Hi Ness. Welcome to Lymelands.
Sorry to hear you're ill, and sorry that you don't have a Lyme doc at hand. Have you looked at the canlyme website? If you search/google just that word, you may find some connections to a Lyme specialist (LLMD).
Your doc sounds like a nice person, but neurologists often aren't trained in the more current understanding of Lyme and other diseases carried by the same ticks. The requirement of a fat tick on you, arthritis and acknowledgement of Lyme in your area are the old, old, old standards set up about 20 to 30 years ago in Connecticut (where the town of Lyme is) as surveillance markers to see where and how fast Lyme disease was spreading. Unfortunately, those standards are out of date in the opinion of Lyme specialists, because Lyme is a very subtle disease with a different presentation of symptoms in everyone, esp. if the tick is also carrying other diseases (co-infections) that muddy the symptom picture.
Glad to hear your doc ruled out MS for the most part, that's good news. And she's trying to be creative, thinking about HIV etc. just to try to cover all the bases. Now if she would just streeeeeeetch her mind a little more to learn about current Lyme research, she might be more helpful.
If you think she has an open mind, you might tip her off to ILADS [dot] org, under the tab 'about lyme' and Dr Burrascano's long article there, meant for MDs, on diagnostic hints and treatment guidelines for Lyme and its coinfections. I recommend it to you for your personal education too ... it's a little thick in places, but mostly quite accessible to nonMDs. As I read it, I was nodding my head, saying Yeah, I got that, and that, and that symptom too .... but what's clear is no two people have the same set of symptoms, partly because of confounding (confusing) symptoms from any co-infections and partly because everyone's immune system reacts a bit differently.
Lyme is a sneaky bug, and it causes different symptoms in everyone. If you read past postings here, you will see that we are all a bit different, but with many commonalities. (I think of it as being like -- hold on here -- menstrual cramps: ... some women never get them, some always get them bad, some get them sometimes bad and sometimes not so bad, and for some it changes over time. But there are enough common details that we can all relate to each other and know what cramps are all about, even tho we are each different. Hope that makes sense.)
Some docs insist that you have to have seen a spreading circular (bullseye) rash where the tick bit you, but your doc doesn't seem fixated on that, so maybe she is open minded enough to do some reading. Columbia University Medical Center in New York City has a well known Lyme research and treatment center run by Dr Brian Fallon, and they have a lot of good information online (just search 'columbia university lyme' and you'll find it). I'd recommend you take a look there and pass the site along to your doc, maybe even more importantly than the ILADS site. NonLLMDs look at the ILADS folks as a bunch of crazy cowboys, but Fallon at Columbia seems to motor along without people throwing rotten fruit at him, so maybe he would have more credibility than ILADS in your doc's eyes.
As to your doc's other two points, yes, there is Lyme in Canada, but if it is required that everyone have a bullseye rash and arthritic joints (when only some of us do), then there is a huge undercounting of Lyme cases. Another parallel: if you were the medical police trying to figure out whether there was a flu epidemic passing thru Canada, and you wanted to be SURE not to accidentally count people with the sniffles as having true influenza ("flu"), then you would require a list of symptoms that would not all be found in someone with sniffles: you'd want to document maybe a high fever, vomiting, a rash, known exposure to someone else with influenza, and other specifics. Then you would be pretty sure that the number of flu cases you report did not overstate the truth; you might miss some actual flu cases if some people weren't throwing up, for example, or their fevers were a degree short of your cut off, but your reports would be precise.
The problem is that Lyme patients are treated like we are auditioning to be part of the 'true Lyme' group with ALL the symptoms including tick bite, swollen joints, and so on. Unfortunately that epidemiological approach to diagnosis misses a lot of really sick people who really DO have Lyme and should be treated for it.
Sorry to rattle on here, but you sound like you are in precisely this situation. You should read up, and try to get your doc to read up, and you should be prepared to find a new doc even if you have to travel to do it, if your current doc refuses to think bigger thoughts. Some docs do refuse, and then it's up to you to go to Plan B, whatever that is for you.
