panicking in Canada

[Denyse]

There is lots of generic Minocycline available and it is fully covered for me, I just don’t want generic because it is not working for me and didnt in the past either, I didnt see improvement till I went on Brand Minocin by stiefel and that is what put me into remission. Once I could no longer get Brand i have been trying generic and none of it is working totally, I am starting to see my symptoms slowly return.

CANADIAN LIVING IN CANADA
Diagnosis/ Diffuse Scleroderma since 05/2006
Current Meds: Methotrexate, Minocin, Zantac, Rabeprozale, Zopiclone
Current Supp: Nattokinase, Serrapeptase, COQ10, Milk Thistle, Folate,, B12, D3, Melissa, UP4 probiotics, N-A-C
medical MJ
Current Extras: FIR

[Denyse]

I dont understand? PhilC? you live in the states, why would anyone want to know about generics from Canada?

CANADIAN LIVING IN CANADA
Diagnosis/ Diffuse Scleroderma since 05/2006
Current Meds: Methotrexate, Minocin, Zantac, Rabeprozale, Zopiclone
Current Supp: Nattokinase, Serrapeptase, COQ10, Milk Thistle, Folate,, B12, D3, Melissa, UP4 probiotics, N-A-C
medical MJ
Current Extras: FIR

[Maz]

@Denyse wrote:

I didnt see improvement till I went on Brand Minocin by stiefel and that is what put me into remission. Once I could no longer get Brand i have been trying generic and none of it is working totally, I am starting to see my symptoms slowly return.

Question is, would Canadians be allowed to import drugs from the US? I don’t know the answer to this, but if so, then it occurred that it might be possible to get your prescribing doctor to call Triax pharmaceuticals and ask them if they can send you brand Minocin direct at a reduced, “compassionate” cost covered by OHIP. Some folk with SD get their Triax Minocin approved by insurance by playing the reflux card, because the pelleted brand tends to dissolve lower in the gut and is less prone to coming back up and burning the esophagus.

http://www.triaxpharma.com/which_page_13.html

May be I’m just scratching the bottom of the barrel to find a solution for you. It’s legal in the US to import up to 3 months of rx’d drugs for personal use and Canada and the US have trade agreements that should be reciprocated, but who knows?

Just trying to figure some way for you to get the brand again, though not sure if it’s helpful or not. I’ve gotta admit.

[cavalier]

Interesting Denyse in that you dont feel that generic minocycline works for you – as I feel my generic or at least this current brand anyways is not working for me – I got much more help from the IV’s & since returning to the minocycline – I have had a couple of new setbacks. I think everyone is different & of course how deep seated their bacterial infection is.

I hope the mexican med. helps.
Best Jill systemic SD

[Denyse]

Thanks Maz, I just received word back earlier today from a US pharmacy that they can only fill prescriptions within the US border, this was an online Pharmacy. It is a 3 1/2 hour drive to the US border, I may just phone a pharmacy in the border town and see what they have to say about this, maybe I will have to pull out my american birth certificate.

CANADIAN LIVING IN CANADA
Diagnosis/ Diffuse Scleroderma since 05/2006
Current Meds: Methotrexate, Minocin, Zantac, Rabeprozale, Zopiclone
Current Supp: Nattokinase, Serrapeptase, COQ10, Milk Thistle, Folate,, B12, D3, Melissa, UP4 probiotics, N-A-C
medical MJ
Current Extras: FIR

[PhilC]

Hi Denyse,
@Denyse wrote:

I dont understand? PhilC? you live in the states, why would anyone want to know about generics from Canada?

I didn’t research Canadian generics for my own benefit, but for the benefit of others.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Denyse]

I have heard from somewhere before that Doctors in Canada can apply to our Government to get a permit to have patients get their medication directly imported from the manufacter, actually I thinky that is what my rheumy did for one of the medications that I was on for a short while after being hospitalized in 2010. So I am going to talk to my doctor and see about the possibility of getting this done through Triax pharmaceuticals. My only question would be wether my insurance will cover it being it is not a DIN. Is anyone on here able to give me the NDC numbers just so I can call them and see if it would be covered?
I also noticed that there is injectible Minocin, has anyone tried this through IV?

