New here

I'm new to this forum. I've read the first post on new to lyme and there is a lot of good information but I also find it very over whelming and I'm uncertain about where to turn next. When I research online I get overwhelmed and start to feel worse. I'm in Toronto Canada and I find there seems to be no lyme literate doctors here (unless someone on here can direct me to one). I know there are a few Naturpathic Doctors that specialize in Lyme but I would rather have more of a comprehensive treatment plan including someone who can prescribe medications.

A little on my background. I was diagnosed with Lyme disease by my family Doctor on May 16th of this year. I tested positive on the ELISA test but negative on the western blot test. Fortunately my doctor based his diagnoses on his clinical assessment and the positive ELISA test. He initially put me on 3 weeks of Doxycycline (100 mg twice a day). Within about three days of being on the antibiotics I started to feel much better although a few symptoms persisted (muscle spasms, and tingly feeling in my left knee). These eventually went away while on the antibiotics and for up to one week after finishing the antibiotics I felt good and was optimistic that I had this beat.

Pretty much a week to the day I stopped the antibiotics I started to get swollen glands in my neck. Then the fatigue gradually returned. I was travelling at the time and couldn't get back into my family Doctor and these symptoms continued for another week. I was able to get into my Doctor yesterday and he put me back on Doxy (initially was only going to put me on another three weeks--I managed to get him to up it to a full month).

I believe I was infected sometime in April while I was camping in Pennsylvania although there is no way of telling for certain as I did not notice a tick bite or get the typical bulls eye rash. While in Pennsylvania I began to get start to have twitching muscle spasms. I also go bad sinusitis and flu like symptoms. This progressed into a sinus infection. I went on a number of antibiotics as nothing was helping the sinus infection. It finally went away after taking Avelox. However the muscle twitches and fatigue did not go away. I went through a number of tests which all came back normal. Finally after a coworker suggested it could be lyme I went in and asked for the lyme test, then waited for another week and a half for the results. So I probably went about a month before I was diagnosed and received treatment.

I'm hoping I will start to feel a bit better again now that I am back on the doxy but I know that one month will not be enough. I'm not sure whether my doctor will extend the treatment after I'm done. I asked him about co-infections and he went silent so I know his knowledge of Lyme is somewhat limited.

While I feel like crap, I know my symptoms aren't as bad as some are experiencing and I'd like to keep it that way and beat this before it gets any worse. I'd appreciate hearing from anyone here in Ontario (or Canada) as to what options I have for receiving complete treatment.

Ideally my family Dr will continue treating me. I was actually surprised he put me on another round of doxy. But I have no guarantee at this point that he will.

Other than that if there is a LLMD in Buffalo or Rochester I'd consider going.

Hi, Torontolyme, welcome!

There is an MD in Toronto that has treated patients...but I don't think he treats long-term.
...also I'm not sure if he is still treating lyme patients or if he is taking on new patients.

Since you've caught this early and you may not need more than a couple of months of abx....it might be worth calling the office and try to book an appointment.

Send me an email if you'd like the information.

Other than that, you are looking at going across the border. There's one in Plattsburgh that many Canadians go to and she has good reviews.

torontolyme said...
While in Pennsylvania I began to get start to have twitching muscle spasms. I also go bad sinusitis and flu like symptoms. This progressed into a sinus infection. I went on a number of antibiotics as nothing was helping the sinus infection. It finally went away after taking Avelox. However the muscle twitches and fatigue did not go away. I went through a number of tests which all came back normal. Finally after a coworker suggested it could be lyme I went in and asked for the lyme test, then waited for another week and a half for the results. So I probably went about a month before I was diagnosed and received treatment.

The swollen glands, sinus problems, and the fact that it responded to a fluoroquinolone (Avelox/moxifloxacin) are suggestive of Bartonella. There are antibody and direct tests for the presence of the bacteria. Sida acuta and japanese knotweed are effective against bart, they might be worth taking as part of an herbal protocol while you pursue other treatment options. You are incredibly lucky to have a family doc who will treat Lyme without a positive Western Blot, especially in Canada.

Yes I am happy my doctor is treating me without a confirmatory western blot. I was surprised he even put me on another course. I am hopeful that he will continue treating me but have no guarantees.

I've got the referral package from the Doctor in Toronto that deals with Lyme. It's a wholistic approach between MD's and NP's so there will be some out of pocket expenses. The package does seem to indicate they will treat with long term antibiotics.

Is Bartonella something my regular doctor can test for? He seemed clueless when I asked about coinfections. Would Doxy take care of this bacteria or does it require a different course of abx?

At my request today my Doctor increased my dosage of doxycycline up to 400 mg today (2 100 mg capsules twice a day) for 30 days. I still have quite a few tablets from my original prescription so I can actually treat for 41 days. Hopefully that will be enough to kick this.

I also got the referral to the internal specialist in Toronto that is lyme literate.

The pharmacist actually called the doctor to confirm the prescription as it was prescribed off the standard guidelines. Really???? Just fill the prescription!!!

I've always been told not to have milk or cheese with the doxy and wait 2-3 hours but the pharmacist said it was ok to take it at the same time. I am on the capsules this time and not the tablets--not sure if that makes a difference.

Btw - there's an internal med specialist in To who is Lyme literate?

Hmmmm....I wonder about that.


If there indeed is a Lyme lit dr in To - then why aren't patients going to him?

And I'm wondering why I've not heard of him.


Can you email me with info ?

torontolyme said...
Girlie, it's actually the Toronto Doctor you referred me to. His specialty is internal medicine. All the documents his office have sent me claim he is Lyme literate although I don't think he is affiliated with ILADs. He works along side a Naturopathic Doctor as well. I can forward the info if you are interested.

oh, okay...lol. I didn't know he was an internal med doc.

I was told he isn't an ILADS member and was lyme 'friendly' but if he can treat you..that's great!
I was also told he will treat for a few weeks...maybe a couple months...and that's it.

Do you know if he does treat chronic lyme, as well?

That sounds like a good plan, torontolyme.

I hope your doxy is enough to put this infection to rest.