lymed out

my quest to getting these suckas out!

Archive for the tag “igenex”

Just as expected.


That fax worked yesterday. Someone called back, however stupid me I had my phone accidentally on silent. I have the voice to text feature on my cell phone and this is what I get.

id

Nice huh? Just to be safe, I checked my voice mail anyway to make sure I didn’t have lung disease. I hate checking voicemail, it takes sooooo long to call in, enter your password, press 1, blah blah. That is why I have the voice to text feature! Which of course as you can see above is a fail.

And just to be double safe, I called her extension and confirmed verbally that the negative results were a “good thing”. “Yes!” she exclaimed, “You don’t have Lyme disease!”

Yay! Knowing that the Canadian Health Care System and successful Lyme testing is an oxymoron, this negative result has made me happy. I am not in any position now to try to disprove it and complain. My last and final test will be to retest with Igenex. But that will cost $200 and as much as I want to do that right now, that $200 can be better spent elsewhere.

Again, follow me on my new blog yada yada yada.

Lyme Awareness Poster for you to Share


What I really should have been doing was work, but my brain was telling me to design this poster. I was thinking more like an infographic, however I wasn’t in the mood to draw stick figures of doctors poking and prodding while scratching their heads, so instead, I opted to use just words.

Hope you enjoy and please feel free to share with everybody and anybody who will listen.

icon_pdf If you want a high res PDF of this file to print and stick over all the trees in your neighbourhood, click here. The dimensions are 8.5 x 17.

lymedout

Thanks to Paula over at The Lyme Maze for helping me proof read this with her sharp eye capabilities.

It might cost me $7695 to have my own baby.


states

I ventured off to the States to see my Doc. This will be my 3rd in office visit and my 1 year appointment. Overall, it went very well. When has it not? My doc is the best. She makes you feel so relaxed and spends time answering your questions, sharing her expertise. And what’s best about her is that she admits she doesn’t have all the answers. Lyme is such an unknown realm. I can tell she keeps really updated with new findings and research. That is very important as Lyme keep evolving.

So I had to go off meds for about a week and a half due to this recent bugger here. Which was good because I went back and gorged on meat like it was going out of style. Symptom wise, they were slowly but surely creeping back. The body buzzing, slight tremor feeling and vertigo all came back to pay me a visit while on my little medication hiatus, reminding me that their fun wasn’t over.

So I will continue on the same treatment plan now which is kind of unpublished so I won’t go into too much detail however it involves the vegan diet and I will be targeting Babesia specifically with one antibiotic and a mammoth supply of supplements that will make me go bankrupt and cry.

I had documented on my progress chart that I was at about 85-90% and she was very happy to hear that. I asked how much longer treatment will be and was told maybe end of this year or next year. “WHATTT?” I screamed! That took me by surprise! This is what she keeps telling me over and over and I need to print it off and paste it on my forehead.

Lyme is not about tests. It’s about symptoms.

I have spoken to many other patients who see the same doc and who were put on Mepron, so I asked why I was never put on Mepron. And Mepron will for sure drain your bank account like a sucking leech, I’ve heard that it is $1000+ a month. So anyway, the reason was most likely due to my symptoms at the beginning. If a person was really fragile, then they would most likely be put on Mepron. If the person was functioning and their immune system was doing some work, then they would most likely be put on the pulses. Also findings were if people were put on the pulses and they were really sick in the beginning, they would have severe die-off. So the Mepron is to lessen that load so to say.

So, the reason for my dramatic over the top title of this post.

I asked when would it be possible for me to have another kid. You know, to stop all those stupid questions from people asking me when I’m having another kid. I usually answer these questions with another question like “When are you having YOURS?” Who cares if the aunt is in her 70’s. Read more comebacks here. Some are brutal.

Well, here is the deal if you don’t know. There are many cases of congenital Lyme. I think that is how my 6 year old may have been exposed. For me, I don’t think I am quite ready yet at this stage but if I did later on, and depending on my symptoms then, especially if the babesia symptoms were still lingering, she will have me on a couple of antibiotics AND the Mepron. Mepron at the pregnancy dosage would cost about $7000 for 9 months. Kill me now. Also, she said that you can get the cord blood tested. Where? I don’t know. If you know how to do this in Ontario, someone please tell me, I’m too lazy to search right now. I just did 90 squats.

