Minun tarinani - oireita tuli aina vain enemmän.
Kymmenen vuoden ajan, 1997 - 2007, olin epätietoinen mikä minua vaivasi. Yritin hoitaa itseäni erilaisilla lääketieteen ja homeopatian keinoilla. Viimein sopeuduin ajatukseen lähestyvästä kuolemasta. Olin kuitenkin varma että oireeni aiheutti jokin johon voi vaikuttaa - jos vain tietäisin mikä. Tutkin asioita ja muutin elämäntapani terveellisempään suuntaan; vahvistin immuunipuolustustani, söin paljon vihreää luomuravintoa, käytin lisäravinteita ja yrttejä sekä huolehdin liikunnasta ja levosta.
Oireeni olivat hämmentäviä; oireet saattoivat vaihdella kuukausittain ja välillä oli oireettomia viikkoja. Se tuntui järjettömältä. En saanut kokonaiskuvaa tilanteestani. Oireita esiintyi kaikkialla elimistössäni. Ajan myötä tilanteeni vain paheni. Lääketieteen testeissä ei havaittu mitään vikaa. Siksi oireideni kerrottiin olevan psyykkisiä. Epäilin alussa että oireeni johtuivat päähäni osuneesta iskusta tai leikkauksesta. Sitten epäilin aivovammaa ja myöhemmin infektiota.
Muistan istuneeni työpöytäni ääressä kun havaitsin kyynärtaipeen läheisyydessä rengasmaisen ihomuutoksen. En mennyt lääkärinvastaanotolle näyttämään ihomuutosta. Se hävisi ilman hoitoa. Myöhemmin aloin saada kummallisia oireita; puutumista, kipuja, aivosumua. Yhtenä aamuna kaaduin lattialle noustessani vuoteesta. Jaloissani ei ollut tuntoa. Stressinsietokykyni aleni, sain rinta-alueen kramppeja, univaikeuksia, keskittymisongelmia, aivokalvontulehdus, päänsärkyä, kaatuilua jne. Kaksi vuotta oireiden alkamisesta aloin saada selkäkramppeja, lihas-luustokipuja, polvinivel meni kesken kävelyn lukkoon, kasvot alkoivat punottaa ilman syytä jne.
V.200 alkoivat silmäoireet ja nivelvaivat pahenivatt, sain lyhyitä muistinmenetyksiä ym kognitiivisia ongelmia, turvotusta eri puolilla kehoa esim. käsivarsissa sekä hengenahdistusta. Lääkärin mukaan sairastin kroonista keuhko-ja sydänsairautta joihin ei ole olemassa hoitoa. Aloitin homeopaattisen hoidon ja sydämeni/keuhkoni olivat kunnossa alle 3:ssa viikossa.
En muista kaikkia oireita joita edeltävien kahdentoista vuoden aikana olen kokenut; univaikeudet, reflux aterioiden jälkeen, leuka- ja hammaskivut. Hammaslääkärilläkäynti ei auttanut asiaan. V.2004 alkoivat voimakkaat kivut selkärangassa ja hartioista sormenpäihin sekä polvista varpaiden päähän - periferaalinen neuropatia. Kipu oli niin voimakasta että itkin. Röntgenissä ei näkynyt mitään syytä oireisiin. Vuosien aikana selkääni muodostui mutka. Jotkut oireista ovat kestäneet vain jonkin aikaa tai esiintyneet aika ajoin. Useimmat ovat kuitenkin pysyneet enemmän tai vähemmän aktiivisina vuodesta toiseen. Pahimmillaan kärsin yli 50:stä oireesta samanaikaisesti.
Vähitellen sellaisetkin asiat jotka olivat olleet ennen helppoja, muuttuivat vaikeiksi. Tein uskomattomia virheitä, sanoin sellaista mitä en ennen olisi sanonut. En selviytynyt enää rakastamassani työssä vaan jouduin lopettamaan työnteon. Aloin opiskella sellaista alaa jossa selviäisin kipujeni ja kognitiivisten ongelmieni kanssa paremmin. Terveyteni ei kuitenkaan kestänyt työntekoa ja toimeentuloni vaikeutui huomattavasti. Menin uudelleen lääkäriin. Siellä sain negatiivisten testitulosten jälkeen kuulla olevani luulotautinen. Olin nöyryytetty. En saanut työkyvyttömyyseläkettä koska testini olivat puhtaat. Olin maksanut vakuutusmaksuja yli 30 vuoden ajan! Lopetin lääkärilläkäynnit koska se oli henkiselle terveydelleni parempi vaihtoehto.
