Shaking Hands With Lyme

Tuesday, May 28, 2013

The Sky Is Falling - Lyme Disease & Hypersensitivity

 


I’ve always felt other’s misfortunes deeply. In Italy as a child I would agonize over the paintings of The Stations of the Cross in church. It’s a series of 12 paintings which depict Christ’s carrying of the cross through town to the hill where he was said to be crucified. The paintings depict a young Jesus  being stoned and nailed to a cross, hung and stabbed. I identified so much with his being rejected and abandoned and undefended.
When I was 2 my family had had to leave me. Being away from primary caregivers feels life threatening to very small children and that’s why they sometimes cry so desperately. There is a great gift in sorrows and losses at an early age and I know that the heart shattering experience of having everything and everyone I’d known in my life suddenly disappear has made me with deep and strong empathy for others. At times I’ve felt as if every sorrow and loss in the world was also mine.
Lyme Disease has accentuated this sensitivity.
A psychic once called me a hyper-empath and this resonated as truth. This morning I read about Chief  Raoni weeping after being told that the president of Brazil had Ok-ed  the building of a power dam which will displace 40,000 indigenous people and a huge portion of our Earth’s biology - (flora and fauna. When I read of it and saw him weeping I felt a contraction in my solar plexus and a deep personal despair.
Maybe in part it’s my sincere feeling and belief in our interconnectedness which makes me feel everyone’s misfortunes so deeply.
In one of my last posts I mentioned that Lyme, like everything in this dichotomous life duality of  ying and yang and positive and negative  has brought some gifts. One is that  I’ve literally “lost my grip” on many things and broken them, and since my spatial  and cognitive sense has changed I’ve been clumsier and hurt myself. This seems like a dubious gift, but I find myself exquisitely slowed down into being more aware of my actions and movements sometimes, even in washing dishes. We bought some square plates recently and they chip easily in our small kitchen’s somewhat diminutive double sink.
Mindfulness is one of the gifts this Lyme experience has heightened in me. It could do the same for other Lyme patients.
What I need now is to learn how to slow down and get this ‘ extreme ‘ mindfulness and awareness to work in my favour instead of against me. It helps me to be aware and mindful but when it crosses the line into the  unfiltered barrage of impressions and feelings which the impact of spirochetal activity and by-products in the central nervous system can elicit  I feel like a runaway train of emotions and unpleasant physical sensations.
 
What follows is an illustration of one of my over reactive episodes
(Not sure if this was necessarily ‘over’ reaction. The thing is that the nervous tension over things which happened and the length of time that I was in a state of heightened arousal was longer than in the past. This may be due to the fact that the tick bite I received in September of 2012 was a re-infection and many believe that these re-infections in Chronic Lyme can be severe).

Friday I had an appointment with my Naturapathic physician, Samantha Eagle in Brattleboro Vermont. I have a deep liking for and trust in Samantha, so I didn’t have the nervous “going to the doctor’s”  feeling that doctor’s appointments sometimes bring about.
When I opened my door at 8 to let my dogs and 2 cats out I saw a power cable had fallen from the house across the street where my son lives, over his car and was lying across the road. My first thought “Hot dog ! Don’t want the dogs (and cats) electrocuted. I go over and pick up my son’s dog and walk him with mine in the morning and that was an added concern on this morning.
I had to : call my son, gather the cats back in, contact the power company, contact the association of the housing complex I live in, try to set up some warning for drivers, shower & eat breakfast, call the doctor’s in case the cable was not fixed in time, walk the dogs, contact a friend who was ill to whom I was bringing some medicinal herbs after my appointment  and get to the doctor’s half an hour away in 3 hours.
I got rattled. That seems understandable to me, but the length of time I remained rattled was inordinate. My blood pressure was up 140 over 80 something I think. That kind of prolonged response o stress can release very harmful stress hormones into our systems and damage our adrenal glands heart and  general health. For several days after I monitored my blood pressure and it was back to it's low 114 to 120 over numbers in the 50s & 60s.
I’ve been in this condition before. Dr. Eagle thinks (and I agree) that due to my medical history and diagnoses I have been bitten multiple times and have had Lyme Disease for a long time. My estimate is at least 30 years if not since childhood. It’s after the birth of my son Ben 31 years ago in 1980 that my health took a nosedive. After my 6 years of being the single caretaker for my mom who had Dementia and died in our home in 2005 my health took another major nose dive and I become unable to work as I had before.

