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Old 03-07-2005, 02:23 PM   #1 (permalink)
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Hi eveyone,

i tHougHt long and Hard before deciding to post, but given tHe information out tHere i tHougHt tHat i sHould.

i am 33 female, witH lyme disease. i Have been undiagnossed for a long time, and am now on treatment. no one would listen, no one wanted to test me, and wHen i was tested it was negative seven times!

tHe last tHing i want to do Here is give anyone false Hope.
lyme disease is denied in canada. tHey don't want to believe we Have a problem witH it Here, and docs are misinformed and are non-believers of lyme in general.

lyme disease is a clincial diagnosis, tHe blood tests can just Help back it up. many witH lyme Have been misdiagnosised witH als and turn out to actually Have lyme and see improvement witH treatment. only one person i know of in canada Has tested positive witH tHe canadian lyme disease test. majority seem to test negative and end up testing in tHe states witH a more accurate lab. tHe sicker you are witH lyme, it seems tHe bigger tHe cHance you Have to test negative as tHe bacteria are deeper in tHe tissues and are less likely to be found in a blood sample.

if you searcH tHe lyme boards-you will see some wHo Have been misdiagnosed witH als and Have lyme. not everyone diagnosed witH als get better witH treatment, but many Have.

my figHt Has been long and Hard to recognition tHat i Have lyme. if i would Have continued to deteriorate, god knows wHat kind of diagnosed i would Have been given, but know it would Have been sometHing tHey'd say "cause unknown, cure out of tHe question" and been given toxic drugs etc. not even my Husband could beleive i Had lyme wHen tHe doctors kept saying i didn't cause my test was negative.

tHis is a tragic situation in canada. it is almost like tHey are scared to start admitting it is a real problem Here, wHen tHe ones responsible for addressing tHis situation and protecting us canadians are not stepping up to tHe plate and doing tHeir job, more concerned witH How tHis would affect our tourist industry etc. tHere are many tHeories wHy it is ignored. it is Happening all over tHe world.

many Have to go to states for treatment. even tHose wHo Have tested positive Have been denied treatment over and over.

lyme is tHe new great imitator and tHeir are co-infections tHat come witH it, and tHe testing for tHose are even less accurate.

if anyone tHinks tHey may Have lyme, or want to learn about it, my advice is researcH, researcH, researcH! knowledge is power witH lyme disease as it is very complex and so is trying to get someone to listen and get Help, it is not easy by any means.

again, i don't want to give false Hope, it is just if lyme is to be eliminated as tHe cause of als tHen it needs to be done properly.

take care and good luck to you all.

lymiecanuck

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Old 03-07-2005, 06:26 PM   #2 (permalink)
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Info for those interested can be found at...http://www.cdc.gov/ncidod/dvbid/lyme

cdc lyme disease

lyme disease was named in 1977 when arthritis was observed in a cluster of children in and around lyme, connecticut.
borrelia burgdorferi are helical shaped bacteria about 10-25m long.
other clinical symptoms and environmental conditions suggested that this was an Infectious disease probably transmitted by an arthropod.

further investigation revealed that lyme disease is caused by the bacterium, borrelia burgdorferi. these bacteria are transmitted to humans by the bite of Infected deer ticks and caused more than 23,000 Infections in the united states in 2002.

vector: black-legged ticks (ixodes scapularis) are responsible for transmitting lyme disease bacteria to humans in the northeastern and north-central united states. on the pacific coast, the bacteria are transmitted to humans by the western black-legged tick (ixodes pacificus). ixodes ticks are much smaller than common dog and cattle ticks. in their larval and nymphal stages, they are no bigger than a pinhead. ticks feed by inserting their mouths into the skin of a host and slowly take in blood. ixodes ticks are most likely to transmit Infection after feeding for two or more days.

risk: in the united states, lyme disease is mostly localized to states in the northeastern, mid-atlantic, and upper north-central regions, and to several counties in northwestern california. in 2002, 23,763 cases of lyme disease were reported to the centers for disease control and prevention (cdc) (mmwr 52(31):741-750). ninety-five percent of these cases were from the states of connecticut, delaware, rhode island, maine, maryland, massachusetts, minnesota, new jersey, new hampshire, new york, pennsylvania, and wisconsin.

