7 Weeks Antibiotic Treatment Was Not Enough! Kayla's Lyme Journey Continues.......

Click here to read about Kayla's Lyme journey.

So we thought we were done, that we had killed this bug that so violently showed itself in Kayla last July, 2013. When we first found out she had Lyme she was prescribed Doxycycline. Then one week later was changed to Azithromicin 250mg two pills daily plus Amoxicillin 2 times daily for 7 weeks.

Night before last I was awoken at 3am by Kiara as she said Kayla was in pain and needed me.

I rushed to her bedside to discover that she was in excruciating neck pain, couldn't turn her neck or her body for that matter. I check for fever, none, felt around her neck area and there was clearly a swollen gland or lymph node. But no other signs of anything else.

Late in the morning she was able to slowly get out of bed and she came downstairs where she laid on the couch for most of the day. I applied my oils (Pan Away and Peppermint) and also had a heating pad on her neck.

At dinner time as we sat down to eat I looked over and saw redness on her neck. I looked more closely and I gasped! Is that a bullseye?

Jeff saw my expression and asked what was wrong and I said calmly, I think I see a bullseye. His response was,"No you don't, you would be more freaked out". He didn't realize I was trying to not freak out as I didn't want to upset Kayla. 

But sure enough he saw it too.

How can this happen? We thought she was cured and for 6 months she has shown no signs of Lyme.  

"Recurrent Lyme Disease

Despite previous antibiotic treatment, Lyme disease has a propensity for relapse and requires careful follow-up for years. The data suggest that failure to eradicate the organism may be the reason for a recurrence of symptoms. Early and aggressive treatment with antibiotics is indicated for recurrent Lyme disease. The ultimate impact from retreating each episode of recurrent Lyme disease is currently unclear."

**ILADS Guidelines for Treatment

Also you can watch a recent news report video about how antibiotics don't always kill Lyme.
News report in the Poughkeepsie Journal

So Kayla is now back on intense antibiotic treatment and this time it will be MUCH LONGER!  

So CDC, tell us again that Chronic Lyme doesn't exist! Prove to us that Kayla has post Lyme syndrome and it's all in her head! Did we draw that bulls-eye on her neck? 7 weeks wasn't enough to kill this bug yet the CDC says that the 7 weeks wasn't necessary for treatment, that 4 weeks would have killed it! Wrong wrong! How many more people will continue to believe the CDC guidelines and let more and more people be sick and left untreated? 

HYPERACUSIS AND LYME DISEASE

PLEASE DON'T SNEEZE THAT LOUD! Oh don't bang the dishes in the sink pleeease! It's so loud!!! My head vibrates from the sounds!

What is going on with me? Why are everyday normal sounds making my ears and head go crazy? It's like someone turned up the volume in the world around me!

The condition is called Hyperacusis and is a wonderful Lyme symptom.

**Lyme disease patients can experience an extreme sensitivity to sound, also known as auditory hyperacusis. In some patients it is limited to louder sounds, but in the more severe cases "ordinary" sounds can be very debilitating. The impact can be felt throughout the body, and this condition can affect every aspect of daily living. Patients can experience heightened awareness and an inability to tolerate conversation, running water, page turning, the humming of electronic devices, other people's breathing, etc. These normal everyday sounds become painful and unbearable, and as a result the individual's ability to leave the home is greatly limited. Patients may also experience an increased startle response and an "electric shock" type feeling.

Sounds can also induce dizziness, and this is called Tullio's phenomenon or audiogenic seizure disorder. According to Jenifer Nields, MD, "This peculiar short-circuiting of the inner ear's auditory and vestibular functions is known as the Tullio phenomenon. This phenomenon has been deemed pathognomonic for syphilis (43) but, as it appears, can occur in Lyme disease as well (41), and thus provides one more example of the "new great imitator," Lyme disease, imitating the old "great imitator," syphilis (1)." (Psychiatric Quarterly, Spring 1992). Vestibular Hyperacusis can also affect the autonomic nervous system.

Sometimes another central auditory processing disorder, tinnitus (buzzing or ringing in the ear), can accompany hyperacusis. Lyme disease patients can also experience sensitivities to light, smells, taste, touch, motion and/or temperatures.

