Pamela Ward has been battling a life long illness, named different by many different doctors. Finally a diagnosis years later, shocking to find out it was Lyme Disease. Thank you to Pamela to tell her story in her mission to help others to under go tests to find out if this is what is causing their symptoms. It's not in your head! Her mission is to help misdiagnosed situations that may lead to the very same thing. After years of tests and false diagnosis Pamela has finally got results of Lyme disease and is hoping to help others get the help they need with her message. Thank you Pamela for your generosity to help others.
A LIFELONG BATTLE OF LYME AND GRAVES DISEASE
My story begins in my childhood days. I can't say for sure if I had been bit by a tick as a child or as a teenager. I was always an outdoor person and had a great love for animals. I was the kind of kid that loved to build forts in our woods, catch crayfish in our creeks, and go berry picking along the trails. I had cats and dogs all of my life and used to go horseback riding often at a friends house. I also spent a lot of time in the Adirondacks at my friend’s camp. Between the ages of 6 - 10 years old, I was a girl scout. We spent a lot of time tenting, camping, hiking, and going to ranches to horseback ride. It was a great experience and indeed a lot of fun.
In my younger years, however; I was sick with ear infections, strep throat and allergies so bad that I was diagnosed with Hay Fever. At one point, my pediatrician suggested tubes in my ears to minimize the infections. By the time I started Junior / High School, I had more bouts of Strep infections and started to develop sensitivities to materials/fabrics or fragrances and as a result, had rashes and hives. After taking hot showers, my skin would have itchy red blotches all over, but I passed it off as having the water too hot. By the time I was 15 years old, I had to have my tonsils and adenoids out. My throat was so closed up, that I felt as though I was being choked. Shortly after that, I had a hard time swallowing. I assumed it was from not having my tonsils anymore and I needed to learn how to swallow all over again. I would gag on pills and choke until anything I tried to swallow , would eventually come out of my nose. Horrifying, Yes, but I eventually got control back to where I could eat and drink normally. Taking medicine was a different story. I could not get a pill down without eating something first, almost as if I had to trick my mind into it.
One year later, my best friend had gotten me a kitten for my 16th Birthday. This kitten was very playful and loved to be outdoors. During this time, and around 17 years old, I started to break out into hives a lot, constant sinus problems and swollen lymph nodes behind my left ear, left elbow, left armpit, and left groin area. The one lymph node behind my left ear had become very large. It was not going away and appeared to get bigger. My mother brought me to a Dr. and it was suggested that I have it removed right away. This particular Dr. already informed my mother that it was a possibility that I had Hodgkin’s Disease. After I had the outpatient surgery to remove my lymph node, I was getting dressed and I overheard the Dr. discussing with my mother that he was going to test the lymph node for cancer. I was devastated… I was only 17 years old and I thought I was going to die from cancer. When the tests came back, I was told I had Cat Scratch Fever. I was so relieved. I thought to myself , “It’s not cancer, it’s just Cat Scratch Fever”, something that I have only known to be a Song….. Little did I know. During that year, I then started to get a rash around my mouth. The rash was blistery and surrounded my whole mouth. My Doctor believed it was an allergic reaction from the penicillin that I was on. The part that didn’t make sense was that the rash became worse over time and appeared to have spread before it got better.
