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Posted 10/19/2022 8:35 AM (GMT 0)
As some of you know - I have been on maintenance under the care of DrJ for about 3 1/2 years now.
I am stretching the time off between the protocols.
It started with one week on and 3 weeks off
On the “on” week I take the abx 4 days.

It’s been 9 weeks off now and am thinking of stretching it a few more weeks - to 11 or 12 weeks off unless I feel symptomatic before then.

And if I don’t herx - then I’ll stop for good.


Or should I stretch longer this time?

Fingers crossed - I only have enough abx for one more round.

If I need more meds - I will have to go to DC for an appt - I don’t think he will give me a script without an inperson appt.
It sucks because I am on the west coast of Canada - it’s three planes to get to DC.
A trip costs about $ 5,000 for myself and husband - hotel, airfare and meals.

If I could just get the abx online - that would be a solution - but ADC doesn’t ship to Canada.

What are your opinions?
Posted 10/19/2022 10:25 AM (GMT 0)
U can ship meds to the usps office in Port Angeles. Ship it to the address and General Delivery. U don’t need a prescription to walk it back onto the Coho or any crossing. Just leas than three month supply and be prescribed by a doctor. U do not need the prescription with u, but if u are asked by customs if the medication is prescribed to u, u must say yes. I have done this many times.
Once I brought a bunch of Ceftriaxone powder in boxes and the girl pulled me aside and told me I couldn’t keep it because I didn’t have a prescription. I showed her the sheet from ADC that said Ceftriaxone and explained to her that my doctor had prescribed it but it was too expensive without extended coverage. She met with her supervisor for a minute, who told her that yes I could keep it. She turned around and begrudgingly let me have it all back and explained that next time she wanted a prescription. I explained that she was incorrect and I don’t carry my prescriptions in me because I don’t need them and the rules were all explained clearly on the ccra website. That is the only time I had to put up with someone who didn’t know the rules.

Post Edited (Onlynamenottaken) : 10/19/2022 10:50:58 AM (GMT-7)

Posted 10/19/2022 10:37 AM (GMT 0)

Onlynamenottaken said...
U can ship meds to the usps office in Port Angeles. Ship it to the address and General Delivery. U don’t need a prescription to walk it back onto the Coho or any crossing. Just leas than three month supply and be prescribed by a doctor.

So are you saying I take a ferry to Port Angelos from Victoria?
And where are they sent to in Port Angelos? The UPS office?

“ Just leas than three month supply and be prescribed by a doctor.”

What Dr would prescribe them?

I don’t think I understand what you’re saying.
Posted 10/19/2022 2:32 PM (GMT 0)
sounds like a decent suggestion

or ship to a friend in the US and have them ship to you

there are also online services that offer the same thing

eg https://www.usgobuy.com/

i have used them for items that will only ship to US addresses - and they then forward it on to you at reasonable cost

i think someone here mentioned them before
Posted 10/19/2022 3:05 PM (GMT 0)
In the United States, mail addressed "general delivery" gets held for pickup at the post office.

The problems with doing this are that they will often only hold it for a limited number of days, and you won't necessarily know when the package is available for pick up. If you have a tracking number you can check, but I often don't get tracking numbers from places like ADC and IHP. Also not all post offices will hold packages, often just the main one in a city.

You could also try renting a PO box, but they will ask for ID and I don't know what the policy is on Canadian passports.

There are mail forwarding services, but I'm not sure what you have to declare for customs.

Easier would be if you have a friend in the US who can get the package delivered to their house. For $5000 you might as well fly to Vanuatu or India and pick it up from the pharmacy lol.
Posted 10/19/2022 5:40 PM (GMT 0)
“ For $5000 you might as well fly to Vanuatu or India and pick it up from the pharmacy lol.“

Right? 😆
Posted 10/19/2022 6:01 PM (GMT 0)
Girlie, I just edited my post.

Yeah u could probably use UPS but they are more expensive. I just used the US Postal Service. U can track it and they will hold it for a certain amount of time. U can also send it to a parcel service that will hold it for pretty much forever and just charge u a bit extra.

Canada customs allows parcels shipped from the US no problem, so I have also shipped to my brother in the US, then he puts it in a new bubble pack and sends it to me.
Posted 10/19/2022 7:53 PM (GMT 0)
“ Canada customs allows parcels shipped from the US no problem, so I have also shipped to my brother in the US, then he puts it in a new bubble pack and sends it to me.“

But that involves someone in the US getting the pkg.
I don’t know anyone in the US.

I guess I could get a PO Box in Blaine which is just over the border and have ADC send them there.
Posted 10/19/2022 9:18 PM (GMT 0)
I think I will wait a couple more weeks - it’s 9 weeks off now.
I will do the protocol after 11 weeks.
If I still don’t feel symptomatic at that time AND I don’t herx then I will just end my treatment.

I would think that after 3 months off with no symptoms returning - I could conclude I don’t have active infection….
Posted 10/19/2022 10:47 PM (GMT 0)
i was thinking about this today and my thoughts are if it were me - i think i would try a round after 6 months and a gain after 12 months to be sure i dont herx and could be confident its gone.

if its the difficulty in getting teh abx - that should be pretty easy to solve

am sure some members here in the USA would be able to help

or just use the usgobuy option
Posted 10/19/2022 11:39 PM (GMT 0)

Garzie said...
i was thinking about this today and my thoughts are if it were me - i think i would try a round after 6 months and a gain after 12 months to be sure i dont herx and could be confident its gone.

if its the difficulty in getting teh abx - that should be pretty easy to solve


am sure some members here in the USA would be able to help

or just use the usgobuy option

Yah , doing a protocol at 6 months and again at 12 months would be ideal.
Posted 10/19/2022 11:57 PM (GMT 0)
Thanks Garzie!
I think the usgobuy looks like it would solve the problem.

