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.    :)

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.

Fellow Lymies, it's a new beginning

                           Merry Christmas
 
                                 and
 
                         Healthy New Year!

New Jersey Herald - Lyme disease sufferers find comfort in each other’s company

New Jersey Herald - Lyme disease sufferers find comfort in each other’s company

OH, SO VERY FAMILIAR

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..

Handling Death with Lyme Infection

     This week I lost a close friend suddenly, then last night I lost my Dad. I was able to be with my dad. However, these experiences have been hard and heart wrenching. I have to say I am doing ok, but I wanted to express the Lyme herxing part with you.
     Sometime over the week, which is a holiday week from Lyme treatment, I began to have symptoms I hadn't had in a long time. I began having twitches in my shoulders and legs, and sometimes my whole torso will spasm to one side or the other. It is always a slightly alarming occurrence. I haven't had twitching or spasms for a very long time. My neck has sudden gotten too weak to hold my head up, and my neck and shoulder muscles are 'killing' me. My hands are shaky and seem to have a mind of their own. I have had brain fog, something I have not had in a very, very long time. Lack of sleep and an increase in my pace of life have added to the symptom increase. Even Epsom Salt baths have led to an increase of herxing. which in the long run is a good thing. I have not changed any of my medications. I am facing the pain head on, and letting the herxing slow down at it's own pace. I know it will be less stressful in a short while. I expect at that time to lose the old symptoms and gain the increased functioning I have had since IV treatment and subsequent treatments.
     All this has made me realize I still have a way to go in getting rid of the darn spirochetes which are obviously still invading my body. They are taking advantage of my stressed systems and my inability to keep the bugs at bay.  I know I need to keep the pace of my life simple. This may be the case forever, and as time goes by I will learn how to keep steady through tough times in order to keep symptoms from reoccurring.
     All such a learning process, even though I have been dealing with Lyme for a long time. The only thing I can say is that it has 'only' been the last decade I knew what was messing with my body, and only the past two years I have put into practice the treatment I 'knew' was the one to correct my sickness. I count Dr. Jemsek and the Jemsek Specialty Clinic as one of the greatest blessing to happen in my life. If I had not been treated by him, this kind of stress would put me on bed rest for a week or weeks. What a difference.