Karen,
Here's the rub......Lyme Disease is very difficult to diagnosis, almost impossible in some cases. It often does not come up on blood work, and the size of the tick that carries Lyme Disease is the size of a poppy seed!
I have been infected over 5 times and never saw a tick or knew I was bittten!!! I have had the co-infections which are even more difficult to diagnosis as most doctors don't even know about
them, and tests are slow in coming. As I said, I had Babesia (a similar disease to Mylaria) and Bartonella, which also has many strains. Each one has a different symptoms an different treatment. You really need a Lyme Disease specialist who knows how to diagnose on symptoms not blood work. However, often blood work will confirm, but usually after treatment for a while. I was treated over 13 years, first on IV antibiotics, then on heavy doses of injections of 2.4 million units of bycillin IM a week. Then added flagyl later in the mix, and orals as well. Metformin for the Babesia and I dont' even remember what I took for Bartonella. I know however, that I'm not feeling well again, with severe fatigue, muscle aches, still joints, back pain, headaches. I think I have something rearing its ugly head again.
ITS IMPERATIVE THAT YOU RESEARCH LYME DISEASE. They originally told me I was in need of a psychiatrist, then I had MS, then Fibro, it went on and on. I was bedridden for over 4 years at one time, unable to walk or stand. Pain and fatigue, low grade fevers, anxiety attacks, rapid heart rate, muscle spasms, symptoms would cycle also. (along with the life cycle of the spirochette) I know it all sounds overwhelming, but its worth the research. Thats how I finally got diagnosed, by doing the groundwork. Many doctors don't believe Lyme exists and if they can't get a written result from a lab confirming something, they don't do a thing. Plus the political pull of the insurance companies and HMO's who don't want to pay for the lengthy and costly treatment have made many physicians reluctant to treat or report as they are being prosecuted. Its a very sad state of affairs. SO MUCH to learn. Depending on what part of the country you live in, some areas are SO ENDEMIC its almost a slam dunk that that's what you have. My mother and son have had it also. My son had to leave his senior year i n HS because of his mental and physical problems. MANY neurological problems arise with this illness also. Some people are diagnosed incorrectly with bi-polar, anxiety attacks, mental illness of some sort, seisures, etc. The list goes on. There is a long list of symptoms that you can check out. I had almost all of them.
Most people think that in infectious disease doctor is all you need, although NOT TRUE, IT HAS TO BE A LYME SPECIALIST. If after you do the reading and see how much of it applies to you, there are many forums that can recommend a lyme literate physician near you. Many people fly hundreds of miles to get the right doctor.
I finally started getting good treatment. I believe she is now on a committee for Lyme and a patient advocate. One of her children had the disease and made her a solder in the battle. Also, Dr. Burriscano has WRITTEN THE BOOK, ON TREATMENT AND SYMPTOMS ETC. You can also google him.
Please let me know if you have questions or find that you may want to pursue the possibility of this diagnosis. It's very tricky and called "The great imitator" The morning "brain fog" is almost a universal complaint with LD. Be proactive, don't just accept that you have a syndrome with no cause!
I have read stories of patients in nursing homes, diagnosed with MS and they had been UNCOMMUNICATIVE for YEARS. Treated with the right antibiotics (abx) and were talking and walking in 3 months. Much more to learn....
Your comments and input are welcome.
Blessings and be well...
Chronic lyme disease, Bartonella, Babesia, diabetes, immune disorder, fibro, chronic fatigue, spinal stenosis, depression, lyme arthritis etc......
I took out the name of the doctor who treated you, and the location of the other one, because it could cause problems for the site. If you allow access to your HealingWell email address - (go to "my profile") - people can look up that info there. Thanks for understanding.
Debbie
Post Edited By Moderator (Acheybody) : 7/7/2012 12:12:19 AM (GMT-6)