Lyme Stories from North Carolina Residents
North Carolina - Real Lyme Stories
North Carolina - Real Lyme Story One
In September of 2006, my daughter was suffering a relapse from Lyme disease, which threatened to blind her permanently at the age of 15. The 60 days of treatment allowed by the NCMB were not enough to alleviate her problem and get her out of danger. I appealed to the Board for a waiver of the 60-day treatment limitations placed on her treating physician, Dr. Joseph Jemsek. I forwarded the Board medical records, case studies similar to her in whom long-term antibiotics had proven successful and letters from her treating neurologist and ophthalmologist requesting that she continue the IV antibiotic treatment that was working.
Following two months of wading through bureaucratic red tape, with the help of my attorney I was finally able to get her case before the Board. In a letter to my attorney, they denied the request stating, "...that a waiver was not appropriate in this matter, as well as not in the public's interest."
This has been a very long year complicated by the Board's decision. To date, I have logged approximately 10,000 miles taking her to appointments and travel expenses alone total $2758.00. This is in addition to the $47,859.00 dollars I've spent out of pocket the last two years for treatment not covered by insurance and over $4000.00 in attorney fees appealing to the Board. I know what it's like to put a sick child in the car and travel 500 miles in one day. The disease alone was enough for her to deal with. The Board made matters much worse by forcing us to travel out of state for treatment when we could have driven only twenty-five miles had a waiver been granted.
To date, her treatment has been successful. She has shown steady improvement and just recently received normal eye exams in her left optic nerve and near normal in the right optic nerve. It has been a long, arduous process getting this disease under control. Lyme disease and Babesia have been the sole cause of her medical problems. The NCMB missed it terribly when they concluded, in opposition to her three treating physicians; the waiver was "inappropriate" in her case. One Board member, a neurologist, took it a step further when he concluded she needed neurosurgery rather than antibiotics to control her condition. Nothing could have been more dangerous and further from the truth.
Had I listened to this Board, my daughter would no doubt be in a school for the blind today learning to survive in a world of darkness. Instead, she now enjoys what every sixteen-year-old looks forward to-driving. She would also be on permanent disability for the rest of her life instead of pursuing her dream of becoming a teacher. And never again would she have enjoyed her favorite hobby-photography. But, thanks to doctors who were willing to do what was right, in spite of the Board's disapproval, she has avoided that near tragedy.
I literally cringe when I consider how close she came to having her entire life devastated by blindness unnecessarily. It's one thing to endure a physical condition that can't be helped. My daughter came dangerously close to losing her vision needlessly. I thank God that I didn't listen to the Board, but rather took the advice of her treating physicians as well as researched the disease for myself and sought the care she desperately needed.
Thank you for taking the time to read our story. Lyme disease left untreated or mistreated has devastating physical effects. I have yet to receive a reason as to why this treatment that saved her vision was considered "inappropriate". I hope our story helps change the way Lyme disease is viewed by the NCMB. It's real, it's devastating, and it's in North Carolina. This disease needs to be treated promptly and appropriately by competent Lyme-literate physicians. For us, the "appropriate" treatment regimen went far beyond the 60 days allowed. Sadly, the treatment deemed "appropriate" by this Board would have permanently and unnecessarily blinded my daughter. Blindness is never "appropriate" when there is an alternative. Long-term antibiotic treatment proved to be a very effective alternative for my daughter. Hopefully by telling our story, measures can be taken to ensure this doesn't happen again.
North Carolina - Real Lyme Story Two
I was diagnosed in November 2004 with Lyme disease and started treatment. My children were subsequently tested and my daughter and son were treated. My son was not definitively negative but I am sure I was ill with chronic Lyme during my pregnancy and he is not a healthy child now. He stopped with his treatment over a year ago. My daughter started treatment. We are both still in treatment. My husband was tested in 2005 and was 7 bands positive on the Western Blot, as was I. He stopped treatment due to medical debt and I have seen him decline cognitively in the last year. He has mental issues due to the Lyme and the longer he goes with no treatment, the worse he gets. He can't handle the stress of the debt and is overwhelmed, yet he refuses to operate on a budget. He will not listen to reason on how he needs to continue treatment in order to get better and handle the stresses we face day to day with this disease. This in turn stresses me out daily. He denies that he has Lyme, even in the face of the test he took. He has not taken the time to research or attend support group meetings with me. To do so would acknowledge that he still has it. He can't deal with the reality of that. No one else knows the burden I carry from the anguish this disease has created for us in the face of a government that allows the denial of correct treatment and persecution of the doctors who seek to help us.