**Taken from Lyme Info

Minocycline made me HERX!!

As I shared in my last blog entry my LLMD wanted to start me on new meds to start killing the co infection bartonella. So I was put on Minocycline 100mg. I started it on Wednesday and by Saturday I was in a full blown herx. I woke up in the middle of the night with the most excruciating TMJ pain on my left side and headache. I felt such pressure on my brain and neck. I thought my head was going to explode.

We had to head to MA to my dear friends funeral service, we were also Live streaming the service for the family so I forced myself up and headed over. It was an 3 hour drive there and back. Agonizing! 

The TMJ pain was so severe I took Excerderine and Advil out of desperation. it did nothing! 

Sunday morning the TMJ pain was GONE! Just like that! But the intense pressure in my head had escalated and the dizziness was overwhelming. 

I decided to look up side effects to the Minocycline and I did find that there is a condition called IIH (idiopathic intracranial hypertension) and Minocycline was one of the drugs that had caused this in 2% of folks.  But my pharmacists paperwork that came with my meds had nothing about this condition.

So I did the no no...I believed what I read online and stopped taking the Minocycline and I waited till Monday morning to call my doctor.  So I am learning how to be a good Lyme patient.....my LLMD is so kind and patient with me. When he called me Monday evening the first thing he did was scold me for not calling him on Sunday morning. Then he scolded me for believing the internet and not the pharmacists paperwork. He joked and said we know if Donna doesn't go to church on Sunday then we know to call 911...he's funny. 

He said this was a classic herx reaction, the TMJ pain that disappeared as suddenly as it came on was herxing, then the inflammation has no where else to go but in my head and that's why I felt such pressure in my head.

So he changed my schedule for the medication. Instead of starting with the Minocycline, tomorrow I start the Rifampin, then when I get back from TX I will start the Mino again and see how I do. I'm scared to try it again but he's hoping that the Rifampin will start killing off the bug so next time I won't get such a violent herx. Here's hoping!

I did update my Daily Journal with all this. I even put pictures. Don't scream...I look terrible! lol!

So lessons learned:

1. Do not change what the doctor has instructed until you talk to your doctor.

2. Google can give us way too much info that doesn't apply to us even though it makes sense.

3. Pharmacists paperwork is not to be thrown away and never read. READ it to find out side effects etc. If it's not listed on there don't assume Google will be the next step.

4. My LLMD is on call 24/7! I am not bothering him, he emphasized this many times on the phone last night. If I have concerns CALL HIM ASAP. Don't wait.

I am learning!!  Here's a little Lyme humor.

Co Infections and new treatment for me. Yippeee.....blegh

After a really bad few weeks of ups and downs, more downs than up, out of desperation I called my doctor and told his secretary all my symptoms and my concerns. Later that afternoon she called and said he wanted to see me at 8:30am the next day...gulp..it's a 2 1/2 hour drive from here!

My son Joshua didn't have to work so he volunteered to drive me there along with his wife and my adorable grandson, Nathan. This is the adorable face I stared at on the way there.

To keep this entry short, when we arrived at my doctors office I started getting a really bad headache, which within 30 minutes became a full blown, right side of my head migraine. I wanted to pass out I felt soooo bad. But thankfully my doctor got to see it and how I was reacting to it. Joshua did most of the talking to my doctor so that was a blessing. My doctor has for some time suspected a co infection called Bartonella. I have so many symptoms of it with the sore soles, red bumps that appear and itch then disappear, headaches, dizziness, chest and rib pains. But up until now he was focusing on the Lyme itself. Most Lyme patients do have co infections. Read here: Lyme Disease Co-Infections 

Since I have gone downhill so suddenly after feeling relief for a bit after starting treatment, my LLMD highlighted all my current symptoms and has now started me on a new treatment against the co infection Bartonella.  My two new antibiotics to start fighting the Bartonella are Minocycline 100mg 1 capsule twice daily and Rifampin 150mg 1 capsule twice daily, and he added Ranitidine 300mg to take at bedtime for my stomach. I have to gradually wean off the Clarithromycin, will be done taking those next week.

I also have to do monthly blood draws. Here's my first one today. I look wonderful don't I? NOT! I feel awful, but I am still fighting hard! Pictures compliments of Abraham! 

