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.

Complexities of the Lyme Infection

     Lyme Disease is such a complex disease it is almost too hard to grasp what it does in your (my) body. There are many layers of the disease and symptoms.
     The spirochetes entered my body, and I started to feel sick. I went to a doctor. Many doctors. This is where the information got twisted and greatly misleading. As I have posted, I saw many doctors over many years before it was 'proven' on paper that I really did have Lyme disease. I went through twenty years or more of simple to very complex symptoms and help was askew and discouraging. The more doctors I went to, the more I felt I was never going to get better, and that I was just a mess by design.
      Over the years, and with a LOT of research and the help of Lyme specialists I have begun to understand the complexities of the disease. Which by the way, I would like to refer to as an infection, not a disease. It may be called many different diseases because as it progresses it becomes what doctors have recognized for years as other things. I, for one, do not appreciate the word disease. Lyme is an infection. Period. If you will bear with me, I will call spade a spade and refer to Lyme as an infection.
      With that out of the way, when the infection was delivered into my body, it was very happy. It found it's way through my blood, muscles and finally to my nervous system, where it kind of settled down, and made an home. Not just one home, but many, as it slowly reproduced. This infection is one of the slowest to reproduce of any infection, including TB, which is very slow. As the spirochete enjoyed living off my nerve cells, my body began to malfunction.
     The spirochete is intracellular. That means it can actually enter into a cell and live in it. It makes a meal out of the innards, and then the cell wall collapses around it, and it stays there as long as it wants. When the cell wall collapse over the spirochete, the antibodies can no longer find it, as they think the cell is a regular cell, not a home for a spirochete. This is one way the spirochete lives. The infection even at this stage can cause as many symptoms as it please. Depending on where it decides to live, it causes the symptoms that result. In my case, it seems to me the infection is in my brain, spine, and nerve cells, causing problems with my nervous system and muscular movements. Not to mention tics, spasms, unbearable joint pain, burning sensations, and many other symptoms. At this point of my infection though, I believe the spirochetes are everywhere, to a lesser degree. As antibodies to search for the infection, they find toxins from the moving, hiding spirochetes. The result is tremendous inflammation. Again, wherever the spirochetes, and or co-infections reside equals what my symptoms are, and how decreased my abilities become.
      Spirochetes also form colonies, covered by a protective covering called bio-films. These bio-films again protect the spirochetes from being detected by antibodies. Combine this with any other-co-infections I may have, and no wonder  I have been a complete mess.
       Having been treated, in the past, by only oral antibiotics, I experienced a tremendous amount of herxing. This is when the antibiotics find the spirochetes which are out of hiding, and vulnerable to attack. When they are killed, they give off toxins which cause more inflammation, which cause a great deal of pain, nausea, brain fog, extreme fatigue, etc.. All Lyme infection symptoms, times ten. It is the only way to get to the other side.
       I have been blessed to now have a treatment plan which takes all this into consideration and supplies my body with antibiotics, on and off, and always with supplements which replicate and replace the damaged cell innards. This way, as the spirochete and their toxins are kicked out of my body, (their home), the new cells that replace the damaged ones are healthy. The herxing is less severe in this case.
        This is the top of the iceberg of the Lyme infection and co-infection habits. I believe I am close to the truth in the description. As I go along I learn more and more. I have an insatiable desire to know all I can about these infections, and to share what I find. So, more to come, but right now I have tired myself out.

How Lyme Disease and it's Treatments Work.

A reminder. This is not an endorsement of any treatment plan.