Next steps

Looking for advice as to what my next steps should be for treatment. I have an appointment this coming Friday with my GP to go over my progress and continuing treatment.

I believe I have acute lyme. I believe I was infected sometime in April of this year while camping in Pennsylvania. I came down with a sinus infection, low level fever, and muscle twitches near the end of my trip there. I did not notice a tick, a bite or a rash. When I got back to Canada I went to see my Doctor and was treated for the sinus infection on Avelox. The sinus infection went away but the fatigue and muscle twitching did not. I finally got tested for lyme and my ELISA test came back positive and western blot came back negative. My doctor clinically diagnosed me with lyme and I began Doxy (3 weeks, 200 mg a day). I probably went a month without any treatment before the diagnosis. I felt better at the end of treatment but relapsed a week later. I went back on the same dose of doxy with little improvement. I then went back a week later and asked my Doctor to increase the dose to 400 mg/day. Withing 4-5 days I started to see big improvements. I feel alot better but I feel like I've stalled. I'm not getting worse but over the last couple of weeks I've only seen minor improvements. I still get some twitching, quivering, buzzing feeling in my left leg around the calf muscle. My knee and ankle in the same leg started to hurt a bit too, although that has since started to subside in the the last day or two. The pain was minor (I'd say 3/10) and not even enough to take any tylenol or advil. But this feeling in my calf muscle isn't going away. I'm not sure if its nerve damage, still the lyme or something else. I feel a bit tired but I wouldn't call it fatigue as I have enough energy to do my day to day tasks, go to work, be social etc.

I believe I have made alot of progress but don't feel I'm 100% out of the woods yet. My main concern is the feeling in my legs.

My Doctor is not a LLMD...just a regular GP. I do have a referral in to Doctor T.C. in Toronto (thanks to Girlie for his info) but the earliest I'm getting into see him his November. He claims to be lyme literate but does not seem to be affiliated with ILADS.

I have been somewhat hesitant to book an appointment with a LLMD in the US as it means driving 6-7 hours one way and significant out of pocket expenses.

I'm hoping my GP will give me another month of doxy. Doctor also doesn't seem to know anything about co-infections. I'm not sure if my initial treatment of Avelox for the sinus infection would have killed those off. I don't really know how to go about getting tested or treated for co-infections using my GP.

Hi, Are you able to get tested by Igenix for co infections so you know what you are dealing with in case its more than just Lyme?

A doctor would have to sign off on the request.

When you see the llmd in November he can clinically diagnose by symptoms ,but that is some time to have to wait to treat for specific infections.

Have you considered adding any herbals in, Stephen Buhner has a good book on them. "Healing Lyme" 2nd edition.

Others should be along soon to chime in.

Take care.

torontolyme said...
Which coinfections should I test for? Does the standard igenix lyme test include coinfections or do you pay extra for those? Anyone in Canada know what the process is for the testing. Lastly could my doctor do any of these tests here in Canada through our provincial health care plan?

You can always try testing through our health plan.

Igenex has coinfection testing but you pay for each one.
You call Igenex and request the kit.
Your dr signs the lab req and you take it to LifeLabs for blood draw.
They send it to Igenex via FedEx.
Do the test early on the week ie Monday or Tuesday - so it gets to Igenex before the weekend.

FYI - I did a test out of Ontario - a LLND told me it may be worth a try and since it was reasonably priced I tested for Babesia, Bartonella and Candida (LLND wanted the Candida)
Each infection cost me $125 so I paid $375

They test both urine and blood for that price.
It’s not known in the Lyme world tho.


I was positive for Bartonella.

HealthGenetics

www.dna-human.com/contact_us.asp

They test for DNA of the infections.

Bump...

Any thoughts on whether I should continue with Doxy or try a different antibiotic?

ashleylynn said...
Unsure about doxy, but with whatever your doctor is giving you, you could also add Buhner herbs. They have helped a lot of people on here. Especially if you started this early, it could be really good for you.

Found his website confusing. Is his book any better?

I found the herbs online that I need and ordered from a place here in Ontario (not sure if I am allowed to post where I ordered from). They have everything nicely bundled together for the Buhner's protocol. Its suppose to ship out tomorrow. The herbs include Japanese Knotweed, Andrographis, Cat's Claw, Sarsaparilla, Dandelion. I also ordered Teasel tincture. Hopefully that's a good start.

I have no idea whether my Doctor will continue to prescribe me Doxy. I'm going to ask for another month on Friday of 200 mg x 2/day. He's been pretty good so far about stepping outside of the standard guidelines for treatment but I have to know what to ask for and make somewhat of a case for it. I've made good progress on Doxy but I'm not 100% there yet. Hopefully this will be enough to convince him to continue. Otherwise I have enough left to treat for about 19 days. If my Doctor doesn't continue to prescribe it I may need to get creative to get a bit more doxy, although the standard dose in Ontario is 100 mg not the 200 I have been taking.