So, here is my 30 day squat challenge. That is because I need to look Bikini Hot when we go on our cruise in 3 weeks. After all, I gained 10 pounds and my skeletor profile is no longer. BOO.

Here is the squat chart for you if you feel motivated.

Day 1 50
Day 2 55
Day 3 60
Day 4 Rest
Day 5 70
Day 6 75
Day 7 80
Day 8 Rest
Day 9 100
Day 10 105
Day 11 110
Day 12 Rest
Day 13 130
Day 14 135
Day 15 140
Day 16 Rest
Day 17 150
Day 18 155
Day 19 160
Day 20 Rest
Day 21 180
Day 22 185
Day 23 Rest
Day 24 190
Day 25 195
Day 26 200
Day 27 Rest
Day 28 205
Day 29 210
Day 30 215

So overall the appointment went well. $1295 Cha ching! Damn! That is a frigging plane ticket to the Maldives. But of course, Hubby always puts things in perspective for me saying if I don’t get well, there will be no Maldives.

While we were at my docs, I also got him tested with the Igenex #188 and #189. Just because. And I don’t tell anyone because they will think I’m paranoid and crazy. But screw them. While the nurse was drawing his blood, my 6 year old was looking on and the Nurse says to him, “Isn’t your daddy brave?” My 6 year old looks at her and says “Um, I did this last year.

In other Lyme news, guess what? The Niagara Falls lights AND the Peace Bridge are going to turn green on May 17, 2013!  Marlene is an awesome Lyme Advocate. See more info here as well as more info on the Brampton Lyme Walk that she is organizing.

This post is very scattered and off tangent, not my usual style, but I have been on this computer now for 12 hours straight and if I am here any longer, I might just turn into a computer.

So it’s not all about me anymore.


If it’s not one thing, it’s another. From 2 posts ago, I mentioned that I took my 5 year old to have him tested at my LLMD’s office with the IgeneX Western Blot. I got the results yesterday (shown above). As I did this mainly for the reason to have peace of mind, there really is no peace. The bottom line here is that he has been “exposed “ to Lyme and according to these results, it shows that he has made antibodies specific to Borrellia. Remember IND means a small yes. More details below.

Source from: Western Blots made easy

Igenex Western Blot Break Down by band

• 9 cross-reactive for Borrellia
• 12 specific for Bb
• 18 highly specific to Lyme (from the link above by Dr. James Schaller, if this band alone is positive, you have Lyme)
• 20 cross-reactive for Borrellia
• 21 unknown
• 22 specific for Bb, probably really the 23/25 band
• 23-25 outer surface protein C (OspC), specific for Bb
• 28 unknown
• 30 unknown; probably an outer surface protein; common in European and one California strain – Has cross-reactivity with several different types of viruses
• 31 outer surface protein A (OspA), specific for Bb – Has cross-reactivity with several different types of viruses
• 34 outer surface protein B (OspB); specific for Bb
• 35 specific for Bb
• 37 specific for Bb
• 38 cross-reactive for Bb
• 39 is a major protein of Bb flagellin; specific for Bb
• 41 flagellin protein of all spirochetes; this is usually the first to appear after a spirochete infection but is NOT specific to Lyme (i.e, other spirochete diseases have flagellas)
• 45 cross-reactive for all Borellia
• 50 cross-reactive for all Borrellia
• 55 cross-reactive for all Borrellia
• 57 cross-reactive for all Borrellia
• 58 unknown but may be a heat-shock Bb protein
• 60 cross reactive for all Borrellia
• 66 cross-reactive for all Borrelia, common in all bacteria
• 83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
• 93 unknown, probably the same protein in band 83, just migrates differently in some patients

Further excerpt by Dr. James Schaller, M.D. on Western Blots made easy.

Simply, if you are blindfolded and touch the side of an elephant, you may not be sure it is an elephant–perhaps this is a rhino? This is the 41 band. It is from the flagella’s, the parts inside Lyme that help it move—they get a lot of attention in the body, in the same way a whip snaps and gets attention in the hands of an expert user. However, the 41 antibody is not specific to Lyme, since many organisms have flagella.

