Thursday, January 19, 2017

My Story...

     I'd always wanted a get-away place in the country. And so 13 years back, my husband and I purchased one on 2 acres of state forest land, thanks to a small inheritance from my mom.
     I'd heard about ticks but was more wary of mosquitoes, since I am easily bitten. Then I saw a sign by the trail head warning of ticks, how they look and that their most active season is May through Oct. The time period we usually go there. So I never wore shorts or sandals.
     In June,2007, three years after the purchase of our country house, I got at least thirty bites in a few days. Some were mosquito bites, others were from black flies and who knows what else?  I took precautions with repellent, but to no avail. It was the first time I'd gone during the month of June and decided it was not a good time to go to the woods.

       A month later, in late July of that same year I began experiencing stiffness and could not squat at all due to pain in my knees. Then I developed a low grade fever. At the time I was seeing an acupuncturist. She thought it was a 'summer flu.' I knew that couldn't be, since I'd had the flu vaccine and hadn't been with any sick people. Plus, this was different. I had no cough or respiratory symptoms and could barely walk.

      My doctor was on vacation. I went to another doctor and he ran a bunch of blood tests. All negative. During that time I had an appointment with my dermatologist and told him of my dilemma. He sent me for a blood test for Lyme. It came out negative. The pains increased and the low grade fever continued.

       After two weeks when my doctor returned, he immediately said: "It's Lyme" and sent me again for blood work with the Western Blot. Band 23 Igm came out positive for Lyme. He immediately prescribed Doxycycline for two weeks. It took almost a week for the fever to be gone. And then the pains subsided.

      Not long afterward, I developed pain in my shoulders, and my arms and fingers were so stiff I could barely brush my teeth or dress. More blood work. I was then diagnosed with Polymyalgia Rheumatica since all my pain was bilateral (both sides) and my Sedimentation Rate (inflammation marker) was very high. The diagnosis was confirmed by my immediate response to Prednisone. I was told that Lyme Disease doesn't respond to Prednisone. My doctor speculated that the Lyme had triggered the autoimmune disease.

     Once that was under control but not gone, needing to remain on a low dose of prednisone, with various increases and decreases every three months, I became reinfected with Lyme. This was difficult for my doctor because the treatment for Polymalgia is not good for Lyme. Several times I have had Lyme and Polymyalgia at the same time.

     This went on for years. Finally, I thought I was over it all but then came down with pain again. At that time people had told me that my pallor looked bad and then a nurse cousin suggested I go get tested for Lyme again. I got a positive result but it was for an old infection that had not completely been healed. This time I was on antibiotics for months instead of weeks until the positive was a negative.

      I ended up going back to the country house for a funeral of an older good friend in early June. I got bit again behind my ear at a friend's garden and assumed it was a spider bite as there was a small white one on my shoulder that I brushed away. The center of the redness there had a black dot but I never knew ticks could cause such pain and swelling. But it had to be a tick because I got sick yet again with a 'new' infection. Antibiotics once  more.

     Needless to say, I became very fearful to go back to the country house for vacations. And whenever I walked on the wooded area of the property I dressed as if in the African jungle.
                                                      (READY FOR ANYTHING)
      Bout four came when I got bit on my lower front leg in May two years after that. It looked like a blood blister and I saw a teeny black dot under it. I called a friend who has a tick remover and we tried to get it out and she finally said "it doesn't look as if anything is under there. Just the blister." I agreed. My husband rubbed garlic on it as an anti-bacterial but his rubbing the area, we later learned, was not a good thing to do. This can press the toxins out of the tick into the blood. And YES, I got Lyme again.
     My latest bout came last year in Oct. I began getting pain and one morning had a low grade fever for one morning at 99. The next week while upstate I developed a fever of 102 with aches and pains. A couple days prior I noticed a large tick on top of the toilet tank. Not sure it had anything to do with this new bout.
     I called my doctor and he advised I take two Amoxicillin pills at the same time. The next day the fever and pain were gone. I stayed on that antibiotic for 10 days. Apparently, it wasn't long enough because I then felt very ill and in pain a month later. Lyme testing was positive for band Igm 47 and 'undetermined' for band 23.  I was placed back on the Amoxicillin for three weeks. Next blood test showed less Lyme antibodies but still there. I already knew I was still infected by how I felt. LOUSY.  (Stiff neck, both wrists feeling as if sprained, backs of upper thighs aching, both knees hurting, tops of shoulders hurting, night sweats, throbbing arms, bad rib pain on the inhale and extreme fatigue.) I also have splotchy skin all over my body except for my neck and face. This is another "Lyme sign. It is called: 'Livedo Resticularis.' Have had it for a few years.

Additional Note: I was again diagnosed with Lyme Jan. 2017. Antibiotics again for two months. The Lyme resurfaced in March 2017. I received a diagnosis of: Chronic Lyme. 
At this point I went to an Infectious Disease doctor as my next step in battling this disease and he said I did not meet the criteria for true Lyme. (Many doctors follow the CDC's guidelines which is causing quite a debate on how to properly treat Lyme and other tick-borne infections.) I was astounded as my blood work has shown band 23 and 41 positive many times over the years and a person with Lyme can tell by how one feels. The CDC requires five positive bands as of this writing.
He did do additional blood work for co-infections and the results were: BABESIA. I was given malaria medication and an antibiotic for one week.

   While my doctor has read the protocol of a well noted Lyme Literate doctor, and is attempting to treat me the same way, we lack the advantage of having the specific blood tests for co-infections. Ticks can have several diseases at once and transfer them to us when we get bit. 'Lyme' (Borrelia burgdorferi ) is just one bacteria. There are others, and this requires different antibiotics since one or two doesn't kill all the different bacteria or parasite (Babesia) should they be present in our bodies. Since I have gotten bit several times, the likelihood of other infections seemed likely.

     I am also looking into the 'Bob Beck' Protocol using magnetic and electrical pulsing to cleanse the blood, and am on a 'Lyme Diet' which calls for very little sugar use, no vinegar, no gluten and dairy, (with a few exceptions) plenty of vegetables and only organic meat (although I am a vegetarian with rare exceptions when ill, using meat as a condiment..) The less inflammation we cause with food, the better the body can heal from Lyme.

     I'm learning that we must do what we can to strengthen our bodies as we go down the road toward healing. I hope some of the links, suggestions and info I will post here can be of help to anyone suffering from Lyme Disease.Or serve as information to those who want to avoid it.

    Sometimes I saw a bite that looked like a tick which was very painful and red, other times I saw no bite or red spot anywhere on my body. My mistake was that I didn't know tick bites hurt so much and assumed it was a spider or nasty mosquito bite and treated it accordingly. 'Ignorance is not bliss.' We need to read all the info we can about tick bites, what ticks like and what they dislike, the best repellents and how to check ourselves regularly if we are in a 'tick' populated area. Deer and mice are the main carriers of the "deer tick' which spread the disease. So if there are deer in your area, (mice can be harder to detect unless they leave droppings) be mindful to check clothing, scalp and body for ticks. Even if you romp in the grass in city parks, be wary. Dogs that have been in tick areas with their owners on vacations or visits can carry 'deer ticks.' If there's grass, there might be ticks, city or country. But the likelihood of getting bit in the city is much lower than in woodsy areas.

    I am no expert. I am still learning and perhaps we can benefit together.

     I love nature and hope I do not have to give up going to a beautiful part of NY State due to my fear of greater exposure there to Lyme Disease and further reinfection. But it might come to that, so as to give my body a break, until perhaps one day a good vaccine is approved for humans. After all, Lyme Disease is now an epidemic.

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