Vuosien aikana, uusien oireiden ilmetessä, kyselin perheeltäni ja ystäviltäni mistä ne mahtavat johtua. He uskoivat lääkäreitä ja pyysivät minua olemaan ajattelematta oireitani. "Jos olisit työelämässä sinulla ei olisi aikaa huomioida oireitasi." "Tarkkailet liikaa oireitasi." Jatkoin kuitenkin etsimistä. Viimein huomasin päänsärkyni sopivan Borrelioosin oireeksi. Olin törmännyt Borrelioosiin jo aiempinakin vuosina mutta jätin sen huomioimatta koska olin lukenut että Kanadassa ei ole Borrelioosia (hallituksen sivut) - olin uskonut heitä. Aloin lukea Borrelioosia käsitteleviä artikkeleita ja potilaiden kokemuksia.
Huomasin nopeasti että taudin diagnostiikassa ja hoidossa esiintyi suuria ongelmia.
Mahdollisuuteni saada hoitoa olivat surkeat. Kävin Borrelioosiin erikoistuneen lääkärin vastaanotolla ja testeissä selvisi että minulla oli Borrelioosin lisäksi Bartonella ja Babesioosi. Lähdin välittömästi naturopaatin vastaanotolle. Kolmen kuukauden hoidon jälkeen osa oireista oli hävinnyt; silmäoireet ja ääreishermoston hermokivut.
Tätä kirjoittaessani on diagnoosistani kulunut 2v ja yritän edelleen löytää menetelmiä joilla pääsen eroon jäljelläolevista oireista.
Olen kiitollinen jokaisesta oireesta joka lievene tai häviää, sillä se parantaa elämänlaatuani."
The Symptoms Began .... and just kept on appearing
My Lyme Story
From Spring 1997 to late November of 2007 I had no idea what had afflicted my health:
During this period I tried to nurse the symptoms, sought medical and homeopathic help, learned to live one day at a time, became completely at peace with what I thought was my impending death, did research to discover the cause of my symptoms, learned about remedies to boost my immune system, ate greens, balanced nutritious non pesticided, non additives foods, supplemented with minerals, vitamins and herbs, kept exercising my mind, body and spirit and always held in my mind that I would recover my health any minute now, because I knew that something had suddenly afflicted me and therefore there was an answer to the cause, somewhere.
The symptoms were perplexing. One month I had a whole set of symptoms and the next month I could have a whole other set of symptoms in a different area of my body, and then another time all the symptoms would awaken and be active all at once and, as well, I seemed to have a few weeks every now and again where everything subsided and I would start thinking I was now recovering. There was never a clear picture. The symptoms involved every area of my body. It made no sense to me. I got worse, not better. Medical tests showed all was normal. MD's, having run out of tests, began to insinuate it was all in my head. At first, I suspected I was just taking a long time to recover from a head fall and surgery, then I suspected brain injury and damage, and then I suspected it was some sort of an infection.
My Life Before the Infected Bite:
Healthy, physically fit, working full time- in a fast paced job, maintained my own house, socially active, played baseball, hiked and also up mountain treks. I read, wrote, and kept accounts well. I could count on one hand the days I had stayed home for being sick during my 36 year career. My belief system re health; was that I would continue working long past 65 years, that I attracted into my life what I held in my head or dream of, including the karma's I had wanted to work through in this lifetime. I believed in taking responsibility for the maintenance and balancing of my health, as well, in a natural way. I knew the body only knows how to heal itself and always does the best it can against what invades it. I believed that movement of the joints when stiff would stimulate healing and retain mobility and that exercise of the mind, the body and the spirit was essential to my good health. And.... I avoided MD offices, ignored pains, scratches, insect bites, bumps, unless of course it was a broken cheek bone!
In the spring of 1997 I had a fall on the ice, got a concussion and required surgery for the broken cheek bone. Looking back I wonder if the trauma may have triggered the dormant Lyme Disease or if I got bitten just a few weeks later, while I was still recovering from my concussion and cheek bone surgery.( Those were foggy, scrambled times.)
