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.

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.

Thanksgiving and work

 Thanksgiving was draining. Dinner, company, and lack of sleep all led to a nauseous, pained, fatigued self. Not to mention I have taken a temporary job through the Christmas season. I am happy to be working and making a little money. It is a good trial for possible future work. The good news is that despite all the activity and symptoms, I have bounced back fairly well. Work leads to some pains and fatigue, but it amazes me I can wake up in the morning feeling well again. That never happened before IV treatment. What a welcome relief. The bad part is, for now, I have less time to blog.

ILADS Live Streaming of 2012 Boston Lyme Disease Conference

ILADS Live Streaming of 2012 Boston Lyme Disease Conference

This is showing Dec. 1 and 2. Check website for your country and time zone.

MY STORM: Battling Lyme--Amber Van Wyk

I'm Lyme De-stressed

     Here is  the remedy I used to de-stress myself the other day when some things went south. I kept a positive attitude and faith that all things will work to the good for us. Then, after painting a while and cooking dinner, I ran a HOT bath. I know I've said this before, but I forgot a few tidbits. Run the hot water to about 1/2 to 3/4 full. When the water is running, close the tub doors or curtain so steam accumulates. Add about 2 cups of Epsom Salts, about 1/4 cup hydrogen peroxide, and a bar of pure lavender soap. The water should be hot when getting in, a bit tricky. But you do adjust. If you feel beads of sweat on your forehead, congratulations! You're in the zone! Sit there for at least 1/2 hr., and longer if you can. Always have a bottle of either cold green tea or as I like to do, a glass of water with a bunch of lemon slices squeezed into it. Keep hydrated. Bring a good book and soak. A friend of mine told me to rub on aloe vera gel  after I get out. I don't have any right now, but could easily get some. I usually let the salt keep working on me until my morning shower. When all is said and done, the muscles are relaxed, the toxins extracted for the day, and I feel 'light as a feather'. I always picture Ebeneezer Scrooge at the end of the story when he repents and jumps around the room feeling light as a feather. Whether you are in active treatment, or maintaining the ground you have gained, this is an easy way to detox.

Lyme and Stress

     Everyone has stress. It is when stress is derived from an overwhelming situation, that it effects your bodily symptoms, and ability to function in an everyday way. For instance, the sudden death of a young person, parent, or child. A divorce, abuse, threats, or someone with an addiction. These are examples of highly stressful situations which take you out of the ordinary and place you into a state similar to shock.
     Yesterday I had one of these types of stresses suddenly happen in my life. Today, I have been experiencing a variety of  Lyme symptoms. Stress at that level can effect anyone, but even more so if you have a disease. For me, I have a sudden increase in shaky hands, the feeling that my body is being stretched like an elastic both upwards and downwards, which I haven't felt treatment. Brain fog, which had long disappeared, I noticed as soon as I got up. And fatigue, that overwhelming feeling of sleep is here. I am taking my meds, but I think they are so strong this week that it increases my sickness as well.
     I thought I would share this occurrence in Lyme Patients and others who may be in an overly stressful situation with no control in the outcome. Taking care of myself is the best way to make it pass without lingering. It helps me to accept things. Today I will start with an Epsom salt bath. I will follow up with lots of green tea. I will take all the supplements and antioxidants I have in my arsenal. I will nap. I will eat healthy foods. And I will paint. A hobby may be one of the best ways to move on from the shock of your situation.
     In doing all this, my symptoms will fade more quickly, and normalcy will arrive with a pleasant peace.
     One more thing: when you are ready, find a good friend, a pastor, a counselor, just some you trust. Spill out your emotions, and description of the event which caused distress, Emotional health is just as important as physical help, especially when your body is already stressed by fighting a disease. In my case, I ask for prayer as well. It is a very powerful force in changing situations, and people's hearts.
     Fellow Lymies, I hope this helps you.

Today

OK, haven't got the nerve to start, but I am going go take about 6 antibiotics and detox pills right now. That's after taking four supplements and five prescritions of support to treatment. Here I go. If you don't hear from me for a while send me a post of encouagement!

Next Treatment Cycle

     Holiday over, new treatment cycle starts tomorrow. This time I had limited herxing. A big change from the past. No longer do I have the night sweats, nightmares, heart palpitations, blackouts, Lyme Comas, the list could go on. However, I still get anxious starting a new treatment cycle. It is tricky business to keep everything in balance. It means sticking to my supplement schedule every day, at the specific times, most beneficial. It means detoxing daily, to decrease the herxing during holiday. (steam baths/Epsom salt baths/green tea/lemon water/ and especially finding limited exercise to make me sweat it out.) It  means sticking very close to my diet. (which I have been slacking off on this holiday) It means taking all prescriptions at all the right times. It means taking all antibiotics and supports at all the right times. Like I said it is a lot of work, and a delicate balance. Even though I know this is a good thing, it is going to create a sickness of sorts as I kill off and detox the bugs etc. from my body.
     No rest for the weary, on or off treatment. Thank God I have improved or there would be no incentive to go on.

Face Book Page

   FYI: I have recently started a face book page. This page is for information, treatment strategies, and support. Please check out this Lyme focused page and leave a comment.
You can find it at:     Lyme Disease/Maine Lyme Lady.

ILADS Action - URGENT CALL TODAY to comment on Lyme Disease objectives to be added to Healthy People 2020ILADS Online Store and Media Center

 A VERY IMPORTANT CALL TO ACTION FOR LYME SUFFERERS! ILADS IS THE MOST RESPCTED ORGANIZATION FOR THE LYME COMMUNITY. PLEASE SUBMIT ASAP!!


