Hidden in the Leaves - Page 1
Disclaimer: I am not an expert, specialist or doctor of medicine trained in Lyme disease, but I have conducted a vast amount of research on the disease. This is my story...
Hidden in the Leaves is dedicated to thousands of God's children who have Lyme disease and/or are co-infected with either Rocky Mountain Spotted Fever of another type of chronic disease. Please, if you are here reading this, you are here for a reason and one of those reasons should be to educate yourself, but most importantly trust in God to guide your way and lead you through this journey. I have conducted a vast amount of research on this topic; however, by no means do I claim to be an expert, a doctor of medicine - I'm just an educator - one who wishes to bring awareness to this illness so others will not have to endure what I have endured thus far.
God chose me to be His messenger in this journey. My job is to warn people about this disease, to educate people as much as I can, and to love myself even though I feel horrible. I still praise God on my worst days. Through God and with God "ALL" things are possible.
The beginning... During the months of April - October 2014 - in all of my years of living in Georgia, I have never seen so many ticks during the months listed above, and we have never had so many ticks come into our home from being on us and from being on our precious animals.
Our former neighbors were leasing their home from a home leasing company. The man who lived in this house cut down a huge number of trees and left them in his backyard in two monstrous piles. Those piles of trees, along with leaves, and what was becoming a decomposing soggy, moistened filled pile of logs was a welcoming home, a breeding ground, a tick habitation, and an infestation for ticks as there are many deer in this area as well as mice and squirrels who also carry ticks and diseases.
I could not approach those neighbors and ask them to please remove those piles of logs for fear of retaliation. All of the neighbors seemed to be afraid of the man who lived there; afraid he would retaliate in some sort of fashion. This man was not a typical, traditional and wonderful neighbor. He was loud, he drank a lot and he was rowdy! His friends were loud and they loved to stay up late playing loud music and thinking nothing of it. They did not respect their neighbors, so for me to go over there and ask him politely to please do away with all those logs would have been like trying to pull a thorn out of a lion's foot.
Just to give you an idea to the type of person the man was who use to live in our neighborhood - when he was inebriated, all the neighbors braced themselves. We would be kept up until all hours of the night hearing racing engines, loud car radio music from where the man pulled his car into the backyard to just do donuts in the grass and blast the radio. We would finally get enough and one of us would decide to call the police so we could finally have some peace and sleep. This rowdy man and his family finally moved and now we are so happy. We prayed for this family non stop and hope they are doing well. Thankfully our nice and quiet neighborhood is back to normal. Thank you, Jesus!!
Nevertheless, once I discovered I had been tested positive for both Lyme disease, (LD), and Rocky Mountain Spotted Fever, (RMSF), I called the leasing company after October 17, 2014 to ask them to PLEASE have both piles removed from the yard. The manager with whom I spoke with said she would get in touch with the right person who oversaw the leasing of that house and make arrangements to have those piles removed. (I remember the date of October 17, 2014, because that is the date my test results came back and that is the date where both LD and RMSF were conclusively positive - straight from a lab here in Atlanta, Georgia. )The lab work is dated October 10, 2014).
The leasing company apparently hired a team of two young men and yet those two men only removed one log pile and left the other pile to rot. Life slipped on by and that other pile stayed there until May 10, 2016. I was admitted to the hospital on Wednesday, May 4, 2016 from having Bell's Palsy and my blood pressure being sky high. I got out of the hospital on May 9, 2016 and earlier on this date I called the CDC to find out more about the types of blood tests I would need to determine if I still had LD and RMSF and I also called the same home leasing company to beg them to get those logs removed! (More about the admission and discharge from the hospital is forthcoming).
In late October 2014, my sweet neighbor, Donna even tried to get the leasing company to remove the other pile and when she spoke to a specific man at this leasing company, he bit her head off, told her he was not going to have those logs removed, and to stop calling him. She stopped calling him. The other pile of logs sat there for almost 2 more years.
Going back to the day my doctor told me I was positive for both LD and RMSF, my family doctor called me at work to give me the devastating news.
"Mrs. Hinkle, this is Dr. _______________. I need to speak with you about your test results."
"Ok. Great! The results came back and I'm negative, right?"
"No. Unfortunately, you have both Lyme disease and Rocky Mountain Spotted Fever."
"Ok. What happens next?"
