Relapses

I've had a few relapses since my terrible week I had about a month ago. Thankfully they haven't lasted as long or as terrible. But still, it's scared me everytime it happens. The first relapse happened after I had started a larger dose of the antibiotic Levaquin. The pattern seems to be that I have relapse symptoms within 48 hours of starting a new medicine or increasing the dose. The first time it happened, it hit me fast and I was sitting downstairs watching tv. I felt hot and a wave of nausea and I felt dizzy. I remember trying to get myself upstairs to my bed without falling over or passing out. I laid in bed for a bit with a fan blowing on my face, then when the symptoms were continuing to become stronger, I stumbled (almost in some sort of dilirium) to the bathroom where I was able to get my clothes off (very uncoordinated limbs) and get into a cool bath, where I then fell asleep and woke up a bit later feeling a tiny bit better. Still, the next few days afterwards, I did not do anything because it scared me so bad that I had a relapse. I did not want to have any more relapses. I explained this reaction to my doctor later in the week at my appointment and he decided to pull me off this particular medication (as it was also causing me to have tendinitis in my joints). He was again suprised at my reaction as he had been when I came in after my week of Hell. I seem to stump him a bit when it comes to how my body reacts to the die off reaction of Lyme and Bartonella (the two bacteria that are being killed by the antibiotics). He put me on a new antibiotic Rifampin (I'm also currently on Minocycline) and gave me more pain and nausea medication. Within 48 hours of starting the Rifampin I had a terrible migraine that just did not seems to go away (and my usual pain meds for migraines didn't touch it), it would abate at times and then come back in the evenings almost everyday throughout the rest of the week. As this happened, I also was having searing pain in my neck and back. I went to my chiropractic appointments and my vertibrae seemed to be mostly alligned, so my chiropractic Dr seemed to think that the bacteria is most likely burrowed into the fascia (tissue around the spinal cord) and slowly making its way down my spine as it dies off. Doesn't that just sounds peachy? Ha! Sounds awful to me actually, but makes sense. He's had a patient in the past who had Lyme disease and showed similar symptoms as she went through treatment for Lyme. Later on, I was staying at my Sister's house (only 30 minutes from my in-laws) and continued to have severe back pain. I was trying the best I could to handle the pain, but I was having to take more and more pain meds to just get my pain to lessen just a little bit. I felt mentally as if I was about to break. I was trying everything I could to distract myself. I was trying to watch movies (but my head and eyes were hurting, so watching and listening to anything hurt me more, laying in bed made me continue to feel the pain. At one point I went and stood on my sisters balcony (she lives on a beautiful lake) and just looked out at the water and breathed in the fresh air, that helped some, but I continued to suffer greatly. My sister used Aromatic oils and rubbed them into my back, which also seemed to help for a bit and I dozed in and out of a nap for a few hours, but still the pain would return. So I decided to call my Lyme doctor on his cell (which he'd given me weeks ago and told me to use it, but I never had). He was again suprised at my reaction, gave me instructions on how to get on top of the pain rather than "chase" it as I was currently doing. And I have also decreased the dose of the Rifampin for the time being. As long as I stay on top of my pain with pain meds (large doses) I do ok. But I've had to now set alarms every 4 hours to make sure I don't miss a dose. If I do, I certainly pay for at least half a day until meds kick in and I feel on top of the pain again. He started me back on a medication called Neurontin to help with nerve pain, but unfortunately this med makes me tired and groggy, so I don't like it. But I will stay on it for now till my nervous system calms down.

Yesterday I had another relapse. I had been in bed all day for the past few days and I noticed some muscle twitching, hot and cold symptoms, and a few other symptoms creeping back in. So my mom gave me IV glutathione (which helps combat the severe symptoms of the die off reaction). Everyone left to go for a walk and while I was alone, bam! I was hit suddenly with severe symptoms again! All of a sudden I became extremely shaky, hot and sweaty, my heart was beating rapidly and I was dizzy and nauseous. I thought "oh crap!" and got myself up and to the bathroom and decided I'd sit in cool water again. Since I was alone and didn't want to pass out without anyone around, I called my husband on Skype and he stayed with me, talking to me, while I cooled my body down in the bathtub. I continued to have symptoms the rest of the night and even today I feel some (shaky, muscle twitching), but they lessened with the cool bath. So at least I know now that if I can get myself into cooler water, I can get symptoms to lessen when I have these relapses. But it's still very scary for me, and when this happens, I can't help but feel so frustrated because I feel as if I'm taking one step back in recovery instead of moving forward. I lose hope for a bit and then I try my best to gain it back and continue to think positively as much as I can. My treatment is going much slower than any of us (including my doctor) thought it would, but with my reactions I've had, we have to take it very slow or I will end up in the hospital again. One thing is for sure, these reactions show that I definetely do have Lyme and the 3 other co-infections. If I didn't have it, I wouldn't be having these reactions to the antibiotics. So in a way, it can be a blessing knowing what I actually have. I just need to keep myself strong mentally and emotionally while I endure through the worst of it all, and as I also learn to really closely listen to my body and what it's telling me. That is definetely a challenge! But rest assured, I'm still hanging in there! I continually feel so blessed to have my family surrounding me and helping me, I know that I am extremely blessed, as I know there are others out in the world who do not have this great blessing. I'm glad I'm not alone in this extremely difficult trial.