I do remember when I was sitting around the staff room table, at work, noticing on the inside of my arm, just before the elbow bend, a distinctive ring of what appeared to be ring worm. I remember quickly pulling my sleeve down and making sure to wear long sleeves in the following days as I did not want to spread it to the many people I worked around. I don't remember it being itchy. I do remember after work stopping at the drug store to get a salve for the treatment of ring worm and the druggist told me something about it looking like an insect bite and suggesting I go have an MD look at it or something similar. I am sure that at that time I would never have run to an MD just for an insect bite. I can't even remember if I purchased any salve. It (the ringworm or what I now know as Erythema Migrans) must have gone away in time as I do not remember it becoming a problem that needed attention.
Where I May Have Been Bitten
The autumn before I had hiked up in the mountains, played baseball on grass, walked daily around ponds where these frequented; water fowls, birds, coyotes, fox , deer and moose . The following spring, after recovery from my surgery and concussion, went on a trip to the Snow Geese Festival in Tofeild (abundance of migrating birds there), also did a climb up one of the Goat Mountains to go caving and we had walked in tall grass meadows to get there and back. I also remember a sickly moose spending an afternoon in my back yard... It really is not that important as to specifically where the tick found me, but for sure it was in Alberta, Canada. I never did see that tick.
For a long. long time I thought all the weird symptoms stemmed from the accident of the fall on my face. The pains, the scrambled and foggy brain, numbness... all these symptoms could have been from my concussion and surgery and it really was the only thing to blame it on, at that point in time. The first dramatic symptom was getting out of bed one morning and falling to the floor as my legs had absolutely no sensation in them. There was also the sore legs, the very sore feet, half of my face and skull were numb for a long while and the brain feeling very cloudy. In the year and a half following my accident I felt unable to fully access my cognitive functions and skills, yet I kept thinking it was just a groggy brain that would soon pass. My forehead was filled with fluid, the feet and leg pains began, (was diagnosed with Plantar Fasciitis, but I don't think it was). The Restless Leg Syndrome began, my feet and legs started an unexplainable type of burning. My calf muscles would contract, sometimes up to twelve hours straight or more and would even remain after an entire nights sleep. I started having isolated ligament, a muscle or a tendon that would tighten or be extremely painful, for no apparent reason. I started falling often, something I didn't do before.
My stress level dropped and I experienced episodes of sudden cramps in my heart chest area, my sleep was poor, my concentration level poor, and more cognitive changes developed, such as poor judgment, saying things I never would have said before, making errors, poor concentration and the likes. I had my first Lyme meningitis headache that lasted three weeks and immediately following I experienced episodes as if I had suffered a stroke. Already I was falling often and the pain from the falls always lingered for an exaggerated amount of time.
There was the going through red lights, turning down one way streets going opposite way, getting in the vehicle to go somewhere and suddenly forgetting which area it was located, even though I knew where it was, getting lost...disorientated not only on the road but also in larger buildings and sometimes even in my own home. Of course I just blamed it on being tired, not concentrating, making errors...
About two years after this sudden change in my health, I now started experiencing weird entire back spasms. Had pain in my neck, back and lower back as if deep in my muscles or deep into the bones. My knee joints unexpectedly unlocked when I was walking. I had like anxiety or attention deficit disorder. For no apparent reason my face would be red. Unrelated to Lyme I also got a displaced sacrum that caused me unrelenting sharp pain for eight months and then three months following that, what I think, was a herniated disk that gave me the most deep excruciating pain I have ever lived through. It lasted many, many months. It seems to have damaged or affected the bladder, legs, and bowels that continues to affect me today. During that time I experienced my first silent pulse. I also could no longer go into a deep sleep.
In 2000 I had another concussion. The many strange eye symptoms started or increased, I had hip joint rigedness and all joints seemed to be stiff and creak. The knee and elbow joints started becoming inflamed. I had a deep ear pain, many yeast infections, canker sores, swollen gums and my nose continued to be raw inside and just would not heal. I became very weak and had episodes as if I was going to faint. My skin became white (diagnosed with anemia.) I also had sudden falling asleep in middle of day most especially after eating and not necessarily from lack of sleep.