"I am going to have my nurse call you in a 28 day supply of Doxycycline. Take every pill. This is the only medication that we are aware of that will kill the virus." (Please note here: I later found out that the 28 day supply of Doxy will not kill this disease if someone has been infected for over 30 days).
"Ok. Great. I'm leaving work right now to pick up the medication. Please have Tiffany call in an urgent supply of it, so it will be ready by the time I arrive at the pharmacy." My doctor did this for me.
Prior to leaving the school and after I found out the results of the tests from my family doctor, I contacted the counselor to have her cover my class. I went into her cozy classroom and immediately called my husband at work and said to him, "Leave work now, go home and pick up Tammy and you both go to the doctor to get tested for both LD and RMSF. Both of my test results came back positive."
My husband and I both cried and he said, "You are going to be ok. What else did the doctor say?"
I said, "He said the nurse was going to call in some Doxycycline and I should finish the entire bottle."
"Ok, then you will do that and everything will be ok," my husband said.
My husband left work immediately, went home, picked up his sister-in -law, Tammy, (who was living with us at the time because she had recently had a stroke), and they were both tested and both of their results thankfully came back negative.
As I walked to my SUV, climbed in and started the engine, I sat in my seat for a moment thinking to myself, why am I not worried about all of this? I think I initially I did have some worry, but not like I use to, not like before Christ saved my soul. I know I will beat this! I know God will lead me down the right paths to obtain the help I need. I know He will heal me.
I took every pill of Doxycycline over the course of almost a month - praying the pills would knock this disease out of my body, praying this would be the first and the last part of this disease and I would be fine, praying I would not have any residual effects from either disease.
I initially had an allergic reaction and the doctor's nurse told me to stop taking it.
I said, "Please, Dr. _______________ has already told me that this medication is the only medication that will clear this up. I am willing to take a chance and continue taking it even though I had an allergic reaction."
She begged me not to take it any longer, but I had a bigger plan. My plan was to pray to God I would not have another reaction. I got off the phone with her, dropped to my knees and begged God to help me not have another reaction so I could finish taking this medication. The next day, I prayed more, took the medication, and I did not have another reaction. God is so good!!!!
Donna, our sweet neighbor, had our yard sprayed for us because she knew we could not afford it. We did need to pay well over $400 to have our dogs treated with sprays and collars. We now use Seresto. Having four beloved Alaskan Klee Kai who go outside and needing to buy four collars at a time is not cheap. The chemical in the collars only lasts about 8 months, but the price is worth its weight in gold for less worry for our sweet babies.
Once I completed taking the Doxycycline, I began to notice strange feelings in my elbows, feelings I had never had before. It hurt like crazy to stretch my arms at my elbows and this pain got worse over the course of time. The pain was so horrible on some days that I could barely make the bed. I often thought to myself that because I was getting older, it must be normal to have joint pain in both of my elbows, neck and knee pain, massive lower back pain, hip pain, heart palpitations, fatigue, memory loss, foggy thoughts, etc. so I just allowed all these symptoms to encapsulate my existence and wear me down.
I took Aleve for all the massive pain, tried to get more rest to possibly help eliminate the heart palpitations and fatigue, and tried to concentrate harder to also abolish my memory loss and foggy thoughts. Good days do visit me, but then so do bad days. I love the good days. I also love the bad days, because I the bad helps me appreciate the good so much more and I am alive and I am able to worship my Father, but I just do not feel like myself.
Fast forward to May 3, 2016.
May 3, 2016
During dinner around 6:50 p.m. I noticed I could not move my upper lip very well. I finished dinner, cleaned the kitchen, sent one of the pastors of my church a detailed text message about a yard sale Jeffrey and I thought the church should have this summer, typed up a document pertaining to the yard sale and emailed it to the pastor.
I tried to relax earlier and Jeffrey said, "Do you need to go to the doctor?"
I said, "The doctor's office is closed. Why are you asking me if I need to go to the doctor's office?" I was so confused and it did not click with me that what he was actually saying is, "Do you need to go to the hospital to be seen by a doctor?"
I showered, and laid down for the night to sleep. I prayed to God to allow me to wake up in the morning because I had no idea what in the world was going on with my mouth. Bell's Palsy did cross my mind, but when I had Bell's Palsy back in the early '90's, it was instantaneous regarding the paralysis.
