Monday, January 7, 2013
Flash Mob Day!! Call to Action!
Lyme Disease
Flash Mob Day
May 4, 2013
Organize a group to wear T-shirts, or just
wear one wherever you are. Contact:
twistoflyme@gmail.com.
A group wil be happening on RT. 1
Waldoboro Maine
T-shirts, hand out information, provide food/snacks/coffee, balloons and any other attention getting activity. The point is to provide the public with the truth of chronic Lyme Infection and co-infections, and where to go to get help.
Monday, December 31, 2012
Follow up on Dec. 4th post, dealing with death
I really went through a lot of herxing the week my father died, as well as a very close friend of mine. Double whammy. I had symptoms I have not had since herxing them out a couple of years ago. This included that 'stretched like a strummed elastic' feeling throughout my body, heaviness of my limbs, headaches, brain fog, etc.. You know them all. I declared that I would not change my treatment protocol because I 'knew' it was stress related and was sure it would go away when the stress declined. I am so proud of myself! I think I have learned a thing or two during this long trial. My symptoms did resolve after I got a hold of myself and have not returned. This is a pleasure for me to say. I have to come to grips with the fact I will always have some left over neurological symptoms under certain conditions. This is a little hard to adjust to, as I never know when something traumatic will occur. I wish I could say symptoms will never occur again, but as all long term Lymies will tell you, you can get it under control, be 90% your old self, and then Wham, something brings it on. ugh. This makes it hard to work, make long term plans which include an over abundance of activity, or travel for an extended period of time. So, it is not all good, but it is tolerable and manageable. As long as I know the symptoms will not last, I'm happy. :)
Saturday, December 29, 2012
Living Proof
There is a lot of controversy out there, even today, about the effectiveness of long term antibiotic treatment. I would encourage patients helped by long term antibiotics to ban together on this subject. We need an organization of long tern antibiotic survivors/success stories. How do we do that? Not sure, but there is a way. Perhaps a web site we could all sign off on and tell our stories on. This should be compiled and sent to legislature and the CDC/guideline acceptors. I know their are many of us out there. There must be thousands, maybe a lot more. Anyone know just how to start an organization like this? I would work along side someone. I am sick and tired of the stories I keep reading stating long term antibiotic treatment does not work. In my case I went to a specialist and received IV therapy, followed up with specific oral antibiotics to wash away the remaining Babesiosis and such. I am doing well, better than in years, all due to the therapy done by my specialist, Dr. Jemsek. He knows what he is doing and has 'saved' many lives. I know, I hear their stories, a lot like mine. I would like to see a reunion of these patients and perhaps that would lead to a public list of long term antibiotic success stories. I myself am LIVING PROOF that long tern Lyme Infection/Co-Infections persist and get worse over years and decades. I am also LIVING PROOF that proper treatment makes the symptoms dissipate. I am living again as I never thought I would. This is a challenge, come on people, even those around the world. I know you are out there, you read this blog. 2013 will be a year to stand up for ourselves and for others who are ridiculed by doctors and misdiagnosed like I was. Living proof, I am.
Monday, December 24, 2012
Saturday, December 15, 2012
Jemsek's Special Clinic
I know, the name is Jemsek Specailty Clinic, but I also know it is actually a very special clinic. Not only did they bring me back to life, but they have become like an extended family to me. They have treated me from the beginning in a way that first helped my body become stronger cell wise, immune system wise, and inflammatory wise. The nurse for that was an A+ support person who emailed, called and gently explained what was happening in my body. Then IV, and another great nurse, who taught us how to administer IV at home, who watched over each initial antibiotic test, and who became a very familiar and trusting help. From there I could go on the the triage nurse, who has been there for me the past few months, helping me with prescriptions, and personal needs, the head nurse, the billing 'department', on it goes. I feel like I know many office workers, scheduling personnel, initial office visit nurses, and many more. All, and I mean all are trained, and follow through on how to be compassionate, patient , caring, and encouraging to their patients. It is extraordinary. Needless to say, Dr. Jemsek himself is the role model for all this. I have never experienced a time of discomfort or a disbelief in what I said when I was with him. I cannot say that for the majority of other doctors I saw over the decades leading up to going to Jemsek Specialty Clinic. I have always thought they go above and beyond the call of duty.
When I opened a piece of mail from the clinic yesterday, I expected it to be some kind of clinical paper. Instead, it was a condolence card at the death of my Dad, signed by all the clinic workers. Again I felt like a member of my family had giving me some love and support through this hard time. I mean, who does that these days? Who treats not only the 'disease', (infections in my case), but the cell structure, immune system, the psychological piece, and to top it off, the emotional piece? I can only say, that the stress I have been under has been relieved in great part due to the prayers, friends, cards, meals, hugs, and now, the special people in a special clinic in Washington D.C..
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