So another new round of antibiotics, and new stomach meds, we shall see how I do. Will keep updating. If anyone is interested I do keep a Daily Journal here in a separate page that helps to keep track of my daily symptoms.

I appreciate your prayers as I start this new treatment. Praying I don't herx and that I start feeling some ups!

I loved the end to my C.H. Spurgeon devotion this morning. I pray that the Lord give me the faith to endure and to believe His promises. Without Him I can do nothing!

O, then, Christian, watch well thy faith; for with it thou canst win all things, however poor thou art, but without it thou canst obtain nothing. "If thou canst believe, all things are possible to him that believeth." 

Herxing.....a most unpleasant experience

I started treatment in late September 2013. Over the next 2 months I would slowly add a higher dosage. My LLMD warned me about the herxing stage. I didn't have a clue what herxing was.

Here's a great explanation taken from Chronic Illness Recovery Website.

This phenomenon is known as the Jarisch-Herxheimer Reaction and is often referred to informally as herx or herxing.

Herxing is believed to occur when injured or dead bacteria release their endotoxins into the blood and tissues faster than the body can comfortably handle it. This provokes a sudden and exaggerated inflammatory response.

The first week I was on treatment went just fine, I didn't feel anything worsening, in fact within days my finger joints went pain free. I was so excited! I could actually bend my fingers with no pain! I thought wow, that was fast! It's all up hill from here! NOT!

Week 2 my knee joint pains were subsiding, however at night my body would be in so much pain. Only at night though, full body aches that made it hard to sleep, but during the day I felt fine.

Week 3 my heels hurt so bad that I could barely walk on them. My dear friend, Pennie, bought me gel heel pads and new slippers and heel pads for my shoes that really helped alot. This heel pain lasted for another week and went away....until Feb.

In November I was hit with extreme hay fever...I never have hay fever in Nov! It was so bad and agonizing, the worst hay fever ever. Nothing helped, I got no relief. Finally out of desperation I called my LLMD and he told me to take Allegra. That helped some but it didn't go away completely.

January 2014 I felt pretty good, I was still having occasional joint pains and headaches, but I was truly seeing improvements after so many years of suffering. At this point I started having migrating joint pain that would go to my wrists, this was a new symptom for me.  The end of Jan I had my 4 month appointment with my LLMD and he was encouraged to know I was handling everything just fine. So he said lets just keep doing what we're doing. I was still having some hay fever flare ups so he prescribed a nasal steroid spray which gave me relief. He was encouraged to know I was herxing as that definitely shows you are treating the Lyme correctly.

Feb 7th 2014, I woke up with my right side of my head hurting. I can tell a Lyme headache from a normal headache. I can take Excederine and get rid of a normal headache, however nothing touches a Lyme headache. This morning I tried taking Excederine, then I tried Ibuprofen, the headache was getting worse. It was in the back of my skull, where my skull and neck meet, I could feel it was inflammed. This lasted 2 weeks with my head hurting, my right cheek went numb and tingly. Then as soon as the headache left my left elbow was inflammed and hurting so bad. In all these years my left side was never attacked, but now all of a sudden my left side was being targeted.

I kept having different symptoms, painful nights, painful elbows, painful wrists, then one day I felt great! Whoo hoo! The herx is done! Or so I thought....the very next day I woke up and could barely walk on my heels again. My entire body felt weak and my muscles felt over exerted. I couldn't even pull my comforter up as I had no strength in my wrists.

Everytime I got up from sitting down it would take a bit to straighten my body out and walk normal. Everything hurt.

This is where I am today, although today has been a better day..so much I took this pic and sent it to my husband with this text: "I feel good so far today! I even put make up on!!"

I know my herxing days are far from finished. But I press on, one day at a time...listening to my body, resting when I need to, and now I have made this blog to also help keep on track.

So this herxing is normal, and it can be a good sign that things are dying off, so I must stay strong and encouraged. But I also have to learn how to detoxify and take care of myself during this herxing stage.

God is always so good to give me just the right scriptures too when I need them. Here's what I read this morning. My foe is Lyme. God is turning my mourning into dancing. He has answered my cries for help, He showed us who this foe is, and I know He is delivering me.