I continued to have bad falls- one where I dislocated my shoulder, another where I cut my knees open and the one didn't heal for six months, another twisted bowels inside for over three months before it solved itself, another I cut my legs and split skin on hands...I got another concussion and more. From those falls I developed a fear of falling and if something was wet, slippery, off balance or simply walking on a flat surface and I thought I would fall, then I would have a release of adrenaline inside of me that felt as if someone injected me with a burning poison. As well, my depth perception seemed off, my cognitive functions were getting poorer, I was dopier, yet I started having most every symptom of attention deficit disorder. Mini blackouts started. After the the dislocated shoulder, both shoulders became frozen and it took months to get rid of that ugly pain.
Lots of swelling and what felt like bone pain (apparently that is inflammation.) It was in my back, arms legs, breasts. It felt like I have slivers under my skin from head to toes, most especially in the upper back. My arms were swollen. I couldn't stand anything touching my neck.
My artificial hormone therapy replacement periods were lasting three weeks at a time and with continuous clots. I started having severe shortness of breath and test said it was chronic lung disease, but I suspected it was fluid in the lungs as my legs were full of fluid and my belly felt the same. MD told me I may have congestive heart failure and like the sudden chronic lung disease there was nothing that could be done about it, yet homeopathic medicine "cured" my "chronic lung disease" in less than three weeks and the "congestive heart failure" must have also disappeared.
The sleep problems increased. It seemed that my entire digestive system was now sluggish, but the reflux continued for hours and hours after most every meal. Fats were no longer digestible. The sudden pain in the jaws and within each tooth finally drove me to the dentist for relief where I got thousands of dollars worth of work done and it did not alleviate the pain in the jaw joint, in the facial muscles, in the gums, in the teeth, up in the cheeks and nose.
About 2004, I now start having extreme pains from shoulders to tip of fingers and in the legs knees to tip of toes, in what is described as Peripheral Neuroapathy, which would become active as soon as I layed down. It was a pain that made me weep even if I was not crying. My arms had had previous episodes of becoming weak and my hands would get very clumbsy and this continued in episodes and continues to this day. I had a sebaceous cyst surgically removed twice during this time as both times it had become infected. Gout showed up with a painful lump on the side of a finger and tophiis on the knuckles which lasted for months, until I learned what it was and how to control it or was it part of the wax an waneing of Lyme?.
Inside or around the lower spine can become so inflamed that when sucking in my belly I can touch the sore spine. I have been wakened from sleep with Charlie horses in both legs, or one and also with the excruciating pain that comes suddenly on the side of the knee and needs to be held if I want to move..weird weird, weird! I had over a year of that similar sharp broken bone pain on the top of a foot and sometimes both. The spine also developed bad pain in upper back pain and x-rays show nothing. In these later years the lower spine has developed a curve in it.
I certainly cannot remember all the symptoms that appeared over the past twelve years. Some of them came and lingered for a few years and then faded or are dormant, but most of them remain active at various levels of pain and sometimes they just about all go inactive all at the same time and sometimes for weeks at a time. The most difficult was when I had more than fifty active symptoms all at one time. I just don't like remembering all those awful first five years when these were all new pains and new concerning symptoms for me and the not knowing what it was and where it was going ...and the helplessness... (Description of my symptoms)
The Plethora of Unexplained Symptoms Quickly Changed My Life
Things that had always been easy for me quite suddenly became very difficult. I made errors that I would never have done previously. I would say and do things that I would never had said previously. I would realize it only after the fact when I would remember, through my numbed brain, what I had said or done. My cognitive skills were dull, I could not seem to depend on my skills, abilities and experiences of pre-fall/concussion. It was confusing and very frustrating to me because I did not know all these symptoms were related. On top of that there was a change in administration and suddenly sick politics flowed into the workplace and the stress of it all caused me to experience repeated cramps in my chest heart area and also black suicidal thoughts. My MD suggested I that I remove myself from that unhealthy environment and I (deep inside) knew it was best for me. So, less then a year after all the symptoms started I quit my source of income, a job I had very, very much liked. I grieved for what I had lost, went through the process of change, went on a tight budget, took the opportunity to try to get my legs and feet fixed, to no avail, took career readjustment classes and attended colleges to redirect my career just in case my legs and feet would deteriorate further. My ego was embarrassed because I couldn't cope or perform as before and I was ashamed because I could see my brain was not functioning correctly....most especially when people got annoyed with me to perform like they had always known I performed.