And about your symptoms being 'too transient' --- that is nothing I have ever read, and in fact it's the opposite: waxing and waning symptoms that come and go over time as the disease flares up and fades back (and then does it over and over again) is VERY common in Lyme, to my knowledge. I personally went through about 20 MDs before getting diagnosed and treated for Lyme and babesiosis (a coinfection related to malaria), and the first 19 docs thought I was either crazy or lazy, tho one had the modesty to say "I know you're sick, I just don't know what it is." Another doc tested me for Lyme and got a positive result, but the way nonLLMDs read the test results, it was considered a negative .... that's like saying that it's not raining unless your car is floating down the street. Wrong, wrong, wrong.
So in my NOT-medically-trained way of thinking, the transience of your symptoms actually is consistent with Lyme. Many many people who post here have symptoms that rise and fall. Mine even got worse in the spring and better in the winter, so working on lots of cycles of different amplitude. Bacteria belong to mother nature too, so why not run in waves?
My own symptoms varied from place to place in my body, to leave and come back in some other fashion, to show up in completely new places sometimes. It's a strange little bug. It affects the nervous system more strongly in some people than others, it seems, and those of us with a lot of neuro symptoms are like a traveling circus: you never know where the bugs will strike next. So no, you're not crazy.
Sorry to ramble. I'm really tired and it's late but the laundry's in the dryer so I thought in the meantime I'd try to give you some data from my personal experience. If this doesn't make sense, write back and I'll try to explain better what I'm thinking.
But the short story is: I'd do some quick reading at canlyme and ILADS and look at the Columbia U site, then try to pass along the data and the sources of the data to your current doc with your questions, like "I remember you said my knees should be sore, but in [X] it says that not everyone gets joint involvement." And so on. To gently, gently lead her along to open her mind.
And in the mean time, try to find a new doc just in case your current one won't think bigger thoughts. You may have to drive a ways to do that, but my own LLMD, once I was diagnosed and on treatment, only saw me once a month, so a distant doc is not impossible to work with. Others here actually go really long distances and have phone checkins with their docs instead of all in-person visits.
Let us know how you do, okay? You are asking the right questions. Best wishes to you -- !
You already got good advice here, but I just wanted to add how unusual it sounds to me to dismiss Lyme due to the transient nature of symptoms--I thought that was almost a hallmark of the sort of neuro symptoms that can arise from infections! I'm not medically trained, but when I was going through work-ups looking for a dx I was told repeatedly that things like MS cause long-lasting symptoms in the same exact location, while things like Lyme can cause short lived and migratory symptoms.
I also never saw an engorged tick, I'm not an outdoors person, and while I had some joint problems they onset slowly over years so I didn't really associate them with my illness. I had a largely neurological presentation of tingling in the face, hands, and feet (on both sides, which is also unlikely for MS but more common in Lyme).
I travel about 900 miles to see my LLMD. This is because I was very far into treatment when I relocated. The part of the county I'm in now doesn't have any nearby LLMD's, so even if I changed doc's it would be at least a long drive. I figured in that case I'd rather stick with the same guy, so I fly back a few times a year. In between I do phone consults. It's not ideal, but since all LLMD's do things a bit differently, it was worth it to me to stay with my original doc for consistency.
It feels so good to be heard! I find the 3 month wait and 5 minute specialist appointment frustrating.
Jackie your suggestions are great, and Wonko I am more encouraged to go the distance to find a good LLMD. The last standing LLMD in my part of the country just got threatened by the college of physicians so just as my refferal got sent, he stopped taking new patients. Bummer.
I will have to cross the border and pay about a thousand bucks, so my plan is to rule out other mimics like CNS lupus under the Cdn healthcare system, before I cross the border and pay.
I will look up the U of Columbia doctor. That sounds great.
Also, has anyone come across any post on this site that claims they passed on LD through breast-milk because I am a nursing mom. I know there is a conflict, but I would like to know peoples first hand experience. Thanks again.
You posted your original message in 2011 so I hope you are feeling better today! I have symptoms similar to yours so I was wondering if you found the cause to your troubles? Lyme?
Thanks for an update!