CANADIAN LIVING IN CANADA
Diagnosis/ Diffuse Scleroderma since 05/2006
Current Meds: Methotrexate, Minocin, Zantac, Rabeprozale, Zopiclone
Current Supp: Nattokinase, Serrapeptase, COQ10, Milk Thistle, Folate,, B12, D3, Melissa, UP4 probiotics, N-A-C
medical MJ
Current Extras: FIR

[Denyse]

So what you were saying might work Maz, Thank You for mentioning it. It got me brainstorming.

CANADIAN LIVING IN CANADA
Diagnosis/ Diffuse Scleroderma since 05/2006
Current Meds: Methotrexate, Minocin, Zantac, Rabeprozale, Zopiclone
Current Supp: Nattokinase, Serrapeptase, COQ10, Milk Thistle, Folate,, B12, D3, Melissa, UP4 probiotics, N-A-C
medical MJ
Current Extras: FIR

[Maz]

@Denyse wrote:

So what you were saying might work Maz, Thank You for mentioning it. It got me brainstorming.

Really hope you can work this out, Denyse. Will keep fingers crossed for you that it will be approved for import and covered. If your doc can build a strong enough case, seeing your progress on brand before and how you’re backsliding now, hopefully it will be. Putting it out there for you. It’s just a shame that when we’re so unwell we have to also navigate all these seemingly impenetrable obstacles. I kind of know how you feel…I have great insurance through my hubby’s job, but my coverage for treatment just got shut down as my diagnosis is “Lyme,” which insurance companies here love so they don’t have to pay out. Everything, my orals and IVs are not being covered in spite of the fact that I am so improved on this tx and heading to remission and could well save my insurance company a lifetime of expensive drugs for RA.

You’re kind of acting as a maverick or trail-blazer for other Canucks right now, because if you can figure this out then it could help a lot of others in the same boat. I’m rooting for you! 🙂

[Denyse]

PhilC, I understand now. I will post whatever progress I make as far as finding what is working for sure. TY.

Help from someone out there that has done this already:: I have an IGeneX test Kit ……. I am not sure the lab I go to will know what to tick off on the form, does anybody know what tests I should be getting on the forms???

When talking with my pharmacist today I am finding out that there is a lot of people with lymes in this Northwestern Ontario town. They are also going to try making up the capsules from pure Minocycline powder, until I can find a source of Brand Name.

Thanks Maz, I am praying that this turns around soon, I would imagine I will be paying out of my pocket too if I am diagnosed with Lymes. My doctor is pretty good about IV’s though, she always did them herself in the past when I was on the weekly IV’s I did not have to pay a cent for treatment, never got any bills for it, so hoping it may be the same if I needed them for Lymes 😀

I had a regular test done for Lymes and it showed up negative, but then I am finding out that it takes being on a treatment with specific medication that causes your body to make antibodies and that is how it shows up on a regular test. Is this correct? Sorry, I am not up on all the medical terms.

CANADIAN LIVING IN CANADA
Diagnosis/ Diffuse Scleroderma since 05/2006
Current Meds: Methotrexate, Minocin, Zantac, Rabeprozale, Zopiclone
Current Supp: Nattokinase, Serrapeptase, COQ10, Milk Thistle, Folate,, B12, D3, Melissa, UP4 probiotics, N-A-C
medical MJ
Current Extras: FIR

[Maz]

@Denyse wrote:

Help from someone out there that has done this already:: I have an IGeneX test Kit ……. I am not sure the lab I go to will know what to tick off on the form, does anybody know what tests I should be getting on the forms???