individuals who live or work in residential areas surrounded by tick-Infested woods or overgrown brush are at risk of getting lyme disease. persons who work or play in their yard, participate in recreational activities away from home such as hiking, camping, fishing and hunting, or engage in outdoor occupations, such as landscaping, brush clearing, forestry, and wildlife and parks management in endemic areas may also be at risk of getting lyme disease.

prevention and treatment: prevention measures can be effective in reducing your exposure to Infected ticks, and most people can be successfully treated with antibiotic therapy when diagnosed in the early stages of lyme disease.

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Old 03-07-2005, 07:10 PM   #3 (permalink)
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i find this extremely scary. i went on lyme disease in canada site, and it really makes one think. has anyone else come across this while going through the diagnosis aspect? did this even come up? hard to believe.
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Old 03-07-2005, 07:41 PM   #4 (permalink)
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You're welcome.

i just know if i was diagnosed with als i would want to know about lyme micmicking it, as a possible cause.

i live in ontario too. unfortuantely it most likely didn't come up for many as they dont' beleive it to be a problem so why test? the health department where i live doent' even have lyme listed! i told my first neuro that i thought i had lyme and she didn't even test for it, told me it was stress, blah blah, like they all do. until something starts showing up in tests and then tours of speicalists offices until someone decides to give a diagnosed.

the story you saw on the site is the same thing that is happening over and over to most people who contract lyme in this country, just she is a severe case that actually went public.

take care
lymiecanuck
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Old 03-07-2005, 09:39 PM   #5 (permalink)
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i am looking forward to some of the replies from the pals once they read this.
of course the list of symptoms of the lyme disease can be attributed to many disorders as als can be. i found some of the symptoms interesting. the person i know with als mentioned only a few of his symptoms to me, but over the last two years mentioned memory loss, especially short term, couldn't remember his own phone number this summer, going to the wrong place, mini black outs, driving then finding he was going in the wrong direction and had no idea how he got there, (that was three years ago), mood swings i saw without being on medication, difficulty concentrating, i noticed a runny nose alot with him, he always had tissues with him, over emotional reactions like doctor jekyl and mr. hyde, and a few other aspects of the list that i always wondered about in my mind that didn't seem to fit the als profile.
something to think about for sure.
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Old 03-08-2005, 12:58 PM   #6 (permalink)
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When at canadian neurological symposium 2 years ago this june. dr strong, who spoke before me. had presented evidence that up to 70 percent of pals show signs of cognitive dysfunction. just sort of muddies the water again huh.

chris
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Old 03-08-2005, 01:05 PM   #7 (permalink)
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i agree that anything is possible, but you can't deny what some of the people are saying. take a look at their forum, it is very scary. i am certainly not saying that those diagnosed with als or any other disease are misdiagnosed, but i believe that one needs to force the hands of the medical community and push.
funny, after almost a month of not hearing from my friend, i posed the site to him and he replied. shocked the crap out of me. he was tested years ago for lyme disease and the results were negative. i have strongly suggested he revisit this aspect. what does he have to loose...
now chris, as to cognative disfunction...well that certainly explains his behavior....(that is suppose to be funny)..gotta go for now.
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Old 03-08-2005, 01:20 PM   #8 (permalink)
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Hi,

one of the ways many docs who treat lyme assess you if you have a negative test is by clincial diagnosed, and the herxheimer reaction.

some like myself was so sick last year, i didn't get worse in many ways only better and then worse later. when the bacteria are dying, symptoms flare, tHis can last days and has been known to last weeks when people have a High bacterial load.

many end up tHinking or being told they are allergic to antibiotics because of tHis if they don't know they have lyme and that tHis is dieoff.

tHis happened to me years ago, on minocycline for acne, if i had of known then what i know now, i would have continued with it and wouldn't be where i am today.

lyme is complex, for years i just had muscle pain, anxiety, depression like symtpoms, fatique etc.

