View Full Version : 33 female, with lyme disease

03-30-2005, 02:23 PM
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.


03-30-2005, 06:26 PM
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.

03-30-2005, 07:10 PM
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.

03-30-2005, 07:41 PM
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

03-30-2005, 09:39 PM
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.

03-31-2005, 12:58 PM
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.


03-31-2005, 01:05 PM
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.

03-31-2005, 01:20 PM

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

03-31-2005, 01:30 PM
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

03-31-2005, 02:57 PM
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?

03-31-2005, 03:21 PM

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.


04-02-2005, 11:26 AM
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.

04-02-2005, 08:51 PM
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
p.a.l.s. since 1998
p.a.l.s. = person with aMyotrophic lateral sclerosis

04-03-2005, 10:40 AM
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?


04-03-2005, 02:14 PM
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

04-03-2005, 02:39 PM
Thanks again. you are right, before chelation or any type of detox, the body has to be strong enough to handle it as it is hard on the liver and kidneys. my brother's doctor has been working on this for a while, and only approved the detox once all his other systems had been checked. he had the tests done by a homeopathic doctor and is already on the supplements and stuff. the treatment is expensive but if it can help him then it is worth it.

good luck with your continued treatments and recovery and Thank you for taking the time to join in our community as well. i'll keep you in my prayers. just so you know, i plan on fighting the government to have these kinds of tests and treatments paid for by medicare - provincial or federal. if anyone else has something to contribute, let me know and i'll add it to my research. i'm in the capital so it's fairly easy (relatively speaking) to meet with mps (mine and others if needed).


04-04-2005, 11:45 AM
In the news today...

"vIctIms show support for lyme dIsease bIll

one by one, they nervously approached the mIcrophone to lIst theIr symptoms: extreme fatIgue, aches, blurred vIsIon, balance problems, dIffIculty speakIng.

then the mIsdIagnoses: fIbromyalgIa, depressIon, chronIc fatIgue syndrome, lou gehrIg's dIsease.

but the more than two dozen people who testIfIed before a state senate commIttee thursday all fInally found the cause of theIr troubles was lyme dIsease, a troublIng Illness spread by deer tIcks.

they were among more than 100 patIents and relatIves who packed a hearIng room to show theIr support for a bIll they say would Improve treatment of lyme dIsease In the state.

"patIents are too sIck to fIght wIth theIr doctors for treatment," saId lucy barnes, a lyme dIsease patIent and actIvIst from queenstown.

the senate educatIon, health and envIronmental affaIrs commIttee Is consIderIng a bIll that would requIre Insurance companIes to pay for long-term antIbIotIc treatment for lyme dIsease. some only pay for a few weeks of medIcatIon, even though some patIents say they need months or years of antIbIotIcs.

the bIll, sb596, also would prevent the board of physIcIans from dIscIplInIng a doctor for prescrIbIng long-term drugs. bIll advocates say some doctors are scared to try long-term therapy for patIents for fear of losIng theIr lIcense.

"It Is tIme the state begIns to recognIze the Impact of thIs horrIble dIsease," saId sen. rIchard f. colburn, r-dorchester, the lead sponsor of the bIll.

Insurance Industry reps were sIgned up to testIfy but were no-shows.

whIle most of the bIll supporters who turned out for the hearIng were from the eastern shore, lyme dIsease Is a concern In anne arundel county as well.

anne arundel's sprawlIng suburban neIghborhoods provIde Ideal habItat for deer, and In turn, the deer tIck that carrIes the bacterIa that causes lyme dIsease. accordIng to the county health department, there were 77 confIrmed cases of lyme dIsease In 2003, and 66 cases In 2002. statIstIcs from 2004 weren't avaIlable.

by some estImates, there are 10 undIagnosed cases for every confIrmed case.

patIents saId they have a hard tIme gettIng an accurate dIagnosIs, besIdes havIng problems gettIng treated and covered by Insurance. lyme dIsease tests often show false negatIves, and doctors are reluctant to treat lyme dIsease wIthout a posItIve test In hand, they saId.

"It Is very, very hard to fIgure out whether people have lyme dIsease or not," saId sen. james brochIn, d-baltImore county, who saId he stIll has lIngerIng effects of the lyme dIsease he contracted 17 years ago.

and whIle commIttee members seemed moved by the testImony and strong turnout, some balked at the Idea of tellIng the board of physIcIans how to polIce doctors for one specIfIc Illness.