ILADS Action - Urgent call to comment on Lyme Disease objectives to be added to Healthy People 2020ILADS Online Store and Media Center

UNH prof closes in on Lyme disease breakthrough- The New Haven Register - Serving New Haven, Connecticut

Exciting. Eva Sappi worked with Dr. Alan MacDonald, who discovered the biofilm. They both continue to work on being able to break it up and get to the bacteria enclosed in the biofilm. Something no one seems to be able to do. Knowing this, is it any wonder Lyme is invincible? Another note of interest, Lyme has been around LONG before the Lyme CT. outbreak.

UNH prof closes in on Lyme disease breakthrough- The New Haven Register - Serving New Haven, Connecticut

Boston Registration | | ILADS Online Store and Media CenterILADS Online Store and Media Center

Boston Registration | | ILADS Online Store and Media CenterILADS Online Store and Media Center

Lymemares (nightmares)

     Nightmares are often a part of late stage Lyme Disease. I have had many nightmares over the years. I can even recall a repeating nightmare in my youth. In my late teens I began to have nightmares.  By the time I was in my late twenties, and especially in my thirties and forties, nightmares were a regular part of my life. I often woke in a night sweat trying to scream and flailing around in the bed. My husband often woke me to stop me. He said I was kicking him and making noises like I was trying to talk. The nightmares had a common theme of some disaster happening and my having no control over it. Or I would be watching something horrible. Or something horrible was happening to me. I never will relay the images I saw because thy are so gruesome I don't want anyone else to have these imposed on them. However, I can tell you there was light at the end of this long tunnel.
     The treatment I received from the doctor in Boston did not stop the nightmares, but increased them. Nor did he ever ask me if I was having nightmares. When I had my initial meeting with Dr. Jemsek that was one of the questions he asked. I was so symptomatic that I did not think to ask him any questions, never mind why he asked about nightmares. All I could say was yes, I had them. Later in treatment, when I had my senses back again, I did ask. It seems, (now this is layman's terms, only from my experience) that inflammation in the brain stem and in the brain can cause nightmares. My interpretation is that the brain is the hot spot for spirochetes to harbor themselves. They love the nervous system and of course the brain is the motor driving the nervous system. When the brain has inflamed areas, that inflammation, in severe cases, continues down the neck and into the spine. Then can invade joints, etc.. Inflammation from spirochetes, their biofilms, and excreted toxins are again the root of inflammation. Inflammation, in a particular part of the brain, causes nightmares when due to Lyme Disease.When I was treated correctly for my late stage Lyme, my inflammation went down in my brain and, and guess what? NO MORE NIGHTMARES!!! I have not had a nightmare since being treated correctly for Lyme Disease and co-infections. I only have good dreams. I am reminded of this today because last night I had a very funny dream, and I woke up almost in disbelief at the difference in me. I cannot even express the gratitude I have at being treated in such a way that my nightmares have stopped. Not only have nightmares stopped. but joint pain, brain fog, overwhelming fatigue, and all the other symptoms have either disappeared or diminished. I am still in process, and may have to work on this my entire life to maintain where I am, but to me, in comparision to where I was for so many years, it is like death to life.

My "Lyme Comas"

  I am wondering if anyone else in the Lyme world has this happen to them.  Sometimes, in the afternoon only, I go into this very deep sleep. I call them my Lyme Comas. It lasts from 2 - 4 hours. I am either somewhat aware of people around me but cannot respond to them, or I don't hear anything at all. When I wake up, I feel like my brain has 'reconnected' itself and I can think better than before I fell 'asleep'. This is not a typical nap, which I do everyday. This is a much deeper experience and one I cannot wake myself out of on my own. The effects don't last forever, but there is a definite healing occurring during this experience. Anyone else?

Under Our Skin | The Hidden Story of Lyme Disease

This is a link to the Under our Skin store!

Under Our Skin | The Hidden Story of Lyme Disease

San Diego IDSA Lyme protest

  LOVE IT!!!  GO!

Steam Baths for Lyme Detox

    I do not have a nice dry sauna in my backyard, and don't know anyone else who has one. Next best thing: A hot, steamy bath. I even include Epsom Salts. Epsom Salts act to pull out toxins in the skin. Heat does the same thing. Good combination.
    This morning I woke with a headache I felt before I even opened my eyes. It felt as though my brain was trying to push out of my skull. I was groaning before I even got out of bed. Already I was dreading the day.  After an hour or so, when it didn't get better, I decided I had to detox somehow. Since running a mile is out of the question, I decided on a steam bath. I ran the water on the hottest setting possible. I added my Epsom Salts. When the tub was nearly full, it was ready. Hottttt, steam was rising all around me. And I began to sweat.  My tub has jets which run for 20 minutes. I turned them on and sunk my head down into the water as far as possible. My neck and the bottom of my head were submerged most of the time. I must have been in the hot tub nearly an hour. I did have a bottle of water with me, which I drank as needed.
     Moral of the story: I was able to get through my day headache free, and even did some house and yard work. What started out as dreadful became tolerable.

Under Our Skin: The Untold Story of Lyme Disease

Watch movie here:

Under Our Skin: The Untold Story of Lyme Disease

Dry Saunas for Lyme

    I have not been able to find a good link explaining the detoxifying benefits of the dry sauna. However, it does increase an effective sweat to help speed up the process of  detoxing. Anyone close by have one? :)

new treatment plan tomorrow!