May 4, 2016
I woke up the next morning to get dressed for work and even though a few hours had already passed, I could still speak clearly, and because my husband had already left for work, I began saying to my AKK, Abby, 'something is not right.' Abby, 'what is going on?' Of course she could not answer me,
I drove to work; praying the entire way which is only about 10-12 minutes from our home, and all I could think about is what in the world is happening to me? I was in a daze and I was a tad bit confused while I drove to work and even thought to myself once, "Am I driving the right road to get to work?"
I went on about my morning and could not take it any longer. I went to our sweet, precious nurse by the name of Kim at HCE and asked her to close the clinic door because I needed to speak with her in private. She closed one door, but students are so use to coming into the clinic and not knocking, so a few waltzed right in.
Finally, we were alone and I said, "Please look at my face and tell me if you notice anything different."
Kim said, "Well, I guess it looks different. How do you feel?"
I said, "I feel fine. I'm just worried about my face."
Kim said, "Let me take your blood pressure." She did and it was 124/92. I was diagnosed with having high blood pressure as a teenager and this was one thing that prohibited me from being awarded to be on the basketball team in school since I was on medication.
Kim said, "You need to go the doctor."
I said, "I will go just as soon as I get Tracy to notarize this document." I went into the café to find Tracy, found her and we proceeded to her office after I told her I was going to the doctor because something was wrong with my face. I broke down in tears and sobbed like a baby when she said, "It is probably just Bell's Palsy and you are going to be just fine. God is going to take care of you. Don't you worry about anything."
At this moment, I was petrified. I had allowed the devil to scare me. I fought to rid myself of the fear and just trust in God. At the very moment of thinking that to myself, Tracy said, "Awww baby don't cry. Can I pray for you?"
I said, "Of course you can."
Tracy got up from her desk, walked over to me, and we put our arms around each other and she began her prayer by saying, "Dear Father, wrap your arms around your daughter, bring her comfort and peace. Protect her Father and the rest of her precious prayer I cannot remember, but I know it was a great prayer because God held me and I instantly felt peace.
I went into the bathroom and Kim almost came in there with me saying, "C'mon, Mrs. Hinkle. Get your things together. I'm taking you to the hospital right now."
Kim and I raced to her van, she drove me to Rockdale Hospital and we jumped out in front of the emergency room doors. Kim went inside with me and said to the folks at the front desk, "This is MaryAnne Hinkle and she is having some facial paralysis." (Please note here: I discovered that 'facial paralysis' is one of the many symptoms of Lyme disease).
The gentleman behind the desk asked me to touch my thumb to each finger tip and I did it twice. I knew I was not having a stroke, but I think they thought I was.
Kim called my husband and he asked if I wanted to him to get off work and come to the hospital and I told him yes. He said, "I'll be there in 30 minutes."
Later, I was admitted for my face becoming paralyzed. (One doctor said I have Bell's Palsy, yet another said its worse than BP - which is it!!? And what is worse than Bell's Palsy at this point?).
I am still praising God for Kim being persistent in getting me to the hospital. Also I am thanking God for Tracy at HCE with her insatiable zest for the Word of God to be prayed over me at the best time ever!
We were told an Infectious Disease doctor was scheduled to talk with us about the possibility of doing a spinal tap to see if Lyme disease is in my spine, which could in turn be causing the paralysis in my face. If they discovered that Lyme disease was in my spine, then they would give me an incredible antibiotic (Rocephin) to prayerfully get rid of it in my spine. At this point, I had no idea that no conclusive test could determine if I had Lyme or not.
An X-ray, EEG, EKG, MRI, a Bubble Test and a cat scan were all conducted to rule out a stroke. I did not have a stroke. I'm very thankful for that.
I was taken from the emergency room to the observation unit because again the doctors thought I may be having a stroke hours after my arrival - even though all my limbs, fingers and toes worked correctly, they still kept me for observation since they could not find anything wrong with me. I also believe they kept me because they couldn't explain why I was having Bell's...again...yes again. Now I have trouble speaking, but my faith in God will help me through this and I know He can heal me in His time.
I had Bell's Palsy back in 1994 and the left side of my face never fully regained muscle movement, so of course the doctors were somewhat baffled after I obtained it yet again, but then this go 'round they began to blame the Bell's Palsy on something else and what it is not quite clear yet. Yes, I get fever blisters' maybe once/twice a year if that on my mouth, but not so many over the course of the past 20 years on my mouth to cause Bell’s Palsy... again... then what do I know?