"we're not In the busIness of dIrectIng protocol for doctors," saId sen. roy p. dyson, r-st. mary's.

c. IrvIng pInder jr., dIrector of the board of physIcIans, saId he couldn't fInd a sIngle case where a doctor was InvestIgated for overprescrIbIng antIbIotIcs for lyme dIsease.

"It sounds lIke what we need Is educatIon and traInIng," he saId.

the commIttee chaIrman, sen. paula c. hollInger, d-baltImore county, saId she wants to fInd a better way to help lyme dIsease patIents.

"we'll try and attack It through legIslatIon, but I'm not sure It wIll be exactly thIs bIll," she saId.

the house of delegates Is consIderIng a separate proposal, hb1323, whIch would establIsh a state lyme dIsease task force.

04-04-2005, 12:47 PM
Thanks trisha and mike.

glad to see people are taking an interest in lyme disease.

there have been a few bills that have been squashed, people trying to protect the doctors who have enough guts to treat lyme. there may have been one that passed i have forgotten now.

take care

04-11-2005, 09:04 PM

by shear luck i guess, i got to talk on the show by calling in. it was great what i heard of it, and jim wilson and dr. m did a great job. i am having problems with my media players so haven't heard the whole tHing yet.

go to audio vault on the above website and and put todays date, with 11 am time slot and it will be arcHived for a month.


04-11-2005, 11:18 PM
Hi lyme, i saw tHe posting earlier today,but i didn't expect my boss would be too impressed if i logged in at work, but tHank you very mucH for tHe information to repeat tHe live feed. i Have it on now, trying to pick up tHe tid bits wHile tHe kids complain tHe speakers are too loud..
i doubt tHat tHis is applicable to my friend based on wHat i am Hearing, tHe symptoms don't seem to be as extreme, and not enougH of tHem to coordinate.
but it is scary. i wisH i Had tHe cHance to pHone it today anyway.

04-12-2005, 05:29 PM
Hi lymiecanuck;
sorry for tHe late reply to your questions.
if tHe antibiotics slowed my als, i don't know because i Have been diagnosed witH a slow onset sporadic als. so was it tHe antibiotics or tHe type als i Have? could i Have Had a more slower als progression off tHe antibiotics? i will never know for sure. no improvement on tHe antibiotics!
i do believe tHat my als was triggered by tHe lyme and coinfections. so unless i get rid of tHe infectious processes tHe stem cells treatments will be useless, in my opinion. tHat and my genetic makeup is wHat i believe caused my als!
dr burrascanno did Have lyme disease and treat many als/lyme cases, so He would know about tHe success stories.
tHere Have been some success stories witH als under going lyme treatments but unfortunately not many, on tHe als/lyme yaHoo newsgroup.
all tHat i know is tHat witH every HerxHeimer reactions, wHicH were very severe, i would deteriorate furtHer witH my als. witH tHese Herx reactions, i would feel like i was dying, it was tHat bad! and i am a nurse wHo was prepared witH all tHe treatment plans for tHese reactions but it was not enougH to make tHe treatment bearable. life sucks enougH witH tHe als tHat after 3-4 years of Herx reactions, i Have Had enougH and cHose tHe rife treatments instead witH a better quality of life!
i Have just listened to tHe radio broadcast about tHe lyme disease disease in canada. tHank you very mucH for sHaring tHe information witH us! it was rigHt on tHe nose.

06-14-2005, 04:55 PM
I am interested in the connection between ALS and Lyme because my mother in law had improperly treated Lyme disease. Although it took too long she was diagnosed after 6 months and treated, although not aggressively enough. At that time she was given 3 weeks of oral doxycycline. Her symptoms were rheumatological as well as cognitive, but over the next 2 years primarily were neurological. She was diagnosed with everything from dementia to strokes but had also progressive inability to swallow, speak and walk, and was finally diagnosed with ALS by a neurologist, having done all the muscle tests and other tests for ALS. Although I had taken her to two infectious disease specialists earlier requesting Lyme follow up, it was the neurologist who finally did a spinal tap, and found the "highest lyme titer" he had ever seen in cerebro spinal fluid. Sadly, her disease had progressed so far and she was unresponsive to IV antibiotic treatment. We live in the heart of Lyme country and it is sad to me that not more is known.

