Ok thanks.
There is so much info on Lyme, it would be very handy to have a simple, ‘Lyme for dummies’ fact sheet, in plain English, easy to understand for anyone on a high Topamax dose! ha!
missmoss83
how convenient that would be but quite impossible. I have thousands of friends on facebook with lyme disease and our symptoms are so varied its unbelievable. For instance, many with the disease suffer with heart palpitations, I never had that problem, I went straight to stroke. I know many in a wheelchair, unable to walk. I know many that suffer from uncontrollable body jerks. I know many that have been bedridden for years. Many like myself have suffered stroke. Yet many have none of the problems I just listed but other maladies. Its a very hard disease to diagnose because of the many varied symptoms and because the blood test given is unreliable. Also the bulls eye rash that sometimes appears only appears in about 20% of its victims. I have never had the bulls eye rash yet I have been infected many, many times. I have met many of these people at various Lyme rallys. I attend one yearly in Washington, DC. I have traveled to Boston to rally in front of the IDSA headquarters, I have traveled to and spoke at my state capital in Harrisburg. Those of us with the disease have had to become our own advocates because of the corrupt guidelines. A few states have recently dismissed the IDSA and have written laws requiring insurance companies to pay for treatment. We are finally making headway. But, I must also state that what works for one may not work for another, I have been on oral doxycycline the antibiotic recommended to treat lyme disease for months at a time, it didnt work, I was on IV antibiotics for several months, all that did was help to cause my stroke it did nothing to stop the lyme from ravaging my body. When I was released from the hospital, the lyme was still effecting me, I finally went to an herbalist and after 9 months of various herbal treatments I finally reached remission. Others have had no luck with herbals but got better after years of IV antibiotics, only to relapse years later. Its a frustrating, painful disease with no known cure.
I’m sorry, but I’m
Finding it hard to understand if your trying to be realistic or negative. I don’t really want to continue this conversation as I don’t want to worry Lizzie unnessisarily. I think we are under the seemingly correct belief that she will make good progress and recovery .
For some reason Lyme threads attract nutters and extremists and it’s not helpful and just freaks people out. If that annoys a few here, there are no doubt hundreds of Lyme groups out there where you can rail at the medical establishment. Please go there and stand on your soap box. Not here.
DL and MAVLisa – I am very keen to hear how you get on with your treatment and really wish you both the best. Please feel free to post all you like about it.
Good luck Lizzie! I’m so worried now as share so many symptoms with you - eek! x
DL has realised that this was not Lyme Disease. Thanks DL for keeping us all informed and keeping an open mind. 
http://mvertigo.cloudapp.net/t/a-word-of-warning-about-lyme/7329