As I said, I have no medical credentials. While I've researched intensively to understand what lyme disease is, and and I think I've come to somewhat of an understanding about it, I don't want to get into a deeply detailed explanatory description of what Lyme is. That's available from many scientific web sites.
Try this site : ww.sciencedaily.com/search/?keyword=Lyme+Disease
I like this one too : http://www.thehumansideoflyme.net/viewarticle.php?aid=62
Now why did the second one not come up blue so you can just click on it ?
After my initial 10 week antibiotic, still not knowing much about lyme except for a fast tutorial I gave myself on the internet - while feeling vague and brain fogged... I was scheduled to meet with my Naturapath Samantha Eagle again. Having given it lots of thought and having consulted with that deeper part of me which while it also employs thought for it's musings, relies more on intuition, the interconnectedness with All That IS, and a desire to be naturally healthy as holistic multi-faceted being employing natural means to achieve this. I had decided that more prolonged antibiotic courses were not for me. I was concerned that the terrain of my physical self would be destroyed by the assault of a variety of antibiotics addressing a variety of lyme co-infections. Destroying the good with the bad, the sometimes life saving impact of antibiotics can have as devastation effect on the entire human system which is an ecologically superior balanced self healing, self generating and rejuvenating design unparalleled in it's capacity for returning to homeostasis when properly encouraged supported and stimulated.
I was nervous before my doctor's appointment that I would have to argue about this with my Naturapath. I should have known she would honour & support my decision not to continue on antibiotics.
She told me she would like me to go on the Cowden Protocol. I am one of those people who need to know everything about anything that goes into my body. Since my late teens I've had a fascination for any books on the human body, even buying medical books when wquite young and poring over them. I also was intrigued by the many aspects of Natural Healing: Herbal, homeopathic, nutritional, emotional, mental, spiritual, orthomolecular... (supplemental) . From my late teens to today, (I'm 62) I find myself drawn to books articles web sites devoted to a natural healthy whole way of life.
I told Samantha (my naturapath, that I would need to research and consult with my husband on the Cowden Protocol possibility. It's a 6 month program @ 300 $ a month.
I did my research and found many anectodal reviews by lyme patients stating they'd done well on it (many) but some needed to re-do it after the 6 months. One thousand eight hundred dollars x 2 ? That would bring us to $3,600.00 if I needed to do it again. Then I researched the doctor, the protocol products, the research. The studies were done in vitro (test tube). Since lyme and the organisms the tick releases into our bodies are so adaptive and can mutate to avoid detection as they burrow and lodge into diverse areas of our bodies, how can a one size fits all protocol work for everyone ? Every article I read talks about how differently it manifests in each individual d4epending on medical history, existing conditions and predispositions, mental, emotional, and spiritual dispositions, familial and social support... As with any health challenge the components for returning to wellness are diverse varied and INDIVIDUAL
I also was put off by the company which makes the Cowden Protocol, nutramedix. I saw that they tweaked the natural make-up of Devil's Claw, removed some alkalanoids and surprise surprise, patented the resulting product. The reason Devil's Claw is used by alternative care practitioners and their patients is because of the observation of indigenous people's succesful application of it in inflammatory conditions. Do you think these natives brought the herb into their labs and improved the natural chemical composition of Devil's Claw before using it ?
Do you think they then made it into capsules ?
Over thirty years ago I was very clearly told. You have cancer. You should abort "the fetus" you've been carrying for 4.5 moths and allow me to give you a radical hysterectomy, followed by radiation and chemotherapy. I very clearly said goodby and went on to design and follow my own natural program of recovery. I was told my baby wouldn't have a mother for long.
To encapsulate - if you haven't read previous postings or the about me section, I used natural means to recover, the fetus is 30 years old and has a 28 year old brother. I still have all my "female innards" and have never had a relapse.
During that time I felt vulnerable fearful and terrified (for my baby). After watching Under Our Skin (a well known film about lyme), , and reading many case histories, medical reports and papers, articles and news reports on Lyme I felt the same.
Somehow I knew I would get my power back by taking the reins over on the path back to health.
Friday, February 15, 2013
Sunday, February 10, 2013
Shaking Hands With Lyme - Initial Care Plan Outline
I now feel I have to go back and organize the information I found
online and in books I have. Then I have to hone in on putting together
my thoughts and designing a plan. Have to keep chipping at it in the
meantime.
I've gathered up a shitload of info - and what I do w hen I research is eventually write an outline and a paper for myself (with info & research references included so I can remember 'why' I decided to take something.