Psalm 30

English Standard Version (ESV)

Joy Comes with the Morning

 I will extol you, O Lord, for you have drawn me up
and have not let my foes rejoice over me.
² O Lord my God, I cried to you for help,
and you have healed me.
³ O Lord, you have brought up my soul from Sheol;
you restored me to life from among those who go down to the pit.^[a]

⁴ Sing praises to the Lord, O you his saints,
and give thanks to his holy name.^[b]
5 For his anger is but for a moment,
and his favor is for a lifetime.^[c]
Weeping may tarry for the night,
but joy comes with the morning.

⁶ As for me, I said in my prosperity,
“I shall never be moved.”
⁷ By your favor, O Lord,
you made my mountain stand strong;
you hid your face;
I was dismayed.

⁸ To you, O Lord, I cry,
and to the Lord I plead for mercy:
⁹ “What profit is there in my death,^[d]
if I go down to the pit?^[e]
Will the dust praise you?
Will it tell of your faithfulness?
¹⁰ Hear, O Lord, and be merciful to me!
O Lord, be my helper!”

¹¹ You have turned for me my mourning into dancing;
you have loosed my sackcloth
and clothed me with gladness,
¹² that my glory may sing your praise and not be silent.
O Lord my God, I will give thanks to you forever!

Gunner's Battle with Lyme-By Kiara Hebert

                                                      

                                                This is Gunner

Sunday, February 16th was when we noticed something was wrong with Gunner. Before we left for church, he was his happy normal self. I remember that morning he had jumped on my bed and woke me up, acting crazy as he usually is in the morning. When we got home from church, we noticed that he wasn't at the door to greet us like he always does. When we called him, he came from the upstairs, and as he was walking down the stairs, we noticed that he was limping. We didn't think much of it though, we just thought that maybe he had hurt himself playing in the snow with his sister, Patience. A couple hours later, he was limping even more, and it was getting harder for him to walk. By bedtime, he couldn't walk up the stairs, so Dad picked him up and brought him in the room to go to bed. The whole night he was whimpering and crying. By morning, he could hardly walk, so Dad had to carry him down the stairs. It was hard trying to get him to go outside to go to the bathroom. When we let him out, he would just sit on the porch because it hurt him to much to walk.

As the day went on, he was getting worse. He wouldn't eat and hardly drank. Later in the afternoon he was completely lame. If you tried touching his front paw, he would yelp and pull it away. He felt hot and feverish.

Mom called our vet, but we couldn't get an appointment until the next day. That evening, his back legs started hurting him. At around 8:00, he was so bad that we  took him the emergency vet hospital. We had a hard time trying to get him in the car. Every time we'd try to move him, he would yelp and cry.

After we finally go him in the car, we drove to the emergency vet which was about 30 minutes away.

  
When we got to the emergency vet, they brought out a stretcher and carried him in to the examination room. After we signed in, we waited in the waiting room for about two hours, then they asked us if they could do a Lyme and other tick borne illnesses test. Later we were told that Gunner had Lyme disease and another tick borne illness called Anaplasmosis, which is very common in dogs. They wanted to do a blood test on Gunner, as Anaplasmosis will  cause kidney failure in dogs if not caught fast enough. The blood test came back with good results, we had caught the Anaplasmosis fast enough before it affected his kidneys. They injected a round of doxycycline and gave us a weeks worth of pills to give him. We brought him home, and that night Mom and I slept in the living room with him. In the morning we brought him to his normal vet, where his doctor gave him a checkup and his second dose of doxycycline. They kept him until late afternoon.

When we picked him up, he was walking very slowly, but he still needed help to stand up.  That evening, he would go outside with me and walk around, and was definitely feeling better,  but he still was not normal.

The next day, he could stand up a little on his own, and would eat a little. 

Later, he was doing much better.

A week later he was perfectly normal. You would never have known that he was so sick the week before. He was on Doxycycline for three weeks and recently took his last dose.

10 Things to know when someone in your life has Lyme

I found this to be a wonderfully written article for folks to understand the Lymies in their life. One of the most frustrating things about Lyme is it's invisible for the most part. 

Enjoy this article.

10 Things to Know When Someone in Your Life has Lyme

Also here's a short video of a description of what we feel.