Now, what if you touch this same elephant on its tusks or on its long peanut-eating tubular nose? You know it is an elephant. Period. One touch and you are certain, because these parts are very unique to this huge animal. This is Dr. Jones’ point. It you see a Western Blot 18 antibody that has a positive, you have Lyme. You do not need to check any other bands, because the 18 antibody is highly specific to Lyme—just like double tusks on an elephant.

What Do the Number of Pluses Mean?

IGeneX gives levels of antibodies. One + means you have some antibody of that type. A single positive is plenty strong, because that is the same level of brightness seen in the positive control run next to your blood test. This means they run a fake sample with all 13 proteins which should show always show up as 13 positives. It helps confirm no error in the testing.

If you have a ++ or a rare +++, this means you have a very large amount of antibody of that type. However, Lyme ruins immune system functioning and the number of positives sometimes goes up with treatment and healing of the immune system. People with no aggressive past Lyme treatment, should be lucky their body has made any antibodies at all, since Lyme is very good at both hiding from the immune system and hindering it.

Also, many people have “IND” or indeterminate findings on an antibody. This means the lab tech is seeing something, but is not ready to call it a clear positive. Consider a positive in the level of a single + to be a sharpie flair black line. I consider the IND to be a black pen line.

In my experience, many of these patients also show high Epstein Barr labs, which means this common infection is not in check and the immune system is very weak. And after we treat the patient, the IND sometimes becomes a clear + which means you now have new and clear antibodies against this part of the Lyme bug. I consider all IND’s as weak positives. This is my opinion.

Currently, IGeneX does not use Dr. Jones’ criteria. I have not asked them why. Perhaps because they are accountable to different laboratory regulating agencies and in general the government is perhaps decades behind real-world clinical medicine. Apparently, the government and many insurance companies blindly follow 14 individuals who actually think they can control 800,000 physicians and 300 million Americans.


So my questions are:

  1. Could this have been passed in utero? If you compare my IgeneX results with his, you will see we have the same bands marked, his is IND, mine is ++. I showed symptoms 3 years after he was born, so does this mean that my Lyme was dormant in my system? Or could we have been vacationing together and got this? All unknown.
  2. Do I treat him if he has absolutely ZERO symptoms and awaken a potential beast? Or do I treat him when symptoms start coming if at all? At which time from what I read, it can be either slow or fast.

My LLMD’s response:

All you can say from a Lyme blood test is that there has been exposure to the Borrelia Burgdorferi (Lyme) bacteria if there are either IND (indeterminate= weak positive) or +’s (positive’s) next to the ** bands (except for band 41, which is + in all Lyme patients, but is not specific for the Lyme bacteria – it can be from bacteria in the mouth). So an IND or + in bands 23-25, 31, 34, 39, or 83-93 means they have been exposed to the Lyme bacteria. (There is no mention here of Band 18)

You cannot say someone has Lyme disease from a test result that says “positive” because the only way to make that diagnosis is clinical symptoms. Some people have a positive test but no symptoms – they do not have Lyme disease, they have been exposed to the Lyme bacteria but without symptoms they cannot be said to have Lyme disease.

LLMD’s Bottom line: Don’t treat based on labs, treat on symptoms. This brings me back to what my LLMD told me 2 weeks ago. “ Be weary about trusting tests. It is not about proving it on a piece of paper. It’s about how you feel.” Of course, this is only in relation to Lyme.

My Lyme Homeopath’s response:

I emailed my Lyme Homeopath to get his interpretation of the results and he said this is suspicious of Lyme and to do a Lyme Challenge (if I wish to). The Lyme Challenge (which is what I did back in March 2012) is when you take herbs such as Cat’s Claw or Teasel Root for several days to see if it produces a herx. A 5 year old would most likely do 1/4 adult dose. I asked if this would “awaken the beast”. He said no. But I am not sure if I want to do this because I’m not trying to prove whether he has Lyme or not (like in my case). Infact I want to disprove it. If I were to treat him, I will not subject my 5 year old to harsh antibiotics. If anything, I will do as my LLMD advised on symptomatic kids and start him on the Cowden Condensed Protocol with specific dosages according to weight. However, I need to do more research on that and I need to monitor him on symptoms. In the meantime, my pantry will be cleared out of all skittles, gummi bears and chocolate chip cookies.