Doctors seem to think they know "everything" and I am learning to "always ask questions" and yes ask questions even to a doctor. Even if the doctor gets mad, question them. Most times they guess what is wrong with you based upon your symptoms, but other times they really have no idea what is wrong with you if your symptoms are consistent with other types of ailments. This is what happens so many times with folks who get misdiagnosed and they actually have Lyme disease.
Two nurses told me they worked at RMC for over 20 years and in all of their years of working there, they have only known one person to ask as many questions as I did to the doctors and that person was me. I could not believe my ears. How is it that folks are not more concerned with their health? How can people trust every single word that comes from a doctor's mouth? Please do not get me wrong, I trust folks, but when it comes to my health and the health of my family, I am the epitome of nosy!
Sweet Pastor Josh was the first person to visit on May 4, 2016 and he did so just as they were getting me ready for a bubble test and after I was already rolled down to my new room in the observation unit. Bless his sweet heart, he had to step out of the room because of the wand that had to be moved around my chest area. At least he visited with me. I was so grateful and so thankful to see him.
I had asked folks not to visit me because I was super embarrassed about my face; the way I looked and sounded. I felt as though I sounded intoxicated, even though I was not.
May 5, 2016
We were told Dr. N. (who is an Infectious Disease Doctor or IDD) was going to come in today. We waited again, but she apparently came in when I was getting my spinal tap or lumbar puncture which was scheduled and conducted. Dr. N. never returned and so another day had gone by where I would not see the IDD. I requested to see someone over the hospital because at the time, in my humble opinion, it was borderline ridiculous to be told for almost 2 days that the IDD was coming in to see me, but then she never would show up. Someone did come in and speak with my husband and I. Of course I cannot remember a thing the person said other than we must keep you for observation to see if we can figure out why the facial issue is happening.
Everyday was zipping past me and I did not have time to think about why these tests were being done, yet all the folks at Rockdale Medical took excellent care of me. I'm very thankful to each person who came in contact with me while I was there. I was able to witness to many of them. Others zipped in and out so much it made my head spin.
Thankfully, no headache erupted after the spinal tap as I was warned to lay down so I would not have a headache and so I laid down for close to 8 hrs. However, a headache did begin the next day and it may have been due to giving up caffeine since I read caffeine and sugar exacerbates the symptoms of Lyme.
I had that headache for well over a week, but now I am caffeine free. Praise the Lord. Something good does always come from something bad. Yet, each time I smell my husband's coffee brewing, I remember the good ole' days of drinking coffee, but I need and want to take better care of myself and if that means doing away with liquids I once loved to drink, then I will do that. I have too much living to do to just let some ole' disease take my life from me. I want to live, but I do not want to live like I'm on borrowed time. I want to live each day for Christ - the way He wants me to live.
I am discovering through careful research there is the IgG and the IgM blood test where certain bands have to be prevalent to be a conclusive test which will give a true positive Lyme disease result. Even if you have one band show true, you still could have Lyme. Yet, most results can be thought to be either true/negative results or false/positive results. Why hasn't more research been done on this disease? With all the advancements in science and technology, one would think scientists would have a cure for this disease by now, but there isn't one.
I mean this with all of my heart and spirit... I know God can heal me. James 5:16 says, "Therefore, confess your sins to one another and pray for one another, that you may be healed. The prayer of a righteous person has great power as it is working." I admit I am a sinner. I admit I have bad thoughts at times. I pray for people when they know and even when they do not know...I pray.
The IDD never arrived. We waited patiently and asked a few times if he/she was coming and we were told repeatedly he/she was, yet this person never showed up.
Pray with me and for me, please... There are thousands upon thousands of folks who are continually misdiagnosed with this disease. The CDC does not believe folks can have Chronic Lyme Disease, but I know they can have it. Remember everything happens the way God intends for it to. I'm so very thankful for Christ!! I praise Him and thank Him!
May 6, 2016
My face is much worse today. I spit when I talk and I can't seem to get enough to drink. I can no longer pronounce words which begin with or contain the letter "B, F and M." I want to leave the hospital, but I am almost to the point of refusing to leave until the doctors give me conclusive proof as to what is wrong with me.
