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!