Another great point that he brought up was the mention of Dr. Dietrich Klinghardt where his theory is that 70% of people on earth are walking with Lyme antibodies and their immune systems can fight off the infection.

Homeopath’s Bottom line: Don’t treat if asymptomatic.

Dr. Marty Ross Response:

A western blot is a technique used to see if a person is making antibodies that attach to very specific proteins found on the Lyme germ covering. We identify the proteins by what they weigh. For instance, one of the proteins weighs 18 KDa (a KDa is a microscopic unit of weight.) On the western bot a + of ++ or +++ means that the tests detects antibodies against that protein. An ind could mean one of two things: there was a very weak antibody reaction so it is barely detected or during the test some dirt or another artifact showed up on the test strip. So an Ind could be a weak antibody reaction but is not always. A test is positive if there are antibodies against 2 of the following, 23-25, 31, 34, 39, 41 or 83-93. Ind do not count in determining a true positive. Having said this, I would interpret the results as very weakly positive given the number of ind findings at the 6 important proteins.

However, having a positive test or even a weakly positive test does not prove one has Lyme. We also have to consider is there a risk of getting it, the symptoms, any physical findings. So in the case of a person like your son who does not have any symptoms, I do not treat. It is possible that even if he has Lyme his immune system is dealing with it. I do not use antibiotics in this situation because they may not rid his body of the infection if it is present, it is also possible they could cause any Lyme to become dormant which is much harder to treat. Finally, even if he is on antibiotics, it is not clear how long to treat given that he does not have symptoms.

Yes, some of my patient had Lyme infection but not disease for many years and then they became symptomatic. Again though it is hard to tell who this will happen in.

Regarding the 18 +, the Europeans consider it to be one of the important proteins. I sometimes consider it, but prefer to look at the reaction to the six proteins I discussed earlier.

Dr. Ross’ Bottom line: Don’t treat if asymptomatic.

Ok, so I got 3 of the same answers from great sources and my mind is now at ease. Again, the good news is that he shows no symptoms at all, he’s very active, sleeps really well, very smart and intelligent especially with technology, on the ball, and can sometimes outwit me and always calls my bluff.

So what next? Right now, I must leave things up to God and pray that everything works out fine for our future. Next step, get hubby tested. I’m curious now to see if every living soul on earth has Lyme antibodies.

Just curious, what would you do in my situation and have any of you been in this dilemma? Any advice would be appreciated.

In other news, I got my monthly blood labs back and things are looking much better.

Infuriated. Frusterated. Rant.


First of all, I am not a Doctor. I only speak from experience.

I have been receiving many emails from folks in Canada who received their Igenex results at IND to positive bands and wondering what my take on it is because their own family doctor doesn’t believe them. They are being shipped off to Infectious Disease specialists. So, what is my advice?

RUN THE OTHER WAY.

I say this because I have been in your shoes. Dr. Gollum (one of my fam docs) looked at my Igenex Positive test results and says “I don’t think you have Lyme, I think you have Rheumatoid Arthritis. Let me send you to a specialist. But you have to wait 4 months” Mind you I had only mentioned to him in passing that I have “some fleeting minor joint pain”. He dismissed the fact of my other symptoms such as vertigo, upper abdominal pain etc and decided to focus on arthritis.

Canadian doctors don’t know much about Lyme because their medical textbooks say that you can only get it from a deer tick and you need a stupid bulls-eye rash. They will send you off to an Infectious Disease Doc because they don’t know what to do and want to wash their hands of it. Then you will wait weeks or months to see said Infectious Disease Doc who will then again mock you and say “There is no such thing as Chronic Lyme.” Then, they will either diagnose you with something else or give you a pill for something unrelated.

This is my advice. Rule things out. If you are getting weird symptoms like:

  • numbness and tingling like I had, get it checked out. I demanded a Head CT Scan and Brain MRI. Came out “remarkably clear” as said by a Neurologist.
  • unexplained tummy pain like I had, get a colonoscopy. Wasn’t fun but necessary. And get an abdominal MRI, like I did. Both came out clear.
  • upper GI issues, unexplained nausea, get a barium swallow, like I did, (results said regurgitation resulting in GERD diagnosis) an Upper Endoscopy done, like I did. Came out clear.
  • vertigo like I had, get a balance/dizziness test. All came out clear as per ENT.
  • random chest pains like I had, get an EKG. Heck, get 10 EKG’s. Clear yet again.