Hi Denyse,

Most folk just start out with the IGeneX western blot – test #s 188 (IgM) and 189 (IgG) on the forms, which you can check yourself. In fact, you can fill out all the paperwork enclosed and just have you doc sign off on the lab requisition. You then just take this lab order to your usual blood draw place, they draw and process the blood as per instructions in the kit and pack it in the packing materials for you. You then just add your paperwork and credit card info or check into the return mailer and drop it off at your local Fed Ex drop-off. Best to get blood drawn early in week so it’s not sitting in some mail depot over the w/e. Results are returned to the ordering doc within about 2 to 3 weeks and important to get a hard copy (test result comes in two parts so should be two sheets of results – one for IgM and one for IgG), even if doc says they are “negative,” as some antibody bands are so specific to Lyme they can be due to nothing else. If further tests are needed to confirm anything, then this can be faxed thru to IGeneX, as they store your blood sample for a month or two, but most often there is no need to confirm antibody bands, as even an Indeterminate reading means there is some antibody present…you can’t be “a little bit pregnant” in this type of scenario, because on the really specific antibody bands, if your body is reacting to some outer surface protein of the bug, then it means there is something there, but just not enough on the test day to pick up for a full positive. JulieKatie can tell you more about this, as her daughter’s western blot was neg and then showed up positive on the next test she had run. These tests are just one moment in time and Lyme is a sneaky little blighter…hides from the immune system, so if the immune system can’t find the bug, there won’t be any antibody to pick up. This is why it is one of those infections where IgM (present infection) and IgG (past infection)don’t follow the usual rules, because Lyme waxes and wanes and, when it waxes, it can look like a fresh infection…when it wanes, it can look like past infection or no infection. So this test is taken by LLMDs to be a nice confirmation if positive, but a dx of Lyme shouldn’t be dismissed, if negative, because Lyme is primarily a clinical diagnosis…in other words, everything is taken into account – symptoms, patient history, history of past tick exposures, living in a Lyme endemic region, and any significant antibody bands on the western blot. If you need help interpreting the results, we have some links we can share with you when you get your hard copy.

I had a regular test done for Lymes and it showed up negative, but then I am finding out that it takes being on a treatment with specific medication that causes your body to make antibodies and that is how it shows up on a regular test. Is this correct? Sorry, I am not up on all the medical terms.

Not really sure what you mean by this, Denyse? As the western blot is a test that picks up antibodies, some drugs can alter results. E.g. immune-suppressive meds will lower the body’s ability to mount an attack on any bugs in the body, so fewer or no antibodies will be produced. So, it’s probably not a good idea to be on these when taking the test. I didn’t have to stop my abx, however, when taking the test. Lyme, itself, is highly immune-suppressive, which is why sometimes when people get a questionable western blot result, they’ll then run the CD57 test, which is a test that is specific for checking immune function in cases of Lyme disease. People with low readings on the CD57 test (below 100) are considered positive for Lyme. I’m not sure how you could get this test run in Canada, however, because it’s a really time-sensitive test and blood needs to be expedited to certain labs in the US within a short period of hours in order to get an accurate result.

I would imagine I will be paying out of my pocket too if I am diagnosed with Lymes. My doctor is pretty good about IV’s though, she always did them herself in the past when I was on the weekly IV’s I did not have to pay a cent for treatment, never got any bills for it, so hoping it may be the same if I needed them for Lymes 😀

Yes, unfortunately, travel would be needed to see a LLMD unless your doc is willing to consult a LLMD on your behalf. She sounds amazing, so it’s possible she might. If it gets to this point, she can contact ILADs and ask them for a physician consult for you. Doctors can also apply for the ILADs physician training program.

http://ilads.org/lyme_programs/lyme_training.html

There is also a Canadian LLMD in NYC who would probably consult with her on your behalf. Thing is, ticks are “nature’s dirty needles,” so often it’s not just Lyme but other TBDs (tickborne diseases) in the mix that also need to be treated, so this is why a full work-up by an experienced LLMD would be helpful at least at the outset to ensure all bases are covered on suspected infections…then a treatment plan could be worked out.

It’s worth printing out a copy of the ILADs and Burrascano treatment guidelines for Lyme to read and will give a very good overview of testing, symptoms, treatments for TBDs, etc. It’s very different from low dose AP. 😉

http://ilads.org/lyme_disease/treatment_guidelines.html

Hope that helps, Denyse. Let us know if when you get your results back and would be happy to send you those western blot interpretation links.

[kater]

I just got the CD57 done in Canada. My LLND did it on a Monday and shipped it express with no problem. It came back at 38 😥
Got other bloodwork back today and my alkaline phosphatase has gone out of range. Very disappointed that the antibiotics are effecting my liver so early in this game. My great doc emailed me in half an hour and added milk thistle and something else ?? to my routine and said retest in 2 weeks. Trying not to worry (because it never helps anything) and my AST and ALT are still okay. I am very interested to know if you find a way to get meds imported into Canada!! 😉
What a journey.
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[Denyse]

okay, Thanks Maz…. Also, I am going to get a copy of the results of my last test, because I was told it was a western blot. I know they drew the blood early in the week and they were saying I had to pay for it, then they decided it was covered by OHIP, and I never received a bill.

