Hope For Lyme Help
Abby Rowland Webb age 28 my life with Lyme
My Lyme story is like many others stories of people who are suffering with this horrific disease. Many cases are even worse than mine and many have also suffered for years. My heart aches for so many that do not have the support of family and friends as I’ve had while fighting this debilitating illness. I was born with Lyme or got it from breast milk, so I have been battling my entire life. At age 4 I had started suffering from what I called “Head Hurts” that would blur my vision and make me sometimes violently ill. If it was hot and I was too active it could come on as well. Also, if I was really excited about going to a movie or on a trip, the stimulation could cause a similar reaction. I was tested and treated for allergies and as I got older got new ones and lost some of the old. Also since age 5 I have suffered from pneumonia on and off. Now it is two to three times a year. By age 5, I can remember being so angry sometimes for no reason and throwing tantrums. Now we know these are normal unpleasant Lyme Rages. During these times my parents, sister or grandparents would hold me as tight as they could and I would calm down. I was so sorry afterwards that I would cry and apologize profusely. I didn’t know why I would have said such mean things. I eventually learned to control that somewhat, but as I got older I still would lose it and was so sad afterwards. My Grandmother always had said “this isn’t our Abby, something is going on medically.” I’m glad my family felt that way. My parents looked for answers at Philadelphia Children’s Hospital, A I DuPont, Johns Hopkins and two or three others where we were given a plethora of diagnoses. By age 9 I had been diagnosed with migraine syndrome/phenomenon, abdominal migraines, (at this time I was retching 12-18 hours a day some days) and ligament extension (my joints would go in and out; I suffered all my life from severe joint pain and swelling.) Also I was told I suffered from some kind of gastric distress after a stomach biopsy. I did have better days and my parents let me do as much as I felt I could, even if that meant the next day I would be ill and bedridden. Otherwise, I would have missed out on everything in life. If my parents hadn’t fought with the schools to let me go on class trips etc, if it was a good day, I would have never had been allowed to go. My parents said the worse and saddest was the treatment from the school psychologists. Like doctors, if they can’t diagnose something, it must be all in the child’s mind. At least this is how we were treated. As if I would rather be in pain and retch than have fun and play as a normal child. I know now that adults are often told “it’s in your head”. Now as an adult let me tell you it is not!
My parents took me out of school in 7th grade after many years of fighting with the school board, teachers, and nurses! I was only able to do half a year in fifth grade and in sixth. I started being home schooled and I was able to learn how to read by age 12. Most teachers never took the time to help me learn because I was unable to learn as a normal child because I had learning disabilities caused by Lyme as we now know. I was never able to learn math well and never could hear phonics and still can’t. Once I learned to read, I have been reading almost two to three books a week since then, but very sadly in April I lost the ability to read again. Just recently, I was able to read for the first time with the help of my Doctor and the great staff at Hansa Center where I am getting my treatment in Kansas.
If a teacher or my parents were to read to me I was able to learn my lessons much better. I found a love for history and it made school, when I went, bearable. At age 10 we found out after years of my parents begging for me to be tested for a reading disability that the reason words and letters would move around on the page was because I was dyslexic, also I had problems with my optic nerves. I had to learn other ways to learn and memorize information. The medications for migraines and pain caused low blood pressure so I fainted quite frequently. Lights that were too bright or active made me sick and often times I was sensitive to loud noises .These are thing they are still working on in my treatment. I still had some good days though not always when something was planned. My friends were loyal! If I couldn’t handle a movie at the theater they would come to my house and watch a DVD or just hang out.
I was able to go to People to People as a student ambassador to England, Ireland, and Wales. Those 3 weeks were wonderful and with the help of a chaperon who took responsibility for my medications, I had only two or three bad days. I did have lots of swollen joints and joint pain. I was now 16 and this was the longest good stretch I have had up to this point. I went to People to People in Colorado along with Doctors Without Borders, but was sent home because of migraines, retching and being in the hospital overnight which meant a councilor had to stay with me. There were many such experiences but after suffering with both short-term and long term memory loss (there went all of my math skills!) for periods of time, much of my childhood is a blur. I have lost most of the memories of my father, who died when I was 14, and Grandparents. It’s just gone.
All this time, since age 6, I had had Lyme tests, so I guess doctors thought it could be Lyme but the tests were negative so I’d get another diagnoses-MS; Fibromyalgia; Parkinson’s; Lupus; Colitis; Irritable bowl; even ALS and Cancer were suggestions or flat out guesses by doctors. I have been pre-menopausal twice (by age 22). It was even suggested I had Alzheimer’s like symptoms. I was finally diagnosed with Lyme at age 20. I have had days, weeks, months of being bedridden, using a wheelchair, walker, or scooter. When I have a good day I cram as much as I possibly can into a day. Then I no longer had good days, just only good hours, then by June of this year, none of those, just one long running bad day. My family says my good days wore them out, but we had lots of fun or got lots accomplished.