So what will I do about this hypersensitivity and inordinate stress response ? Well, I’m lucky to have tools and to have learned skills which can help me to explore and modify this. Self hypnosis, meditation, behaviour modification, guided imagery,  journaling, all have been paths I’ve traveled on before with success and good results. They’re part of my life but have taken a back seat to the more physical aspects of Lyme which I’ve been addressing.
It’s always a mistake to address a whole - separately. When we concentrate too much on the mental, physical or spiritual we become like an imbalanced footstool which cannot give up the support we need. Personal and spiritual integratio  must keep pace with my physical healing. And yes, although I’ve said that I don’t believe we can ever truly remove the presence of spirochetes in our bodies I do believe healing and living a healthy joyous life in spite of this is possible.

Monday, May 27, 2013

LIVING IN THE MOMENT - ANOTHER LYME ANTHEM




http://www.youtube.com/watch?v=l8TS8hMpxCw

Another Lyme anthem for me. There are many messages for me in this Lyme experience and one of them is the preciousness of every moment. This is something I learned with the cancer scare 31 years ago when I was told that if I didn't abort Ben and have a radical hysterectomy I would die. Ive taght mindfulness meditation in my Tiep Hien  classes in the past, but ocassionally in spite of that I lose my hold on my connection with the present. Whenever we waste time awfulizing  & brooding over the past, anticipating calamities and worrying about the future we leave the precious  present moments vacant and unoticed. 
http://www.youtube.com/watch?v=l8TS8hMpxCw
Love these lines "I'm living in the moment
I'm living my life
Just taking it easy
With peace in my mind
Got peace in my heart
Got peace in my soul
Oh, wherever I'm going, I'm already home."
One of Thich Nhat Hahn's  grounding Tiep Hien meditations I love best is:

 "Breathing in ... I have arrived. Breathing out ... I am home." Do it when you're out walking or rushing to work or racing home ...



REVIEW OF SHORT & LONG ANTIBIOTIC THERAPY FOR LYME PATIENTS OXford University




http://m.cid.oxfordjournals.org/content/45/2/149.long

Note that there is a possible conflict  of interest as the author of this paper is a consultant for
Q Med RX

After much research for months I'm still reluctant to allow myself to be put on antibiotics again.  While I believe in the life saving eficiency of antibiotics in many instances I strongly question the sacrificing of the natural balance of beneficial and harmful bacterial population in the body through prolonged antibiotic prescription.


LIST OF LYME SYMPTOM FROM A DESPERATE 21 YR. OLD WOMAN





Found this old post in a Lyme Support chat forum. How sad to hear of a 21 year old with all these symptoms. I've had all of them at various times. Her noting the severity of symptoms increasing after alcohol use is something to consider. If I got too festive at a family  gathering have more than  my customary 1 or 2 glasses of wine or 1 drink,  my symptoms worsened or I had strange scary health episodes. I choose to see this as a call to clean and moderate living and have made it a point to not get too festive that way . Have you noticed a worsening of symptoms after drinking alcohol ?