I definitely want as much as I can to originate from the country I live in now. Roots and barks don't have to come from a rainforest to be powerful. Of course there's more mystique in foreign "cures".
My body has always responded to hot water infusions/teas better than tinctures so what I can find in that form I'll probably take in that form.
I'm thinking I need to organize substances I'm interested in into several categories :
Biofilm Busters, anti-viral anti-bacterial anti- microbial anti-fungal anti-parasitic substances.
anti-inflammatory and pain substances
Detoxifiers and Cleansers: for the endocrine system and the skin and the bowels where some of the slain spirodudes end up. And some substances (especially upping my water intake) which can offset herxing which is too intense.
Rebuilders: rejuvinators, revitilizers - and health enhancing substances foods and practices ...
I need to incorporate physical stretching, balance building and strengthening movements into my day.
Spiritual, mental and emotional cleansing andpractices substances to help anxiety and the famous Lyme rage and to help me sleep, and support the adrenals since all this stress drains them.
It's making me tired just looking at all that. I first consulted my intuition and then went looking around the internet and I see that a lot of Lyme veterans did and do some of the things I instinctively arrived at. Rotating the phases above and I also think I may go on one plan for a month or so and rotate plans too, so the spirochetes don't adapt to whatever I'm doing and find ways to withstand.
Having a high deductible as I've always had when I did have insurance has probably saved my life. The people I know who have good insurance have all been persuaded to be good cash flow patients on multiple prescriptions, getting tests and having appointments all the time. I have a strong aversion to doctors, (Naturapaths especially the wonderful one I have now has dispelled some of that)
I think that aversion is my will to live intuition. I know that the real doctors of long ago, herbalists, energy healers and midwives, were burned at the stake long ago, and those who still remain are under frequent threat of harassment & persecution from the AMA.
I hope I have enough energy left to me to finish off this fight favourably and just live in some semblance of peace, comfort, and tranquility for the rest of my life.
At the very least I can at least give it my best.
I've gathered up a shitload of info - and what I do w hen I research is eventually write an outline and a paper for myself (with info & research references included so I can remember 'why' I decided to take something.
I definitely want as much as I can to originate from the country I live in now. Roots and barks don't have to come from a rainforest to be powerful. Of course there's more mystique in foreign "cures".
My body has always responded to hot water infusions/teas better than tinctures so what I can find in that form I'll probably take in that form.
I'm thinking I need to organize substances I'm interested in into several categories :
Biofilm Busters, anti-viral anti-bacterial anti- microbial anti-fungal anti-parasitic substances.
anti-inflammatory and pain substances
Detoxifiers and Cleansers: for the endocrine system and the skin and the bowels where some of the slain spirodudes end up. And some substances (especially upping my water intake) which can offset herxing which is too intense.
Rebuilders: rejuvinators, revitilizers - and health enhancing substances foods and practices ...
I need to incorporate physical stretching, balance building and strengthening movements into my day.
Spiritual, mental and emotional cleansing andpractices substances to help anxiety and the famous Lyme rage and to help me sleep, and support the adrenals since all this stress drains them.
It's making me tired just looking at all that. I first consulted my intuition and then went looking around the internet and I see that a lot of Lyme veterans did and do some of the things I instinctively arrived at. Rotating the phases above and I also think I may go on one plan for a month or so and rotate plans too, so the spirochetes don't adapt to whatever I'm doing and find ways to withstand.
Having a high deductible as I've always had when I did have insurance has probably saved my life. The people I know who have good insurance have all been persuaded to be good cash flow patients on multiple prescriptions, getting tests and having appointments all the time. I have a strong aversion to doctors, (Naturapaths especially the wonderful one I have now has dispelled some of that)
I think that aversion is my will to live intuition. I know that the real doctors of long ago, herbalists, energy healers and midwives, were burned at the stake long ago, and those who still remain are under frequent threat of harassment & persecution from the AMA.
I hope I have enough energy left to me to finish off this fight favourably and just live in some semblance of peace, comfort, and tranquility for the rest of my life.
At the very least I can at least give it my best.
Shaking Hands With Lyme.
On October 24th while showering I felt what felt like little skin tag from a cut high up on my inner thigh. I looked down and saw a red spot with a little darker spot in the middle where I had felt the 'raised skin'. My first thought was that my big exuberant 90 lb. dog Ringo must have nicked the place with his huge toenail while jumping up on me. Something he's still having a hard time with. For some reason I brought the "piece of skin" into my line of vision instead of letting it go down the drain. I don't wear my glasses in the shower but as I thought I saw movement I picked them up from the edge of the tub, put them on and saw several tiny black legs waving at me from the alleged "skin"...