Lyme Symptoms

My Daily Treatment and other changes made.

My current treatment my doctor has me on is a combination of 3 different antibiotics. Each has it's own unique purpose.

Amoxicillin 4000mg daily
Plaquenil (hydroxychloroquine sulfate) 400mg daily
Clarithromicin 1000mg daily

Each one of these is attacking the Lyme from 3 different angles. My LLMD said they work like a S.W.A.T. Team, each stealthily attacking their enemy from their angle.

I also have to take Pantoprazole 40mg daily for my stomach and I also take very strong Probiotics before bed time.

I am good at pill swallowing so I can take the entire handful in one big gulp. My kids are amazed!

I am also waiting for my Young Living Essential Oils to come in. I signed up as a distributor as I read so much about essential oils and how much they help. Once I have my distributor kit I look forward to being blessed with some customers. My distributor number is 1688848. If you decide to buy some or sign up as a distributor you can use my number as that will help me out tremendously!

I also have gone gluten-free for my diet and really trying hard to eliminate sugars.

So that's my daily regiment and so far so good. I will talk about the 'herxing' in my next blog post. Fun fun...NOT! Can you say OUCHIE!!!

Donna and Kayla's Story Part 3.....You Have Lyme Disease Donna

We were so thankful to have found such a wonderful, funny, easy to talk to LLMD, and he was treating Kayla with antibiotics for 7 weeks. He was confident that we still caught it early, and even though we went almost 2 weeks of it being misdiagnosed he felt for sure with 7 weeks we would kill it. I believe we did as Kayla has shown no signs of Lyme!  PTL!

***UPDATE..KAYLA'S LYME RELAPSED....

Kayla on left, Kiara on right. 

So to get to my diagnosis, the very day we went to see our LLMD for Kayla, we got home, it's an almost 3 hour drive to his office, so I was pretty tired and my heels were as usual aching, so Kayla was giving me a spa treatment as she calls it, she was massaging my heels when she stopped and I felt her pick something off my ankle. She said in a worried voice, "Mommy, I think you have a bloated deer tick". I took it from her fingers and sure enough, a teenie, tiny, poppy seed sized bloated tick. I thought how ironic that this happens the very day we took Kayla in to the LLMD. He educated us a lot on Lyme and he had us watch the documentary Under Our Skin, so I felt Lyme literate now so I did what most folks do...I stuck the tick in a container and waited to see if I developed Lyme symptoms. FYI....CALL THE DOC ASAP! ehem.....the one pic shows how tiny deer ticks are, and this one is a bloated tick, the second pic we used a magnifying app on my Iphone to get a closer, magnified shot. Isn't it gross looking? We named it "The Germinator".

Four and a half weeks went by and I continued with my normal aches and pains, then one day I felt so sick. My brain fog returned full force, I was falling asleep at odd hours, my neck was stiff and hurting more than ever, my body aches got worse. I waited a week to see if it was just a flu but it wouldn't subside so my husband commanded me to call our LLMD. So I did and he reprimanded me so bad saying, "Didn't I give you enough information about tick bites and Lyme and you should have called me the day you found the tick and I could have started doxy"...he went on and on and then made me an appt.

FINALLY SOME ANSWERS!

At this point we were researching Lyme so much that we were starting to wonder if all these years my symptoms were in fact Lyme, so I pulled all my medical history to bring to our LLMD.

He spent 3 and a half hours musing over my medical history, underlining, highlighting, circling, every now and then he would ask me a question but he went right back to my paperwork, he had me fill out a survey circling any symptoms I had ever had and surprisingly EVERY symptom I had over the years were on this survey.  Even ones I had never really paid too much attention to like hair loss, rib pain, chest pain, blurry vision. See a comprehensive list here.

I sat there patiently, just waiting, when he finally stacked my papers up and lowered his glasses and looked at me and said very frankly, 

"Donna, you have Lyme disease."

I sat there stunned, I asked him several times, "Are you sure?" he just would look at me and reiterate again, "You have Lyme disease, you are a classic case actually"

He then went through all my history and did a thorough explanation of everything from the tennis elbow, to fibro etc. He even told me to not feel ill towards all those doctors as he felt they were really trying to help me as he saw no medical language of me being a hypochondriac, I guess many doctors do this in the paperwork. 