When the IDD finally visited today, she examined me and listened to all of my symptoms. I was not even finished talking to her when she raced toward the door, said she would be back and out of the room she went. She took action to get me down to Radiology to have a PICC line inserted. Everything went so quickly, I did not even know if I was coming or going. I did not have time to think about anything or call my husband. I asked what a PICC line was and she explained it is similar to an I.V. line, but a PICC line can stay in much longer.
There was a team of folks jump when this doctor snapped her fingers and within minutes a PICC line was inserted in my right arm which means for 3-6 weeks, I will have antibiotics every 12 hrs. administered straight into my bloodstream. I can taste the blood thinner when they administer it and the Rocephin makes me so cold. However, the 3-6 weeks was changed and Dr. N. stopped the antibiotics after 17 days of treatment. I refused to allow them to remove the PICC line on the the 17th day as I knew my rights as a patient. Dr. N. refused to sign an order to have the PICC line flushed once per day and so I had to go over her head. More on that in late May 2016.
I am currently on Rocephin via PICC line - 2x/day, but that did not start until later on this night.
When I arrived back in my room from having the PICC line inserted, Pastor/Dr. Cody McNutt was in my room as well as a friend, Lynda from our Sunday School Class. They had been there waiting on me for some time and I was only able to chat with them for a few minutes since they had to leave. I was so thankful they were able to visit. I wish they had not seen me this way though. I feel so embarrassed since I'm talking out of the left side of my face. UGH!
The nurse came in to administer the Rocephin after 9PM (while two other members of our Sunday School Class were vising - Cathy and Marshall who brought me gorgeous pink roses) and I had an allergic reaction to the medication. I broke out in about 3 sets of hives and itched a tad bit. I called the nurse in and she stopped the meds. She had to get an order from the doctor to give me Benadryl and of course that took time so as time clicked on by, my symptoms diminished. The Benadryl finally arrived and I was knocked out in a matter of minutes.
This is the PICC line. I did not draw this. I took this with my cell phone.
I believe the Bell's Palsy is a direct result from the Lyme disease that I was diagnosed with back in October 2014. Again, I was previously treated with a 28 day supply of Doxycycline; had a small reaction to it in the beginning, but nothing dreadful.
The Bell's Palsy this time started on May 3, 2016. I noticed I could not chew my food well at all, got up the next day and kept saying to my wonderful doggies, "Something is not right. Something is not right." And seemingly the paralysis wrapped up all of its journey on the right side of my face by May 7, 2016.
The test results have not come back yet, but the doctor does not want to waste any more time in case there is residuals of Lyme Disease in my spine or brain.
Chin up everyone. Do not worry about me for a second. I'm not worried about me. God has me wrapped in His arms.
Please do not feel bad for me. Be happy I am in this so I can scream from the rafters about the dangers of ticks to everyone including hikers, etc. and being unprotected from ticks. I just wish I had been on an unbelievable waterfall hike when this transpired, instead of right in my own backyard.
May 7, 2016
I don't mean for this to sound like I'm complaining, but I want folks to know the magnitude of my experience through this ordeal.
So my face is much worse today. My head feels like it may explode and my hearing has really intensified...At least I haven't lost my head, yet I almost can't take how loud everything is. My right ear actually hurts, but at least I can hear.
God, my wonderful, glorious Heavenly Father, I am praising Him for my life. I am praising Him for all the love each of you showed me on my personal Facebook page. I am praising Him for the suffering I am enduring because He sent His son to endure more suffering than I have ever known. I am praising Him for the beautiful blue sky He painted with His angelic hands, the birds singing songs of hope, the wonderful nurses caring for me today, and of course my beautiful, loving family...
We must experience life as Job did - one day at a time and without complete answers to all of life's questions. God is good all the time and all the time God is good! God is present and He is really showing the abundant blessings surrounding my life. I pray He does the same for you today and always.
The hospitalist came in and said they were going to keep me until the IDD said I could go home. They did not give me any Rocephin today. They are going to try it again tomorrow. I found out they cannot get in touch with the IDD to get an approval to continue the Roephin infusion. This is crazy! If I need that medication, then someone else from the group she belongs to should give the green light for me to get it.