Over the next few years, I had trouble with pain in my feet. I thought it could be the shoes I was wearing, or long hours on my feet while at work. I had rages and would get into altercations more frequently. I was the type of person that wanted to be liked not hated. While at school one day, I was walking to my locker with my friends and my vision turned “white.” I could not see anything but white. I was sent home from school and I thought I was having some type of “Ocular Migraine.” After graduating from High School, I began to work for an agency for the mentally and physically challenged. Once again, I was exposed to camping, walks in the parks on trails, feeding the deer and hiking. I could remember one day at work, I was feeling tightness in my chest, so I had gone to see the RN on duty. She took my vitals and informed me that my blood pressure was 60/40. She actually said to me, “ I don’t know how you are still standing and haven’t fainted.” I was brought to the hospital and was hooked up to an EKG machine. I literally thought I was having a heart attack. Come to find out, I was experiencing my very first Panic attack. This was the beginning of the plethora of episodes that were to come. I had just started to work in a new classroom as a Human Service Aide. On one particular day, I was reading aloud to my consumers and my speech was not coming out quite right. I felt as though someone was holding my tongue. I had a brief episode of speech slurring. I considered it my “lazy tongue” and thought nothing else of it. Another time while at work, I had attended a meeting which was very stressful, but nothing that I wasn’t used to. While talking and taking notes, my neck started to bother me. I just brushed it off as, my neck was getting stiff from looking down. Then it got worse. The pain and stiffness was very intense and I could not turn my head. Needless to say, after the meeting, I had to leave work early. This neck pain and stiffness carried on into the week, and then up to a month. I missed a lot of time at work and even had a chiropractor come to my house to try to help. Nothing worked, nothing relieved the pain. Finally, one day, it started to go away. To my knowledge, I have had multiple episodes of “Lyme Flares” while working, but each time, passing it off as it was something at work that did it. For instance, I was running down the hall trying to stop a consumer from fleeing the building, and when I took a step and turn, my knee gave out and I fell. I have had knee pain before, but this time I needed to wear a knee brace on my leg until the pain subsided. At other times, taking a step up onto stairs would cause extreme pain in my knees as if they were to give out. A lot of my health problems were so on and off, that I never pointed it to one specific problem or cause. I never put all of my symptoms and injuries down to piece it together and say a possible tick bite did all of this. When you put it on paper, it makes you think of so many incidences. I could remember a large bruise on my chest. I also had sore ribs. I assumed it was from dealing with behaviors and I was kicked or punched. Once again, I was at a specialists office, a Thoracic Specialist, thinking I had a broken rib.
Other symptoms that were of concern to me were, multiple skin rashes that mostly appeared on my left hand. It was believed to be a latex allergy to the gloves I would wear at work. In my early 20’s I would like to go out with my friends. We had our share of party’s and going to the clubs, but for some reason, I had a hard time with alcohol. I used to think it was a normal feeling that everybody experienced but until I knew better, it wasn’t. After having only a couple of drinks, my arms would go numb, and become very heavy. I used to say, I know when I am drinking because my arms get “drunk” first. Like I said, this was just the beginning , but more was to come.
When I was around 23 years old, I fell directly on both of my arms while having rollerblades on and attempting to stop from going into a wall. The pain was very intense and I was at the ER. I had fractures to both elbows and contusions to each shoulder. To say the least, I was physically disabled and needed assistance to do everything. After my arms healed, I was able to go back to work. From that point on, more issues began. I had a couple of more episodes of slurred speech, migraines and extreme stomach pains. To me I assumed it was “normal” and ignored everything. I was not a complainer and was the type of person to say, “I feel Great” during my yearly physical at the Doctors.
I started to have a lot of pain during menstrual cycles. During an ultrasound, it was discovered I had cysts on my ovaries and fibroids on my uterus. I was constantly feeling fatigued and a general malaise all of the time, which I contributed it to an unhappy relationship I was in. I ended up moving back home to my mom. I started to have really bad nightmares and night sweats. This was continuous. I became very sick around the springtime with 5 infections - sinus, strep, upper respiratory, ear, and bronchitis. I could barely lie down or sit up because of the pain. This was a 2 week sickness and I missed out on a family vacation because of it.
Around the same year, I was looking to get my own place. I was doing a lot of overtime and things were starting to look better…. Or so I thought… I was just moving into my new place, and was talking on the phone with my sister. My speech slurred a little and I laughed it off and told her, it was just my “lazy tongue.” It happened a couple of more times but still I did not bring it up to my Dr. I started to experience really bad lower stomach pain that would feel like a “gall bladder attack” but it was not my gall bladder. Then I noticed a lump in my left breast. I did finally go to see a Dr. because this time, I knew it was “Important.” Sure enough, I needed to have surgery. Once again, I had the Cancer Scare. Luckily, it was not breast cancer, but it was a fibroid tumor. A couple of months later, I was getting into bed and as I was going to turn the T.V. off and roll over,,,, I couldn’t! I literally couldn’t lift my legs up. When I touched them, I could feel the sensation (Thank God because I thought I had gone paralyzed.) I immediately called my mother, but the weird thing was, I was not panicked. I said, “Mom, I can’t move my legs,” She asked, “What do you mean you can’t move your legs?” I said, “ I can feel them when I touch them, but I cannot lift them up, unless I use my hands.” She was ready to come and get me to bring me to the hospital, but I told her not to worry, and I was going to go to sleep. I hung up the phone, lifted and adjusted my legs where I wanted them to be positioned and I went to sleep. By the morning, I got up and had no problems with my legs, so I never mentioned it to my Doctor.