Like I say I feel I have made progress...hopefully the addition of the herbal protocol will get me 100% there.

So I went to a fairly reputable walk in clinic. Let's just say I will not be going back to that Doctor again. I am so thankful I have a good GP. The Doc today completely disagreed with my GP's treatment. According to him he's spoken to an infectious disease specialist (I guess that makes him an expert??) and 10 days of Doxy at 100 mg two times a day is enough regardless of how long you've had lyme or how severe your symptoms are. This is a load of crap as I've done my research. There are NO infectious disease specialists in Toronto that are even willing to treat anyone with lyme. I've checked and my GP has checked. Luckily thanks to Girlie I found an internal medicine specialist that will treat...just can't get in to see him until November. I wanted to say something but he was so arrogant so I bit my tongue. I did get a bit more doxy to tie me over until i can get into see my GP but barely anything. I also learned something new....all Doctor's in Ontario have instant access to all of your test results and when you were tested! Keep that in mind if you are going to see another Doctor!

Girlie said...
I think the Dr you’re waiting to see operates outside of the Provincial health care plan - but I think you might want to keep his name private - not sure if it’s an issue but to be on he safe side...

(And that would mean paying out of pocket for the visit?)

I am not planning to share his name, but I do not believe its an issue with this Doctor from any of the information they have sent me. Part of the treatment is through the Provincial Health Plan but there is the option to do more extensive treatment and testing which would involve out of pocket expenses. Probably less than it would be to go to the States, but more than just a regular Lyme Disease Naturopath here.

Girlie said...
Besides test results can they also see all medications that have been prescribed by Drs from different practices?

They can only see the lab results, not prescriptions or anything else in your chart. Still I was a bit surprised and I'm not sure I like that just any Doctor can access my lab results. The walk in Doctor cared more about finding my test results then asking about how I was doing, what my symptoms were, how I was responding to treatment.

Back to my regular Doctor today. What a difference. He may not know much about Lyme but at least he is open to listen and different treatment options. Im continuing the doxycycline treatment of 400 mg per day for the next month. I didn't want to push the envelope but it seems like he will continue to treat me until I can get into the specialist in November. I also got tested today for coinfections through our public health department in Ontario. The sad thing is my doctor has never heard of these bacteria and I had to spell them out for him for the requisition. I don't know if the tests are any more or less reliable than the ones done by Igenix. And we did another Lyme test to see if the western blot comes back positive now.

Girlie said...
Great Dr you have.

I think it’s getting known in Ontario how prevalent LD is.

My Niece lives outside of Toronto and has two kids. She said it’s standard for moms (or dads) to do tick checks periodically when their kids are playing at the park.

That does not happen here.
People check their dogs when they’ve been on trails but not themselves.

My GP is great too. When I got my positive Lyme test she gave me a month of doxy and I think she would have given me more but I had a LLND appt lined up.

She told me a while back that if someone comes in to her office and have a bite that they think is from a tick she offers them three weeks of doxycycline.

Yes there is a lot of awareness about ticks and lyme disease in Ontario. Everyday I hear advertisements on the radio about taking precautions and checking yourself for ticks. The ads are actually frustrating to listen to. Our public health department (both city and province) have put all their "eggs in one basket" being prevention. I have no issue with the prevention message but there needs to be more done to educate our Doctors on treatment, diagnosis and testing. Very little seems to be done surrounding proper treatment, drug research, vaccine research, etc. Its sad that my vet knows more lyme disease than my Family Doctor does. I can put drops on my dogs back or give him a pill every few months that stops him from getting bit by ticks but I can't get proper treatment for myself.

My Doctor is good and I am thankful for that. But I did experience what others go through when I went to the walk in clinic this week and dealt with the arrogant Doctor who thought he was an expert just because he has spoken to an infectious disease specialist. He thought 10 days of treatment regardless of symptoms, length of infection, etc was enough.

We have made progress...but we still have a long way to go......

torontolyme said...
Just a quick update. A lot of my twitching and quivers in my legs have subsided in the last day or two. I still get the odd twitch or quiver but they don't last very long. And since that has subsided I am sleeping a lot better, so I am less tired. I just filled my prescription today for another month of Doxy. I will continue with that for the time being. My herbs and teasel tincture also just arrived. I am going to hold off starting the Buhner's protocol for now. I am going away for the weekend and my partner is going in for surgery the following week so I don't want to start anything new and have a bad reaction just quite yet. That will give me a week or two to see if the antibiotics have worked.

That’s great you’re responding to the doxy quickly!!
I’m glad you were able to get the extra doxy