About the author and creator of TruthAboutLymeDisease.com
TruthAboutLymeDisease.com Author and Creator, Dana:
This website was not developed or intended to be about me. It was developed by me to help others recognize the symptoms and all the truth and controversary that surround this disease. But I found that when I was in desperate search for answers, I came across Lyme patients stories on the internet and their stories made it clear that I too had Lyme Disease.
I share my story starting from just over 10 years ago, it is all pertinent ultimately as you will see.
Please read more Lyme patients stories located under the stories link.
Blazing a trail for a family with Lyme Disease
The hardest thing about having Lyme Disease to me (besides the horrible symptoms that come and go & watching my son and husband suffer) are memories. Old pictures or thoughts of how life use to be. I never imagined everything would completely change and the life we once lived, I would long to have back and that it would become a distant memory.
My husband and I met in high school at 14, became best friends and married at 19. By 29 years old our only child a son was 4 years old. All our dreams were coming true, my husband was working long and hard hours as a plumbing contractor, I was a stay at home mom and loved every minute of my life, I looked forward to each day. We were thrilled to buy our first brand new home and soon a new boat, everything was going better than we ever planned. We lived a middle class, comfortable, exciting, active life. We took vacations yearly to Hawaii and would go boating or camping on the weekends.
My husband and I were grateful, we knew that everything we had worked for could be gone in an instant, we were never proud but always thankful. We never took our lifestyle for granite and knew we were blessed and remained humble about the beautiful life we had been given.
Little did we know that a "thief" would change everything in all of our lives in the years ahead. This thief would quickly take nearly everything from us, our health, our financial security, our savings for our future retirement. Waking up each day to a nightmare of symptoms, medications and tolerating each day, no longer truly living. Who knew we would end up praying we would be able to live in our home just one more month and then again, just one more month, or be able to pay the $300 the one of many medications that my insurance didn't cover. We would learn to completely, 100% rely on God to provide for the next weeks groceries and gas for our aging cars. We didn't know that one day vacations would mean going on long trips to "special" doctor's for each of us, the weekend camping and boating long gone, lost to lying around suffering in a world of nearly 100 symptoms the 3 of us share, some symptoms not even on "the list".
Looking back, for years we all had symptoms that now is easy to see the answer was so obvious. But we didn't realize something sinister was forming in each of us and neither did the doctor's. 2006 is the year that all the pieces of the puzzle would come together, it would take me to the brink of death and it would turn our lives upside down, inside out and hurl me into a world I never imagined existed, fighting a disease I had heard of, but never gave a second thought. But it wouldn't be just me, it would be everyone under my roof fighting, including my husband and son.
When or how the infections entered our bodies remains a mystery. None of us remember a tick bite or a rash. Although there is some speculation I could have been born with LD as my mother was bitten and not treated as a child and it could have been passed congenitally.
We will likely never know for sure how we were infected, besides a tick bite, congenital lyme is a very real possibility, but so are bites from fleas, mosquitoes, biting flies and other insects, even sexual transmission are all just as possible. We all had our share of exposure to fleas/ticks during my years in animal rescue I am sure. I had even pulled ticks off my own dogs when I once delayed putting their Frontline flea/tick drops on them. We do not live near deer or forests, we live in suburbia
Symptoms make their appearance one by one......
The 10 year span from 1996-2006 each of us had experienced a severe illness that Md's could not diagnose. Including all 3 of us we saw a total of over 30 Md's in the years to come. Later I would learn they just did not have the knowledge how to put the symptoms together into one problem or disease. Instead, they applied a diagnosis to each symptom, i.e., migraine headaches, vertigo, fibromyalgia. For my husband disk degeneration & chronic fatigue and for my son chronic ear infections and later migraines. Doctor's know nothing about tick borne diseases and even had we known for sure we were bitten by a tick at some point, they would have never made the connection. They just do not know anymore than any other average American regarding Lyme Disease. Although, I find it amazing every American knows about West Nile Virus and if you were anything like me, I was dodging mosquitoes. The media blitz on WNV covered just about every aspect of the hideous virus, but there was no media blitz on the hideous deadly tick borne disease bacterias lurking in back yard bushes or grass.