     Tomorrow I start a new treatment plan. This will run two weeks on, two weeks off. The two weeks on kill spirochetes and the two weeks off give my immune system a chance to get a workout. As I go through the two weeks off, (holiday, it's called), my immune system takes over and continues to work on the spirochetes and get stronger. This is the 'pulse' system. I am so happy to report I just went through a 17 day holiday, the longest yet, and had minimal fatigue, pain and temperatures. I did have to work on decreasing the inflammation in my spinal cord, and that has been very successful. Again, a good sign.
     Over the summer I had a number of fevers lasting two weeks and more. This is the spirochetes fault, they can be the reason for most fevers. I am now going to attack the biofilms as best as possible over the next four months. Then back to D.C. to report how I have done.
     This plan is multi-faceted, attacking biofilms and other forms of spirochete defense systems, such as the cyst form, and the intracellular form. This is not your typical bacteria. They are SMART . Biofilms are very difficult to break up. The treatment plan will find these forms, sending the spirochetes into a flurry of activity. I'll go through a go around of symptoms and detoxing, (or Herxing). 
     I will continue with my HOT Epsom salt baths and sweating the best I can. This is the best way to detox, through your skin. I wish I could run, but just pushing the vacuum around makes me sweat. Maybe my house will be super clean.
     Each time I finish a holiday, and start a new treatment plan, I should feel less and less symptoms and Herxing. If not, we keep attacking. I have a feeling I will respond well, and be able to decrease my regiment after my next appointment. This is just a feeling of course, only time will tell. So, here I go, all I can say to myself is "sweat, baby, sweat!" Right, Liz! And, " hang though".

Fair Trade: Improving Lives

A departure from Lyme, I know. It's another thing I am passionate about.

comments

I think I fixed the comment problem, so it may work now. I hope so!

Lyme Around the World

      Blogging is fairly new to me, although when I look back, I have written  a number of blogs. Time flies. At first I was just plain excited to know people from around the world were reading my blog. The number of countries keeps growing as I go along. Countries from N. America, Europe, Eastern Europe, Down Under, and India. I was and am pleased to be a help (I hope) to everyone. Then, last night as I was falling asleep, it hit me like a brick. Lyme is world wide! Of course I knew that, from reading, but it really HIT me last night. I was no longer excited, but became concerned and extremely compassionate about the fact people from all over the world are suffering from this infection/parasitic invasion of our bodies. The strains are slightly varied around the world and even here, but the symptoms are the same, and the lack of treatment goes unspoken. It saddens me.  

Ticks and outdoor temperatures

    As I picked two ticks off my cat yesterday, I was reminded of the fall desperation of ticks. If they have not gotten their blood meal yet they are out for blood!  Ticks can live all winter in warmer climates. However, in Maine, if we get freezing temperatures, (sometimes below zero for a long stretch...) they die or hibernate. However, when temperatures reach over 40 degrees, out they come. Ticks are active in temperature 40 degrees and over. Last year we had a warm winter and there were a lot of people and pets who got bit. Even if it freezes, then warms, out they come. Ticks only need one blood meal to reproduce the large batches of babies in the spring. If they have not gotten it, they come out looking for it. Just FYI.

Inflammation in Lyme

     Inflammation. Ouch, it hurts. But what came first? The chicken or the egg? Inflammation or the tick bite?

     Here is a formula I learned from a nurse at the Jemsek Clinic:

     BUGS = TOXINS=INFLAMMATION=SYMPTOMS

     The answer is the BUGS come first. It is the TOXINS from the spirochetes that cause INFLAMMATION.  Toxins must be detoxed out of your body. As a matter of fact, when I had my first appointment with Dr. Jemsek he told me he could not start treatment until we got my inflammation under control.  Antibiotic treatment brings out the spirochetes, which increase toxins, which increases inflammation, which increases symptoms. If we had started treatment right away, the killing of of the spirochetes would increase the toxins in my body and cause even more inflammation. That may have been too much for me. I spent the first three to four months detoxing and decreasing inflammation. I did this by taking a number of supplements including Magnesium Malate, B12 sublingual, Methylfolate, green teas, Epsom salt baths, and a number of other things. I also went on a strict diet meant to decrease inflammation. This was a gluten free/sugar free diet. A challenge. I was encouraged to use Stevia for my sugar. I took a number of naturally occurring supplements, found in our cells, to develop a health immune system.Within a few months, my inflammation was down to a level that he could work with.
     All in all, it has proven to be a winning combination.
  

Lyme Team – upload photos | | ILADS Online Store and Media CenterILADS Online Store and Media Center

Lyme Team – upload photos | | ILADS Online Store and Media CenterILADS Online Store and Media Center

ILADS - Lyme Disease Conferences Videos - Joseph G. Jemsek, MD

ILADS - Lyme Disease Conferences Videos - Joseph G. Jemsek, MD
last year, this year is Nov. 2-4 in Boston. ILADS site has info.