I got out - found a jar to put the tick in and finished my shower. Although I've always been a health nut I never read much about ticks or Lyme Disease because I had left Connecticut around age 18 and settled in Vermont. Lyme was not thought to be a problem in Vermont. Hell, Lyme has been downplayed in every state of the Union, even in Lyme Connecticut. I, unfortunately was in the middle of switching from one insurance to another so I didn't go to the doctor until 10 days later when I woke up to a huge tomatoe red swollen spot 8 to 10 " in diameter on the inside of my leg. Being as I'd been on a photography kick, and taking a lot of photographs lately and I didn't know how soon I'd be able to see a doctor I took some photos of it.
I was able to get an appointment for that day. The doctor, a new one in town impressed me with a lively intelligence, respect for the patient, and a down to earth empathetic approach. She said that since I didn't have the bull's eye rash she believed I didn't have lyme but an infection from the tick bite... She put me on Doxycycline an antibiotic used for lyme for two weeks. I'm not sure why she prescribed an antibiotic routinely used to treat Lyme, except maybe her intuition knew it was lyme.
Two weeks according to those medical practitioners who are what is described as an lld (lyme literate doctors) is not enough at all. When I went home I took my first dose and as the day progressed Began to experience the worst chills I've ever had, a fever, (which I rarely have as I have hypothyroid (Hashimoto's Disease and have always had sub "normal' temperature), a raging headache which felt like it went from my tailbone to my head, and a deep aching in my joints.
My son dropped by and stayed home from work because my husband was at work and as my son said later he had never seen me in such a condition.I had on sweat pants a sweater a bathrobe a coat and several blankets but couldn't get rid of the the deepest most bone rattling shakes I've ever had. I got through that day, and the next day the bite site had turned totally black ! I hardly ever consult with any type of doctor but this was scary shit !
After doing some research and reading and talking to lyme patients I felt that Samantha Eagle my ND (naturapathic physician may be more lyme literate than a mainstream allopathic physician so I called. She and her colleague had just returned from a Lyme Conference in Boston !!! Samantha is a wonderful doctor who respects her client's intuitive knowing about their own bodies.When I went in for my appointment I brought the photo of the bite which had improved somewhat. She looked at my photo, examined the real thing, left the room to consult with her colleague and returned to tell me that she and her colleague, who had also attended the Lyme Conference, concurred that the bite site which had somewhat subsided was a lyme reaction . So, I was put on 8 more weeks of the same antibiotic, Doxycycline. A long standing IBS, Chron's kind of condition was absent throughout the antibiotic course and returned after it was done. I felt pretty bad while taking the antibiotics otherwise. When I was done with the course the spirochetes resumed their partying in my body with a vengenceand once again I felt lousy , but not in as immediate a crisis mode as right after the reddening of the bite.
Shaking Hands With Lyme is a phrase lyme patients will see in a different way than others because as the organisms (spirochetes) which a tick releases into it's host's body through it's bite rushes to it's favourite spots, which include the deep tissues, joints, brain and nervous system lyme can cause tremors and shakes.
I may change my entire blog title to this post title, Shaking Hands With Lyme, because lyme, once you're diagnosed with it, and even before if you're bitten and don't know you have been , can take over your life.
I don't want to be a lymey, a lyme sufferer, lyme patient, or lyme survivor.I don't want to define myself by this one aspect of my life. Once lyme spirochetes take over your body, they infiltrate every area of your life and it can become a struggle to have any life other than fighting the diverse and constantly changing symptoms. But it's a struggle worth fighting. Our lives are wondrous gifts, and meant to be lived joyously and I intend to fight for that.
Some of the areas of your life lyme may change (and not necessarily forever - to use one of my favourite phrases around this Lyme situation these are some of the parts of your life which may change "for now":
Work: many people become unable to work afraid that their brains and bodies which have become so unpredictable will not hold up.
Relationships: unless you're married to Christ himself or Mother Teresa, your relationships will be strained by many challenges. You may confide in some of your family or friends about what you're going through, and find there will be big disbelieving silences from the other side, or they wont respond to an e-mail where you've answered their query " How have you been?"
Keeping up with your home: Sometimes you'll have to let a let of chores go at home because every move hurts and you keep dropping things or banging into things because your strength and balance are screwed up.
Recreation: , Even reading has been compromised and since I'm an ardent bibliophile (book-aholic), that's upsetting. Spirochetes can affect the eyes. The fatigue keeps you from going places and by the time you get what you really need & have to do done (whatever you can manage to do), sometimes you've used up all your zing for the day.