In 1997 at age 7, my son developed a "mystery illness" that would become so severe I was sure he would die. It started as any flu with fever and body aches. When the fever would drop, I'd send him back to school only to have him sent home hours later with a fever again. Weeks passed and we were going to his doctor almost on a daily basis. They did numerous tests including a lumbar puncture and still no diagnosis.
Eventually many doctor's were involved in his case and not one of them could figure out what was going on. I kept asking over and over for antibiotics, but they would not prescribe them without a definitive diagnosis. Finally he was so sick he could barely walk, his legs hurt so badly, he was losing weight. I now had no choice but to make my demands clear as crystal to these doctors and I did. I told them I would not leave the office without antibiotics, even though I didn't have a clue as to what was wrong, I just knew antibiotics would somehow help. I told them to find the answer or my son was going to die and I know they took me very seriously, as the look on their faces proved they were thinking the same thing. They did finally Rx the antibiotic's and looking back the "jump" on antibotics may have saved his life.
Finally, I received a call from the doctor that they wanted him admitted into the hospital and put on IV antibiotics asap. They said he had possibly had a strep infection that entered his bloodstream, but I couldn't understand that, his strep test was negative. It didn't matter, he was finally getting the attention and the treatment he needed and for that I was thankful and asked no more questions and we admitted him in the hospital within hours of the phone call. Within days he responded to the IV antibotics, the doctor's showed concern for his heart and did an ultra sound that came back normal and shortly after he was released on oral antibotics for many weeks. Thankfully he recovered fully. Life went on.
A few years later I ran into his Md and thanked him again for saving my son's life from strep. His response would stay with me until 2006, "We never knew what was wrong, we hoped he would respond to IV antibiotics, we knew it was serious". I left puzzled and the pieces wouldn't be put together for many years as to what really had happened.
Over the span of the previous 15 years, I had been in several car accidents, no I am not bad driver, but it never failed someone would rear end me at a stop light, again and again and again. These accidents resulted in a non-union commuted (broken in half) collar bone and many bulging disks throughout my spine, neck to lumbar. I was no stranger to pain and I must admit very tough, a type A personality, I wouldn't allow anything to "lay me up".
Eventually, the injuries healed, the collarbone never healed perfectly and I settled into chronic "aches" (pain is much different I learned) and I was diagnosed with Fibromyalgia. I suddenly started developing migraines with aura's, flashing lights blinding me before the mother of all headaches would settle in for the next 24 hours. Then I suddenly awoke one new years day to (BPV) vertigo that lasted 3 months solid, many times it was so severe I'd have to crawl on the floor.
I eventually saw a neurologist who ordered an MRI, he was concerned about MS. I remember the call to this day about the MRI results, I was told the MRI was "normal". Years later this "normal" MRI would come up again. The MRI was not normal it showed brain lesions and I was never told. I asked for records from 1998 in 2008 when I had another MRI and it showed brain lesions. I was astonished to find out I had brain lesions for years. Brain lesions with lyme are fairly common. So I knew I had LD at least since '98.
In the mid 90's I received in the mail a small book, The Gospel of John, from the bible. I read it and quickly bought a bible I could actually understand and became interested in Christianity. I dove in head first and enjoyed my new found relationship with God, not religion. Soon my husband and son followed and were Christians too. I find the timing of this new relationship interestingly perfect when I look back. Once a born again believer, get ready for the "tests" to start, they will come without a doubt and we were no exception. One event after another, tested our faith, small compared to what was coming but many small "storms" prepared us for the big one. We always remained faith filled through each "setback" and still do. After all, a setback is a set up for a comeback and comeback we always have. Whether you are a Christian or not, as my dad always said, "Into every life a little rain must fall", we will all go through trials. I have learned my worst day with God is better than my best day without Him.