I took many courses to redirect my career and to give myself more time to heal my legs and the foggy brain, etc. I tried to hide my handicaps. I pushed myself hard to continue my former activities in hopes that soon my health would restore itself. I had an excellent resume so I knew it would get me a job as soon as I felt better, not realizing that with the disabling symptoms, and the new ones that kept showing up, had drastically changed my resume. I would go for interviews with a big red face, speaking poorly, probably looking a bit sickly and disoeientated. I worked at only one job for about eight weeks, but discovered I couldn't stand in one spot for more than a few minutes at a time as the pain in my body just intensified with spasms. I felt defeated, scared to live without income... still, I just had to quit that job to take care of my failed health. It just caused me to face the big change in my physical abilities.
In the first two years I lost my close sister and a former foster daughter that had become like a daughter to me. Grief added to the load, so again I excused my body for having a difficult time to heal itself. Those first years I really pushed myself because I believed that it would help to kick my health back in and I wanted to maintain my former life of activeness and socialization, but in time I had to drop these in favor of increasing the quality of my life, with the remaining health I had, so I could have the energy to earn some income from home. I had discovered that I could transcend the pain when I would create programs for coaching people to increase the quality of their lives. In time. verbal communication with the participants of these programs had to stop as my speech could no longer be depended upon when I needed it. I was also sharing my house with others to supplement my income. I now had to live on a very thin budget as I did not know if my health would continue to spiral downward and how many more years it would be before I regained my health. All this was also was a big change for me.
Free from the commitments of employment, I now forced myself to go to the Medical doctors offices to find the answer for restoring my health, something I had avoided most of my life. Sore and sick as a beaten dog I would drag myself out of my house to go sit for long periods of time in a roomful of coughing people and whiny, drippy nosed children. Long past my appointment time, I would finally see the doctor(s). There I would be stifled, insulted, belittled, and accused of being hypochrodriac. Test after medical test always returned as "healthy". Yet, my body certainly had never, ever, suffered so much. Upon urging from my family I applied for CPP disability, but since all medical test proved nothing was wrong with me, therefore I did not qualify for disability, an insurance I had paid into for over thirty years, as well, for ten years, I'd also paid my 55 % share for my employees. This was a insurance that we had been promised would serve us well if we should ever be unable to work because of disability. Eventually I stopped going to MD's as it was better for my mental-emotional health.
In time, with every new series of symptoms I started asking friends and family if they had any, any idea of what it might be, but most believed the medical test results and what the MD's had said to me so they would respond with such things as "You shouldn't dwell on yourself so much." "If you were working you wouldn't think about all that." "Don't you think you are becoming obsessed with your health?" etc., etc.. I kept researching thinking I would find the answer. Finally about ten and a half years later it paid off. I'd had a year of those Lyme meningitis headaches. They had manifested some very dramatic symptoms and I just needed to find something for relief and felt I needed to do it quickly while I still had some brain left. My type of headache did not match the "medical" category of headaches. Then I found someone described my exact headache and said to seriously look at Lyme disease.
In all the years I had done research, many times it referred me to Lyme disease, but I would ignore that because I had read the Government web site and it stated there was no Lyme disease in this province, nor in Canada and gullible me had believed that. This time I investigated Lyme disease. Most web sites listed only a few symptoms. I read "lymies" stories and they kept describing very similar symptoms to what I had been experiencing. I also found a Lyme literate Md's description of Lyme disease. Bingo! This disease describe perfectly what had and was happening to me. Unfortunately the more I researched the disease I also ran into much controversy and flabbergasting things in and around this disease. As well, the prognosis for me getting quick or any treatment was next to nil. As well, at that time there was no way at all that I could have organized myself to make appointments and travel out of the country to get the treatment I required.
I proceeded getting blood tests, including two for suspected co infections. Then I contacted a Lyme literate MD. The conclusion was Lyme Disease including Bartonella Henslae, and Babesiosis. I immediately sought naturopathic help. After the first two "treatments", after about three months I started noticing the absence of some symptoms. The two biggies were the loss of the peripheral neuropathy and all the symptoms that disturbed my eyes. As I write this it has already been just about two years since my diagnosis and I continue to try to find things that will eliminate all the remaining symptoms.
With every symptom that lessens or disappears - I am grateful for the increase in the quality of my life.