Never heard of it before.
Posted 10/20/2022 1:33 PM (GMT 0)
i used them recently for car parts from the USA - worked ok

Post Edited (Garzie) : 10/20/2022 6:52:49 AM (GMT-7)

Posted 10/20/2022 6:09 PM (GMT 0)

Garzie said...
i used them recently for car parts from the USA - worked ok

I thought you lived in USA
Posted 10/20/2022 6:29 PM (GMT 0)
Nope - i worked in California a long time ago - but i live over the pond in the UK
Posted 10/20/2022 9:46 PM (GMT 0)

Garzie said...
Nope - i worked in California a long time ago - but i live over the pond in the UK

Did you like California?
Or do you prefer the UK
Posted 10/20/2022 11:01 PM (GMT 0)

Girlie said...
I think I will wait a couple more weeks - it’s 9 weeks off now.
I will do the protocol after 11 weeks.
If I still don’t feel symptomatic at that time AND I don’t herx then I will just end my treatment.

I would think that after 3 months off with no symptoms returning - I could conclude I don’t have active infection….

Girlie, that is amazing you have been able to go that long without a relapse of symptoms. I just wanted to say congrats!
Posted 10/21/2022 12:04 AM (GMT 0)

Girlie said...

Garzie said...
Nope - i worked in California a long time ago - but i live over the pond in the UK

Did you like California?
Or do you prefer the UK

i liked the weather and the great outdoors, beach, mountains, snowboarding, etc

but i knew v few people there - except the people who worked for me - who were fine - but after working 50-60hrs a week with them - i really needed a break / change

it was a bit of a crazy time - although i had moved there - i was on a plane to china every few weeks and the UK in between.

i found it strangely hard to connect with people in California - whereas i find Canadians entirely different smile
Posted 10/21/2022 1:42 AM (GMT 0)

Lymie24 said...


Girlie, that is amazing you have been able to go that long without a relapse of symptoms. I just wanted to say congrats!

Thanks Lymie24!
Posted 10/21/2022 1:44 AM (GMT 0)

Garzie said...


i found it strangely hard to connect with people in California - whereas i find Canadians entirely different smile

Lol!
Posted 10/21/2022 1:49 AM (GMT 0)
We have it all (in my opinion) where I live.
We are 5 minutes drive to the ocean beaches, 15 minutes to lakes to swim in, as well as rivers to fish.
We are in a smaller city but have everything we need here.
… forgot to mention - the ski hill (downhill and cross country) is about 45 minutes from our home.
Posted 10/21/2022 6:39 AM (GMT 0)
Hi Girlie - not sure if this helps, I recall you mentioning you're in BC and have worked with Dr. MB before. Could she not write you a prescription maybe? She seems pretty willing to supplemental support in conjunction with other doctors, at least she has been for me. Recently said if I need a prescription just let her know. Might be worth considering if it saves you some money, unless these are meds that can't be obtained here?
Posted 10/21/2022 6:53 AM (GMT 0)

morningstars said...
Hi Girlie - not sure if this helps, I recall you mentioning you're in BC and have worked with Dr. MB before. Could she not write you a prescription maybe? She seems pretty willing to supplemental support in conjunction with other doctors, at least she has been for me. Recently said if I need a prescription just let her know. Might be worth considering if it saves you some money, unless these are meds that can't be obtained here?

That’s an idea, but my appt with her was like 6 years ago -
It would be awkward to go to her and ask her to prescribe abx for me…after all that time.
I pretty much rejected her after a couple of visits. At that time she wasn’t really knowledgeable about Lyme treatment.
I had thought about my local GP. He is from the US and has discussed Lyme with me.
He might be willing to give me a few meds.
Posted 10/21/2022 7:06 AM (GMT 0)
Lol that's fair. She's pretty much only focused on chronic infection and complex illness now, and while I don't agree with all her approaches I do have a decent amount of faith in her, so even if you go for an initial visit to touch base and see how she can support that's still cheaper. Her visits are pretty pricey too, but definitely cheaper than shelling out 5K. I saw her about a month ago, and while she's not my primary doc for this, she said to let her know if I need abx scripts because my other doctor could get in trouble for prescribing them. Seemed to want to support in that regard so that's nice. edit to add: she's also doing telehealth so you wouldn't have to travel.

Or you could try the LLND in Van maybe...forget his name. Dr. C? Not Dr. M, I know he's no longer practising. And yeah, worth a shot with your GP, worst he could say is no I guess (well...maybe that's not the worst he could say, as most of us probably know, lol :p)
Posted 10/21/2022 9:12 AM (GMT 0)
“ she said to let her know if I need abx scripts because my other doctor could get in trouble for prescribing them. Seemed to want to support in that regard so that's nice. edit to add: she's also doing telehealth so you wouldn't have to travel.“

So ND’s don’t get in trouble for prescribing the abx but the RN’s do?

I will mull it over…

Thanks for your suggestions - I appreciate it!

I haven’t been in contact with Dr C in a long time too - a few years.
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