Dr. Joe Jemsek "Speaks the Truth" Speech

Spirochete Biofilm

D.C. appointment results

     As usual, Dr. Jemsek took his time, listened closely, and moved me in a new direction. He always listens to my complaints with respect, and without taking them personally.
     I saw him last in May. Since then we have been attacking the Babesia. He felt it was time to stop that attack, as that was either at bay or gone, and move in another direction. The symptoms which have cropped up over the summer were different, and pointed in another direction. My complaints included: diarrhea all summer, (sorry...), pain in my SPINAL CORD, (not my 'back'), left abdomen pain, (an old symptom I lived with for many years, but had not experienced since starting treatment with him), and left hip pain, deep in my joint, (same story as left abdomen). Also, I had fevers on and off lasting 2 weeks or more at a time. At the same time I experienced another old symptom, a stiffening of my thigh muscles making it hard to walk with a full stride. Before treatment I used to experience a hardening of my legs which felt like they were made of cement. It took a great deal of energy to move them.
     I explained to him that my spinal cord felt like it was bursting out of my back, and was being pulled at both ends by someone. I asked if this was a complaint he hears often and he said it was.
      After listening to me whine, he did an exam. This consisted of starting at my jaws and tapping them. With every part of the exam he asked me if I felt any pain. No pain in jaws, (first time!) Then to my shoulders, yes some pain. Next was my heart, no reply from him, and I don't know why I didn't ask how it sounded. I will read it in his report. Next in line was my left abdomen and hip. He wanted to know exactly where the pain was occurring. While laying on the exam table for this part, I had a big spasm in my left shoulder. I have not had that since treatment began. My guess is that the exam prompted my left side to react. Someone without Lyme would not do this. He did stop for a moment, wheels churning, when this happened. After that, he palpated my spine. Ouch, yes it hurt all the way down. He tested my knee reflexes and as usual, my lower legs just about cleared the room. That got a smile and a little shake of the head from Dr. Jemsek.
     Next was an in depth discussion of what was happening in my body. He explained the reason my left abdomen and hip were inflamed and hurting was due to the fact my spinal cord was very inflamed. He had studied my med. list as usual. Med. lists include the dosage of each medication. At the last visit I had expressed an interest in lowering the dosage of my neurotropics because I was in so little pain. He agreed. He commented now, that my doses were very minimal. Due to the inflammation in my spine I should increase the dosage again during this next cycle of treatment. He explained that it was inflammation in my lower brain that was causing the inflammation in my spinal cord. The lower brain and brain stem have all your nerves coming together before they reach your brain, or go down your spinal cord to be distributed throughout your body. He explained I must have spirochetes still being active. I suspect they are in my brain and spinal cord, as they love the nervous system. The symptoms he saw and heard were some of the same complaints I had when I first met him, though extremely diminished. Therefore he suspected that there were still spirochetes that were in biofilms. These very hard to break up and get to the spirochetes themselves. Because of my understanding of the research going on, and of the infection, as well as my personal experience, I had to agree. If you are not aware of biofilms, research them.
     So, we moved into the treatment phase. He increased my neurotropics a bit and gave me a range of dosages I could use to get at the pain and inflammation. These meds. are Lemectal and Lyrica. Don't faint please. They are wonder drugs in my situation. He also put me back on a regiment of oral antibiotics, detox meds, and other meds. I cannot remember right now. All another many sided attack on the spirochete biofilms. The treatment plan includes natural herbs such as artimesia, and many supplements. The supplements I have been taking all along. They consist of naturally occurring cell structure components. They support mitochondrial functioning. These supplements I'll post at a later date.
     He layed out his plan on paper and reviewed it with me. I have the next two weeks off as a 'holiday' from meds., as this gives my immune system a chance to work by itself, becoming increasingly stronger. I will them do the spirochete treatments for two weeks 'on' and two weeks 'off'' for four cycles until I go back in January. I will take the supplements ongoing.
     I then asked him some slightly off the topic questions. Since Parkinson's disease exists on both sides of my family, I asked if the agreed with new research showing spirochetes in a large number of Parkinson's brain autopsies. He said yes. So naturally I asked if we could prevent the decrease in functioning known in this disease. He was confident we could do this, with ongoing treatments that he will decide on, as we go along. That was actually a trick question, as I had already decided the research was correct. I was glad he agreed and gave me hope it was not going to happen to me. Thank you Lord.
    I asked him if I had permission to use his name and describe his treatments in my blog, and he graciously said yes. He also complimented me as to the improvement of my mental capacities. He said he remembers my first visit where I couldn't even talk to tell my story. He has taken me a very long way. He suggested I reach him with any questions as I go along with my blog. I can't express how grateful I am that I chose him to be my "Lyme literate' doctor. He is much more than that. He just plain knows how the body works at the cellular level, and how spirochetes and co-infections live and hide and die off.
    Detox will consist of the same things in the past. He explained the detox happens best through sweat, but it is hard for me to sweat due to energy issues. He suggested a sauna. hmmmm, I'll figure something out. The spirochetes/toxins come out of your body best through your skin. This is the reason for sweat. If you are someone who is able to exercise, do it. In the long run it will help.
     One last point. In the time since I saw him, just 4 days ago, the pain in my left abdomen and hip is gone. My spine is less inflamed, and I am happy with these results.
     Time to do one jumping jack and take a nap.
    

70% of deer ticks tested in Pittsburg were positive ..good video

Doctors Change Treatment Recommendations For Lyme Disease « CBS Pittsburgh

Help for Lyme Patients

Yes, I'm back from D.C. and have a LOT to share. I just need time to get my notes together and have time and energy to sit down and share here. I hope later today, or tomorrow. To fellow Lymies I say HANG IN THERE! HELP IS ON THE WAY!!

Washington D.C again

Off to see my Lyme Specialist in D.C.. Results posted next week...

A woman in New Hampshire shares her story

Health Check: Out of the woods

Preparing For My Appointment

  Today I will start putting together the information I will need for next weeks apt. with my Lyme doctor. We will travel to D.C. on Sunday, have the day Monday, then head back home Tuesday after my morning appointment. It is a lot just to take the quick trip, and my good husband does all the driving. Yes, I can still drive, but in the past I have gotten so tired driving I have had to pull over and sleep. A few times I fell asleep at the wheel for a second. One time, I fell asleep while my husband was with me (after a long day at the beach, before treatment). He had to grab the wheel. Thank God he was there, because we had our two kids in the back seat. Needless to say he took over the wheel. Since then, well, let's say he is cautious, and leave it at that.
   I always prepare  by writing down my endless questions, my med list, my supplement list, and my herb list. I bring my journal to be able to report accurately the symptoms I have been experiencing. The symptoms have decreased dramatically since I first began with him in January of 2011. This is a great encouragement. Fortunately, he takes his time to answer questions and explain to us what is happening inside my body.
   So I press on.