after my son and c-section tHings must have got stirred up again and over the next 2 years new problems arouse until i went down with an avalanche of symptoms in sept 2003, haven't worked since and thought i would die, but didn't.

important note: lyme can show as a bulleyes rash. not everyone gets tHis or knows if they have been bit by a tick. i have had the bulleyes rash a few times but tHis is not the norm. there are also other skin manisfestations of lyme as rashes that are not bulleyes so even more confusing. i was always red in the face, like i drank everyday. very sensitive skin and developed mcs - wHich is common as well - multiple chemical senstivities. for some tHis is a early symptom, and may be all that they really notice at first.

unfortuanatly neurologists seem to be non-beleivers of lyme even with postiive test in front of them and from all i have learned are likely to say it is a false positive. false positives dont' happen very often, but false negatives seem to be the norm.

take care
lymiecanuck
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Old 03-08-2005, 01:30 PM   #9 (permalink)
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Very happy your friend called you theresa. this is why i did this. i am quite sick, and dont' need stress, i dont' need to be here and do this and i see no one else has. i was quite surprised by this when i searched the site as it is mentioned many times on a ms site i visited. so i am glad if i help even one person, and educate many others.

it just pains me to know many are out there and have no idea about lyme and what it can do.

my son has lyme disease as well, i just have to prove it which i am in the process of doing now. i beleive he has congential lyme, seems for the most part healthy, but i know better as i know this disease well. it is an insidious horrible disease, and like to play jokes on you and play with your mind, make you think you have eVery disease in the book. anything is possible with lyme disease.

take care
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Old 03-08-2005, 02:57 PM   #10 (permalink)
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i am at work but i will post in more detail later from home.
question, you mentioned chemical sensitivies, like what for example? could nicotine be included in this? he has developed an allergic reaction, sometimes it manifests itself more strongly then other times? would this be considered an example?
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Old 03-08-2005, 03:21 PM   #11 (permalink)
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Hi,

mcs can involve anytHing like perfune, nicotine, chemicals like paint, dish soap, etc. i even have trouble with some natural products and a big problem with mold/mildew when i was very sick. it bothers me less now that i am getting slowly better. lyme disease often makes a person seem as if they are becoming allergic to everytHing. many are diagnosed as having allergies, when it is the body's reaction the the bacteria itself.

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Old 03-10-2005, 11:26 AM   #12 (permalink)
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Thanks a lot, there is so much information out there, it is difficult to get through it all. i will take a look, when i am not at work. then i will forward it on.
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Old 03-10-2005, 08:51 PM   #13 (permalink)
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My lyMe disease and coinfections story.

i aM registered nurse, now retired due to the a.l.s.. My work experience was in neurosurgery i.c.u., urology, e.r., hoMe care/c.c.a.c., public health, did soMe teaching too. they used to call Me the "little french nurse with the fire up her butt" in toronto. but the fire up and went in 1995. in 1995, while gardening in My backyard i got bit and a big bull's eye rash resulted! i worked public health then & since this area was deeMed non-edeMMic for lyMe never thought of it Much. i had the health inspector check My rash and said "well, since you got it in this area it can't be a tick bite. it Must be a spider bite. " and since i hardly knew anything about tick bites i never thought about it again ! 4 weeks later i was hospitalized with a high grade uncontrollable fevers, nausea, voMiting, photophobia, rigors, severe headaches and stiff neck. the nuMerous tests caMe back showing an infectious process but we didn't find anything with the blood cultures. i was treated with broad spectruM antibiotics intravenously for 5 days.

after that episode in 1995 My energy level started to peter out and right doMinant hand started twitching and craMping. we thought then that it was carpal tunnel and had no eMg! i had surgery for it and My hand got worse in spring of 1998. started falling that year too, i rationalised it, as Me being "a clutz". i had always been a clutz! well i had fallen Many tiMes in those early years and broke My left ankle in early March 98. i was hyperreflexive, plus My gait was wide and stiff.

in june of 1998 started the neurological work up and e.M.g.'s, and the final diagnosis of aMyotrophic lateral sclerosis on septeMber 1st, 1998.