My favorite bible teacher became Joyce Meyer, I don't know of anyone that has watched her and not liked her, she is a very real person and is not afraid to share her very real problems, which makes her easy to relate to and her sense of humor can make me laugh even through the agonizing pain. She is not some phony "religious" teacher that I'd seen in the past, the kind that instantly turns you off. I was instantly hooked on her teaching style and I'd watch her everyday on TV or online without fail long before Lyme entered our lives and still do to this day. Watching her teach to full football stadiums of people on her show called "Enjoying Everyday Life" has become my way of making it through the day. She teaches so understandably and fills me with hope and a renewed mind and spirit. I never realized all the years I watched her, that one day, without her teachings I'd be dead today as you will see. I also never imagined that one day God would see to it that my Lyme story would be printed in her magazine that reaches millions around the world. I pray it has helped many.
Around age 30 my husband started having severe back pain & sciatica which led to his first back surgery. The timing was all very near my sons hospitalization and my migraines and vertigo appearing. He was thankfully able to go back to work after the surgery...for several more years.
In 2003 my husband had a mysterious body-wide pain explosion after a lumbar puncture. He had not been feeling well for many months. 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 (physical symptoms that mimic disease or injury for which there is no obvious reason). 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 his neurosurgeon that did the first surgery - he was outside of his HMO, but it was the only way to get help, all that mattered is that someone believed something was very wrong. They did an "exploratory" back surgery. Old fragments of disk were found and the pain did abate after surgery, for a short time, he still felt sick and slept nearly non-stop the next 2 years. Eventually, he developed chronic pain and was diagnosed with Chronic Fatigue Syndrome. His symptoms so disabling, he had to "retire" at 38 years old.
My aches (remember pain is much different) over the years remained manageable, with the help of my wonderful pain management Md and chiropractor. Strangely, my older sister was experiencing similar symptoms and she eventually also was diagnosed with Fibromyalgia. Her husband had his own unexplained severe illness that had been going on for many years, he had seen many, many Md's throughout the years all over the country and none could diagnose him. Finally, a CFS specialist diagnosed him with, you guessed it, CFS. Their daughter, my niece played golf on her college team, but she too was having a few symptoms that were bothersome and overlooked as "nothing" by mainstream Md's.
2005 I had many "symptoms" come and go. Ringing in my ears, insomnia, stomach pain that would wake me up, heart palpitations, I developed "tennis" elbow and tendinitis in my shoulder for no really good reason. I easily herniated a disk in my back when closing a box. Lyme attacks & weakens everything, but my doctor didn't suggest any disease.
The storm approaching...
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 throughout my chest. This had Md's scrambling to test my heart, nothing was ever found wrong.
Within 7 weeks, the pain still existed stronger than ever 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 into my fingers as well. It mimiced symptoms of heart attack. But to me, it was very unusual and I kept saying it felt like an infection, but wondered how could an infection be localized in my shoulder blade? I was absolutely terrified.
I opened the medicine chest one day, there set a bottle of Cipro. I studied the bottle wondering if I should take one. I worried that doing this might mess up tests and threw the bottle back into the medicine chest. Looking back, had I taken the Cipro what came next may have never happened.
I went to an Md that came highly recommended. He was positive I had a pulled muscle. I tried to explain that I had done nothing to "pull" a muscle and argued that 7 weeks of this pain not subsiding at all couldn't be a pulled muscle. He said it could be nothing else. He said I needed cortisone injections. I hesitantly accepted the injections and at the moment he approached with the full syringe, I tried to stop him and said "How about using lidocaine only?" He said, "You'll be fine" and the needle was in my back before I knew what hit me. 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 was hard to breathe. I called the Md who gave me the cortisone shots. By the time appointment day arrived I now felt the original shoulder blade 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 looked at my calender and in big letter's I had written "cancel appointment" on the day the shots were to be given - if only I had cancelled that appointment, if only.