09/20/2007 09:11 PM

michele611
michele611
Posts: 5
Member

Hello everyone, I am a 21 year old female from Long Island, New York, although I feel like I have the health of an 80 year old woman. I go to college in upstate New York and just began my senior year. This past November, I experience my first of many strange episodes. I was driving home from school when all of a sudden I felt this miserable sensation throughout my body, almost like a hot flash. It felt as if a venom was traveling through my veins from head to toe. I felt as if I was on the verge of passing out and my heart was racing. I was very nausea, dizzy, and became extremely weak. I called 911 and was taken to the hospital, being released later that day with "anxiety". I didn't think anything of it, and went on with everyday life. However, a few weeks later, the same thing happened and this is where my 10 month journey began. What started off as these random episodes has turned my life into a living nightmare, so much as that I am considering withdrawing from school. These episodes have turned to start resembling seizures (I have severe jerking of my limbs), but do not fall into the common criteria for a seizure. From November until now, getting worse with each month, I feel HORRIBLE everyday. I have had such strange sensations and symptoms that have lead me to over 25 doctors of every type imaginable, and numerous visits to the ER. I have recently pieced together that these episodes occur only 24-48 hours after alcohol use, and since I have stopped drinking, the episodes have stopped. However, the misery that I feel everyday has only gotten worse with time. Although I was tested for Lyme by my Neurologist back in November and had a spinal tap this past July to which both were negative, I FINALLY tested positive 2 weeks ago when I went to an infectious disease doctor. Although my ELISA, PCR and Western Blot iGg test came back negative for Lyme, my Western Blot iGm test came back positive. This doctor still refused to put me on anti-biotics and insisted that I come back in a month to re-test. My mom went to a Lyme Disease Association Forum out in Riverhead and researched a bunch of ILADS doctors considering my infectious disease doctor was of no help. I have recently gone to an ILADS doctor who took a series of bloodwork to be sent to Igenex, but it won't be back until next week. I feel so confident that I have Lyme due to the uncanny similarities of my symptoms although I never noticed a rash, but are looking for any reassurance as to whether anyone else has had some of my symptoms...here goes the list (I might be here for a whileTongue )
Everyday Symptoms:
-CONSTANT MALAISE (I can't put my finger on what feels wrong but I constantly feel like something just isn't right)
-Visual disturbances (floaters, flashes, peripheral shadows, what looks like millions of tiny particles-- it looks like i can see air, words moving on paper while reading and looks as if the floors is moving like waves sometimes)
-Ringing, pulsing in ear
-Feeling the need to "pop" my left ear, pressure
-Uncontrollable muscle spasms (hundreds a day all over body)
-Extreme eye twitch in upper eyelid of my left eye
-Creaking/cracking in the base of my skull/neck that is getting worse with time
-Dizziness/the "spins" sensation
-Head rocking (my head shakes up and down in what seems to by rhythm with my pulse)
-Throbbing/pulsing sensation in my head/neck/face(it feels like I can feel my pulse in my brain)
-Shaky hands, arms, muscles (My hands tremble, I notice it a lot when I read magazines because the pages shake)
-Increasingly worse heart palpitations that have been recorded by my cardiologist
-Sensation when I'm laying down as if I am rocking on a boat
-Body rocking (my body actually rocks back and forth involuntarily on occasion)
-CONSTANT FATIGUE ALL DAY, EVERY DAY
-Inability to fall asleep at night
-Body weakness/heaviness
-Irregular menstural cycle
-Sudden muscle jerks/movements
-Loss of balance/tip over while walking/walk into things
-Vibration sensation in my feet
-Feeling as if I can't take a satisfying, deep breath
-Loss of energy
-The chills
-Pressure and sometimes pain in my knees, hips
-Slowed processing of information
-Inability to keep concentration
-Headaches/ sharp pains in the back of my head that last for a few seconds but are persistent
--I'm sure many more that I am forgetting
I must add that all of this has lead to anxiety and depression which has only made matters that much worse. I do take .25mg Xanax when I feel very sick and although I become relaxed, my symptoms do not decrease. I never have the desire to do anything anymore and I lay around all day because of how sick I feel. I just started 100mg 2 times a day of oral doxycyclene but havn't felt any improvement yet. Has anyone had Herx reaction to anti-biotics and if so, how long did it last?
I need help...I feel like I have no where to turn and my parents feel so helpless. I have had every test imaginable from a colonoscopy to MRI's, MRA's, an EGG, EMG, a spinal tap and countless amounts of bloodwork. I have seen an infectious disease doctor, a neurologist, cardiologist, endocrinologist, GI, Opthamologist, Neuro-opthamologist, movement disorder specialist, and the list goes on. Doctor after doctor has told me that they can't classify my condition or that this is some kind of strange anxiety. I truely feel that I know my body and it's not. If ANYONE can please comment on my story, relay some helpful advice or let me know if you've had any of my symptoms PLEASE DO, I will appreciate it more than you know. The past 10 months have turned my life into a living nightmare and I am losing hope of feeling like my normal, happy self with each day that passes. The only thing that brings me comfort is reading symptoms and stories of other people and feeling as if I'm not alone. I think that it's so wonderful that people can join together to help eachother and offer advice and consolation and hope that this will turn out positive for me Smile Thank you for your time and please feel free to contact me!Cool
Post edited by: michele611, at: 09/21/2007 09:15

This list of symptoms could be mine. I no longer have all of the symptoms all the time. I'm 63 - I can learn to live with this. Wonder how this poor girl is doing now - 6 years later ...