Ontario testing to confirm Igenex result - help needed

... also have been taking a Lyme supplement with Japanese knotwood and Cat's Claw

I can't help regarding the test they ordered, but taking herbs should encourage your antibodies to show up on the test, if anything, so I wouldn't worry about that.

"Either go out of the country, or find a LL naturopath to help."

OR...stay in the country,but go out of province.

I doubt you will have a test result that satisfies the Internist. Even so, he/she wouldn't offer effective treatment, anyway...

Just to add, I had a rhematologist here in Ont. who claims she has seen real Lyme working outside of Canada, and that my son does not have it., more incredible tho was that she said what is going on with people being diagnosed and treated in the U.S. is all just a money making scheme. Needless to say she discharged my son as her patient at the end of that appt.

Girlie said...
"Either go out of the country, or find a LL naturopath to help."

OR...stay in the country,but go out of province.

There are Canadian MD's that treat lyme/co out of province?

Toronto_M, your posts are from mid year, I hope you have been able to find a LL medical professional that is willing and able to support you with a range of treatment options. In case you have not I'll provide a few comments.

Your IND bands effectively indicate a weak positive. Your test results maybe insufficient for a formal positive result but unless the band responses are explained by finding evidence of some other infection these tests indicate you have an immune response to a B burgdorferi infection and likely various co-infections due to the same tick bite(s). My own repeated IGeneX WB were similar, with a marginal CD57 and positive antigen urea. None of the PCR, co-infection, etc. testing was positive, all at substantial expense.

Even though IGeneX test results have been demonstrated to be reliable and accurate, the Infectious Disease community follows CDC / IDSA dictates and leads other mainstream medical community members down this same path. If an ID specialist was to treat you it is most likely the antibiotics and duration would be inadequate, as they would follow the CDC guidelines.

There seem to be very few MD in Canada that are willing to support Lyme Disease treatment per an ILADS guideline. I found a southern MB doctor, with Lyme Disease experience, that was willing to see me, who provided a clinical diagnosis of Lyme Disease but as I am in Edmonton so not living in, or near, his community he was reluctant to treat me. My own doctor would support me with referrals and laboratory requisitions but would not directly treat me, especially with ID reports that stated I did not have Lyme Disease.

I explored a range of treatment options. Typically international medical tourism is focused on treating acute conditions that respond quickly to therapy, such that I found no alternatives other than the USA based support for Lyme Disease treatment. I found ND in the Pacific Northwest of the USA that were willing to treat Lyme Disease, even those that had no experience were willing to take me on as a client. There were various MD with Lyme disease experience willing to take on a Canadian patient, but the travel and related expenses were substantial. Although my preference was to find a MD, the most convenient and practical treatment option was a Calgary based LL ND, with ILADS training and a BC license with antibiotic permit.

The ND are not responsible to the provincial medical association or the various medical specialists, so they are generally more willing to act independently of the Infectious Disease community. In fact it is the Infectious Disease community that has created this opportunity for ND to step in. The ND consults, antibiotics, supplements and probiotics are all generally out of pocket, unless covered by supplemental insurance. Note that there are ND with a BC license and antibiotic permit practicing in many provinces across Canada.

My history suggested I had been chronic for over a decade, so treatment was expected to be long and uncertain. As of November I had completed 36 months of an antibiotic cocktail (changed every few months), a range of herbals, supplements and probiotics. With potent daily probiotics I have had no GI issues during this time. Treatment was interrupted mid November to test my progress, which has improved but is not fully resolved.

My best wishes to you with securing the treatment you require. Please respond if you have any questions.

Girlie, some further background and my reply to your specific questions:

Background: My known exposure was in fall 1998 while living in Bellingham, WA, but could have been much earlier. An atypical EM with vesicular eruption in 1998 was not diagnosed a the time but treated, inadequately, with an antibiotic. My subsequent symptoms were however in various ways similar to earlier vague health issues suggesting I was likely infected as a child while living in Sarnia, Ontario. Over the years I was treated with antibiotics, which improved my health for a period of time, only to relapse. With a diagnosis and treatment starting in late 2012, I was chronic for more than a decade, perhaps several decades.

Co-infections: Testing did not find any co-infections but various issues prior to and after diagnosis suggest a range of co-infections. The nature of tick spread disease is such that co-infections are a near certainty. If a tick bite does not result in B Burgdorferi infection (which is the key bacillus and basis for most testing) it is nonetheless likely that other infections result, as the tick carries all manner of pathogens accumulated from its parent (a reported ~ 20% rate of transference of pathogens from parent to nymph) and prior feedings. My testing for co-infections was however extensive with a broad range of IGeneX and SpiroStat testing reported as negative. This is however most likely indicative of the difficulty of accurate co-infection testing than my having no co-infections.

Progress testing: None has been undertaken. It would be expensive and the results likely ineffective, if not misleading. The Alberta provincial screening testing, the standard low sensitivity EIA, was repeatedly negative in 2012. The IGeneX WB was indicative of a weak positive which is common with long term chronic disease, and only an antigen urea reported as positive. At this time Lyme Disease is best diagnosed clinically and monitored with symptoms, even if subjective.

Symptoms, Current Status: In various ways I have improved, but the problem with treatment that spans 36 months is that it is difficult to maintain an objective sense of my initial condition and the progress of my symptoms. I am not symptom free, but it seems appropriate to step back from treatment even if temporarily.

Lyme Disease, which some clinicians, are referring to as Lyme Complex, is a truly persistent infection. The main pathogen, B burgdorferi is a complex bacillus, with its ability to form a cyst, or cell wall free L-form, a preference for low blood circulation tissues, and the long list of known co-infections, all hint at the difficulty with treating this complex condition.

Remain optimistic but also be realistic and persistent.

My best wishes to you with your treatment!

This is a more a marathon than a sprint, so to recorded your previous week's typical status is likely more than adequate record keeping.

My ND would routinely ask me to rate how I feel, which I disliked answering. Unusually in hindsight when next asked I would state my regrets with respect the preceding advise and mark it up to how serious low I was at the start, that as I improve my perspective changed.

Unfortunately the various treatments are improvised with available medications, herbs, supplements, etc., but much better than nothing. Obviously there is much more research and development required, but that is likely hindered by the CDC / IDSA position and the ongoing controversy.

Best wishes.

Hi LymeShadow, welcome to our community!

Are you also a Canadian....and do you have Lyme disease?

I'm in BC - and we do have more options out here...more acceptance. (My GP is supporting my antibiotic treatment with monthly blood work...and has not questioned my long-term abx treatment...not yet anyway)

Are you aware that you can get the Igenex test without going to the U.S.? Just order the test kit and get a Dr. to sign for it.

It's most likely Lyme and Bartonella...(and maybe more)

When was the tick bite? (If you don't mind sharing)

We suggest all new members take a look through the "New to Lyme?..Start Here!" thread at the top of the page. It's packed full of useful information.

Are you doing a lot for detoxing?