Hello, all Hope you're all staying well and re-discovering some homebound activities during this time of family self-isolation. (I know, I know - for those of us dealing with Lyme for years we know...
Hello, This link is to a study released in June of the experience of parents who have children with Lyme. It was undertaken by researchers at Mount Allison University in Canada (east coast) where...
As you all probably know, there are a few psychiatrists who have each focused on neuropsychiatric Lyme for the last 30 years - Dr. F in NY and Dr. B in New Jersey. I find it interesting to look at...
A slight glimmer of hope for parents of children with Lyme Disease in Ontario. After abysmal treatment (reporting to Childrens' Aid) by doctors at a childrens' hospital, the CEO stepped up to begin a...
I am canadian, and have only claimed out-of-country physician fees and prescription costs on my income tax. I noticed that Revenue Canada had adjusted last year's claim on the Notice of Assessment...
The Alberta LLMD R.H. is the real deal...but sadly not taking on new patients....
ah. yes. T.C. is in Toronto. I haven't been impressed. I am frustrated when folks find Lyme as a great new money stream; that's my impression there....
Hi Girlie - you mentioned you had the name of a Dr / GP out east who prescribes antibiotics, but has a waitlist. In what city / province is this person? Maybe initial? Tx...
Hi All I wanted to share this post, in the New Yorker today - dealing with withdrawal, and the # of people on psychiatric medications....
I give up trying to get both links to work...the second one can be cut and pasted. It is a link to the profile for the wonderful executive director of the site, from Boston area, who I met at a...
The recommended "safe" withdrawal rate is a reduction between 5-10% (at most) per month - calculated upon the previous dose! Depending on the beginning dose, number of prescriptions, withdrawal...
sorry..updated the links and they should work on cut and paste. yes, we have 1 internal medicine person in Alberta but I haven't been successful in navigating into him... and have heard the same...
Perhaps someone already posted about this and I missed it. A week ago, AMMI - the Canadian equivalent to the IDSA - (Association of Medical Microbiology and Infectious Disease Canada ) posted an...
In the fall, I went to the Holocaust Museum....which was very sad but very well done. There is a part, just at the end, where they show video of actual survivors telling their stories which is so...
And, I was the other lady from Canada (East Coast / Toronto) - who had an appointment with Dr. J right after Girlie. Sorry I couldn't chat further, Girlie, as I was heading in next. I would have said...
Hi I'm also from the east coast of Canada and my son and I are patients of the JSC. We went there as the first line of treatment, mainly because my son had been sick for so long I felt I wanted to...
This was getting a lot of press up in Toronto area yesterday. https://www.huffingtonpost.ca/2018/10/22/acute-flaccid-myelitis_a_23568135/?utm_hp_ref=ca-homepage Doesn't it sound a lot like some...
As a "side-line" (when not trying to address the rampant issue of Lyme in my family), I'm an economist, with a 30+ year involvement in helping health systems work better. [Sidebar: to my horror, I've...
Girlie - I was on the phone with appointments on Wednesday booking appointments -- and I'll be competing with you for a Dr. J appointment when his August calendar opens up. I will note that,...
Thanks for the blessing, bluelyme. Imagine having to be our own diagnosticians! - I thought that's what we paid doctors the big bucks for. My son was very critical tonight so I caved and took him to...
Yes, Purrrsiankitty, I'm surrounded by folks around here who have symptoms of Lyme which have diagnosed as all the usual suspects, MS, ALS, Fibro...etc...and just in normal conversation I'll speak of...
Hi Girlie Yes, bless Elizabeth May - she must be so disappointed in how this has turned out. I haven't heard that NDs here on the east coast will get pharma prescribing rights...the system is very...
Today, I'm even more ashamed of our Canadian healthcare system and federal government. As a Canadian who is experiencing Lyme personally (and slowly recovering) and in a family member (who is not...
Hello, LauraJK I'm so sorry for all that you and your family are going through, and wish there was a magical solution. Please stay strong and keep checking in and providing updates; we care and are...
My son went the first two times in person (as we were living in Toronto at the time) and then by phone (as we moved 12 hours away). I was referred to Dr. A by a person who felt that he had benefitted...
I know, Caramba Simon Templar's cupboard space and organization in supplements #1 is incredible!!! Perhaps, Mr. Templar, you could start a Health & Wellness storage design consultancy....