See a pattern?

If there are unexplained symptoms and the tests come out clear, something’s up. It’s not in your head. Do not take cymbalta or paxil. If one of your tests come out positive with something it could very well be the case. However keep in mind that Lyme mimics all diseases. Bottom line is trust your gut instinct. If something is off, something is off.

Don’t wait for Canadian Doctors to figure out what’s going on. Igenex is one of the leading laboratories in the US that diagnose Lyme and Co-infections. By the time your doctor takes his head out of his a$$, you would have saved much needed time by getting treatment instead with a good LLMD in the states. That’s the key. A GOOD LLMD who will treat you based on symptoms by a clinical diagnosis. The Igenex results are only supportive. That’s the other problem. Our own family doctors and specialists only rely on test results and that’s what we have be trained to rely on too. If the symptoms don’t fit their mold that is written on a peace of paper, then you are automatically diagnosed with stress or attention seeking. Lyme is way more than test results.

What about insurance?
Because I am self employed, I bought my own insurance while I was waiting for my Igenex results. It’s $99/month. But it covers dental, chiro, prescription, massages, eyes, and a whole whack of other stuff. I get my prescriptions re-written at either a walk-in or one of my family doctors. Don’t go into it with all the controversy about Lyme and talk their ear off. Now is not the time to get political. This will only scare them. Just say “Hi, I’m seeing a specialist in the States, and I need these prescriptions re-written for insurance reasons.” If they ask, state that you were diagnosed with Chronic Lyme and seeking care out of country.

What I find with most stories I hear is that if you are wanting a re-write of prescriptions with your own family doctor (who wasn’t able to figure out what was wrong with you), that they are hesitant in treating you because they have been with you every step of your journey and will mostly likely doubt your new diagnosis. A older friend doctor of mine even mentioned to me that doctors have egos. If they can’t figure out what is wrong with you, and you get a diagnosis from somewhere else, their ego’s are shot. It’s like getting a carpenter to fix another carpenter’s mistake. They won’t do it.

So, if you go to a walk-in or some new doctor, they may re-write it because they have no history with you. Again, this is from my own experience and theories I put together based on stories I heard.

What if I can’t afford it?
My neighbour once said to me awhile ago (before my Lyme)… “We all don’t even blink an eye at dropping $500 to fix the engine in our car. This is our health. I will pay whatever it takes to feel healthy.

I saw this in the newspaper the other day and finally got around to giving them my 2 cents. If you are in this area, please click here and give them your 2 cents. Even if you live in 5000 miles away, lie. They won’t know where you live, you don’t need to leave a name. It’s time for our voices to be heard. Do the survey, if not for me, for all those who are suffering needlessly. What did I complain about in the survey? About how my taxpaying dollars made me go to the States out of pocket. About how I have to wait an average of 6 hours in the ER, 3 hours at the family doctor, and how 10/10 of the doctors in my area are NOT TAKING any new patients. About how the idiot ER doc dismissed my symptoms and sent me home when I could have been treated right then and there and be done with this crap.

I am not a pitchfork in the night kind of person. However right now, I am just beyond tired of how the Canadian Health Care System aka Government is treating this. How misinformed doctors are. How they are only confusing patients who deserve treatment because of their lack of knowledge. How the internet is our only hope for answers.

We will seriously need a Lyme Apocalypse to take over our country before higher ups will start paying attention.

 

 

 

Interpreting your Western Blot


Here is my Western Blot from IgeneX (click to make it larger). Total wait time was 2 weeks. I must stress the fact that the Western Blot is only supportive information. Lyme disease is purely a clinical diagnosis. My Western Blot only tested #188, #189. I did not test for co-infections. There are so many different strains of co-infections, I was not about to spend $600 to test 2 of them.

If you see above, I am IgeneX Positive but CDC Negative. For an IgeneX positive result, you would need at least 2 positive ++ bands. IND means that it is a small positive, but most LLMD’s count this as a yes. For information on how to interpret your Western Blot, read Western Blots made easy.

It is interesting to note my responses below on the confirmation.