May 8, 2016
Today is Mother's Day and I will not be able to spend it with my son this afternoon. This morning is challenging. I will miss my son and miss being in God's house. I did get to speak with Shane and he sounded so great. I did not want to tell him where I was, but Jeffrey thought I should and I did. I feel horrible I cannot see my son today. I have seen countless photographs on Facebook in my newsfeed of moms with their children. I am so happy for each of them. This has broken my heart. But at least I talked to him on the phone. I am not sure he really understood what I said because my mouth is so stiff and I cannot move it well at all because of the Bell's Palsy.
I wish I had a gazillion dollars though so I could create a company that goes around to every hospital room in town to pass out a red rose to each patient and a dozen roses to each mom if they are in the hospital on Mother's Day. I dream a good bit. I love my daydreams.
I explained to the doctors that I knew for a fact that it is incredibly challenging to determine Lyme in any one test because nobody has yet to discover a test that is 100% conclusive. He brushed me off and so did the lead IDD. Nevertheless, again all the tests they have ran have come back clear of Lyme. I know after extensive research that an MRI, Cat Scan, EEG, EKG, Spinal Tap, etc. cannot detect Lyme and they have ran all these tests on me and have concluded they are all negative for Lyme. I am furious! Nobody is listening to me! Why is it that an Infectious Disease doctor (IDD) is not educated in Lyme disease to the point where when one band shows up on the blood tests they immediately go into overdrive to help the person? (Please note: I had a total of 3 separate blood tests conducted and as of June 7, 2016, I still had 3 bands showing, so no person at the CDC can ever tell me I do not have Lyme when I am still showing bands in my blood work and I am still exhibiting symptoms).
My symptoms have been progressively getting worse over time since I was bitten by over 30 ticks – heart palpations, brain fog, memory loss, neck pain, neck making grinding sounds as I turn my head, elbow/joint pain, fatigue, twitching in my right hand, severe lower back pain, sciatica, which the lead IDD said that sciatica is completely off the beaten path for Lyme, (but is it really?), knee pain and knees were massively making a crunching sound when I bent down. As of editing this page on 5/28./16 - my knees and neck are not as loud in making those crunching sounds. I think the Rocephin has really helped with both of those.
I use to be incredibly active. In fact, even though I am a hike leader for a couple of outdoor clubs, I haven't been hiking in almost 8 months for two months. One is money and two there is now way I could climb a mountain with my back and knees being in the shape they are in.
I plan to go see a Lyme Literate Medical Doctor - LLMD. Arrangements take time, so in the interim, I need to know what I can do or what I should do. Should I insist that the doctors have more tests conducted on my spinal fluid? If you have any suggestions after reading this because you have true experience on issues that have worked for you, please write to me.
May 9, 2016
Struggling today with finding answers. I pray you do not get tired of reading my posts about the Lyme disease. I would not normally post my personal health issues, but I want to help anyone I can avoid what I've been going through for the past 19-months. You just never know if maybe one day you will run into someone who has been bitten by a disgusting tick, and reading this information will hopefully be just enough for you to advise that person on what they need to do t.o avoid what I and thousands of others have had to endure to rid ourselves of this disease.
I have been on the phone all morning with the CDC, the State Lab Department, the State Health Department, and the Epidemiology Department. I have seen one doctor after another while I've been in the hospital and with all my research, I'm discovering that an Infectious Disease Doctor is not educated enough to know exactly what to do with someone who has lingering symptoms of Lyme disease.
In one of my conversations, I have been screamed at and insulted. One lady told me I sounded like a robot. She was so mean. I asked her if I could please speak to someone nicer and she said, "I am the nicest person you are going to speak with all day." How do you like them apples? I cannot help the way I sound, speak or even look. I feel horrible about myself, but this too shall pass and I will get better! I am determined to do so!
Nevertheless, someone having a bad day and being mean to me is the farthest thing from my mind right now. (Of course I prayed for her). I just want to get well and have enough strength to go on waterfall hikes again, and I am grasping at every straw I can because I'm not getting the answers here at this hospital. I still have no idea when I'm supposed to go home.
There is a test called an IgG or IgM or Western Blot. I have been told it has to be done within the first 30 days of being bitten by a tick. However, I recently discovered there is a lab Igenex in California that can run this test up to 7 years after an initial bite, including this one - the EIA-Enzyme Immunoassay Antibody test. This is a commercial test and your doctor can request to have this test conducted on you, but the test will probably need to be sent to an outside lab, and not done in the doctor's office.