Hello, DMW52 My son saw Dr. A -- in person and then through phone consults -- a few years ago when we didn't yet have a Lyme diagnosis. His "diagnostic approach" was interesting (although he didn't...
Hi In response to Longmoss's comment / question about the humour, I think if we are talking about ourselves in a sort of self-deprecating way the humour can work, relieve tension, and (perhaps) allow...
Hello, Rikky1 I like the comments of Traveler, PeteZa, & bluelyme. If you're going to have them removed please ensure that it is done by a holistic dentist. Above all though, please please assess the...
Hello, clsrmla I'm sure the official welcoming committee will post something to you shortly. In the meantime, welcome from me! I can answer your questions -- from my experience. I was diagnosed in...
Hello,I like your thinking Antonio! For me, I find the positive most frequently in being outdoors (yes, there's a certain irony) and in finding humour in daily lyme situations. I live on the east...
Hello, RMTC40 I’m so sorry for all that you and your daughter have been through; as you say, how much can a person handle? You have been so incredibly strong for her - and I have the sense that she's...
Hello, RMTC40 Welcome to the forum and I'm terribly sorry for your reason for being here and for what you're experiencing with your daughter. Like many of the folks above, I've been through some of...
Hello, Cookiemagic Our family knows a bit about niacin in large doses, as a few years ago (before my son was diagnosed with lyme) an ND felt that these, in conjunction with high dose vitamin C, would...
Hello, We (son and I) have 1 person - our LLMD (1500 miles away)... who provides a care plan including antibiotic prescriptions and comprehensive supplements that we acquire from here, there and...
Hello, Happyjo I agree about the money etc. for extra physio, help, etc. That's one thing I'm struggling with; I feel my son really needs a wide range of supports and I can't afford to put them in...
Hello, Saiyaex I also experience similar sorts of pain, beginning years before I knew I had lyme, either in my ankle or in my arms/shoulder/back area. The pain would show up out of the blue a few...
Hello, ShutterGy I'm very excited about the Spaulding centre and the services they're offering for lyme. I wish I was a bit closer and could access their services for my son (and a bit me) on a...
Hello, Patchman My son (adult) and I are both patients of Dr. J's. I'm pleased with the attention to detail we receive in appointments and already have seen progress in my son's case (at roughly the...
Hello, on doctor count - for my son, the count is over 50. Yes, FIFTY - Over the course of 12 years from when he first complained of symptoms until I learned that Cdn lyme testing was flawed and...
Hello, Beeperoni My son and I have both been on (and continue to be on) Malarone with Flagyl (8 mos for him, 3 mos for me). We are on a pulse program (2 weeks on, and 1 or 2 weeks off; plus MWF sort...
Thank you, Georgia Hunter and rowingmom All the material you have both linked us to is valuable. I had no idea on some of it. Thanks for the education and straightforward guides. (I particularly was...
Oh, yes, I cry in an instant for books, movies, other's stories...and mcdonald's commercials. (where the 3rd is by far the most important). This began during my first pregnancy and hasn't let up. I...
Awww, Girlie. Hug. [I must say, that I don't cry often (maybe about once or twice a year - because what's the point?...too much to deal with) BUT when I DO cry, those quiet, soft, warm, lovely, salty...
Hi For my two cents -- as long as they are not negating ongoing antibiotic or other preferred treatment of the disease -- I would welcome a centre that offers a range of holistic therapies and...
Hi Carla In terms of the C-pap machine.... Due to my lyme (I think), I started having sleeping problems similar to what you describe and I was bustled onto a C-pap machine a few years ago (before I...
Hi Carla My son and I were diagnosed with and have been treated for lyme for the last 9 months and 4 months, respectively. We have had it, likely, since about 1994 / 95...so it was slowly doing it's...
Hi Ricky1 My son did them (a few years ago when we didn't know yet that he had lyme). The MD had suggested a minimum of 2 a week for 6 weeks. My son followed that and was the best he'd been in years...
Hi Carla In late 2012, when we didn't know what was wrong with my son -- but knew something was hitting him neurologically - we did an initial "round" of 40 HBOT treatments (and we were to take a...
Hello, K07 In answer to your question on brand, here is the detail on what I purchased: - The main product I bought is this: TriField AC (Gauss) Meter Model 100XE [...