I started gaining weight quickly after my diagnose of Lyme and before becoming engaged. I went from 141 lbs to 302 lbs. in less than 5 months. I was married at age 23 and don’t remember much of my wedding other than what I have seen from videos and pictures. It looks like it was a great time and we had lots of friends and family there and everyone looks so happy. I really went downhill shortly after. Between age 20, and now age 28, I have been on IV antibiotics for 4 years and 4 years of orals! I have had 6 months out of 8 years with no antibiotics, other than for normal pneumonia and bladder infections! I was actually able to work a little for about 4 months though still on full time meds for pain. I was luckily working for a friend who understood the bad days, poor math skills, fainting, and he allowed for down time when I needed it. This spring’s symptoms started to return rapidly and I was diagnosed with full blown Lyme, Babesia again, and Rocky Mountain Spotted Fever (RMSF). I had previously fought Bartonella and Babesia. Started oral antibiotics last May and was as SICK AS I HAVE EVER BEEN!!! After one ambulance trip and 2 other trips to the ER I stopped taking the meds because the Herxheimer reaction was so bad. My kidneys, liver, and heart have now been affected. Again, the Hansa Center has gotten a grasp on my Ventricular Tachycardia which is basically a sharp and sporadic increase in my heart rate that is usually the leading cause of sudden cardiac death. This time I truly thought I was dying! I knew I had to do something and antibiotics had not worked and would most likely end up killing me slowly, or quickly in the case of my heart. Lesser of two evils was not something I was ok with. I found the Hansa Center through a friend on Facebook and they were able to take me immediately which was another blessing that I have been given! After arriving at the center in a wheelchair and having to use my walker, and having many cognitive issues, I am improving!! Thank you Hansa!
The missed events, lost memories, hurtful things said by doctors and other non- believers are just part of my illness. The expense and hardship on my family has been awful. The costs of many years of treatments, many prescriptions, doctor’s visits, ER visits, traveling to Doctors and clinics, necessary travel expenses, and tests and test and tests have cost my family and my own inheritance from my Dad, close to $500,000. This is all without insurance after being dropped by my insurance company for treating and testing for Lyme!!!! Besides my inheritance, my mom and I lost a house and I had to declare bankruptcy with my now ex-husband. This last treatment has taken help from my step-father that he can’t really afford and personal loans and credit cards. Lyme hurts so many in many ways.
The journey to cure my Lyme disease continues.
I spent 6 weeks at the Hansa Center in Wichita, Kansas this past summer after almost dying from herxing on a new round of oral antibiotics. I saw much improvement and made some wonderful friendships in a close caring atmosphere. Unfortunately having been sick for ever requires a long time to get well and doing that long distance is difficult. I was home for a month, able to attend a wonderful fund raiser held by family, extended family and church members. I am so lucky to have so many caring people in my life. It was successful enough to help me go back to Hansa for a week and a half for follow up treatment. Prior to going back to Hansa I got an Oral Systemic Balancing appliance from Dr. Whitley in Fredericksberg, Va. It truly helps me breath and get more oxygen to my brain. Less fainting and my heart beats more properly. It works similarly to a C-Pack machine. It made a great difference for the first few weeks and still is better than not having it. I get a harder appliance on Feb. 6th, which should really help more consistently. Did not see the same amount of improvement on this second visit to Wichita, but as newer symptoms are lessened, old underlying ones seem to come to the surface. Got home for a great family Thanksgiving, but sadly have been failing ever since. I do understand after being sick for over 24 years, I cannot expect to get well quickly, but I do so want to get well. I want to live so badly.
I have been diagnosed with mold toxicity, many nutritional issues, chemical and food sensitivities and biofilms, which apparently are caused by waste or toxins from the bacteria that protects, same bacteria, from your immune system and any antibiotic treatment you are using. Simply put, something else helping you not get well.
My goal is to be able to continue trying to get well by being closer to home and staying longer in treatment. I cannot be too proud to ask for help. I can only promise that once I am better, I will continue spreading Awareness of Lyme Disease and other tick-borne illnesses. I will be available to help others suffering from this horrific disease. I am hopeful I can start the “Lyme ‘Kill’ protocol” with this doctor, so I can get well and back to a life I’ve missed, as soon as possible. I will continue to be a Lyme Warrior. If I am able to get started in treatment soon in Florida, I will keep this page updated. Thank you for reading my page.
See more at: http://www.youcaring.com/medical-fundraiser/hope-for-lyme-health/84351#sthash.HepKORjY.dpuf