For the next 3 - 4 years after that, I had what I thought to be normal body aches. I constantly had hip pain and lower back pain, swollen glands from time to time and the occasional strep, bronchitis, sinusitis, and upper resp. infections. I went on some hiking trips, fishing and continued life with ailments without a fuss. At the age of 30, I became pregnant. Two months into my pregnancy, I had a miscarriage. I was told there was an infection that could have caused this. Shortly after, I became pregnant again. I was scared to death to be at work because I was targeted by a consumer who would attack me in violent rages. I was becoming highly stressed, irritable, having hot flashes and it was still winter. My hair was falling out and I was so shaky with heart palpitations. My boss had a meeting with me because I was not acting myself. I was always a caring and patient person, but at this particular time, my body was under a lot of stress and I had no control. They requested that I see my Dr. and take some time off from work.. I went to my Dr. that same day, very depressed and crying and had some bloodwork drawn. Well, to my surprise, I was Diagnosed with Graves Disease. I most certainly was not happy with a diagnosis of anything, especially Graves Disease. When I heard “Graves” I thought “Death.” OK, well, Thank God that didn’t happen. I was started on medication but because I was pregnant, my Endocrinologist took me off the medicine to wait it out until I gave birth. The rest of my pregnancy went well. I did have some near fainting spells, and my legs “jerked rapidly” towards my chest, but I figured it was pregnancy symptoms. My thyroid was functioning at a level that was good enough to leave alone.
My son was born 2 weeks early weighing 6 lbs. 2 ¾ oz. He was jaundice, so I had to walk him facing the sun for 15 minutes daily until his biliruben count was normal. Three months later, I started to have excruciating wrist pain. It hurt to move, or bend in any direction, and it became stiff. I figured it was from opening bottles for the baby. After a while, I was unable to use my right hand for anything.
Nine months later… I was dramatically loosing weight. I started to lose a lot of my hair again and all of my Graves Disease symptoms started to return. Back to the Endocrinologist. I go. He gave me 3 choices : 1) Radio Active Iodine (RAI), 2) Surgery or 3) medication that would make it difficult to have more children. My choice came down to RAI, because it seemed less invasive, as well as, having the choice to have more children. I was also planning my wedding that was to occur 5 months later so I did not want to have a scar on my neck… being the bride, You want to look your best. I had to go back and forth to the hospital for 3 days taking a radio active pill that was given to me by a technician wearing protective gear. I was also put on prednisone… BIG MISTAKE! I could not be around people so I had to be out of work. My 18 month old son had to stay with my sister for a week because I was “toxic” and if he were to hug me, the radio activity could destroy his thyroid. This was the hardest part of my life. I would sneak to my sister’s house and peak at him through the window while I cried and wished so bad to be close to him. I had to sleep separately from my husband (fiance') at the time. I had to wash my clothes, blankets and sheets separately. I had to wash out the tub after my shower and wash the toilet after each use. I used plastic forks, spoons and cups and then threw them away due to possible contamination. I became very depressed. Soon after this treatment, I started to gain some weight. I put on 16 lbs. in 2 weeks, my skin color turned grey. I was slow and sluggish, very weak, and fatigued. And Yes….. I still went to work. My co - workers kept asking me if I was ok because I didn’t look good. I was very sensitive thinking people were being mean and telling me I look like crap every day. I cried daily. My speech became slurred and I went to my boss and told him that I needed to see my Doctor ASAP. I called my Dr.’s office and said in my slurred words, “I think today is my last day on this Earth.” I need to see my Dr. The receptionist said she had an opening in June, I was having these issues during the beginning of April. So, I hung up and called my Family Nurse Practitioner. She told me to get to her office immediately. I drove myself to the Dr’s office very slowly but surely I arrived. She immediately popped a Synthroid pill in my mouth and told me to chew it up. She was discouraged at how the receptionist at my Endocrinologist’s office handled this and I could hear her talking to my Endo regarding my health. I was close to slipping into a coma or even worse, death. I cried and asked her if I was going to die. She reassured me that I would be ok. I was told to get to my Endo’s office right then and there. I left her office and drove up the street to his office. I was put on Cytomel to speed up the process of healing and getting healthy again. I did. I was recovering and starting to feel so much better. Just in time for my Wedding… Life was good for me for approximately 4 months.
