Lyme Disease

[firefrog]

Hello

Does anyone know of a doctor or clinic where I can get properly diagnosed and treated for Lyme disease? I realize I'll probably have to go out of province (maybe even out of country). I've seen 3 doctors here and got nowhere.

I've had the tick bite, which got quite inflamed. I have many of the symptoms, and they're getting worse. The doctors here just don't know enough about it. I had one test done which came back negative (turns out it takes several weeks for the antibodies to reach a detectable concentration - the doctor didn't know this).

The provincial lab does the testing for such diseases. They won't do any further tests unless the first one is positive. (The provincial government says there are no reported cases of Lyme disease here - they seem to be gatekeeping. Biologists have found Lyme disease in many other animals in the province. Seems to me like the medical officials have the blood supply to their brain controlled by their sphincters. ........ I digress) My doctors won't request another preliminary test because the first one was negative.

I did some research and found that pretty well all the tests for Lyme are unreliable. I have to take matters into my own hands, I guess. I checked out some Lyme disease forums but can't find anything for western Canada.

Any leads here?

Thanks.

 

[Harps]

Talk to Dave Jensen on this forum or on his blog.

 

He picked up Lyme Disease in Washington State this spring.

 

http://flyfishalberta.blogspot.com/search/.../lyme%20disease

 

Gotta get treated fast and hard to minimize impact!

 

Info: http://www.canlyme.com/

[Guest 420FLYFISHIN]

down in idaho i was aked by a bunch of people if was warry of ticks as it is a alrger problem down there but in the booming town of Soda Springs i dont think there is too much medical knoledge to be found.

 

hope you can nip this in the but fast

[soggysocks63]

I remember when I had my tick bite last spring and read up on Alberta lyme disease. Very rare but possible but, I remember some of the articles i read. I still have tick in a jar incase i needed to send it in to be tested. But here's the article that concerned me...

 

http://calgary.ctv.ca/servlet/an/local/CTV...hub=CalgaryHome

 

"In June, a Calgary woman says that she contracted Lyme disease even though doctors in Alberta were unable to positively diagnose her.

 

It took Susan McInnis to send a blood sample to a lab in Seattle to receive a positive result and treatment."

 

Seems really irresponsible for a doctor to refuse a second test if your displaying symptoms. That bullseye welt is a pretty definite give away that you should be treated regardless. Isn't the treatment just antibiotics anyway?

[DaveJensen]

Here's the rub with the Canadian test - it's 40% effective!

I feel for you. Lyme can really wreak havoc and I was quite lucky, thanks to an ex-step dad that had me paranoid back in the 70s about Lyme, and I had a great doctor that was willing to have a go without a positive test - what I mean there is that they don't like to do the tests for a min of 6 weeks to allow it to show up but by that time it will disseminate, which is nuts. So, we went ahead and treated it for Lyme per the recommended treatment. The thing about this disease is that once it disseminates into your body, generally in the second generation of spores in month 2, it is far tougher to rid out of your system. I was keenly aware of Lyme, and Amelia & I were frantic about making sure we knew what we were possibly up against. I was also lucky as I had the aggressive co-infection after being bitten and my symptoms came on fast and hard. With that I had it for 6 or 7 weeks until it cleared up. But my God I couldn't touch the lake water at Fortress for doubling over in crying pain - my nervous system was an instant wreck. My whole body tingled. I had night sweats that SOAKED the bed. My headache was unreal.

http://flyfishalberta.blogspot.com/2011/06...disease-eh.html

 

Kathryn Maroun of What A Catch tv show is really battling Lyme disease right now too. She's getting treatment in California and has to fly out every couple weeks for treatment.

 

The Canadian medical folks are light years behind on this. Consider that 20,000 cases are confirmed annually in the USA, with an estimated 5 times that number undiagnosed. And the map of the highest concentrations in the USA is along the Canadian border. This past spring there were accounts of high tick numbers with Lyme showing up in Canmore and around the Stauffer area. It is here.

Get in touch with the canlyme folks. They can be a godsend. Fewer than 1/2 the folks with Lyme disease ever recall a tick bite.

 

My doctor is Dr Moffat in Red Deer. Maybe he might believe / work with you as he worked so well with me. See if you can get in to talk to him or see if he'd refer you - he knew of a tick specialist. But, there again - the folks at canlyme are really good to work with. If you go on antibiotics, the test will almost certainly come back negative as well. The spores hide themselves quite well. If you go on long term antibiotics, beware the sunburns!

 

I have another friend that I am convinced has Lyme but he's been diagnosed with a series of malladies including chronic fatigue syn. The symptoms list screams Lyme.

 

Reading:

http://canlyme.com/2008_October_Burrascano..._guidelines.pdf

http://www.ilads.org/files/ILADS_Guidelines.pdf

 

Hope this helps & good luck! Don't take "I don't know" or "Maybe it's something else" or "the test said it was negative" as an answer. Push hard, and when closed doors pop up - follow up with others. It's your health and Lyme is no way to spend your future.

 

Dave

[firefrog]

Thanks Dave

I really appreciate the info. I've already contacted Canlyme. It's been over a week and still no reply. I'll try again.