I HATE Pain!!!

This is going to be short tonight, all I can say about the past few days is pain pain pain, lots of oxycodone, more pain pain pain, phenergan, pain pain pain, imitrex, pain pain pain, gabapentin...soaking in warm baths, using essential oils and massage, and still MORE pain. I just want to scream to the world "I HATE LYME DISEASE! LYME SUCKS!" That's how I feel right now... now hopefully: much needed restful sleep with some Ambien and Klonopin on board. One sucky thing about my body is that I've got a high tolerance to medications... as anyone could see by my lists of meds I just named. Most people would be knocked unconscious and possibly stop breathing from the amount I'm taking. But not me, I'm awake and functioning normal and not feeling sedated. It sucks sometimes especially when I would love to knock myself out and just get one damn good night of sleep! Sorry all for my anger... But I need to learn to let it out and not hold it in. Good Freaking Night! or at least I hope it will be.

 

Close Enough to Touch

When I was a teenager, I had an opportunity to sing a solo in a special production at church called Women at the Well. It is a collection of songs by women in the New Testament of the Bible who each had a story to tell of their particular meeting with the Savior Jesus Christ. First of all, I had never sung a solo before in front of an audience, so that was frightening in itself, but I wanted to do my best and I loved to sing. I was given my song assignment and started to practice at home, I was going to be playing the girl that Jesus blessed and arose from the dead. But then I was changed and given a new song to sing called "Close Enough to Touch", I was to be the woman with an issue of blood for many years who touched the Saviours garment and through her strong faith, she was healed.

This story is found in the four gospels (Matthew, Mark, Luke, and John), the most comprehensive of which is found in Mark 5:25-34:

 

 "25 And a certain woman, which had an issue of blood twelve years,

 26 And had suffered many things of many physicians, and had spent all that she had, and was nothing bettered, but rather grew worse,

 27 When she had heard of Jesus, came in the press behind, and touched his garment.

 28 For she said, If I may touch but his clothes, I shall be whole.

 29 And straightway the fountain of her blood was dried up; and she felt in her body that she was healed of that plague.

30 And Jesus, immediately knowing in himself that virtue had gone out of him, turned him about in the press, and said, Who touched my clothes?

 31 And his disciples said unto him, Thou seest the multitude thronging thee, and sayest thou, Who touched me?

 32 And he looked round about to see her that had done this thing.

 33 But the woman fearing and trembling, knowing what was done in her, came and fell down before him, and told him all the truth.

 34 And he said unto her, Daughter, thy faith hath made thee whole; go in peace, and be whole of thy plague."

 

and Luke 8:43-48:

 

" 43 And a woman having an issue of blood twelve years, which had spent all her living upon physicians, neither could be healed of any,

 44 Came behind him, and touched the border of his garment: and immediately her issue of blood stanched.

 45 And Jesus said, Who touched me? When all denied, Peter and they that were with him said, Master, the multitude throng thee and press thee, and sayest thou, Who touched me?

 46 And Jesus said, Somebody hath touched me: for I perceive that virtue is gone out of me.

 47 And when the woman saw that she was not hid, she came trembling, and falling down before him, she declared unto him before all the people for what cause she had touched him, and how she was healed immediately.

48 And he said unto her, Daughter, be of good comfort: thy faith hath made thee whole; go in peace."

 

 So I practiced and practiced, until I knew the song by heart. On the evening of the production, my fellow young women friends and I dressed ourselves in dresses and hair coverings that would have been similar to what women wore during the time of Christ. I was the second out of maybe a dozen songs. My turn arrived and I stood to sing. I remember I kept my eyes closed during the first few lines trying to gain courage and forget the audience who was listening. In many ways, I was trying to truly become the woman who I was singing about. While singing, I noticed a dear friend of our family in the audience who struggles with Multiple Sclerosis, who I admire greatly. She had tears running down her face, and I realized that this song I was singing was most likely describing much of what she has felt through the years of her physical struggles. Never could I have imagined that only a decade later, I would listen to the words of this song and it was as if they were written for me! I can't help but think that God chose me to sing this particular song and learn the words by heart for a special reason beyond what I could have understood at the time.

The Following are music and lyrics to this beautiful piece called "Close Enough To Touch" by Kenneth Cope from the production called "Women at the Well":

"I've suffered much and given all
For many healers care
But nothing better - only worse
An overwhelming load to bear
Until I'm ready to lay down and die
But from the window I hear this hope filled cry
A Man named Jesus - He's come to heal us
And suddenly my faith comes alive

(Chorus)
If I get close enough to touch
Close enough to heal
Somehow I know I'll be whole
If I'm close enough
Close enough to feel
His healing power so real
Now I believe there's a miracle for me
If I'm close enough to touch

I press my way into the crowd
And touch the Master's clothes
A perfect cure felt deep inside
He turns to ask - I turn to hide
I'm afraid to reveal what was done
How I called on His power to right this wrong
But this is Jesus - He's hear to heal us
I fall at His feet and tell Him

(Chorus)
I came close enough to touch
Close enough to heal
Faith let me know I'd be whole
If I was close enough
Close enough to feel
His love for me so real
I will believe there are miracles for me
When I'm close enough to touch

And down on my knees
As He turns to leave
His eyes seem to say - Just believe
Always believe
that he's close enough to touch"