My LLMD clinical diagnosis: “Babesia! Babesia! Babesia!” screaming the office down.

Email from an LLMD in Washington: “Yes It is a positive test. The test can be wrong 4% of the time. A diagnosis of Lyme is only made after considering the risk of getting it from possible tick exposures or actual bites, your symptoms, physical exam findings and consideration of positive testing.”

Email from my Lyme Homeopath: “Thank you for forwarding the test result.  My interpretation is positive for IgM and the negative in IgG which has to have minimum 2 bands for official positive, is that this is also strongly indicative of Lyme.”

Response from my GP: “I don’t think you have Lyme. Perhaps the lab in California was wrong and the Canadian test was right. I think you have Rheumatoid Arthritis. Let’s send you a specialist in RA. If you were positive and you have had symptoms for a long time, then it should be IGG Positive, not IGM.” And the response to that statement can be found here.

Igenex Western Blot Break Down by band

• 9 cross-reactive for Borrellia
• 12 specific for Bb
• 18 highly specific to Lyme (from the link above by Dr. James Schaller, if this band alone is positive, you have Lyme)
• 20 cross-reactive for Borrellia
• 21 unknown
• 22 specific for Bb, probably really the 23/25 band
• 23-25 outer surface protein C (OspC), specific for Bb
• 28 unknown
• 30 unknown; probably an outer surface protein; common in European and one California strain – Has cross-reactivity with several different types of viruses
• 31 outer surface protein A (OspA), specific for Bb – Has cross-reactivity with several different types of viruses
• 34 outer surface protein B (OspB); specific for Bb
• 35 specific for Bb
• 37 specific for Bb
• 38 cross-reactive for Bb
• 39 is a major protein of Bb flagellin; specific for Bb
• 41 flagellin protein of all spirochetes; this is usually the first to appear after a spirochete infection but is NOT specific to Lyme (i.e, other spirochete diseases have flagellas)
• 45 cross-reactive for all Borellia
• 50 cross-reactive for all Borrellia
• 55 cross-reactive for all Borrellia
• 57 cross-reactive for all Borrellia
• 58 unknown but may be a heat-shock Bb protein
• 60 cross reactive for all Borrellia
• 66 cross-reactive for all Borrelia, common in all bacteria
• 83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
• 93 unknown, probably the same protein in band 83, just migrates differently in some patients

Further excerpt by Dr. James Schaller, M.D. on Western Blots made easy.

Simply, if you are blindfolded and touch the side of an elephant, you may not be sure it is an elephant–perhaps this is a rhino? This is the 41 band. It is from the flagella’s, the parts inside Lyme that help it move—they get a lot of attention in the body, in the same way a whip snaps and gets attention in the hands of an expert user. However, the 41 antibody is not specific to Lyme, since many organisms have flagella.

Now, what if you touch this same elephant on its tusks or on its long peanut-eating tubular nose? You know it is an elephant. Period. One touch and you are certain, because these parts are very unique to this huge animal. This is Dr. Jones’ point. It you see a Western Blot 18 antibody that has a positive, you have Lyme. You do not need to check any other bands, because the 18 antibody is highly specific to Lyme—just like double tusks on an elephant.

What Do the Number of Pluses Mean?

IGeneX gives levels of antibodies. One + means you have some antibody of that type. A single positive is plenty strong, because that is the same level of brightness seen in the positive control run next to your blood test. This means they run a fake sample with all 13 proteins which should show always show up as 13 positives. It helps confirm no error in the testing.

If you have a ++ or a rare +++, this means you have a very large amount of antibody of that type. However, Lyme ruins immune system functioning and the number of positives sometimes goes up with treatment and healing of the immune system. People with no aggressive past Lyme treatment, should be lucky their body has made any antibodies at all, since Lyme is very good at both hiding from the immune system and hindering it.

Also, many people have “IND” or indeterminate findings on an antibody. This means the lab tech is seeing something, but is not ready to call it a clear positive. Consider a positive in the level of a single + to be a sharpie flair black line. I consider the IND to be a black pen line.

In my experience, many of these patients also show high Epstein Barr labs, which means this common infection is not in check and the immune system is very weak. And after we treat the patient, the IND sometimes becomes a clear + which means you now have new and clear antibodies against this part of the Lyme bug. I consider all IND’s as weak positives. This is my opinion.