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 & intestine felt utterly destroyed. I dropped 20 pounds within 2 weeks. The kidney ultra sound results came back normal. I started to wonder if I had meningitis.
I began to write goodbye letters and letters to Md's in case I was rushed to the hospital and couldn't speak, I wanted them to know what had happened to me. I was sure I was dying and how I lived through all this and what was still to come, I can only credit God alone.
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 and sensations I had never experienced were driving me crazy, there is no way to explain it, there is no pain so widespread so painful in every nerve, muscle, tendon, bone and cell all going on at the same time I could even compare it with. I felt like a prisoner, tortured day and night, trying my hardest to not mentally break.
I went to more doctor's, even several ER's and more blood was taken, more testing still no diagnosis as the pain deepened and spread like wildfire. I asked each Md 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 it was "much too rare" or "impossible" after all my my white cell count was normal. 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. I honestly cry to this day thinking of those months and I cry for those that may be experiencing something similar right now and not know why. I wish I could reach out to each and every person who is feeling close to anything I have experienced, I want to help them all. I pray everyday they find their way here and get on the right path.
Several months had passed by now and the pain was everywhere at the same time. Now it was ripping through me like hundreds of 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 quite impossible. There really are no words and this is a feeble attempt to help you imagine what I was gong through, but every bone, every nerve, every tendon, every muscle, my skin from scalp to feet hurt so bad you could not touch it, thumbtacks in my feet, nausea, the list goes on, truly it would be easier to explain what I did NOT feel. It was too much. I became bedridden. My mind was breaking, the pain being so widespread & everywhere in my body, it was just way too much for a mind to grasp all that was going on, my brain could not keep up with all the agonizing "action" everywhere in my body.
The number one cause of Lyme Disease death is suicide. I didn't know what was wrong with me then, but I was about to become a statistic without even knowing it.
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 in agony, I'd lie on the floor holding my knees to my chest, crying and begging God for help. Please God, kill me, heal me whatever necessary to end my suffering. I vowed in those very dark moments that if I survived this 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 often wondered often how many people or if there were any out there in the world suffering like I was with no answer to why, how could a body handle this much pain and not die, I couldn't imagine it.
My entire 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?"
Next to being in this much pain, there is nothing worse than seeing your family cry for you and pray that it will stop. My mother cried many times on the phone to me and still does. I honestly do not want to hear her crying, although I understand it, it weakens me and I don't need to feel any weaker. I simply tell her to pray and never stop.
I went online and 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 by a tick so the search continued. Then I came across a symptoms list, the symptoms fit, exactly. I knew the cortisone shot had done something horrendous, but what? Viral neuropathy fit as well. I was down to only 2 things that it could it be, I knew that.
The more I studied the more educated I became about LD and viruses. I had read that not noticing a bite or bulls eye rash was common. So the next visit to my Md I asked for an LD test. He told me I had already been tested and it was negative. But I insisted, my dad actually cornered him and said, "There is something wrong with my daughter and you are missing it, do not believe for one second she is making this up!" Before I left the office that day, I insisted that he give me antibiotics. He prescribed 2 weeks of Amoxicillin reluctantly. He was angry and told me, "Stop reading the internet, let me be the doctor!" Thankfully, I didn't take that advice, there is little doubt I'd be dead today as fast and furious as the bacteria & viruses were spreading.
I started the Amoxicillin and was sure within a few days I would be feeling better. I actually naively hoped I had lyme, I had visions of wellness within days. That is what I read, a few weeks and I'd be well. But I had gone months now symptomatic, I didn't realize it was much more complex than a simple bottle of amoxicillin.
By day 3 my pain was worsening, how could I get any worse? I remember calling my mom, crying, screaming on the phone telling her that my pain was getting worse. She called a holistic doctor she knew and he told her, "maybe the pain is created from killing a bacteria". He was on the mark, but he didn't know what bacteria would cause pain to die and neither did I, yet.
My research on Lyme Disease became an intense search for answers. 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 finally getting somewhere.
