Closed Thread
 
LinkBack Thread Tools Search this Thread
Old 04-03-2005, 02:39 PM #16 (permalink)
135's Avatar
135 135 is offline
New Member (Say Hi)
 
Join Date: 2005
Posts: 2
135
135 135 is offline
New Member (Say Hi)
135's Avatar
Join Date: 2005
Posts: 2
135
Default re: 33 female, witH lyme disease

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).

trish
135 is offline  
Old 04-04-2005, 11:45 AM #17 (permalink)
93's Avatar
93 93 is offline
New Member (Say Hi)
 
Join Date: 2004
Posts: 6
93 is an unknown quantity at this point
93 93 is offline
New Member (Say Hi)
93's Avatar
Join Date: 2004
Posts: 6
93 is an unknown quantity at this point
Default re: 33 female, witH lyme disease

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.
93 is offline  
Old 04-04-2005, 12:47 PM #18 (permalink)
143's Avatar
143 143 is offline
New Member
 
Join Date: 2005
Posts: 18
143
143 143 is offline
New Member
143's Avatar
Join Date: 2005
Posts: 18
143
Default re: 33 female, witH lyme disease

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
lymiecanuck
143 is offline  
Old 04-11-2005, 09:04 PM #19 (permalink)
143's Avatar
143 143 is offline
New Member
 
Join Date: 2005
Posts: 18
143
143 143 is offline
New Member
143's Avatar
Join Date: 2005
Posts: 18
143
Default re: 33 female, witH lyme disease

Hi,

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.

lymiecanuck
143 is offline  
Old 04-11-2005, 11:18 PM #20 (permalink)
64's Avatar
64 64 is offline
New Member
 
Join Date: 2004
Posts: 18
64
64 64 is offline
New Member
64's Avatar
Join Date: 2004
Posts: 18
64
Default re: 33 female, witH lyme disease

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.
64 is offline  
Old 04-12-2005, 05:29 PM #21 (permalink)
patsy136's Avatar
New Member
 
Join Date: 2005
Posts: 15
patsy136
patsy136 patsy136 is offline
New Member
patsy136's Avatar
Join Date: 2005
City: Kapuskasing
State: Ontario
Country: CA
Diagnosed: 09/1998
Posts: 15
patsy136
Default re: 33 female, witH lyme disease

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.
regards;
patsy
patsy136 is offline  
Old 06-14-2005, 04:55 PM #22 (permalink)
187's Avatar
187 187 is offline
New Member (Say Hi)
 
Join Date: 2005
Posts: 2
187
187 187 is offline
New Member (Say Hi)
187's Avatar
Join Date: 2005
Posts: 2
187
Default re: 33 female, witH lyme disease

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.
187 is offline  
Old 11-03-2005, 11:28 AM #23 (permalink)
289's Avatar
289 289 is offline
New Member
 
Join Date: 2005
Posts: 34
289
289 289 is offline
New Member
289's Avatar
Join Date: 2005
Posts: 34
289
Default re: 33 female, witH lyme disease

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?
289 is offline  
Old 11-10-2005, 10:36 AM #24 (permalink)
292's Avatar
292 292 is offline
New Member (Say Hi)
 
Join Date: 2005
Posts: 4
292
292 292 is offline
New Member (Say Hi)
292's Avatar
Join Date: 2005
Posts: 4
292
Default re: 33 female, witH lyme disease

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....
292 is offline  
Old 11-28-2005, 05:44 AM #25 (permalink)
Jeannie
Guest
 
Posts: n/a
Jeannie
Guest
Posts: n/a
Default re: 33 female, witH lyme disease

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.
 
Old 12-09-2005, 12:44 PM #26 (permalink)
273's Avatar
273 273 is offline
New Member
 
Join Date: 2005
Posts: 37
273
273 273 is offline
New Member
273's Avatar
Join Date: 2005
Posts: 37
273
Default re: 33 female, witH lyme disease

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.

Terry
273 is offline  
Old 01-12-2006, 02:29 PM #27 (permalink)
175's Avatar
175 175 is offline
New Member
 
Join Date: 2005
Posts: 46
175 is an unknown quantity at this point
175 175 is offline
New Member
175's Avatar
Join Date: 2005
Posts: 46
175 is an unknown quantity at this point
Default re: 33 female, witH lyme disease

Question to DEVAN143:

Please, do you have a contact info for Dr. Bach?
How is your mother doing since treatment started?
Upila
175 is offline  
Old 01-29-2006, 10:52 AM #28 (permalink)
289's Avatar
289 289 is offline
New Member
 
Join Date: 2005
Posts: 34
289
289 289 is offline
New Member
289's Avatar
Join Date: 2005
Posts: 34
289
Default re: 33 female, witH lyme disease

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.
289 is offline  
Old 01-29-2006, 10:56 AM #29 (permalink)
289's Avatar
289 289 is offline
New Member
 
Join Date: 2005
Posts: 34
289
289 289 is offline
New Member
289's Avatar
Join Date: 2005
Posts: 34
289
Default re: 33 female, witH lyme disease

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.
289 is offline  
Old 01-29-2006, 06:07 PM #30 (permalink)
155's Avatar
155 155 is offline
New Member
 
Join Date: 2005
Posts: 32
155
155 155 is offline
New Member
155's Avatar
Join Date: 2005
Posts: 32
155
Default re: 33 female, witH lyme disease

I hope that your aunt responds well to the treatments kneecey.
Dana
155 is offline  
Closed Thread

Tags
advice, als, back, canada, canadians, cure, diagnosis, drugs, female, hope, improvement, information, lyme, lyme disease, power, problem, research, scared, test, testing, tests, treatment, wanted


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Lyme disease/als emrah20371 About Lyme Disease 5 01-18-2013 04:44 PM
Documentary on Lyme disease jerry13288 About Lyme Disease 4 07-11-2011 04:28 PM
Has any one else had lyme disease followed by ALS? beth12834 About Lyme Disease 13 03-01-2011 11:19 PM
lyme disease precipitates other disease beth12834 About Lyme Disease 13 03-01-2011 11:19 PM
Anyone have ALS and Lyme disease? m12414 Living with Lyme Disease 3 10-31-2010 10:15 PM
Could this by Lyme disease? m12414 Do I Have Lyme Disease? 8 10-29-2010 10:45 PM
Could Lyme disease trigger ALS? helen12082 About Lyme Disease 1 08-29-2010 11:34 AM
Treated for Lyme disease beverly10065 Living with Lyme Disease 20 04-06-2010 03:02 PM
DX'ed with Lyme Disease, still fear ALS 5956 About Lyme Disease 15 08-13-2008 08:13 AM
Lyme Disease 206 About Lyme Disease 10 07-28-2005 03:18 PM

 

All times are GMT -5. The time now is 07:46 PM.

About Us

"Our forum consists of individuals working together to provide Lyme help, exchange information, provide moral support, share information and helpful tips. Together we learn to cope with Lyme, make friends, and help one another live healthier and happier lives in spite of Lyme disease."

 

Copyright © 2016