I was so afraid they were giving me the wrong antibiotics to help fight this disease. I found out that the most effective drug is a penicillin called, Telithromycin. Even after that specific penicillin is given, you still need what is called a "helper drug" that will break up the Lyme's protective adaptations (cystic and biofilm forms) so the antibodies can effectively reach the bacteria. And, yet after more research, I found the medications they are giving me (Rocephin) is supposed to kill the disease, but then there is conflicting information about this too.
Please continue to pray with me and for me and help me pray for all the other beautiful people I have met through a Lyme Online Support Group who are suffering worse than I am.
Painfully and extremely exhausted right now. Just talked to the director of the laboratory here at the hospital and my test results will not be back until tomorrow.
I do have some phenomenal news though and welcome you to praise God with me on these two incredibly wonderful issues!!! First, I still did not have a reaction to the antibiotic again. Praising sweet and glorious Jesus!!
Next, the IgM - Western Blot and the EIA - the Enzyme Immunoassay Antibody are the two tests they have conducted on me and these should determine conclusively a fact I already know, and that is I have 47 of the 71 common symptoms of Lyme's disease. Yet, neither of these tests will specify accurately and conclusively if I have Lyme disease or not. So, everything is still and will be up in the air. I have been praying that the Doxycycline that was given a year in a half ago eliminated the Lyme, but then that still doesn't explain why I still have some of the symptoms of Lyme.
I discovered from research that Doxycycline does not always eliminate the entire disease and therefore, that is probably what happened to me. In my humble opinion, I probably should have received a 45 day supply of it, told to change my diet and began taking herbs to help eliminate the remaining parts of the disease. I may never be completely cured of this since there is no one shot or form of medication that will eliminate it completely, but I will learn to deal and conquer as time moves on.
May 17, 2016
Both injections are done for the day. I endured some agonising pain earlier. I didn't think I would get through that ordeal, but I did with the help of Jesus Christ. These days are going to happen and I am prepared for them, but it doesn't make it any easier.
Please continue to pray with me for all those who are affected and all those who have been misdiagnosed and who, 9 times out of 10, will be misdiagnosed because the physicians in the world today are simply not educated enough about Lyme disease.
Please continue to pray for me as the nerves in my face; cheek, ear, jaw, head and neck begin to wake up.
May 19, 2016
My sweet view every evening as I am surrounded by one person.
I am so thankful for my sweet, precious, unbelievably amazing, superman of a husband. He prepares my arm before showers every evening, prepares dinner every night, and drives me to my appt. most every night since I am weak in the late afternoon and cannot drive myself to the hospital. Please continue to pray with me for those who are sick with Lyme disease; who do not know they are, and who are undiagnosed and misdiagnosed.
Please continue to pray with me to see some signs of improvement instead of being so fatigued in the late afternoon.
I am determined to beat this no matter how weak I am! I know God will make all things new in His time. I truly feel His presence all around me at times. He is hugging me when I need a hug and my faith has grown exponentially! Thanks be to God!
Psalms 27:14 - Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD.
Ecclesiastes 3:11 - He hath made every [thing] beautiful in his time: also he hath set the world in their heart, so that no man can find out the work that God maketh from the beginning to the end.
May 22, 2016
Lyme disease can carry with it over 100 different signs and symptoms, (I have 47), some of which can easily be mistaken for other illnesses or conditions — and many doctors simply do not know enough about this disease to diagnose it easily. This is why many people often get a wrong diagnosis, which can delay the treatment that they need so badly.
Two Tier Testing:
The IDSA restricts the diagnosis of Lyme based on the CDC's criteria requiring two-tier testing using the ELISA and Western Blot blood tests.
The CDC's website states: "This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis."
Many people do not even see a tick anywhere on their body so any symptoms they do get they may not recognize as being caused by Lyme. I did not recognize the symptoms until I began to do research. I wanted to know why in the world I felt so old when I was so young!
Testing chronic or late stage Lyme also poses problems in that antibodies tend to decline over time. The body's immunities are also compromised from the disease and therefore antibodies are not always present, resulting in a false negative test.
Read the story here: https://labtestsonline.org/understanding/analytes/lyme/tab/test
Thankfully, ILADS physicians do not rely on testing alone; however, if you have a positive result, they will most definitely accept it.