By the time the Lyme test result came back, I knew the test would be negative, so why was I so floored when it actually was negative. My Md called to deliver the news and then diagnosed me with a very obvious symptom, "anxiety". His tone on the phone that day was condescending as if I had lost my mind. I remember hanging up crying, hopeless and again begging God for an answer.
That same night, I was taking a shower, I felt my mind becoming totally and completely unhinged, I mean unhinged - a feeling I never before experienced. I became almost robotic, no longer crying, no emotions, just utterly disconnected from who I am. I had been tortured by an unknown, unseen enemy that wouldn't stop for many months, I am surprised the "break" in my mind didn't happen sooner. I was shaking in pain head to toe and I slid down to the floor of the shower, just staring, emotionless & dazed from the non-stop pain that never stopped. I remember looking down at the water swirling around me, I wished I could drown there, death was my ticket out. I momentarily wondered if I was losing my mind and for a few minutes I concentrated hard to "will away" the pain, but it continued.
My mind was set. I didn't think of those who loved me, I honestly didn't care, I was in the darkest place a mind can go, in fact I thought they were being so selfish for expecting me to live like this, for them. I knew I could no longer live like this, not one more minute, hour or day. I wanted it over and the way out was clear, I felt relieved, I would be free. In minutes I quickly planned to end my life. If you knew me, you'd be thinking, "No way, not Dana, she is much too strong willed to ever consider suicide!" It is so completely out character for me. I am a happy person, who had never experienced a depressed day ever in my life - but the pain, the pain, the pain, the pain it was too much pain and I didn't believe that anyone could help me.
As I sat on the floor of the shower, I pictured in my mind a dramatic end to it all, I would get into my car travel a nearby road where few cars were, get the car up to 90 mph and slam into a telephone pole. I pictured sparks flying the pole disintegrating, 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 put on my robe, grabbed my keys and was heading out. No goodbyes to my son or husband, very lost in a world of agony, I would quietly leave them. 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 "The Power of Hope". The amazing thing about this CD series, was that it arrived months before I was sick in the mail. I never ordered it and no one ordered it for me, remember I wasn't sick and I certainly wasn't hopeless. When it arrived, I remember thinking "Hope? What?" and I threw it in a drawer.
I saw it and it stopped me and for a moment my mind thought "Hope? Is there really such a thing?" I decided to listen to the CD's, I had never been so hopeless. I asked my husband to help me put headphones on, my scalp was so tender and hurt so badly, I could barely get the headphones on. He got me set up with the Cd player and I went to my bed and lay there listening, eyes closed and trying so hard to focus on the subject, not the pain that engulfed my body like fire. 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 and it gave me strength, it gave me hope. I didn't feel it in my body, but I felt it in my heart and spirit.
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 was doubtful. 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 my entire story and he sat there and listened intently like no other doctor had for over an hour and 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". Someone believed me? A doctor actually believed me! It was a surreal feeling, I fell in love with him instantly (in a very platontic way of course!).
I asked about the possibility of my having viral issues too, he agreed that too was a possibility. They tested my blood for viruses and the results came back positive for 4 active viruses, HHV6, CMV, EBV & HSV. In fact my viral titers were so high, my LLMd said he had never seen titers that high in his career and he said he couldn't imagine all the pain I was suffering.
Finally THE blood test for tick borne diseases were sent to Igenex and 2 weeks later I received the call from my LLMd, I was "..a strong positive for Lyme Disease, as well as 2 co-infections, Bartonella and Ehrlichiosis". I cried, not tears of joy either, I knew I had a long painful road ahead, but I knew there was some hope I could get well. I was started on antibiotics and anti virals immediately.
It has been a rough road the last 3 years. I am still not well, I am still fighting. My pain is more manageable some days, some days feel like day one. But before nothing managed my pain, not the strongest drugs touched the pain, now at least as I slowly rid my body of the bacteria the pain is usually more manageable, but always there.
