canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi All,
I realize now that since I changed my username, that the few who might remember me from before wouldn't recognize me.
My previous username was musicnorth; I changed it because there was a doc in Canada who was working with Lyme patients who read these boards, and I was unable to maintain my anonymity, and therefore not be able to post freely about real issues we were facing in Canada.
At this point, I have completely distanced myself from his "care", and I am less concerned about anonymity. On the Canadian board, the users generally recognize me because I have been doing a lot of PM's
Anyway, thought I'd say "hi", and also mention that I'm not all that well - debilitating "attacks" or seizures? seizure-like events. I have major light issues which prevent me from consistently being on these boards (computer screens), so I apologize for being "here and there" over the past few months and not introducing myself sooner.
The LLMD situation in Canada is very dim. There is really only one, and he's 73, in BC (I'm in Toronto) and just about every Lyme patient in Canada consults with him at one point or other.
I wasted much health and money relying on my my brains and our "universal" healthcare - bringing in the ILADS guidelines to a local doc who didn't believe in ILADS, but thought he could treat Lyme.
Needless to say, 2 1/2 years after first seeing him, I am now completely disabled by these neurological attacks, and am seeing Dr. S. in SF and what a difference!
In one appt we got more accomplished than in the 1 1/2 years I saw the Toronto ID doc.
Your healthcare system is indeed flawed, but at least you can access as good healthcare as can be found because of the free enterprise nature of it.
Here, it's like a classroom that teaches to the lowest common denominator. We all pay in for "average" healthcare. Who wants average when it comes to something as serious as health? Yikes.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
| IP: Logged |
posted
HI neighbor!! I'm from Toronto Ontario and sooo can relate to you. It is impossible getting any help here. I saw dr B in Toronto, the supposed LLMD......... LOL he told me I was rolling my eyes at him when I had Bell's Palsy.
MY CDC + Western Blots were false positive according to DR B And My positive urine PCR from MDL/Igeenx was also a false positive. Unbelievable. He said I am nothing compared to his patient that can only move one finger, and that he would treat me only if I would be unable to move ALL fingers. He also said amoxicillin is the way to go .
No help in Ontario, only doc is in BC. real far! Many think our public healthcare system is good b/c its free, but really succumbing to it is like health suicide.
Then you try and research and help yourself, but there's no way "being the doc". I too have wasted 2.8 years so far and have deteriorated/
Its best to travel to get help, but then again you need the finances --to see the LLMD regularly. I am sorry you are not doing well. I am doing awful mysefl. I fell real ill this past summer and ART showed I have rocky fever and I also have the rash. I feel like we live in Bangladesh as I got NO help, Zero, left to rot and die here in our medical system. I have the typical rocky rash and yet still can't even get a doc to test me for it, not to mention that tesing here is flawed. I ve been trying to see some Dr R here but so far these has been no mention of any appointment and it is greatly disapointing, but nothing new. I wish you all the best.
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Citrus,
Are you talking about Dr. R. in Ottawa? I have an appt. to see him May 1st.
I don't want to go the coffee enema route up north in Mississauga, thanx
Not that I have anything specifically against people having them, it's just I feel I would "know" if I needed one...
Did you hear that B. is no longer treating Lyme patients? That's a relief. I think of all the money I would have saved if I'd never darkened his door and gone straight to a US LLMD. He finally coughed up my chart after repeated requests for the past 1 1/2 years. I had to go to his office. I thought to myself, "That's my personal financial debt that paid for that new fancy photocopier - and what about what must be their big house?" Boy would I like him to be responsible for the debt I incurred wasting my time trusting in his patronizing attitude.
I would have spent the $15 000 in health care in the US, and be well by now...instead I'm in debt much more than that as a direct result of his "treatment" that was available as part of our "universal health care". What a mistake! I love my work - I could have been working by now, have paid off the $15 000, and be on my way. Here I am instead, burning off all my bad kamma...oh am I going to be pure!!!
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
| IP: Logged |
How are you doing - I sent an email but haven't heard from you.
Life got extremely crazy for me in alot of ways so I was off the forums and off the computer for a while.
Life is looking up again - wellllll I'm still standing that is - health is getting back on track (I was sick again myself).
Still haven't heard if I'm going to lose my health insurance or not yet (I hope not).
I quit my job - too much stress (which made me ill) in alot of ways.
I got my Realtor Lic. (not sure how I managed that one) I call it a gift from GOD, because I can not even tell you now what was on the test - if that makes sense.
Please email if you can.
Posts: 374 | From NJ | Registered: Aug 2006
| IP: Logged |
quote:Originally posted by canbravelyme: Did you hear that B. is no longer treating Lyme patients? That's a relief.
THIS IS FALSE INFORMATION!
I was in Dr. B's office yesterday and we had a discussion at length about this.
Dr. B is still treating Lyme patients, including my daughter.
Dr. B continues to stick by us and support us even though my daughter is not responding much to treatment and we do not have a postitive Igenex to back him up.
Dr. B has decided to be more selective about the patients he agrees to treat.
Dr. B will not diagnose you with a vega machine, cure you with rife or treat you with coffee enemas.