11-03-2005, 12:28 PM
my aunt has been diagnosed w/als. i think it just seems a little strange that she had been bitten by a tick a month before she started to have slurred speech.

shortly after she started to have the muscle deterioration. she is now in a wheelchair, uses a breathing machine, and has a feeding tube inserted in her stomach. this is horrible. she cannot be understood by the general public anymore & needs help with everything now.

i have read others talk about misdiag. i truley believe this may be the case with my aunt. anyone else think the same?

if so, how do we go about getting them to treat for lymes?

11-10-2005, 11:36 AM
kneecey53215 - my mother has seen a ton of doctors over the past year and a half. Neurologists at Columbia Presbyterian Medical Center in NYC have diagnosed her with ALS. They are one of the best neurological depts in the country. Everyone of them looked at me like I had 3 heads whenever I mentioned "could it be Lyme?" (I asked after researching ALS on the internet). I took her to a lyme specialist in NJ - she tested negative and the RECEPTIONIST called us after FOUR WEEKS to tell us. I had been told about Dr. Gregory Bach near Philadelphia months before. I finally made the appt for my Mom. We went yesterday. He believes that she has Lyme and has already started treating her. We ran into a family friend who also had an appt at the same time. He was diagnosed with ALS also. He is much further along....can barely talk and uses a walker and walks VERY SLOWLY. He has been seeing Dr. Bach for 5 weeks and has improved. On his previous visit he was in a wheelchair and could not get up out of it.

Time will tell if my Mother will improve with the antibiotics - she just started yesterday.

I don't know where your Aunt is located, but I would take her to see Dr. Bach in Colmar, PA. People come to see him from all over the world. There is nothing they can do for someone with ALS, so it is worth it to test for Lyme - especially since your Aunt was bitten by a tick. Go see Dr. BACH! Dr. Bach's wife has Lyme...she lost her hearing/sight and is now fine!

Good luck....

11-28-2005, 06:44 AM
Hi all. :)

Can a emg detect Lyme's ?

I have searched the net, I cant seem to find anything on abnormal emg & Lyme's.

In als a EMG test detects if there is a problem with the lower motor neurons, resulting in abnormal emg in pals.

If a ALS diagnosis is given, and every other disease/illness has been ruled out (apart from Lyme's) along with abnormal emg, I cant see how Lyme's can be wrongly diagnosed as als, on the bases I can not find info re; emg.

Thanks in advance.

12-09-2005, 01:44 PM
I start rocephin IV treatments today. If you know of ALS/Lyme pateints who have beaten this... please let me know. I'd like to email or talk to some.


01-12-2006, 03:29 PM
Question to DEVAN143:

Please, do you have a contact info for Dr. Bach?
How is your mother doing since treatment started?

01-29-2006, 11:52 AM
my aunt now has a clear diagnosis of lyme disease. igenex actually found the dead spirochetes in her urine samples after the antibiotic challenge. she is being reported to the CDC and just had her pic line put in yesterday. she had her first dose of rocephin & started oral antibiotics as well. we will see what happens from here. im just glad she is receiving treatment.

01-29-2006, 11:56 AM
where is your family from? we are from wisconsin. i am also looking for others in wisconsin who were diagnosed first w/als only to find they have lyme later.

01-29-2006, 07:07 PM
I hope that your aunt responds well to the treatments kneecey.

03-28-2006, 07:59 PM
Hi, I am new to this forum and would like someone's opinion on what is wrong with me since doctor's can't figure it out. 1st symptoms were very stiff neck and lower right back pain. When bending over I got very lightheaded. Soon after my elbows got really sore and knees would buckle every so often. I started getting night sweats, frequent urination, and stubbing my right foot into the ground. Both feet became cold and tingly a lot. This all happened over 2 years ago. I had an episode of a year ago where I started sweating while at rest and burning in my lower spine. I get eye pain off and on, and in the last 3 months have some bad muscle wasting in both arms and legs, with lots of twitching and cramping. Tongue has a white-yellow coating on it. The last neurologist I saw said I don't have any symptoms of a neurological disease even though he didn't even examine me. I have been tested for just about everything including lyme disease and everything is negative. The only abnormalities I have is a slight rise in my IGM and borderline low red blood cells. My scariest symptom has been lots of tingling in the back of my head especially when I urinate. When I tell doctor's that they look at me like I am crazy. All the web surfing I have done I cannot find any disease that has head tingling as a symptom. I am sure I am missing some symptoms but was hoping someone could help me with some information. thanks, whitey