I have an appointment with yet another doctor tomorrow. I really hope he's receptive to the idea. One good thing is that I took pictures of the rashes/inflammation. In my mind, there's no doubt after looking at the photos and hearing my symptoms. I don't understand the doctors' reluctance to go ahead with treatment. I think of all the cases I've heard about doctors churning out prescriptions without proper diagnosis or tests. But with me, they won't even consider it.

You're right - Lyme is no way to spend your future. My head is ready to explode. I really want to get on with this.

 

[PeteZahut]

Good luck and I wish you the best of health!

[bigdaddy]

Keep asking questions and pushing the docs to test you. There is a movie about Lyme that may help you understand it better.

 

http://www.underourskin.com/

 

 

[firefrog]

Hi again

I finally got to see a specialist. She's very sure I have Lyme and/or other tick-borne illnesses. You don't have to tell me how stupid it was to go out thrashing around in the backcountry without covering up and taking some precautions. So here's some things to pass along:

The best solution is PREVENTION. Cover up, spray, tread lightly, keep a lookout on your body and others. These little buggers even got deep down inside my boots. There's no such thing as overkill, friends.

Your doctor will probably not be able to help you if you catch such an illness.

These illnesses are way more prevalent than you may believe.

I will have to pay a couple thousand dollars out-of-pocket for diagnosis and treatment.

The area I was in was Waiparous/Meadow Creek. Be careful out there.

My symptoms are somewhat mild - but it is painful and miserable.

This will take months to cure and it may resurface years later.

 

Even so, it's still worthwhile to get out there and enjoy the outdoors.

Cheers

 

[Toirtis]

Sorry to hear that....I know that living with Lyme disease can be unpleasant. Hope you do well, and thanks for reminding everyone what a little prevention can do.

[DaveJensen]

Firefrog - this is one of situations where a 50 year old fly fisher ultimately acts like a 13 year old boy - "it can't happen to me!". This isn't a slight to everyone who hasn't had Lyme, but man, until you get it, you don't get it... and when you get it and look in hindsight, you kick yourself that you didn't take precautions. It really, really sucks. Hopefully your treatment clears everything up. Make sure you follow the recommendation of treatment a minimum month past the very last symptom's appearance.

The amazing thing is that the Canadian medical system says that fewer than 500 cases a year occur in Canada. I know 3 people that have had it this year. I guess we fly fisher types have the market cornered in a niche fraternity! Or, the Canadian medical folks have their heads in the sand.

Best of luck and be sure to post updates as you recover.

[Taco]

Funny.. as many hrs days weeks months yrs I've spent in the outdoors, a lot of it in prime tick habitat, I've never found a single tick on me. Found and removed them from other people, dogs and horses but never on me. Lucky I guess

[SteveM]

Funny.. as many hrs days weeks months yrs I've spent in the outdoors, a lot of it in prime tick habitat, I've never found a single tick on me. Found and removed them from other people, dogs and horses but never on me. Lucky I guess

 

That's 'cuz only Mexican ticks eat Tacos...

 

[Taco]

Jeez Rev ain't y'all the hilarious Newf tonight

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.10,000 comedians outta work and the damn guy's tryin' to be funny

[jonny5]

Howdy Firefrog, I was at a neuroimmunology conference the other month and I remember a few things discussed about lyme. One is that western blotting is very unreliable for diagnosis. If you can find someone to do a PCR test, I can tell you that this is VERY specific and sensitive, but prone to false positives.

 

Someone mentioned xenodiagnostic lyme testing which they basically use a tick (a clean medical tick I am guessing) and attach it to you and allow it to feed. Somehow, the borrelia is VERY good at finding its way back to the tick and then the tick can be examined for the bacteria. Sounds ok if you don't mind getting bitten again.

 

I don't know who is doing these tests in Canada. My main question is why your doc didn't just put you on doxycycline just in case?

[jonny5]

Ticks are nasty critters. We got lots of them in oklahoma (as I found out this summer mountain biking ), and they carry rocky mountain spotted fever here.

 

Easily prevented with some bug spray though...

[firefrog]

Hello again

Yes this might sound like a broken record. Be careful out there this year!

I spent the entire winter taking treatments and doing lots of blood tests. I STILL have it.

Although my benefits plan covered about half the costs, I have forked out over four thousand dollars in addition to that, out of my own pocket. I fear the eyesight in one eye will never return to normal and sometimes the aches and pains stop me in my tracks.

It CAN happen to anyone.

Enjoy the summer.

[alan2]

Do you have a picture of the tick? Or know the specific species?

 

Over the yrs I've had quite a few Rocky Mountain ticks including just a month ago after a hike, but I don't think this species carries Lyme disease and it is by far the most common tick you'll encounter in the mtns. Some carry Rocky mountain spotted fever tho'. A pic of the culprit would be interesting.

 

 

[firefrog]

Sorry A2, no picture. That's the thing with Lyme. The rash doesn't appear until a day to a week after the bite. I didn't know I was bitten. I didn't see any insects on me at all. A week after the bite, my symptoms started to pop up. The blood tests (for what they're worth), and the doctor's assessment confirm Lyme.

Cheers.

 

[fishinhogdaddy]

Looking on the news today, they are predicting another bad year for ticks. Being that the weather has been quite warm and a mild winter, expect to see more ticks.Be safe out there.

FHD