Lyme Conundrum

My first day back on meds was Monday. I was nauseous all day and had what I call "Mepron Head". Can't describe it, but it comes with the medicine.  Yesterday I slept 4 hrs in the afternoon. I was exhausted. A busy weekend plus starting back on meds = a very tired, cranky person. I take meds Monday, Wed., and Friday when "on". So, today, I as usual, took my probiotics before meds ~ 1/2 hour before, and included some Zofran. (anti-nausea). It did help. Although I am desperate for a rest right now. Killing bacteria and parasites, as you know, just fills you with toxins that you have to get rid of. That's the 'fun' part. When they exit your body.  My body is working very hard inside of me. I can't see, but I can feel it. You can't see it and you can't feel it, in me. That, at times, is a conundrum. Time for a rest.

TBDA Diagnostic X Prize - Making the Impossible Possible

Lyme Holiday Over Again

      Today I start another two week round of Lyme treatment. It is always hard to psych myself into it because the one parasitic drug I take right now tastes DISGUSTING.  It is a liquid. Mepron. I need to remember to DETOX every day, keeps the herxing to a minimum. I am not saying 'holiday' is easy, ( although it is much easier than in the past ) just less meds.. I have two weeks 'on' and two weeks 'off'. My motivation is the great improvement I have had over the past year under this doctors care. Yes, I still deal with symptoms here and there, but much milder and lasting a lot shorter in duration. I certainly wouldn't be able to blog if not for the treatment. 

TBDA August Newsletter

http://myemail.constantcontact.com/August-2012-Newsletter.html?soid=1103123347713&aid=ywzXq_U-_lc

still dealing with symptoms

This week has been mixed. I lived with a low grade fever for two weeks prior and it finally broke a couple of days ago. It is hard to imagine, I know, that a 1-2 degree temp. can slow you down to a crawl, but it is true. I have been 'on holiday' for the past two weeks from my Lyme meds, so my immune system has been getting a work out. I believe it handled things pretty well this time around, although obviously I still have an infection to deal with. It's like your mom or doctor used to say: a fever is your own body's way of fighting an infection by itself. Let it run it's course so it can do it's job. I did, and it did eventually go away. I remember with way too much clarity the YEARS I spent with fevers that lasted 6-10 weeks at a time, and no one took it seriously. I rarely had a fever break. It was awful. At that time I was full of pain in all my joints and could hardly walk, or eat, at all. So, in retrospect, I guess a two week fever, on holiday, in not all that bad. I go see my D.C. doc soon.

frustration

Guess I had a little bit of an attitude with my last post. Hard to suppress at times, the whole deal being soooo frustrating and discouraging. It's enough to be fighting to get through every day, never mind fighting against a system which denies help to Lymies.

"Lyme Aid" music fest sept. 16th!

Sunday, Sept. 16th, 10 - 6p.m.
Thompson's Orchard
276 Gloucester Hill Rd
New Gloucester, Maine

$10.00 donation/family
bring lawn chairs, go to farmers market, pick apples, see information booths, and meet other Lymies

Under MY Skin..

     Anyone who lives in Maine knows you have to cram 10 months of activities into two months every year. Visitors, visiting, beaches, mountains, gardens, etc., etc.. So, I am almost glad winter is coming. I am so worn out! I will be able to post regularly now, and I am excited about that. I have so much to tell, it is like it is bursting out of me. A lifetime of Lyme struggles makes a person ready to burst.
     2008: The year of "Under our Skin". ahhhh. Of course I forget how I found out about the movie, but I don't forget going to see it. I was one of the lucky ones who went to a screening before it's release, in Rockland, at The Strand. (thank you for being brave, The Strand) Therefore, Andy Abrahams Wilson was there. We went in and took our seats. It is a good thing we were early because before the movie started I looked around and it was packed, even standing room was jammed. The movie began and as it unfolded a strange and eery feeling came over me. One of familiarity, understanding, compassion, fear, anger, and relief. Relief that FINALLY there was confirmation I was not alone, I indeed had company in this battle, and, there was no cure. ugh. I watched as the stories unfolded;the scientists who fight like children, the political cover-ups, insurance woes, financial woes (I know that one..) and the doctors battles.heroes that became real to me. Those who had stood up, researched, studied under the microscope, and treated the most controversial disease since Aids. I cried. Not wept, cried. Silent tears, one at a time, for most of the movie. My husband, next to me, began to understand my plight a little more, and that, too, brought a tear. If you have not seen the movie and you want to understand the seriousness of the disease because someone you know has it and you think they are just weird, then please, watch it! After the movie, Andy spoke about his experience making the film and the resistance in releasing it. His sister was his inspiration, as she had Lyme, so he had a personal experience with the disease. (infection) He asked how many people in the room either had Lyme Disease or knew of someone with Lyme disease. To every ones surprise almost every hand went up. Guess Lyme really is in Maine. Guess there are a lot of "me"s out there, close by! Who knew? Not me.
      Unfortunately, the movie created a big taadoo in my doctors office and many others around the country. NO! NO! We won't treat! We won't diagnose! We won't use antibiotics long term! Ouch, ouch, ouch. Time to find a new Lyme doctor. One right out of 'Under Our Skin". Maybe the most controversial one! See, I had done my homework, for YEARS before this, and had enough of an understanding of the disease to believe in this doctors treatment plan. I saw his work right there in front of me in the documentary. Criticized but successful, how crazy is that? I have no regrets about my decision. I was right about him. Take that, you nutty scientists and doctors blocking progress!
    

