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Living with Lyme Disease Series # 1
Susan Schaeffer 2009 -all rights reserved
I am painting again.
It started as a thought , then an action.
I have dreamed for years of trying my hand at encaustic painting - as a viable way to combine my love for various mediums and be able to work with the luminous , multi-layered effects of wax. It is an old media
( more than 2500 years old ) yet can be used in so many glorious and inventive ways that it is thoroughly modern , too .
It has the immediacy of Sumi painting and the Old World glow of the ancients , layers of luminosity and depth , it is scrapeable , sculptable, and allows for many 'happy accidents' - a zen quality i love and appreciate.
I am hoping to eventually combine photos, painting, drawing and collage elements in order to achieve the true melding of all my interests and achieve a cohesive style that is uniquely my own.
I don't know why i waited so long to do this . I am just glad that i am doing it now.
Could it be some good will actually come out of all of the suffering ?
I'd like to think so .
That's why i decided to start with a series of Lyme Disease paintings - to help me work through my struggle , to try and find beauty in the ugliness and to make peace with what is beyond my understanding or control. This is my first work . I hope to be able to work on many more in the coming months.
Well , today i hit my three month mark for Lyme Treatment. I have had this disease a long time - but exactly how long is a mystery. After combing through my health history back to my childhood - there are some unexplained coincidental patterns to be found. Lyme can infect a person and with a healthy immune system can keep its ravages in check- until a immune system is overwhelmed and can no longer hold it at bay. Multiple exposures can add up to more problems as well as more virulent strains and the presence of co-infections. It is a complicated business.
My LLMD believes the two surgeries i had in as many years and the stresses of having a child left my immune system in a compromised position , allowing for my latest exposure ( September 08) to completely wipe out my already struggling last defense. I got hit hard. I have been terribly ill since October 2008 and wasn't diagnosed until February 2009 when i insisted on thorough bloodwork from my PCP. I knew something was terribly wrong. I even believed i had a 'parasite' of some kind. My PCP is the one who called me with the results " I know why you have been so sick - you have Lyme Disease " . I didn't believe her at first. The first test was negative. I started to read everything i could find on Lyme Disease. It started to all make sense, as all the pieces of my health's puzzle started falling into place. I remembered a tick incident in the late summer. A month later my health took a nosedive. It all started with the 'flu' . Sinus , ear, eye, upper respiratory and bladder infections followed. My Western blot came back positive and since that day there was no turning back. I was given the standard 28 days of doxycycline but little changed. I have been to the allergist , the Infectious Disease doctors , the E.N. T. specialist and the Neurologist. I had EKG's , Scans and Ultrasounds. Nothing was 'structurally' wrong with me. My PCP thought i still had Lyme Disease as nothing had changed except a few infections clearing up. She tried to get advice on how to treat me. No one offered. It was as if she hit a invisible wall. She was frustrated . I was mad. They weren't touching it with a ten foot pole. I was on my own . I continued to read all i could on the subject and decided it was time to go off the grid. I was lucky enough to find my LLMD through a referral - a woman i was aquainted with who is a Massage Therapist was working with another woman who was recovering from Lyme Disease after three devastating and crippling years of misdiagnoses. Her doctor after three short months was already reversing her paralysis and inability to speak. She pleaded with me to go see him before i got any worse. I called everyday , but he wasn't taking any new patients , being overloaded with Lymies from near and far. I kept calling. I got his wife on the phone one day and she patiently listened to my sob story - how i was dragging myself around the floor in afternoons trying to stay conscious so i could care for my toddler . My husband had fallen ill , too. We were drowning. She threw us a lifeline by taking our story to her husband and he agreed to take us on. I have been in treatment since March 2009. I was re-tested extensively and while the Lyme seems to be in hiding , i tested positive for Babesia Duncani and a Bartonella- like organism. This complicates matter but at least we know who the all the enemies are now. I am at the three month mark and have seen remarkable improvement. 50% of my symptoms have all but disappeared ( i had roughly 38 marked symptoms , including most neurological symptoms associated with Lyme Disease) I regained my cognitive abilities to a great degree , pain was highly decreased, vision restored to almost normal , energy increased exponentially. I still have many 'issues' but i am definitely on the upswing . My LLMD remarked that my swift response to my protocol was ' a very good sign' and that we could step up treatment now I am starting on Mepron tomorrow for the Babesia and my abx are being increased slightly , too. I am feeling very hopeful and happy with my progress. I have a long way to go but I feel very fortunate to have found such support and care in a relatively short amount of time. I can only pray that by making the public more aware of this insidious disease , more Doctors will become educated and will stand behind their patients to promote awareness and change in the current treatment guidelines. There are not enough Doctors who want to help us , let alone know how - more research and funding will only come if enough of us come together and insist on it. There seems to be a tide of awareness gathering power lately and this is a good sign, too. I am proud to be a part of it , if only in a small way, as i continue to fight for my health.
No , it's not another co-infection ! ; )I recently purchased a Richway Infra-red Bio-Mat for as a therapeutic adjunct to my current Lyme Disease protocol. I did some research on the ability of infra-red to immobilize and/or kill spirochetes and other bacteria , viruses , etc. It is very compelling and i would love if we could build an infra-red sauna and have it in our yard to try out this theory.
It looks as if that may be possible in the future but not at the current time so i decided on getting the BioMat instead.
The BioMat uses infrared heat within its core to cause a false 'fever' in the body which helps destroy Lyme & friends and then as you sweat - out go the toxins . That of course is an over- simplified version of what happens but it covers the basics. The infra-red heat which is EM-free helps to warm up your core , gets blood flowing, maximizes organ activity and flushes the system of toxins hiding out in the fatty tissues of your body . It heats muscles and joints and your skin stays amazingly cool ! Bottom line - it FEELS good.I hope it also does a number on the Lyme & Co. , too but in the meantime it feels like heaven.It's a win-win , as far as i am concerned. Everything used to treat this disease is ' experimental' at this point in time , unfortunately. As long as it isn't dangerous , i'll try it.So far so good - The BioMat is AMAZING !I have done several 'sweat' sessions and it is very similar to a sauna session, but easier.It eases the aches and pains and calms down the nerve endings - all a very real and persistent symptom of chronic Lyme Disease. I really feel refreshed after following up with a nice shower.
You can also use lower heat setting for pain relief or help sleeping, too.
I found myself constantly arranging and re-arranging an oddball set of microwavable heating pads to my various 'sore' spots and needless to say this in itself was a pain . How much nicer is it to plug this mat in , set the temperature and lay down on it for however long i want or need to ?
It wasn't cheap , but worth EVERY plastic penny .
I don't know if it is pure coincidence but i have felt a lot better the last few days.
I will keep you posted on its effectiveness .
Now , If you will excuse me i have a 'date' with Mat.
Learn more here :
The Science behind Infra-red technology used in Medicine
BioMat Health
Living with Lyme Disease Series # 1
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