(Reprinted from the author's site with permission)

2006 is a year I will never forget, the year that changed my life forever and propelled me into a new direction and fighting a disease I had heard of, but didn't know much about.

To tell this story I must summarize the previous 10 years. My husband and I have one child a son. All three of us between 96-2006 had experienced some severe illness that Md's could not diagnose. In 1996 at age 7, my son developed a mystery illness, so severe I was sure he woud die. Eventually this illness landed him in the hospital on IV antibiotics. Thankfully he recovered without ever having a definitive diagnosis.

I had been in several car accidents (none which were my fault by the way :-)) over the years resulting in broken bones and herniated disks. I knew pain all too well. As the injuries healed, I settled into chronic pain and I was diagnosed with Fibromyalgia. I started developing migraines and vertigo that would come and go, eventually seeing a neurologist and being tested and cleared of MS.

In 2003 my husband had a mysterious body-wide pain explosion, after many months of not feeling well. Ultimately, this extreme pain landed him in the hospital and he was released within 10 days after many tests, bone scans, MRI's, blood tests and more showing "nothing wrong". His Md diagnosed him with Somatoform (a technical word for hypochondria). He was in so much pain at home, he couldn't barely walk and had to use a walker. I felt helpless and knew something was very wrong. I eventually took him to a nuero-surgeon outside of his HMO, who did an "exploratory" back surgery. "Fragments" of disk were found and the pain did abate after surgey, for a short time. Eventually, he too developed chronic pain and was diagnosed with Chronic Fatigue Syndrome. His symptoms so disabling, he had to "retire" at 38 years old.

My pain over the years remained manageable, with the help of my wondeful pain management Md. Strangely, my older sister was experiencing similar symptoms and she eventually also was diagnosed with Fibromyalgia. Her husband had his own unexplained illness that had been going on for years, he had seen many, many Md's throughout the years and none could diagnose him. Finally, a CFS specialist diagnosed him with, you guessed it, CFS. We all started to joke that it must be something in the water.

One night in early 2006 as I was getting ready for bed, out of nowhere, I felt suddenly as if someone had buried a knife into my shoulder blade. The pain was extremely intense. It was an unusual pain a sinister pain with indescribable sensations. It was a deep searing pain & within a week it felt as if that "knife" came through my chest. I had horrible pain all through my chest.

Within 7 weeks, the pain still existed and I had seen many Md's. My chiropractor, being the most sympathetic, but thought I had pulled a muscle in my back. I had been put through many tests, blood tests, MRI's, Ultra sounds, CAT scans, all normal. I had a sense of "urgency" in my mind, that someone had to stop this, I feared the pain spreading for some reason, I was panicked and in excruciating pain with no answers. Some mornings I would wake up and have this strange tenderness under my arm and down my side (on the same side of the shoulder blade pain) I had numbness and tingling down my arm as well. It mimiced symptoms of heart attack. But to me, it was very unusual and felt like an infection, I was absolutely terrified.

I went to an Md that came highly recommended. He was positive I had a pulled muscle. I explained that I had done nothing to "pull" a muscle and argued that 7 weeks of this pain not subsiding couldn't be a pulled muscle. He said it could be nothing else, so he recommended cortisone injections. Never having had cortisone, I hesitantly accepted the injections. I had been in so much pain for so long, I was willing to do anything to stop it. He had me follow up with a treadmill test to "make sure" the pain wasn't heart related. 3 days later the treadmill test was scheduled and my shoulder blade pain was absolutely torturous, my chest hurt and I was full of anxiety. I didn't think I'd make it through the test, but I was determined and I too wanted to make sure it wasn't my heart. I went through with the test and when it was over, strangely I had no pain what so ever. The calm before the storm.....

The next morning I awoke to what felt like a horrible case of a "strange" flu.My throat felt like it was closing, and it felt hard to breath. I called the Md who gave me the shots. By the time appointment day arrived I now felt the original pain spreading from my shoulder blade downward to my kidney and right to the other shoulder blade. The MD ordered a kidney ultra sound, thinking now I had a kidney stone. By the time test day arrived, my pain had spread to the other kidney as well and was now wrapping around to my rib cage area. I could no longer eat. I had pain everywhere from the waist up at this point, my chest, upper back, my esophagus felt burned, literally like a hole existed in it. I had horrible burning spinal pain, my stomach & instestine felt destroyed. I dropped 20 pounds within 2 weeks. The kidney ultra sound results came back normal. I started to wonder if I had meningitis.

