symptoms like POTS (Postural Orthostatic Tachycardia Syndrome).  When laying down my blood pressure was 100/70 with a heart rate of 80.  When I stood up, my blood pressure was 110/92 with a heart rate of 94.  Dr. Petersen called me in a prescription of Florinef (.1 mg) for the low blood pressure.

The symptoms that have worsened the past two weeks are anxiety, depression, blurry vision, racing heart, dizziness, fatigue and brain fog.