ExerciseMy many daily walks which are like oxygen to me have had to be shortened and cut down some for now.
Creativity: Last night I took out my guitar feeling the desire to play some old songs and write a new one. I hadn't realized all my zing for the day was gone. It felt sad to put her back in the case without having really felt the spark I usually feel when she's in my arms. An the new song that had stirred awake while I was walking with the dogs evaporated... for now... I keep that phrase "for now" alive in my heart because
Emotions: are all over the place. Depressed/hopeful. defeated/determined. despondent/encouraged... There's even an edginess which varies in intensity from individual to individual which has been dubbed "lyme rage".
IQ ! : Your IQ may not change but it sure may seem like it, if the spirochetes decided to have' Spring Break' in your brain. Things which were your forte, like spelling for instance may go haywire. Your ability to c'connect the dots' so to speak may diminish.
Spiritual: I have always felt a deep conncection to Spirit and my spiritual world but at times, illness can stand between your and your idea of God/ess. It's almost a challenge to your commitment to your connection to spirit
When I was 30 and pregnant with my second child, I was diagnosed with cancer, as I may have written in the "About me" part of this blog. I was 4 and a half months pregnant. A young hotshot oncologist at Dartmouth Hitchcock Hospitel (my 4th opinion) told me if I was his patient he would urge me to treat it aggressively ; abort 'the fetus', (my baby !), and have a radical hysterectomy followed by chemo and radiation. I told him that what he called the fetus, was already "the baby" in my heart, and I was not willing to sacrifice my baby's life for mine. He assured me that if I didn't follow his recommendation "the baby" (said somewhat dismissively) would not have a mother.
He was implying that if I didn't do it his way, I would die. This infuriated me and I basically said "Sayonara" (goodbye in Japanese). My journey back to wellness is the subject of a book which I've been writing for far too long, called Blueprint For joy. I'm lucky to have this experience in my history because it gives me some confidence in this journey through the mysterious abyss of this Lyme Disease.
This blog will be where I explore symptoms, treatments, my experiences and those of the many people who have materialized in my life who also have lyme. It will help me to organize and outline my own custom made wellness plan and to share it with others. As I said to a fellow lyme challenged person - WE SHALL OVERCOME !
I got out - found a jar to put the tick in and finished my shower. Although I've always been a health nut I never read much about ticks or Lyme Disease because I had left Connecticut around age 18 and settled in Vermont. Lyme was not thought to be a problem in Vermont. Hell, Lyme has been downplayed in every state of the Union, even in Lyme Connecticut. I, unfortunately was in the middle of switching from one insurance to another so I didn't go to the doctor until 10 days later when I woke up to a huge tomatoe red swollen spot 8 to 10 " in diameter on the inside of my leg. Being as I'd been on a photography kick, and taking a lot of photographs lately and I didn't know how soon I'd be able to see a doctor I took some photos of it.
I was able to get an appointment for that day. The doctor, a new one in town impressed me with a lively intelligence, respect for the patient, and a down to earth empathetic approach. She said that since I didn't have the bull's eye rash she believed I didn't have lyme but an infection from the tick bite... She put me on Doxycycline an antibiotic used for lyme for two weeks. I'm not sure why she prescribed an antibiotic routinely used to treat Lyme, except maybe her intuition knew it was lyme.
Two weeks according to those medical practitioners who are what is described as an lld (lyme literate doctors) is not enough at all. When I went home I took my first dose and as the day progressed Began to experience the worst chills I've ever had, a fever, (which I rarely have as I have hypothyroid (Hashimoto's Disease and have always had sub "normal' temperature), a raging headache which felt like it went from my tailbone to my head, and a deep aching in my joints.
My son dropped by and stayed home from work because my husband was at work and as my son said later he had never seen me in such a condition.I had on sweat pants a sweater a bathrobe a coat and several blankets but couldn't get rid of the the deepest most bone rattling shakes I've ever had. I got through that day, and the next day the bite site had turned totally black ! I hardly ever consult with any type of doctor but this was scary shit !