New symptoms were popping up faster than they could schedule tests, they'd schedule testing for one thing and before I could complete that test, the pain had spread elsewhere. I started to develop an excruciating painful tingling and numbness all over my body including my jaw, teeth and scalp. The strangeness of some of the sensations of this pain literally was driving me crazy.

I went to more doctor's, even several ER's and more blood was taken, MRI's, CAT scans and ultra sounds, still no diagnosis. I asked about the possibility of a bacterial or viral infection, this is what it felt like since the shoulder blade pain started. None of the doctor's agreed mainly because my my white cell count was normal. I argued that tests could be wrong and that cortisteroids can lower white cell counts. I couldn't convince any Md of the bacterial or viral theory and I continued to exist in a state of pain, anxiety and near insanity that no one should ever have to experience and I am sure not many have to this extent.

Several months had passed by now and the pain was everywhere, it now was ripping through me like a hundred knives from every angle, stabbing, burning shooting pains everywhere, all at the same time, always and never a moment's rest from it. To explain this pain to someone who has never experienced it is impossible. But if you can just imagine every cell in your body screaming out in pain from your scalp to your feet, twitching muscles like mini explosions all over your body, burning.... well it was too much. I became bedridden. My mind was breaking, the pain being so widespread, everywhere in my body, it was too much for a mind to grasp.

For a strong willed, focused woman, I had totally lost myself . When my husband and son were asleep I would go into my (walk-in) closet at night, lie on the floor in the fetal position rocking back and forth in agony and begging God for help, kill me, heal me whatever necessary to end my suffering. I vowed that if and when I found out what was wrong with me, I would let the world know. People could not be allowed to suffer like this and without knowing why. I wondered how many people, if any were out there in the world suffering like I was with no answer to why.

My family was at a loss and very worried, but thankfully so very supportive. They knew me well enough to know something was being missed. I warned them that I could die and likely would. I wasn't eating, I was pale and thin and looked like I didn't have long to live. My sister began a search for MD's out of our area. I was now mindless of anything else but my own world of agony. I secluded myself from the world, not answering the phone or returning calls. There was nothing new to report and I was tired of answering the question, "How are you?"

I purchased a laptop and while in bed would spend much of my time researching my symptoms. Lyme Disease came up several times, but as far as I knew I hadn't been bitten. The symptoms fit however, exactly. The more I studied the more educated I became about LD. I had read that not noticing a bite or bulls eye rash was common. So the next Md I saw, I asked for an LD test. He reminded me I had already been tested (I had to ask for both tests, not one Md suggested Lyme) and it was negative. But I insisted. Before I left the office, I also insisted that he give me antibiotics. He prescribed 2 weeks of Amoxicillin. He was angry and told me, "Stop reading the internet, let me be the doctor!" Thankfully, I didn't take his advice, I'd likely be dead today as fast and furious as the bacteria was spreading.

I started the Amoxicillin and was sure within a few days I would be feeling better, but instead by day 3 my pain was worsening, how could I get any worse? I remember calling my mom, a 43 year old woman screaming and crying on the phone to my mother that my pain was getting worse. She called a doctor she knew and he told her, "maybe the pain is created from killng a bacteria". He was on the mark, but he didn't know what bacteria would cause pain to die.

I started a serious online research on Lyme Disease that went on for days while my lyme test results were still "out". I learned about the unreliablitiy of the standard test given at all labs and hospitals. I learned about "herxing" the worsening of symptoms when antibiotics are started. I learned of a tick borne specialy lab called Igenex. I was now getting somewhere. By the time the Lyme test result came back, I knew it would be negative and it was and the Md diagnosed me with a very obvious symptom, "anxiety".

That same night I was taking a shower, I felt my mind becoming totally and completely unhinged, a feeling I never before experienced. I was being tortured by an unknown, unseen enemy that wouldn't stop. I was shaking in pain head to toe (I called them "pain seizures") and slid down to the floor of the shower, just dazed from the non-stop pain, the water swirling around me, I wished I could drown there. I wondered if I was losing my mind. I no longer could live like this, not one more minute, not one more day, I planned to end my life. This is so out character for me, a person who had never experienced a depressed day ever, but it was too much pain and I figured that no one could help me. As I sat on the floor of the shower, I pictured in my mind a dramatic end to it all, getting into my car and speeding up to 90 mph and just slamming into a telephone pole, sparks flying, this would surely get someones attention and I would have been happy to prove to all those doctors I had seen, that surely the autopsy would reveal what was wrong.