He has been diagnosing and treating hundreds of Lyme patients for 11 years. I knew I could trust this man. Everything inside of me was saying, "I know, I know I have this, it's the only explanation".  

So now begins my long treatment.

So this is my story believe it or not in a nutshell.  The rest of the blog I will focus on what treatment has been like and the symptom I still deal with. My LLMD said this will be a long road as I have had this for over 6 years. But he's confident I am strong enough to fight this. 

The Lord answered my prayer in a miraculous way. If Kayla had not been bit and had a classic bullseye rash, I would probably be sicker today. Truly His ways are not our ways, but His ways are always perfect and good. 

Romans 11:33

Oh, the depth of the riches and wisdom and knowledge of God! How unsearchable are His judgments and how inscrutable His ways!

I am so thankful that the Lord has given me answers and I know He will be with me as I daily fight this bug. I hope my story encourages many and also gives answers to many. 

All glory to God!

Soli Deo Gloria!

Donna

Donna and Kayla's Story Part 2...The Diagnosis

It is now 2013 and the arthritis pains in my knees were getting really bad. I cringed every time I had to walk up steps, my heels started hurting so much it was hard walking on them. Every morning waking up was hard as my body would tremor and quiver. I started wondering if I had MS or Parkinsons. It would take several minutes to be able to walk normal after getting out of bed. I felt like I was 100 years old. I was not even 45, I shouldn't feel like this! My daily Ibuprofen was taking it's toll on my stomach and at times it wasn't helping anymore. I asked the Lord for answers, I asked Him to reveal what was going on or was I just being a big baby. The Lord answered my prayers in the most incredible and unexpected way.

In July 2013 my twin daughter came downstairs and showed my daughter in law a bug bite on the back of her leg. Allie looked at it and asked if she showed me yet. Kayla came and showed me and this is what we saw. 

We rushed Kayla to the walk in clinic as Allie and I were pretty positive this was a Lyme EM rash.  The doctor looked at it and said it didn't look like Lyme but more like an allergic reaction to a bug bite. She traced it with a skin marking pen and told me to give her Benadryl and keep an eye on it. The next morning I traced to show how much the redness has spread. I called Kayla's pediatrician and got in to see her. Once again we were told this didn't look like Lyme but an allergic reaction, most likely a spider bite, but still they took some blood to test for Lyme and also gave her prednisone. This was at 3pm and by 9am the next morning they called and said Lyme was negative. Just FYI, in June 2013 Maine passed a law that states that the doctor who is requesting a blood Lyme test must inform us about the high percentage of false negatives. Kayla's doctor didn't mention a thing to us.

We continued watching this 'allergic reaction' grow and grow. After a week of watching it grow, Kayla started having pain in her neck and her leg was on fire. She was complaining that her shin and ankle were hurting, it was 11pm at night when I took this picture and we rushed her to the ER. The ER doctor took one look and said this is classic Lyme. How could they have misdiagnosed this? Kayla was immediately put on doxy, but only for 2 weeks. 

At this point I started researching Lyme disease and I realized that 2 weeks of antibiotics may not kill the bug that was spreading so rapidly in Kayla. I went online looking for a Lyme Literate Doctor (LLMD) but the closest I found was in MA. Then my dear sister in Christ gave me the name and email address of a lady she knew that was battling Lyme and she had a doctor in Maine who had helped her tremendously. I emailed her and she gave me the name and number of the doctor, I called right away and left a message. That evening he called and I gave him the entire story. He gave me another weeks worth of doxy and we made our first appointment with him 4 days later. He is so booked but he just couldn't let an 11 yr old girl get chronic Lyme disease so he fit her in. He was truly the Lords answer to my prayers. Not just for Kayla but now me!

Here's what her leg looked like after a week of doxy. 

Now back to Donna's diagnosis.....

Part 3......You have Lyme Disease Donna

Donna's Story....Part 1

First I would like to introduce the before Lyme Donna. I loved aerobics, jogging, dancing, sports. I loved hiking, camping, swimming, just being active and having loads of fun being outdoors. I was also very involved in evangelism and was weekly on the streets sharing the Gospel.

In 2007 all that changed. 