One month after my Wedding, I started to have problems with my eyes. They were dry, gritty, watery and one eye appeared larger than the other. Shortly after, I became pregnant with my second child. Throughout my pregnancy, I had near fainting spells, my eyes became more bulgy, light sensitive and the wind made my eyes very uncomfortable. I started to wear sunglasses to work because the wind and light sensitivity. I was a Human Service Practitioner of a classroom of 9 consumers and 4-5 staff at the time. I requested the maintenance workers remove some bulbs from the overhead fluorescent lights above to be more comforting. It was difficult to work in these conditions especially since I needed to be on guard at all times. My vision was getting worse as my eyes protruded, and I eventually started to have double vision when looking to the right or left. I was referred to an Ophthalmologist and was diagnosed with Graves Ophthalmology. (Thyroid Eye Disease).
I couldn’t believe that this was happening to me. I was extremely depressed and cried myself to sleep pretty much every night. I had to wear a sleep mask on at night and had to lubricate my eyes constantly because of the severe chronic dry eyes. In order to stop the eye disease from progressing, I needed to have radiation done to both eyes. I had to wait until my daughter was born. She was 2 weeks early. Two days before she was born, I was in the hospital with severe cramping, and found out that I was dehydrated.
When my daughter was born, she was very jaundice and had a lymph node in her neck that was swollen. It was checked by an ENT and was cleared of cancer.
Three months later, I had gone through 2 weeks of radiation to both of my eyes. I would leave work on my lunch break, drive over to the oncology dept. at the hospital, and get strapped down to a table with a mask covering my face and bolted down. Each beam lasting up to 30 seconds each, but felt like eternity. I was so frightened to have to go through this. I started to lose my hair and part of my eyebrows. My eye disease was finally stabilizing, but because my eyes had bulged out, there was concern that it could be putting too much pressure on my optic nerves. I was sent to a reconstructive eye surgery to discuss Orbital Decompression on my eyes to protect possible blindness. My surgery was scheduled on Sept. 24, 2007. I was scared and excited, and I thought that this was going to be the end to my nightmare. I said “goodbye” and that I will see everyone (at work) in 3 weeks.
Unfortunately that did not happen. I had even worse double vision. I suddenly had a dull, blurry appearance in my right eye. My ophthalmologist noticed a “speck” on my optic nerve, and he sent me to an Optic Nerve Specialist. At this time, this Dr. took many photos and ran a lot of tests on my optic nerves. He then came back with a diagnosis of Ischemic Optic Neuropathy. I thought “ What else could possibly happen?” He then proceeded to tell me that I was not able to lift anything over 40 lbs. I said to him that my job requires me to lift up to 60 lbs. I even asked him if he could make the amount “60 lbs.” so that I could return to work. He placed both of his hands on my shoulders and said, “Do you value your vision?” I said, “Yes”, he said, “Absolutely no lifting or you could go blind in your right eye.” I was not even able to lift my own 4 yr. old son because his weight was close to 40 lbs. I left crying from his office and headed right over to my workplace of 16 years to share my awful news. I was so devastated. I wanted to go back to work, even though I had double vision and optic nerve damage, and not once thought about the danger I could be putting myself into. I became very depressed and my Dr. prescribed me an antidepressant to help. Two weeks later and 4 months after my Orbital Decompression surgery, I started to have slurred speech again. I went back to my Dr. and she immediately stopped the antidepressant. She then set up an appointment for a neurologist and multiple tests. I had a MRI, EEG, Carotid Doppler, TEE, EKG, and had to wear a Holter Monitor for a week. When I saw the neurologist, he quickly dismissed MS, instead, he said that I had a TIA. He also told me that I have elevated homocystein levels, and a mitral valve prolapse. My depression stayed with me. I was losing my job of 16 years, losing my health insurance, my disability from work was ending in March. I had a “Mini - Stroke” at 36 years old. I was scheduled to have eyelid retraction surgery in March in order to bring my eyelids back into normal position so I would not end up with corneal ulcers or abrasions.