Two Other Lyme Stories

This is a bit long, but a good job of setting the story straight. It could be me, and so many others.



salina.com - an online service of the Salina Journal

YorkRegion Article: I’m housebound, my life has shrunk: judge

YorkRegion Article: I’m housebound, my life has shrunk: judge

Boston Registration | | ILADS Online Store and Media CenterILADS Online Store and Media Center

Boston Registration | | ILADS Online Store and Media CenterILADS Online Store and Media Center

Ianna House

This would be a dream come true. A treatment place for patients with Lyme Disease to go for support during treatment. Wow. That would have been nice.                
Check out the link.                               

lymefest

Check out the link to Ticked Off Music Festival.

too humid...

Too......humid.....to....write.
 Must ...have...lemon...water...and ....iced...green...tea.

the famous 'round of doctors'

     I have so many doctor's reports that I fill several files with them. I will try my best to keep them in sequence. This of course goes on for years, so I am afraid it will take several posts to cover it.
2002:
       (June) So much pain and stiffness/weakness, I could not lift a gallon of milk. I made an apt. with my wonderful family physician, but he was not in that day. Instead, I had a P.A.. God was with me. She looked me over, asked me what was wrong. I told her I felt like either I had been hit by a truck or beaten with a baseball bat. All joints hurt, head hurt, I was shaky, weak, feverish, red in the face, etc. etc.. She immediately diagnosed me with Lyme Disease and put me on an antibiotic. She also did a Western Blot. No Elisa. Well, you know there is something up when the doctor calls you and asks you to come in to review the test results. It seems, the result showed and old infection and a new one. This was the first time I began to put the pieces together. I had both IgM and IgG antibody results. (this I will explain at a later time, when I get into test results and what they really mean) Now, understand, most people would dismiss this as unimportant, BUT, because I had this P.A., on this day, she knew what she was looking at. Why? Because she had Lyme Disease herself. Now, I was off to what turned out to be a long, discouraging journey of "yes you do", "no you don't" have Lyme disease. I was put on Biaxin and Plaquinel by this P.A. under the supervision of her specialist in Boston. (just FYI, this PA decided to leave the practice due to pressure from other doctors about her diagnosis of Lyme Disease with patients. They did not believe. I'll leave it at that)
      (Dec.) MRI to rule out MS. This was just the beginning of the denial on the part of the doctors I was seeing. Of course it came out fine.
      (Dec.) Apt. with an internist/infectious disease specialist at a local hospital. Result: maybe it is arthritis, it is not an infectious disease. There were so many mistakes in his report it was ridiculous. How could a professional doctor get it all so wrong?
      OK, maybe one year at a time. I am getting tired, it actually takes me along time to pull out all my reports and put them in order, and write the basics. I have come a very long way in the last year, but if I push it, I still get mentally and physically tired. I'll stop so I can try to be productive the rest of the day, and have enough energy to make dinner later.    
     PS - I saved every little report, blood test, etc.., that I have had done, since the day I found out it was Lyme. I highly recommend everyone with Lyme do this. Also, keep a journal of your symptoms daily. Just a sentence if that is all you can do. I have 10 years worth of all of these. One day I hope to be able to make sense of the horrid journey this has become. If we all work together, we may make headway in the push for an understanding of this infection. (I prefer to call it an infection, not disease)

reality check

     Once again I am reminded that reality is always different than the plans that we make. Vacation was great. Peaceful, hidden away from all civilization with no TV, cell phone, computer, etc., and I couldn't have been happier. But it is nice to be home. With my pets. The reality check came when I arrived, and was so tuckered out I couldn't hardly walk the hill to our cabin. Hiking was out. I was bummed. I walked every day, but no long hikes deep into the forest, which I love to do almost more than anything. Maybe one day, maybe not. I did get some kayaking in, and a little swimming. The weather was perfect. I am not 'on holiday'  from meds this week, so I was dealing with side effects some of the time. Wouldn't it be nice to wake up one day and be able to do all the things I used to do? Now I really need a reality check.
     Today my 9 yr. old nephew from Alaska is with me, and he got me good this morning. He said, in all seriousness, "why aren't you green?". I looked at him funny and said "why?". "Well, you have LYME Disease!!!" HA HA HA!!! Kids, he had a good time with that one. And I got a good laugh too.
     Next blog, on to more serious stuff. I am  contemplating my sequence of info., should I start with the basics about ticks (boring) or symptoms, or various doctors I've seen over the years, treatments, detoxing..... the list is endless and probably will end up out of order anyway. I am a Lymie after all.

last part of story....re-visited

 
This is a re-post. Sometimes I need to re-visit where I have been, and what my path has been. I know some people have not looked back at these posts. When I read it I see all kinds of inconsistencies and out of sequence information. Another sign of my Lyme Head. I hope it's getting better as I go along. I wrote this about a year ago, but the events run from decade ago to two years ago. I have 'way more' details I did not share. Enough for a book...