Lyme Disease Update:
"In 1991 researchers at the University of Georgia's Southeastern Cooperative Wildlife Disease Study found B.burgdorferi antibodies in white-tailed deer, indicating that the organism had likely been in Georgia since at least 1971.
The following year, another study of here in the Journal of Wildlife Diseases: Borrelia spirochetes had been discovered and ticks which were recovered from white-tail deer in Alabama.
In 1989 Georgia ranked fourth highest in the nation in the number of CDC reported Lyme disease cases with a record 715 cases documented."
If you are bitten by a tick and your doctor tells you Lyme disease does not exist in Georgia, you call him out on it with this information and incessantly if you have to, insist they test you so you can get proper treatment.
The medication that gets pumped into my body twice daily.
The machine to the far right is the one used to take my blood pressure and heart rate.
The tray of bandages that goes over my PICC line to keep it sterilized.
After the bandage has been removed. The darkness around the insertion point is not dried blood. I'm not even sure what it is because it was not there after the bandage was removed. Having this done once a week is almost like having surgery. The room must be incredibly cold, I have to put on a mask and hair cover and so does the nurse and she uses about 4-5 pairs of gloves each time she changes the dressing.
May 23, 2016
Today I am blessed. Blessed! Blessed! Blessed! I am blessed to be able to walk even if I was in excruciating pain earlier; exasperating pain that brought tears to my eyes just to think about it, magnificent pain that crunched against my leg and spine as I moved - but God has a plan; His plan is perfect and His plan is working. The unbearable pain subsided to bearable pain with an over-the-counter tiny blue tablet called Aleve - so now I can finally walk without limping like a... 90-year-old. Praise the dear and precious Lord relief was granted.
Great news on the Bells Palsy front: I am now able to move my right eyebrow a tad bit and the right side of my mouth. (THANK YOU SWEET JESUS for allowing me to see you work miracles AND THANK YOU FOR THE PRAYERS ON THIS!!!)
Eating is still incredibly challenging, but with each bite, I am so thankful - thankful I have food to eat, arms and hands which can move even if my joints ache from time-to-time, thankful for feet which can walk from one classroom to the next, and thankful to be here on this magnificent planet we call Earth so I can give God ALL the glory. "Be thankful in all circumstances, for this is God's will for you who belong to Christ Jesus." 1 Thessalonians 5:18
We should be thankful even if we are in pain. We should be thankful even if we are hurting. We should be thankful to be alive. We should be thankful for and to GOD!!! Again, "be thankful in all circumstances, for this is God's will for you who belong to Christ Jesus."
God's plan is perfect and His plan is working! Look to God for guidance, patience, understanding, grace - everything and anything you need. He is there for you, waiting patiently for you to come to Him. Go! Do not wait to do it later or tomorrow - tomorrow may not arrive.
May 24, 2016
These are my two fave nurses in the entire world. I have grown so attached to both of them and they have stolen my heart.
Both of them have gone completely out of their way to make me feel like a queen - I cannot believe how much they spoil me. They have brought me so much comfort and assurance. I am beyond thankful for sweet Tracy and precious Nina.
May 25, 2016
What is a Herxheimer Reaction? (i.e. die off or herxing) is the release of endotoxins from the destroyed cell walls of the bacteria responsible for Lyme disease, Borrelia Burgdorferi, that causes an additional inflammatory response (debilitating physical and/or mental state), contingent to the amount of endotoxins released, which is directly correlated to the amount of Lyme bacteria killed.
In layman's terms, a person who is experiencing a Herxheimer Reaction has recently ki...lled an amount of Lyme bacteria worthy of causing them to enter a debilitating physical state in which their already present symptoms become exacerbated. They feel as horrible as the Lyme bacteria that has been killed. The more Lyme bacteria that are killed, the more endotoxins that are released. Endotoxins are released from the Lyme bacteria's cell wall when its cell wall is destroyed by either antibiotics or the immune system.
The more endotoxins that are released, the greater the body's inflammatory response is in order to control the pernicious nature of these endotoxins.
So this is my story and I'm praising God, giving Him the glory and praising Him some more that He created a machine - a body that can take on so much more than we ever thought we could. He will never allow us to take on more pain than we can handle. He is my salvation! He is my rock!
See Hidden in the Leaves - Page 2 for a continuation of my journey.