Two months later, I started to feel like the ground was meeting me while walking. I was tripping and stumbling. I had a hard time seeing and I was wearing a sticker prism in my glasses. I began to feel lightheaded and dizzy all day. I would have to go lie down in order to feel better. If I coughed or laughed, my head did not feel right. I had gone to an eye muscle surgeon for correcting the muscles to align my eyes so that the double vision would diminish. He was concerned that the operation might not work. I then, went for a second opinion and during the eye exam, my eye had a jerking, jittery movement, and he said, “Did you know that you had Nystagmus?” I said no, and kind of laughed it off because my list of unusual medical conditions kept getting longer. I had no idea it was neurological. One month later, I had my follow up appointment with my neurologist and I told him how dizzy, lightheaded and uneven gait I had and that my eye muscle Dr. noticed Nystagmus. The suggestion for me was to go home and drink more water. I couldn’t believe that he could pass this off . Soon following this appointment , I had pain in my neck and all the way down my left arm.. I had no idea what was happening. I was lying in bed and the pain got so bad I screamed and cried in pain. I told my husband that I think I may be having a heart attack. I couldn’t sleep, and just stayed awake until I was able to see my Dr. in the morning. This pain that I was having started earlier in the week, but that particular night was when it reached the point of extreme pain and zero intolerance. She sent me for a MRI and X-rays. I was told that I had bulging discs in my C5 and C6 of my spine, impingement on my nerve, and a tear in my tendon of my left shoulder. My X-rays showed that I had scoliosis and claimed that the pain in my hips was arthritis. I was shocked. I hadn’t done anything that could have caused bulging discs, since I was on so many restrictions from lifting and such. It didn’t make sense. I was told that if it did not heal, I would need to undergo surgery. Luckily it healed on it’s own. For the rest of the summer, I had constant pain, muscle spasms and twitchy muscles. I also started to feel extremely noise intolerant and cried easily. I had rashes appear on my legs for no apparent reason. By that Sept. of ‘08, I had eye muscle surgery. It was adjustable sutures, so after the initial operation, I was woken up and the surgeon put numbing drops in my eyes. He had to finish the procedure while I was awake. It was very scary to see needles and threads coming directly at my eyes , but I got through it. The aftermath of this particular surgery was very painful. My eyes stayed closed everyday for a week, because anytime I tried to open them, it felt like needles and onions stabbing me in the eyes. Very Painful. During my healing time, I had gone to have my thyroid levels checked by my Endocrinologist. I was informed that I was Vitamin D deficient and needed to start taking Drisdol 50,000 units 1 x week.
January of 2009, Slurred Speech again….. This time, I already had my neurology appt. scheduled for a follow up. I could feel the tightness in my tongue, throat and jaw that it was going to happen. I told my neurologist that I can feel it coming on, I knew I was going to start to slur my words. Nothing was done. This neurologist was the one that diagnosed me with having a TIA, I thought for sure, they would want to send me right to the hospital for evaluation…. Something, but again, I was brushed off. I went right to my Family Dr. and told her that I feel like I was going to start to slur my words. By the next day, it started. I went to a second opinion neurologist and had all repeat tests done, blood work, MRI and EEG’s. This Doctor noticed abnormalities on my EEG from my first round of tests, and again this one. My label of having a TIA was taken away, and I was now told I have simple partial seizures, and the cause, Epilepsy. (Which, now I know is the term for , unknown origin), He tried to explain to me that my brain was misfiring and getting stuck, and that’s why my seizures lasted for weeks, he also said that I have anxiety disorder.
During this time period, I had experienced a lot of strange symptoms. Pain in my heals when my feet were up, numb hands for 6 hrs, itchy rashes on my legs and hands, random muscle spasms, and sciatica pain. The first time my muscle spasm struck my upper thigh, I was out Christmas shopping with my husband and children. I walked into the store, “Normal”, but 10 minutes later, my leg started to spasm and my son, who was 6 at the time, had to walk me over to the nearest bench to sit down. Once the spasm eased up, I asked my husband if we could leave. As soon as we started towards the door, my leg spasmed again and I had to limp my way to our truck. This happened on a couple more occasions, but luckily I was home when it struck. Same goes for the painful spasm that struck my upper back/neck area. I was sitting at the kitchen table, having a cup of coffee and my 3 year old daughter was eating her breakfast. I was talking on the phone 4-way with my two sisters and my mother. Suddenly out of nowhere, my upper back had a burning pain and I became stiff, and stuck in one position not able to move. I began to cry and told my family , “I can’t move! I am in so much pain, I am frozen!” My 3 year old daughter was just watching me, and my sister and mother rushed to my house while my other sister stayed on the phone with me. When they arrived, they were able to get the phone away from my ear and I was given Ibuprofen, massage, heat/ice. I was literally stuck in the same position for 5 hrs. This happened a few more times and was finally put on Zanaflex to relieve the horrific muscle spasms.