 My story is dragging on and I am truly writing the Reader's Digest Condensed version. I am leaving a ton of details out that I will fill in as I go along.
     To finish up in a summary, I stopped seeing Boston Specialist and went on for a year or two feeling a lot better. I still had pain in my hip joints, some brain fog and of course the relentless fatigue. At some point I began to slip again. Slip into the pain, lethargy, inability to think, tiredness, and a number of other symptoms I could name, if I had my journals in front of me. I have been recording my everyday struggles and doctors experiences for 10 years.
      I couldn't understand why I still felt crappy even after all that treatment. All I can say now, is that the treatment was of a limited type and used limited antibiotics and no herbs, supplements or other body building, cell building therapies. So, my body was still run down, maybe even more so now.
     Around 4 years ago the movie "Under Our Skin" came out. My husband and I went to see a pre-release screening presented in Rockland at the Strand.  Well....I wasn't expecting what I saw. I saw me. I was in that movie all over. All the different doctors (I left that part out so far), all the different diagnosis (ditto), all the 'humoring', all the disbelief, all the fatigue, pain, brain fog, etc. etc., all there, all me. I found my self crying. Not bawling, but the kind of crying where one tear at a time flows. I realized I am not alone. It was the fist time in my life I understood what was really going on and why I was not being treated properly. It was the first time in his life that my husband realized all these vague symptoms were indeed Lyme and they were not going away.
     This started me on the most intense research so far. I studied the disease, the politics, the vaccines, the places of research, doctors different therapies, doctors accepting patients, doctors published reports. I did it all. Good for me I kept it all in a file cabinet.
       As a couple more years went by I began to function poorly again. I was worse than ever, and could hardly do anything without feeling drained (like walk up stairs, do laundry, simple things). I felt different somehow. To be honest, I felt like I was dying. Like little by little this disease was taking my life. It is a very hard feeling to describe, but it was like I knew I was losing the battle. I had lost almost 20 pounds from my usual weight and had no desire to eat. None. All those bacteria in my brain were effecting all areas of my body. I felt like I was being eaten up alive. The cell kill off was faster than the cell regeneration. At least  healthy cell regeneration. That's what Lyme does. It KILLS cells. Hello....I hope patients and doctors understand that. Lyme kills cells.
       I dug around and found another specialist who works out of Washington D.c., when I got in to see him I explained to him how I felt. Like I was dying. His reaction was one I wasn't expecting. He agreed. (Even now I am frustrated again at the misinformation out there about Lyme. People should know Lyme kills cells! It is a deadly disease when left to it's own devices.) Very briefly, I decided to go the IV treatment route. I had IV antibiotics for 8 months. I also went on a gluten free/sugar free diet, and began to take many supplements to build up my cells and grow healthy new cells.
     At this time I am still working with this doctor, who understands the disease in a very intimate manner and he is helping me become healthy again. Time will tell.
     I'm going to call that my story because I am tired of writing about it. I'll get to details as I go along. There are so many other topics I want to get to. So much to get from the file cabinet to the computer! I am on vacation next week, hiding in the mountains of Maine, with my bug spray, hiking hat, and walking stick. This year, I will be able to hike and kayak a whole lot more.

my story prt. 5

     Disability was a long hard row to hoe, but I did eventually receive it. I hate that I get it, and I am grateful I get it. Hate it because I would rather earn my own money thank you, and grateful, because I know I really can't earn the money. So disability helps,  thank you, even if just a little.
     I was rejected the first time I applied for disability. The second form they give you to fill out is about 20 pages long and asks detailed questions about your ability to function. This worked more to my advantage than not. Things I could not express in the shorter first application were coming up in this application. Then, in a stroke of genius, I decided to send with my application, a research paper from my doctor in Boston. This paper was written describing the bands in the Western Blot test, and what each band number means. Bottom line for me, was that his research showed several bands from the test ONLY show up if you have the spirochete in you. I had two of these bands. In another stroke of kindness from above, the person who reviewed my application and research the second time, was a doctor who actually understood the research paper. This is not an easy task! He approved my disability. Sometimes I wonder, if I may not have been the first person in Maine to be  approved for disability, for Chronic Lyme Disease.
 

prt. 4

     During these years of treatment, there was virtually no immune support for me. I knew to take probiotics and eat well, but supplements were a foreign language to me. Neither doctor I saw, my family physician or my specialist, suggested building my cell strength. Nor did I.
     As the years went on and I worked through the herxing and detoxing on the road to healthy stretches of time. The night sweats stopped. The joint pain lessened probably 90%. The fevers all but went away. I was feeling much better. Even my allergies went away. Weird, but true.
     It was in the second year of this treatment I left work. I had no income but was unable to do the job I was hired to do. As a special Education teacher I was involved in numerous meetings, in depth lesson plans for each individual student, and mounds of paper work. I took two medical leaves during my last two years. Each time I thought I could work, and each time as the months went by I felt worse and worse. I had a window of three hours each day. From 9a.m. to 12 noon I was kind of able to perform my job. Then, like a wand of sparkly stuff falling over me I would become too tired to think or talk. Just like that. I wanted to just sit and stare.  (I used to call it the Sit and Stare Disease)It was hard work to make my body get up, walk, and verbally interact with students or adults. I did the best I could and hid it the best I could. I doubt I fooled anyone.
     It was a good decision health wise to leave. work. The 'disease' had robbed me of stamina and ability to multi-task and keep it all straight. After I left I was able to rest a lot, for a very long time. I could feel my energy even out after all the years of 'pushing through' every day. I was also applying for disability.

prt.3

It wasn't too long before I had and apt. with the specialist in Boston. I agreed when I read a number of his published papers which led me to understand he know the disease at an intimate level. At the cellular level. So began a long road of treatment with him. We made the trip to Boston many times in the five years I worked with him. My first visit was the physical, memory tests, and history. He confirmed my diagnosis of Lyme Disease. I was put on a number of oral antibiotics. I knew enough on my own to take probiotics. The treatment symptoms went through a definite cycle of sorts. Mainly, I could feel pain in my bones and inner spine, etc.. Then it would feel like my muscles were sore. After that, My blood, intestines, heart would feel funny until finally my skin would sweat it out. That is a quick synopsis of what took over five years to kind of figure out. There was another cycle to the treatment as well. I went through definite times of pain and Herxing and other times I felt considerably better. It continued like this: the pain cycles were the longest with only a day or so of good days. The pain days grew less as the good days grew more. I could record and mentally track the progress of my improvement, which was a saving grace. When I felt better longer than I felt worse, I stopped going to him. That treatment, which lasted five years, cleared my body of many spirochetes. I could tell by the way my body was able to move, and how I was able to think and follow conversations. And, very importantly, how little pain I was in compared to when I first started. I stayed on this track of about 75% better, for the next couple of years. Certain symptoms just persisted no matter what, it seemed, so I grew tired and let it go.