I have been on several antibiotiocs now and found them all extremely hard to tolerate at the pain levels I experience. Herxing makes this a very slow process. The most progress was made on Biaxin right away. Later, I was put on Bicillin IM injections, the shots are painful but nothing compared to what I have suffered, the herx intolerable at times and a mental annihalter because it does kill well in the brain. But it led to 28 good days in a row, before the herx started again, at which time I decided to abandon Bicillin for the time being and give my body a break by going back to orals that are more tolerable.
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, causing pain and neuropathy throughout my body that cannot be described.
And 5 more makes 6...
My diagnosis helped 5 others in my family alone and solved the mystery of my son's illness at age 7. My son & husband tested through Igenex within months of my diagnoses, even though my son was not symptomatic at the time, they both were positive. My sister, brother in law and niece have all tested positive as well. None of us has the same exact mix of symptoms.
My son's Lyme was dormant from age 7 until 17. But unfortunately after getting a deep skin infection, staph at the gym when he was cut, it brought Lyme back to life in August 2007. I recognized it in a heartbeat and within days he was on antibotics, we seemed to get it under control quickly and became symptom free. Antibotics were stopped after 90 days but then he relapsed again in February 2008 harder than ever before. He is a fighter and does everything right, excercises, eats right and has a close relationship with God. He has had to put off college for now. Watching your kid suffer is worse than suffering yourself. My husand still battles daily and his pain goes up and down. All three of us in treatment has been unbelievable to me at times. But storms come and they go and this storm will surely go one day too.
I have had an extremely painful case with so many things going wrong at one time, it is truly a miracle I didn't die. My doctor saying developing a pain syndrome as severe as mine, he sees it, but not everyday. Lyme Disease and co-infections mixed with active viruses can be an extremely painful combination especially since they head straight for the nervous system for their attack. The best advice I can offer anyone - stay away from corticosteroids. I learned the leading LLMd in the U.S. coined a term - "the steroid disaster" and trust me he wasn't joking. Yes, some people never experience what I have after shots, others do..are you willing to take the chance? No shots, no pills, no ihalers, etc. ever.
I have experienced so many symptoms on the list in the past 3 years, there are few I have not had and some that aren't even on the list, my best guess is about 50+ symptoms in all now, 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, headache front and the back of my head, shoulder blade pain, kidney pain, bladder pain, pulling stretching burning nerve pain in my legs, bee sting feelings, water dripping feelings, shocking electrical sensations, burning eyes, narcolepsy -like fatigue, hopelessness, emotional mood swings, crying non-stop for days, leg weakness, joint pain, tendon pain, pain in the back of my head, neck pain, sacrum pain, spinal pain, foot pain, feeling of walking on thumbtacks, hot flashes in my foot, tremors, nausea, balance problems and even shooting pains in my bladder and rectally. I also have had ringing in my ears, anxiety/panic attacks, heart palpitations & depression. There really 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 that no one should ever have to experience, doctor's should have nailed this right away, but 99.9% are completely illiterate.
I have spoken with hundreds of suffering people through email, other forums and our forum here and pm's and I do all I can to lead those suffering to find help. If I have made the difference in one persons life, then the suffering I have been through has been worth it.
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 here. 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 and there is hope, there is treatment available and people do get well and I will too in time.
The next time I update my story it will be to tell you that I am free from symptoms. I don't know when that will be, but God willing, soon.
Just remember please if you are sick or in pain never give up, never give up! Don't let that darkness envelope you as it did me, I am so thankful God set up a way out of the temptation of suicide. This life is a gift, perfect no, but believe and keep believing and know there is hope!
If you'd like more information or to speak to me, please join our forum for specific questions and/or help finding an LLMd, we are people that believe you, understand and want to help anyway we can.
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 and a positive outlook during your battle
(Dana currently lives in Northern California with her loving family, dedicating her life to Lyme Disease Awareness and support - Updated 2/09)
In Memory of:
Alden H.
Leslie W.