More time lapses and I have had brain fog, emotional weepiness and short term memory. I was forgetting some of my friends names, forgetting what a “stove” was called, and had great difficulty concentrating. My vision was still horrible from the double vision, and I was prescribed prisms for my glasses. I was still very light sensitive and I had a heightened gag reflex along with sensitivity to smells. I was unable to drive my car due to visual impairment and seizure disorder. I had a hard time coping with my independence being taken away from me and not being able to do what I want and go where I want to go, without needing to depend on someone else. Everything became more difficult, getting rides to my 100’s of Dr’s appointments each week, and picking up prescriptions and even small loads of grocery shopping. I started to become overwhelmed when in large crowded places with bright fluorescent lights. I would have to leave any place as soon as I started to feel uncomfortable. One night my husband took me out for dinner with friends to a casino. I felt very uncomfortable. The noise, the lights, the crowded people. It was a sensory overload! My vision once again was a big issue and I felt unsteady when walking. I had gone to use the bathroom, but when I was finished, I couldn’t find my way out. I was very embarrassed when I walked right past the door to find myself looking at “myself” in the mirror. I pretended to fix my hair and waited until someone opened the door so I knew where to go. My husband was standing and waiting for me and I laughed when I came out and told him how I got lost in the bathroom and couldn’t find my way out. It was funny and scary at the same time.
Most of my time, I stayed home. I was fighting for disability and had some uncooperative Doctors along with some great Doctors. I was asked so many times when I was going back to work, or if I was seeing a Psychologist for my depression. Sometimes these Doctors need to realize, that their patient becomes depressed because they dismiss their patient and label them incorrectly. It took two agonizing years to finally get Social Security Disability. At last, I thought, I could heal and put all of this behind me. Unfortunately, I had a full time job in seeing Doctors, having tests, and taking medications. At 1:00 pm daily, my body told me it was time for a nap. I was constantly fatigued. I also have two children that need their mom and the chores around the house seemed very difficult at times. Thank God, for my Husband, Mother and Mother in Law. I could Always count on each of them to give me a hand.
October 2010, I was scheduled to have an Orbital Rim Implant Surgery to lift my eyes back into a more “normal” position because they were sinking in too far, making it very difficult to see anything below me. My surgeon called me the week before and told me that while looking over my CT scan of my orbits, he noticed how full my sinuses are and that I need to see an ENT Doctor first. My surgery was cancelled and I met with the ENT that week. After my exam, the ENT revealed that I had a deviated septum and chronic sinusitis. He also said that he and my eye surgeon should do a combined surgery. If I only had the Orbital Rim Implants done and not fix the deviated septum, the sinus problems could make the eyes sink in still and the surgery would be a waste. I had my surgery scheduled for Feb. 2011 for the combination of Orbital Rim Implants, and sinus surgery. December,, the week before Christmas, I was doing something in the kitchen, and someone asked me where something was. I went to point my finger to show them wear to find it and I noticed a really wide based hand tremor, worse when intentionally moving it. Pointing, reaching, grabbing, writing, eating and drinking, ,my dominant hand had an uncontrollable tremor. I had gone to see my Family Doctor for a follow up on a recent abnormal Pap Smear. While I was there my Doctor noticed how bad my hand tremor was. She immediately started to do a neurological exam on my. My knee jerk was still showing hyperreflexia and now I had this hand tremor that made me miss my target. She scheduled me for another MRI and set me up with another neurologist in Rochester, NY. She believed that my “condition” was progressing. Within the next week, I was out in Rochester, seeing this new Neurologist. My exam, was showing abnormalities, knee jerk reflex, tremor, tipping when doing heal / toe walking . My MRI’ s were still clear, no lesions were showing and the Doctor ruled out MS. He asked me if I had seen a Rheumatologist,, my answer…Yes. RA, and Lupus ruled out. Fibromyalgia and Chronic Fatigue was mentioned multiple times from him as well as other Specialists. This neurologist set up more tests, VEP, BEAR and EEG. I spent an entire day doing these tests. Two out of the Three tests came back abnormal. My EEG, which at this point was the 4th, was showing abnormal brain waves consistent with seizure disorder. The VEP test also came back abnormal in my right eye. The copy of my report was sent to me by mail. The report stated , “ Abnormal test due to prolonged latency consistent with demyelinating process. The day the Doctor called me with my results, he did not mention what the report said. He said that my test was abnormal because of my eye disease history. He then proceeded to say, “You may have Central Sensitization.” At that point, I knew I was getting another brush off. I nicely said, “Thank you for calling and have a good day.” I hung up the phone feeling so frustrated, but then laughed it off . So far, I have had multiple doctors all trying to put the label of a syndrome (cluster of symptoms) with no known cause, on me.