rabbit path

 I went for a walk in the woods with my daughter and dog Sat.. It was too hot for tick activity. We thought it would be cooler in the woods but it was not. I was careful to choose a trail that is wide and well kept. Usually Preserves and State Parks are good for trails. Many allow leashed dogs. I do use a ceder oil repellent as well as something on my clothes and hat.  I've done one hike a week for the past three weeks. This is actually an improvement over where I began, when lifting a gallon of milk seemed like an impossible task. Never mind walking a dog and keeping up with my daughter! So all I have done may not have been in vain.

Let's skip prt. 3 for today. I am looking out at pouring rain for the umpteenth day. I see lots of overgrown drainage ditches, meadows, lawns, driveways and pathways, a lot of overgrown everything. And everything is wet. Tick heaven. It's at times like this that 'tick movement' occurs most readily. Ticks like wet, high grasses, bushes and tree branches. When everything is wet, they can travel more easily without a hot, dry break in the path, which stops their movement. Ticks do not like hot, dry environments. Today I can look ouside and see possible ways ticks could make it into my yard and gardens and walkways. I will be extra careful to wear my treated clothes when in those areas until they dry out well. We are promised sunshine and hot temperatures soon. This means lawns can get cut, and many other tick pathways will be broken up again. Keeping your lawn and yard trimmed back, so that wet, debris covered areas are out of reach, is a great way to keep ticks away.

prt.2

    In my twenties I noticed I fell asleep during the day, everyday. I had to fight to stay awake long enough to get somewhere I could nap. This concerned me but it was no red flag. My first bout with serious brain fog was in my senior year of highschool. (before 1982) After a literally 10 hr. hike in the middle of the night. I was tired, and life got fuzzy. I figured everyone else there felt the same. Then, after my wedding, I had brain fog for weeks. Beat out only by the months of it after having my two children. Again, I thought everyone in those circumstances felt that way.  Later, after having both kids, when I was feeling tired all the time, I got the famous "you're the mother of two kids, what do you want?". I believed them. I was having a lot of joint pain by then and was noticing I was finding it hard to keep up with everything. I worked as long as I could, up into my forties. So this was a very difficult time in my life.
    By my mid-thirties, I had been having regular fevers, and soaking night sweats to go along with the fatigue, brain fog, and joint pain. I had an exceptional fever at one point and went to my doctor. Except my doctor was not in that day. The P.A. saw my state and the amount of pain I was in. She ordered a Western Blot Lyme Disease Test. I'd never heard of it. I recieved a phone call from the office asking that I come in immediately and speak with the P.A.. I did, and she confirmed I had Lyme disease. Her concern was the test showed both IGg and IGm positive bands, so she thought I might have had this disease for a long time. After this, my own research began and all the pieces of the puzzle started to fall into place.  This P.A. put me in contact with a doctor in Boston who was a specialist. He was her Lyme doctor too.

"My Story" prt. 1

                                            My story is like thousands of other stories out there.

       When I think back on where and when this infection must have started, I cannot attribute any specific event, which is the starting point. I remember ticks being an infrequent visitor to our family growing up.  However, somewhere around 1982, I was living in the Berkshires of Massachusetts. When camping on October Mountain one night, I felt something on my leg. I looked down, you guessed it, a tick. This thing gave me the willies. It was a fully engorged tick, the size of a raisin. Just hangin' there. In our greatest cooperative spirit, my friends and I did everything we could to get this thing off. Pulling, cigarettes, fire poker sticks. Yup. We did everything wrong. That sucker must have been stressed, especially after watching how ticks latch on for dear life this weekend. The tick on my leg was eventually removed, all the way or not I do not know, and it was burned appropriately in the campfire. End of story. For many years.

I just got back from the beautiful lake s region of N.H..  A family cottage of nearly 40 years. Here's the deal; halfway through the weekend, our dog has a tick walking across her forehead. I see it and go in for the kill. But, they are fast! By the time I had pushed the fur away, down to the tick, I watched in fascination as it panicked and began to burrow into Hallie's skin! With Russ's help we got the bugger out before it was very far in. I never realized how desperate they are for a meal.

Heat is an enemy to Lyme sufferers. Stay cool, drink lots of water with lemon slices in it, and take your proboitics. If we don't pace ourselves, we end up having to rest or sleep for days on end to recuperate. But the sun is always uplifting, so enjoy. That's all I can do today. Be patient, I am just getting started with this blog. Much, much more to come.

   So, these are spirochetes. Nasty little corkscrew bacteria transmitted from an infected tick to humans. I have had them most of my life, and my story is long and sorted. I'll get to that. I am still in treatment, though under pretty good control right now. I live in the world of the unknown, the controversial, and the misunderstood. Sometimes my world is spinning and sometimes I am paralyzed, literally. I live moment by moment. I take joy from all I can, as often as I can. I hope to enlighten those who are unfamiliar with the complexities of the bacteria and co-infections involved. I also hope to give comfort and support to others like me who live in that same world of Lyme Disease.