I was sick for years and went to many doctors before finally going to a doctor that Teresa recommended. She is the one who knew to test me for Lyme and subsequently turned my life around with treatment.
My now 16 year old son contracted Lyme disease in NC and was treated here in 2005-2006. He is still undergoing treatment, but now out of state because of the NCMB restrictions on length of IV antibiotic treatment allowed in NC. You will need to contact me with the specific info that you need as he is visually impaired from the Lyme disease.
North Carolina - Real Lyme Story Three
I was first diagnosed in NC, but the Dr. did not know what to do, he had thought I had CFIDS for 20 years until I took the Igenex kit in and asked him to run the test. He said he couldn't read the test, but 3 days later, my Igenex report arrived from him with the message that I do have Lyme disease. I have had to seek medical treatment out of state.
Thank you, we are grateful for your efforts and would like to participate if I quality. My husband also seeks care out of NC and has Lyme, Babesiosis, Ehrlichia, Mycoplasma Fermentans, and Bartonella. My mother was diagnosed with Babesiosis in NC and treated for a year and then had to go elsewhere. My father was 14 bands positive for Lyme and has to go elsewhere. My friends also seek help elsewhere and we have a support group to support one another but could not get help in NC.
We were all positive with Igenex testing. My husband was diagnosed in 2003---he was CDC positive, which is really hard to do. The rest of us were diagnosed in 2004. No one knows how long we were ill or how we got it. However, we were exposed to mice in our first house every fall (they carry ticks on their ears) and our second house has a heavily wooded back yard with deer. We spent a lot of time outdoors playing with the kids and doing landscaping....we will never know the how or when.
We were all treated by Jemsek. Then the kids were treated by Dr. JXXXX and now my son and I see a doctor in NY. We are both still on antibiotics! The kids are done. It has cost us an absolute fortune but at least we have most of our health back.
North Carolina - Real Lyme Story Four
Our doc is in the Midwest. She is an infectious disease doc... and fabulous We just can't afford to do consultations very often due to one income and all 4 of us being sick. She doesn't take insurance either. Sigh ! If only people knew what we go through!
I lived in NC since I was 5. We traveled a bit just for vacation and that was mostly to Myrtle Beach in the summer, but I would say it is 99.9% likely that I got Lyme in NC. I played outside all the time when I was growing up. I don't know when I contracted it, but looking back I believe I had Lyme by the time I was in college. My kids contracted it from me in utero. My husband lived in New York for a while as a kid, but mostly NC. We don't know when he contracted. One of us could possibly have infected each other. Lots of questions, with no definite answers as to when it happened. Feel free to ask any other questions.
North Carolina - Real Lyme Story Five
All 5 of us have Lyme or some co-infection. We used Igenex also and are friends of the XXXX. Treated by Joe Jemsek. XXXX and XXXX with IV antibiotics. The rest with orals. XXXX and XXXX still under treatment so to speak--big gray area here. Be wild, celebrate life and hug, cuddle and snuggle the ones you love, I was infected in 1979 (I know Lyme did not exist then). My daughter XXXX was either infected at camp in the late 1990's or became infected via maternal blood (I know they say this is not possible also).
My husband XXXX probably via normal tick exposure and when we do not know unless he caught it from me sexually (I know they say that does not happen)
My son XXXX I think maternally also or possibly camp. XXXX--camp--and strangely of all my children he is the only one that inherited the recessive rhesus negative gene from his father. My other two children are positive.
Yes we all still live together. My sons and husband are no longer under treatment.
I am in pretty good shape...just dose up on antibiotics when flare-ups raise their ugly heads.
My daughter XXXX is still in a dark battle. Her issues are mental and we still struggling to fix what is going on with her--is it Lyme or something else?
North Carolina - Real Lyme Story Six
My mother was misdiagnosed for 18 years and finally we found out she has Lyme and its co-diseases. I have talked to many, many people including the attorney general's office and the CDC. The attorney general's office finally told me to take my mother out of state for treatment if I wanted to help her. I even got Mr. Howard Coble involved. I don't want to discourage you but my single voice was not enough.......be prepared to be persistent and "mean" if I may. You are entering a world of "deaf ears" with these people. I'm sure these people cringe every time they hear my name. I will be happy to offer you any help that I can. I wish you the best.