it wasn't until late 1999 that i would coMe across the story of pat pepper and Made the connection My bull's eye rash of 1995 and My als. after that, i was assessed by dr burrascano and tested for everything!

since that tiMe, 2001, i have tested positive by lyMe urine antigen test (luat) on 3 separate urine saMples and 3 western blots! even though i've had Many negative western blot tests in the past iM now positive, through the igenex laboratory in california, u.s.a. and bowen labs; this all out of our pockets as no neurologist or infectious diseases specialist would recognize that My als could have been set off by My lyMe. i have also tested positive co-infections: MycoplasMa ferMentins, babesia and ehrllichia. this of course done under the recoMMendations and guidance of dr burrascano, a top notch lyMe disease specialist in ny, u.s.a..

i was treated for about 2 and 1/2 years for all of the above infections but the als still progresses. i have been successfully treated for the lyMe, MycoplasMa ferMentins and ehrllichia, for the tiMe being! that was 2003. i continued to be treated for babesia for another year and gave up in the spring of 2004, and never retested to see if i i still had it. i will soon get retested for the all of the above stated infections !

now i have stopped all of the antibiotics because i wanted to give My body a break. i have started doing rife Machine treatMents since last spring and don't know if they are helping or not. but despite all of the different treatMents the als continues to progress! so for Me, so far, these lyMe treatMents have nothing for My als.

patricia (patsy) seguin-treMblay
kapuskasing, ontario
canada
p.a.l.s. since 1998
p.a.l.s. = person with aMyotrophic lateral sclerosis
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Old 03-11-2005, 10:40 AM   #14 (permalink)
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Hi, patsy.

sorry to hear it hasn't stopped the als. did it slow it down at all? did you notice any improvements in any symptoms?

i know of another person under dr. burrascano's treatment who is not seeing major improvements due to being untreated for so long.

myslef i have seen major improvements but tHis could change, i had to see improvements or i wouldn't be here right now. i don't know if i will beat tHis, but feel i am definitly buying myself some time.

no one would diagnosed me with anytHing cause lyme was in my charts. i was told spiders bite too, but my bite was either a recurrance or a new bite, as i already had lyme and didn't know it when it showed up.

stories like yours is why early treatment of lyme is so important. having been though what you have, you realise the situation in canada is very bad for people who contract lyme.

do you tHink lyme triggered the als, and do you know of others with als who benefited from lyme treatment?

for others., dr. burranscano, is considered the top lyme doc and actually writes the treatment guidelines for lyme and co-infections and if i am not mistaken has lyme Himself. some with late stage, do not get better with treatment and then go the alternative route with rife etc. again early treatment very important and it also depends on immune system etc, as you need it to help you, not just abx.

thanks for sharing your story.

does anyone else have als/lyme story to share?

lymiecanuck
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Old 03-11-2005, 02:14 PM   #15 (permalink)
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Hi trisHa,

tHanks, tHat's exactly tHe article i was referrring too. i Had searcHed tHe site and it didn't come up for me, sometimes it does tHat.

glad your brotHer wants to get tested now. canadian tests are very unrealiable and don't be disappointed if it comes back negative.

i Have Had my metals tested, was never treated as i Have Heard from a reputable source tHat if your nutrients are low, you can not detox metals properly and you need to work on tHat first. my nutrient levels were low as tHese were tested for me as well. i plan to consider cHelation in tHe future if i can afford it, but for now Have to get my infection load down. i know someone wHo was told tHeir problem was metals, as i was and not lyme so tHey spent mucH money going tHis route and didn't Have improvements. my aluminum was extremely HigH, followed by copper and tHen lead.

of all tHe different supplements etc i Have tried tHe improvements for me are seen witH abx(antibiotics), liver support, magnesium supplements, and stuff to improve tHe gi tract. if you go to an environmental doc tHey can test it for about 100 dollars. i did mine by 24 urine.

i wisH we Had a doctor Here wHo would do like tHis doctor in tHe article, as tHis would Help tHe situation so mucH.

good luck
lymiecanuck

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