Dr. B treats with science and has cured many patients who had Lyme.
Dr. B does have questions about ILADS but this does not make him our enemy. In fact, he is referring patients to 3 ILADS doctors and is communicating with Dr. H about his treatment questions.
Unfortunately, Dr. B has patients who come into his office with their own self diagnosis and their treatment plans all worked out.
Patients demand scientifically unproven treatment and then complain if he does not prescribe what they are demanding. Then they feel they have a right to trash him.
One patient even demanded (actually it was more like harassing the office at length until he relented) a certain treatment and then when she found out it was expensive, she wanted him to falsify documents so she could get it at a reduced cost. He refused and he is now responsible for her financial ruin. Go figure.
Because my daughter is not responding well to treatment, Dr. B has encouraged us to seek other opinions from LLMDs and he will refer us to anyone we would like to see.
So please, before posting information like a doctor dropping his Lyme patients, please confirm the facts!
This information caused my family much distress as it was posted here and on Canlyme just days before our appointment and we became panicked about what we would do without Dr. B.
-------------------- The Canadian Lyme Disease Foundation www.canlyme.com Posts: 128 | From Canada | Registered: Sep 2006
| IP: Logged |
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
If you're interested, more about this fascinating subject can be found here:
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Wow- interesting!!! Yup, there are many doctors who do not fit neatly into IDSA or ILADS boxes!!! They can be very lone wolvish and very good many of them!!!
I am glad for every one of them, doctors who treat Lyme, except staunch IDSAers!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
Vanilla
Unregistered
posted
I think what we have to keep in mind here is no doctor has all the answers even here in the US of A. It is a strange disease not to mention all the co-infections. The doctors and their protocols all differ which is probably a good thing. I am happy to find one that approves of alternative medicine. We are not all going to like the same doctor and that could be a good thing too.
IP: Logged |
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi Vanilla,
The one we're referring to does not believe in alt medicine. Nancy posted letting us know that Dr. B. is using patients wanting alt treatments as an excuse to withdraw treatment.
You can check out the threads for more info.
Cheers,
CBL.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
| IP: Logged |
Did you know that it was Dr. H. who recommended the B12 shots to one of Dr. B.'s patients?
I am not sure if it is helpful to the the people that Dr.B. dropped (and who now have no treatment) to tell them it was their own fault.
Health and better solutions to those who no longer have a lyme doctor in Canada!!
Posts: 3 | From Canada | Registered: Apr 2007
| IP: Logged |
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
i sure can't follow the ins and outs of this Dr B thing- way beyond by frizzled neurons' paygrade. i tuned in to hear a canadian hi, and poof, down the rabbit hole.
how depressing it sounds,though, to hear my canadian fellow lyme sufferers have SO few resources, whatever the particular merits or not of this Dr. B.
Isn't that the larger, most objectionable picture?
greetings from the US- dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
| IP: Logged |
posted
Interesting, I just posed a question on moving TO Canada to fight Lyme. *Very* ironic.
I guess one can only understand the whole picture when one has experienced both sides first hand. I actively want to escape the US medical system, it has totally destroyed me. I find a system driven by a motivation to make money on your medical condtion wrong. But, again, I've never experienced the Canadian system first hand, all I know is that it's free, and every sigle Canadian I've met was a nice, calm person
I did experience a free healthcare system though - the former Soviet Union. I did not have Lyme back then though. What was positive about it is that you could get the care fast, if you agreed to go wait in a line. A 1 month waiting time for an appointment was never heard of. My parents never understand why when I am feeling lousy I have to wait for months to be taken care of (forget ER, we all've been there).
Also, the doctors in the former SU were not making much money, which made them angry, but also self-selected only the ones who really wanted to help people, not to make money. This sometimes (sometimes, not often) produces amazing doctors who work with their heart.
The positive thing about the US healthcare is that it's very efficient in a standard sitation, when they know exactly what's wrong with you, and how to fix it. E.g. surgery is first-class. Lyme is NOT a standard disease, it requires some creative thinking.
They usually say to me, well, why don't you go back home? Indeed, now I am seriously considering it. However, I fought hard to work in the US, I like my job, and it would suck to put an end to it all b/c of a tick bite.
Posts: 59 | From CA | Registered: Dec 2006
| IP: Logged |
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Dilly,
I really posted to just say, "hi" mentioned a couple of things, and down it went
The last few days have been doozies on the Canadian site.
I sure empathize with the sig running xcountry skiing; same stuff got me in trouble + hiking / camping. Same as most of the rest of us here (and in Canada).
I grew up going to Socialist youth group. I didn't want to come to the realization that our healthcare system wasn't what it was "sold" to us to be.
On a cheerier note, I'm here now, and I've learnt a lot. I am starting (thanks to Dr. S.) to figure out how to stabilize my symptoms.
It's good to meet you guys, and I look forward to getting to know you better
With best wishes,
Alyssa.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[Razz]](tongue.gif)
![[bonk]](graemlins/bonk.gif)
![[Frown]](frown.gif)
Printer-friendly view of this topic