As I stepped out of the shower, I planned I would put on my robe and go. As I prepared for the last few minutes of my life, I noticed lying on the dresser a CD series by my favorite minister, Joyce Meyer, called "Hope". Ironically, I had not even orderd this series, it arrived months before I was sick and all of a sudden there it was, lying out on my dressser. I thought it must be a sign, I will listen, I was hopeless and never had been before, so no better time than the present. I asked my husband to help me put headphones on, my scalp was so tender and hurt so badly, but I put them on anyway. He got me set up with the Cd player and I went to my bed and lay there listening, eyes closed and trying to focus on the subject, not the pain. I ended up listening to all 4 Cd's that night and when they were over, I listened again until I felt renewed mentally & spiritually which gave me strength. I had hope again, I didn't feel it in my body, but I felt it in my heart.

Obviously and thankfully, I never went through with my plan, hind sight is 20/20 and I never knew then that help was around the corner. My prayers were answered when I received a call from my sister the next day. She said she had found an Md who was known for "mystery ailments" and indepth blood testing 2 hours away from me. I had to wait 2 weeks until my appointment and in the meantime I spoke several times with a woman in their office who assured me they had seen many like me and they could diagnose me, I was convinced & realized I had to see this doctor.

I learned when I arrived at the doctor's office they primarily dealt with tick borne illnesses. I had no idea there was such a doctor. I had literally had fallen into the hands of an LLMD (Lyme literate Md). When I met with the doctor, I had somewhat of a "chip on my shoulder" sure he woud be just another dead end and I would be diagnosed with depression or some other obvious symptom. I told him the entire story and he sat there and listened intently like no other doctor had, when I was finished speaking, I asked, "Do you think I am crazy?" He said, "No, I think you have one or more tick borne diseases". I asked about the possibility of my having viral issues too, just a gut feeling I had, he agreed that too was a possibility. They tested my blood through Labcorp for viruses and the results came back positive for 3 active viruses, HHV6, CMV & EBV. Another blood test was sent to Igenex and 2 weeks later I received the call, I was "..a strong positive for Lyme Disease, as well as 2 co-infections, Bartonella and Ehrlichiosis". I was started on antibiotics and anti virals immediately.

It has been a rough road, I am still not well, but I am making good progress. My pain is more manageable now, before nothing managed my pain, not the strongest drugs touched that pain. I even have days that are good now and then! My LLMD says that's a good sign. I am in this for the long haul, I have no choice, but at least I know the enemy. There is a 95% chance of getting well with this disease, I know I will be well again.

My LLMD believes that I have had Lyme Disease for years, "percolating" for years, coming out one symptom at a time, the migraines, the veritgo, the body aches then finally, the trigger that caused the explosion. The cortisone shots disseminated both viral and bacterial diseases body-wide.

Since being diagnosed, my son, husband, sister, brother in law and their daughter have all tested positive as well. None of us has the same exact mix of symptoms. My son's Lyme is currently inactive. But we now know what caused his severe illness at age 7.

I have had an extreme case, my doctor saying with pain symptoms as severe as mine, he sees it, but not everyday. Lyme Disease and co-infections mixed with active viruses are an extremely painful combination.

I ended up having 35+ symptoms in all, mostly neurological. Some of my symptoms included, tender painful scalp, sparking nerve pain in my scalp, jaw, teeth, muscle twitches, migrating pain, shooting, burning, stabbing, pins & needles, numbness, blurry vision, deep ear pain, burning spinal pain, stomach, intestinal pain, rib cage pain, chest pain, shoulder blade pain, kidney pain, bladder pain, pulling stretching burning nerve pain in my legs, leg weakness, joint pain, tendon pain and even shooting pains rectally. There are not any places in my body that I haven't had pain

I have endured tremendous suffering and pain I never even knew existed. It has made me a different person, a better person, stronger, more compassionate, it has given me endurance. But most of all it has given me drive and purpose to help educate our world about Lyme Disease and the co-infections.

In my darkest hours I vowed to tell the world what happened to me and I am thankful to God that I have been given this chance to do so. I started this website with high hopes that people searching for answers will find there way here and learn that they are not alone, there are many thousands of us, but most of all there is hope. If you are sick, never give up, believe me there is hope!

Peace & prayers in your pursuit of health,

Dana

This site is dedicated to all those suffering from Lyme Disease - may God bless you with renewed health soon.

In Memory of Alden H. who died 2/07 after a 20 year fight with Lyme (You will not be forgotten)

(Dana currently lives in Northern California with her loving family, dedicating her life to Lyme Disease Awareness and support at her own and other online support forums and occasionally freelancing articles for Public HealthAlert.org Lyme Disease newspaper)