I was actually fearful to let my regular neurologist know that I had gone to see another neurologist. I have had 4 different neuros, one of them saying TIA, another one telling me, it’s all in my head and anxiety, another one saying, central sensitization and my regular neurologist, anxiety, depression and seizure disorder. Within the past 4 ½ years, I have seen 4 Neurologists, 7 Ophthalmologists, Rheumatologist, Cardiologist, 2 Endocrinologist, Psychologist, 2 Allergists, ENT, Orthopedic, my Family Doctor, and now a LLMD. (Approx. 22 Dr’s.)
I started to hang out on medical forums to search for my own answers. It was brought to my attention that all of my ongoing medical conditions and symptoms sound like Lyme Disease. I requested blood work to be drawn but it came back negative. I figured Lyme couldn’t be the culprit because my blood tests were negative. I spoke with my Endocrinologist regarding my symptoms and he was concerned about some “skin tags” I had around my neck. He said that it is usually a tell tale sign of Diabetes. HERE WE GO AGAIN!!! I was sent home with a request to eat a very large ice cream with extra syrup and toppings, wait 2 hrs. and go have my blood drawn. My results were showing that I was Hypoglycemic. Now I have to go have a blood glucose test at Centrex for 8 hrs. With more questions, I returned to my medical group forum for answers. I went to the Lyme Disease Forum and sought out some guidance from my friends that I have made. It was still requested that I didn’t give up on the Lyme Diagnosis because the tests are not always accurate. I was given great information and Websites to check out and a list of LLMD’s to contact. I finally made an appt. with the Past President of Ilads. I was so excited to see him and go over my history. Even though my tests were negative, I was put on a month of Doxy based on my symptoms alone. My hand tremor started to ease up , but I also had some negative responses. I felt Flu like, extreme fatigue, muscle twitching, and ear clicking sounds. I started to have pain in my left leg near the back side of the knee. Some of the negative responses could have been a “herx” reaction. When I went for my follow up one month later, I was basically clinically diagnosed with Lyme Disease and two co - infections, Babesia, and Bartonella. I have been on Lyme oral antibiotic treatment for 6 months. At this time I cannot say if it’s working or not. My main symptoms are hand tremor, sinus blockage, brain fog, typing dyslexia, using wrong words to describe something, constant pain, fatigue and math solving problems. At my last appt. , IV antibiotics were discussed. I know I have a long road ahead of me and a lot of treatment. I fear for what this is going to do to my children (seeing their mommy so sick), I fear that my husband may feel like “Is this worth it?”, I fear of the financial burden this will cause.
I just recently underwent another eye muscle surgery on Feb. 2012. This time, the surgery was a success and my double vision is gone in my front view, but remains when looking up and to the left. It’s not too bad, and I feel like a big part of my life that has been given back to me. At the end of all of this, I want the word to get out there. People and Some Doctors really do not know what having Lyme Disease, Babesia and Bartonella can do to someone. It has messed with my brain, tissues, muscles, and organs.
These are some questions we need to ask “The People In Charge Of This Mad World”…….. What is Lyme Disease? How many people really know about it and how you can get it? Are OUR Doctors educated about this disease and how much damage it can do to your body? Why are the guidelines for diagnosing and treating Lyme a controversial issue? So many questions left unanswered, while there are people suffering or becoming infected every second of everyday and I am one of them. I may have Chronic Illnesses, but it hasn’t taken away my spirit or drive to enjoy life, even if it’s my “New Normal,” I’m still alive and I am grateful for that!!!
I hope this helps others out there trying to find out the truth, real life, real pain, not in your mind but something caused by Lyme disease, get tested, find out for sure. If it helps one person that is my purpose and mission...
Thank you for your time to hear my story,
|Bruce and Pamela|
Thanks Pamela for your story we wish you well and every success to your recovery. You have given strength and purpose for many others out there that may suffer the same illness.
To everyone reading, even though this is a true story, please consult your doctors for professional opinions and advice on your symptoms that are similar before coming to any conclusions or diagnosis. This post doesn't recommend or give advice in any manner to your symptoms, always consult your doctor first.