Began after a trip to the mountains of North Carolina. Flu like symptoms. No bulls eye rash. Although we do remember seeing a tick in our motel room. Finally went to the Dr.. He suspected possible Lyme and did an Elisa which came back negative. After the negative Elisa (despite obvious clinical symptoms) the Dr. did not pursue Lyme any further. My health quickly diminished and eventually (after two years of misdiagnosis) I ended up unable to walk and ended up in a wheel chair. My conitive and reasoning was severly diminished. My short term memory was really bad, began having shortness of breath, bells palsy on left eye, severe muscle twitching, joint pain, severe headaches, problems sleeping, anxiety and irrability. Had I not eventually gotten to a lyme literate physician I very well may not be typing this. After six months of antibiotic infusion I was able to get out of the wheel chair and began to regain my strength. Added treatment for obvious coinfections help me with my memory and cognitive ability. Three years later I am doing excellent and even back to exercising. I only hope that the day will soon come when all the politics and bureaucracy associated with lyme will be put aside and the ultimate decisions will be based upon what actually works. The Elisa is a test that (in my opinion) is a waste of time and money. Clinical symptoms should be met with a western blot (Mine was positive two years later) and further definitive testing and treatment should follow. The ultimate diagnosis should, however, be clinical, despite the accuracy or unaccuracy of testing. A western blot at the onset could have saved me $70,000 and a lot of pain and suffering. PLEASE don’t wait for science to catch up with this disease while multitudes suffer. Thank You…. Scott Seckman….
Comment by Scott Seckman — December 20, 2010 @ 10:41 pm
My 21-yr old daughter has been in treatment for Lyme for over 3 yrs. She is still so debilitated she cannot go to college or hold a job. She is in constant pain, has short-term memory and speech processing problems, tremors, and many days never makes it out of bed. This after being a first-rate athlete in soccer and track. It is beyond infuriating that politicians and doctors who have not seen what this disease can do make blanket pronouncements about what chronic Lyme is or is not. I want these people to come look at my daughter and then tell her to her face that she is not really sick. It is absolutely heart-breaking to watch her suffer. Thank God we have a Lyme-literate doctor!
Comment by Susan Ulanowsky — December 21, 2010 @ 3:02 pm
After two separate incidences of lyme, I was refused treatment on the assumption (my doctor’s, not mine) that the symptoms were from the first infection. That was over ten years ago and I am on total disability. I’ve gone from a super active person to someone who rides the couch all day and still sleeps all night. I can’t afford to pay for intravenous antibiotics and so far all the doctors that I’ve gone to do is treat the symptoms. They ignore all requests for the only treatment I’ve heard of that works.
Comment by Frank Cuoco — December 28, 2010 @ 12:07 pm
I reccomend you read the book by Dr. Qingcai Zhang. Dr Zhang practices Chinese herbal medicine in New York City, and has become a respected authority on many auto-immune diseases, viruses and Lyme disease. In his book “Lyme Disease and Modern Chinese Medicine” Dr. Zhang makes a compelling argument for using traditional Chinese herbs – many proprietary formulas he has developed using his own extensive research and treatment experience.
His treatment is very affordable, but we choose to go with his treatment for my son because after much research, we felt it was the best choice. My son is doing well and going back to college after taking a quarter off.
Being a chronic Lyme patient, this site and blog Lost in the Woods means a lot to me. I am glad that Roanoke Times has been spreading the awareness because it is so important that everyone learns the reality of Lyme. Thank you so much
To find a doctor in your area, or as nearby as possible, join one of the Yahoo State Lyme groups. If you’re in Virginia, the group is called VirginiaLyme. You can ask members for doctor recommendations. You can also find LLMDs at the LymeDiseaseAssociation.org website. See “Dr. Referral” near the top of the page.