After doing some research and reading and talking to lyme patients I felt that Samantha Eagle my ND (naturapathic physician may be more lyme literate than a mainstream allopathic physician so I called. She and her colleague had just returned from a Lyme Conference in Boston !!! Samantha is a wonderful doctor who respects her client's intuitive knowing about their own bodies.When I went in for my appointment I brought the photo of the bite which had improved somewhat. She looked at my photo, examined the real thing, left the room to consult with her colleague and returned to tell me that she and her colleague, who had also attended the Lyme Conference, concurred that the bite site which had somewhat subsided was a lyme reaction . So, I was put on 8 more weeks of the same antibiotic, Doxycycline. A long standing IBS, Chron's kind of condition was absent throughout the antibiotic course and returned after it was done. I felt pretty bad while taking the antibiotics otherwise. When I was done with the course the spirochetes resumed their partying in my body with a vengenceand once again I felt lousy , but not in as immediate a crisis mode as right after the reddening of the bite.
Shaking Hands With Lyme is a phrase lyme patients will see in a different way than others because as the organisms (spirochetes) which a tick releases into it's host's body through it's bite rushes to it's favourite spots, which include the deep tissues, joints, brain and nervous system lyme can cause tremors and shakes.
I may change my entire blog title to this post title, Shaking Hands With Lyme, because lyme, once you're diagnosed with it, and even before if you're bitten and don't know you have been , can take over your life.
I don't want to be a lymey, a lyme sufferer, lyme patient, or lyme survivor.I don't want to define myself by this one aspect of my life. Once lyme spirochetes take over your body, they infiltrate every area of your life and it can become a struggle to have any life other than fighting the diverse and constantly changing symptoms. But it's a struggle worth fighting. Our lives are wondrous gifts, and meant to be lived joyously and I intend to fight for that.
Some of the areas of your life lyme may change (and not necessarily forever - to use one of my favourite phrases around this Lyme situation these are some of the parts of your life which may change "for now":
Work: many people become unable to work afraid that their brains and bodies which have become so unpredictable will not hold up.
Relationships: unless you're married to Christ himself or Mother Teresa, your relationships will be strained by many challenges. You may confide in some of your family or friends about what you're going through, and find there will be big disbelieving silences from the other side, or they wont respond to an e-mail where you've answered their query " How have you been?"
Keeping up with your home: Sometimes you'll have to let a let of chores go at home because every move hurts and you keep dropping things or banging into things because your strength and balance are screwed up.
Recreation: , Even reading has been compromised and since I'm an ardent bibliophile (book-aholic), that's upsetting. Spirochetes can affect the eyes. The fatigue keeps you from going places and by the time you get what you really need & have to do done (whatever you can manage to do), sometimes you've used up all your zing for the day.
ExerciseMy many daily walks which are like oxygen to me have had to be shortened and cut down some for now.
Creativity: Last night I took out my guitar feeling the desire to play some old songs and write a new one. I hadn't realized all my zing for the day was gone. It felt sad to put her back in the case without having really felt the spark I usually feel when she's in my arms. An the new song that had stirred awake while I was walking with the dogs evaporated... for now... I keep that phrase "for now" alive in my heart because
Emotions: are all over the place. Depressed/hopeful. defeated/determined. despondent/encouraged... There's even an edginess which varies in intensity from individual to individual which has been dubbed "lyme rage".
IQ ! : Your IQ may not change but it sure may seem like it, if the spirochetes decided to have' Spring Break' in your brain. Things which were your forte, like spelling for instance may go haywire. Your ability to c'connect the dots' so to speak may diminish.
Spiritual: I have always felt a deep conncection to Spirit and my spiritual world but at times, illness can stand between your and your idea of God/ess. It's almost a challenge to your commitment to your connection to spirit
When I was 30 and pregnant with my second child, I was diagnosed with cancer, as I may have written in the "About me" part of this blog. I was 4 and a half months pregnant. A young hotshot oncologist at Dartmouth Hitchcock Hospitel (my 4th opinion) told me if I was his patient he would urge me to treat it aggressively ; abort 'the fetus', (my baby !), and have a radical hysterectomy followed by chemo and radiation. I told him that what he called the fetus, was already "the baby" in my heart, and I was not willing to sacrifice my baby's life for mine. He assured me that if I didn't follow his recommendation "the baby" (said somewhat dismissively) would not have a mother.
He was implying that if I didn't do it his way, I would die. This infuriated me and I basically said "Sayonara" (goodbye in Japanese). My journey back to wellness is the subject of a book which I've been writing for far too long, called Blueprint For joy. I'm lucky to have this experience in my history because it gives me some confidence in this journey through the mysterious abyss of this Lyme Disease.
This blog will be where I explore symptoms, treatments, my experiences and those of the many people who have materialized in my life who also have lyme. It will help me to organize and outline my own custom made wellness plan and to share it with others. As I said to a fellow lyme challenged person - WE SHALL OVERCOME !
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