My first symptoms were subtle, came on slowly. I felt fluish but never getting too sick. Just achy body, headaches, and just over all not feeling that great. I just took ibuprofen everyday and continued living.  

Then one day out of the blue, my right elbow was hurting, I couldn't pull laundry out of the washer as the pain was unbearable. After several days of this I went to my doctor and was diagnosed with tennis elbow. He put me in physical therapy and they started working on my elbow. Then as suddenly as it came on, it went away. 

I was still having flu like symptoms so I went back to my doctor and after evaluating me and doing a what I called a poke here and there test, he diagnosed me with fibromyalgia. He advised me to learn pain management. My pain management was to try to ignore the pain. 

A few months later I started having excruciating pain in my kidneys and very bloody UTI's. I was rushed to the ER several times. I was told I was having kidney stones and so I started treating those. I had several more episodes of the kidney stones, once my oldest son Joshua, had to call 911 as I passed out on the floor from the pain. Then as suddenly as that came on me, it went away. This was 2008.

2009 seemed to be up and down with that familiar "fibromyalgia" discomfort, but again my pain management was to ignore it. At this point in my life I was taking at least 800mg of Ibuprofen a day as the body aches were uncomfortable. I tried running again and doing aerobics but it was too painful and at this point I was feeling tired alot. 

2010 I went downhill fast with excruciating neck pain and headaches. My doctor had xrays ordered which showed I had a military neck, meaning it was completely straight and not curved like a normal neck. No more jogging for me. The headaches were so bad and then my right arm went numb and tingling. My finger tips were always numb and tingling, then my right cheek felt numb and heavy. The tip of my tongue stayed numb for two months before it suddenly went away. My doctor at this point ordered 2 MRI's which showed mild disk compression, I was diagnosed with Cervical Degenerative Disk Disease but nothing that explained the numbness and my right arm losing strength and tingling and the constant throbbing arthritis pains. I was sent to the neurologist for further testing. Carpal tunnel was suspected but the painful testing (they put needles in your arms and hands and send electrical shocks in! AHHHH) showed 'inconclusive'. They couldn't understand where all the pain and numbness was coming from. So I was sent to the neurosurgeon as the neurologist and my primary doc said I would need the disk compression surgically taken care of. 

The neurosurgeon sat down and took one look at my MRI and said she didn't see any reason to do surgery as my neck wasn't that bad and she said I needed to learn pain management and do yoga! I think not! I went home that day feeling like I was back at square one, no answers, no relief from the daily aches and pains, and the arthritis pains were getting increasingly worse.

At this point I gave up and decided I was just going to live with it, maybe it will all go away. It was during this time that we were in the adoption process for our adorable son, Abraham. We almost thought we would have to give up the adoption process as my mysterious sickness was overwhelming at times. But we persevered and God gave me the strength to continue on. 

So pretty much until a diagnosis I lived this way, painful joints, headaches, slurring speech, brain fog, blurry vision, heart palpitations, weak muscles, sloppy handwriting, forgetfulness, some days I had no pain miraculously, but then it would all come back, off and on...year after year, popping Ibuprofen just about daily until..................

Part 2 "The Diagnosis of Lyme Disease" next........

Where to begin....An Intro

Hi everyone, Donna here.  I decided to start a blog as I am on this Lyme journey. It's a great way to keep track of my symptoms as well as let folks know how to pray for me and also to educate folks on this terrible bug that is truly an epidemic I believe. My goal is to stay focused on Christ, and to glorify Him in the midst of pain and suffering. I want to always point you to Christ.

I will first start with my story and then Lord willing, keep updating as I fight this Lyme bug.

So stay tuned for My Story coming up next....

For now be blessed by this beautiful Spurgeon quote:

If Jesus loves you, and you are sick, let all the world see how you glorify God in your sickness. Let friends and nurses see how the beloved of the Lord are cheered and comforted by him. Let your holy resignation astonish them, and set them admiring your Beloved, who is so gracious to you that he makes you happy in pain, and joyful at the gates of the grave. If your religion is worth anything it ought to support you now, and it will compel unbelievers to see that he whom the Lord loveth is in better case when he is sick than the ungodly when full of health and vigour.

Beloved, Yet Not Afflicted

Looking to my Jesus,

Donna