Maz, wow, just wanted to say I read you personal pages of your journey, you are one strong women.

I def want to get a LLMD to work with my Doctor, I know she will be open for it, as well as an AP Doctor. She is very busy, as she is also an anesthesiologist in OR, so she is a busy woman, and they run her ragged here.

Can’t Thank Everyone enough for all the help figuring this out.

CANADIAN LIVING IN CANADA
Diagnosis/ Diffuse Scleroderma since 05/2006
Current Meds: Methotrexate, Minocin, Zantac, Rabeprozale, Zopiclone
Current Supp: Nattokinase, Serrapeptase, COQ10, Milk Thistle, Folate,, B12, D3, Melissa, UP4 probiotics, N-A-C
medical MJ
Current Extras: FIR

[matv]

Denyse, im just happy you’re getting support from a doctor who cares and is open minded ..

I suspect my doctor in Ontario knows something not-normal is going on with me but I can also tell that he’s inexperienced in this field and would rather let the rheumtologists do their job. He wasn’t even convinced I had reactive arthritis at first .. “where’s the proof” he said. He then squeezed my right foot lightly which out me in tears and then said when I got back to BC I should get a bone scan. All that did was prove there’s edema in both knees and ankles and some inflammation in other parts of my body. I suspect he knows something else is going on since I had a high positive ANA, but is such a busy family practice that I don’t think he’d be willing to even accept any thing the roadback foundation supports as “true”

So its awesome you have a doctor who is covered under OHIP that is willing to go through these ropes with you

I just arrived in Victoria BC .. and my appointment to see one of the few practicing Canadian LLNDs is may 9th in Richmond BC. Im excited but government health care wont pay for these visits…

[Maz]

@Denyse wrote:

okay, Thanks Maz…. Also, I am going to get a copy of the results of my last test, because I was told it was a western blot. I know they drew the blood early in the week and they were saying I had to pay for it, then they decided it was covered by OHIP, and I never received a bill.

Maz, wow, just wanted to say I read you personal pages of your journey, you are one strong women.

I def want to get a LLMD to work with my Doctor, I know she will be open for it, as well as an AP Doctor. She is very busy, as she is also an anesthesiologist in OR, so she is a busy woman, and they run her ragged here.

Can’t Thank Everyone enough for all the help figuring this out.

Hi Denyse,

You might want to check to ensure that first western blot was run thru IGeneX or whether it was just a standard test. While IGeneX is preferred by LLMDs, as it is much more sensitive and includes extra antibody bands, the standard test is notoriously inaccurate, missing half of all cases. Thanks for reading my Progress Thread…I always forget to update it! 😳 I think I mentioned that although I was ‘fortunate’ to know I had Lyme, with two bulls-eyes, my ELISA came back questionable both times. The standard for testing here in the US is to use two-tiered testing. What this means is that they begin with a basic ELISA and, if positive, they confirm with a western blot. My ELISA came back equivical, so my Internist (now fired, who should have realized a bulls-eye = Lyme no matter what tests say) didn’t bother with a western blot, which is slightly more sensitive (but still not as good as IGeneX). I was ignorant of everything about Lyme at the time and only learned later that he should have treated me on the spot when he saw the bulls-eyes. 😥 It was this delay in treatment that my LLMD believed caused me harm and led to the triggering of my RA several months later.Most people don’t experience such a swift onset, but my Mum passed away from breast cancer within 5 weeks of diagnosis during this time and I was under tremendous stress and shock from her swift passing. It’s so much harder for those who were infected years or even decades earlier to make the connection.

I’ll send you the contact info for the Canadian LLMD in NYC in a PM in case it might help, but would also suggest your doc contact ILADs on your behalf, if it seems like Lyme (which is now being dubbed MCIDs or “mixed chronic infectious disease” syndrome) may be in your mix. Dr.C. in BC, who Kater and now Mat are going to see may also consult with your doc….also Dr. A. in Ottawa (her info already sent to you).

Hi Kater, thanks for reminding me that you got your CD57 run through your LLMD in BC. I think it helps that he is a LLMD and knows the ins and outs of how to get this very time-sensitive test run and perhaps he can share the lab he used with Denyse’s doc, if it comes to this test being needed for her? Thanks for sharing this!

Mat, keeping my fingers crossed for you on May 9th! Let us know how it goes for you.

[Author]

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