Currently, IGeneX does not use Dr. Jones’ criteria. I have not asked them why. Perhaps because they are accountable to different laboratory regulating agencies and in general the government is perhaps decades behind real-world clinical medicine. Apparently, the government and many insurance companies blindly follow 14 individuals who actually think they can control 800,000 physicians and 300 million Americans.

8 Steps to Diagnose Lyme in Canada


I am not a medical professional. I am only stating my experience .

If you are a Canadian and suspect that you have Lyme, welcome to the land of uncertainty. But don’t fear. I’ve made a clear cut path for you which you won’t find anywhere. We are so use to having our doctors take care of everything for us and to be pushed out into the world of testing ourselves is quite overwhelming. It seems so foreign and even a little bit illegal!

  • RULE #1. RULE OUT ALL OTHER CAUSES OF YOUR HEALTH ISSUES
    I have personally had almost every test under the sun and they all came out clear. I knew something was wrong when I started getting tremors and funny body vibrations. Something just wasn’t right. This is what led me to test for Lyme.
  • RULE #2: DO NOT GET TESTED IN CANADA
    If you do not follow this rule, you will end up with this. Pending, negative results and cancellations. A complete huge waste of time.

icon_pdf Download a copy of this Lyme Awareness Poster that I designed and spread the word.

lymedout


8 Steps to get diagnosed with Lyme in Canada

    1. Do not get tested in Canada. Go to IgeneX*.
      Visit IgeneX or call them at 1.800.832.3200
    2. Order #188 and #189 Western Blot Test Kit for Lyme
      They will send it to you via USPS. It took about 2 weeks to get mine in the mail. Do not test for co-infections such as bartonella or babesia either. These costs are very expensive nearing about $600. They apparently only test for 2 strains of babesia when there are more than 30. If you are being treated with a good LLMD, your medication will be eradicating co-infections anyway.
    3. Arrival of the Box
      When it arrives, inside the box will have the kit. Fill out the paper work along with your credit card info. You will need to pay for this yourself. The #188 and #189 are $100 each. So total is $200.
    4. Getting an Authorized Signature
      Bring this to your family doctor or naturopath and get them to sign it. There’s a signature field for your physician. Your family doctor may think you are crazy but do not let them bully you. Your mission is to get their signature on that form.
    5. Drawing your Blood
      Get your blood drawn on a Monday morning so that by the time IgeneX gets it back, it isn’t sitting somewhere on a truck rotting. I went to a CML Healthcare Lab. The vials will need to be spun for about an hour. Some places may charge about $20.
    6. FedEx it back to IgeneX
      Package up the vials immediately back in the box that is supplied and secure it in the Fedex Envelope it came with. Drive to Fedex and ship it right away at the fastest shipping possible. Cost for this is about $60 from Toronto.
    7. Find an Lyme Literate Medical Doctor (LLMD) Pronto
      You most likely won’t find one in Canada or most specifically, Ontario. However there are some Naturopaths (in BC) that treat it under the guidance of Dr. Murakami. Wait times for LLMD’s may be up to 4 months. If you need a referral, contact Can Lyme or the International Lyme And Associated Diseases Society (ILADS). If you have an appointment already scheduled with an LLMD, make sure you CC your IgeneX results to them.
    8. The Waiting Game
      Results will come back in between 2 -3 weeks. I had cc’d my results to my LLMD, and with the power of technology in the States, she emailed me the results as soon as she got them. This saved me a hassle free trip to Dr. Gollum to explain yet again why I think I have Lyme. This begs me to question: Why don’t Canadian doctors email you? or better yet, why don’t they think test results belong to you either?

* IgeneX is the leading testing facility for Lyme and they are located in California. Waiting time in all: About 4 weeks. At this point, I highly suggest that you start cleaning up your diet. This includes no sugar (not even in foods), gluten/yeast free. I also suggest that you go on a Candida Cleanse Detox. This is the Cleanse I did.


Interpreting the Western Blot:


You are positive, now what?
Get treatment! Financial worry will add even more stress. However I think, spending $10,000 for good treatment to get my health back is a no brainer. Yes, it is an initial shocker in the land of free healthcare, but you must realize that Lyme is a silent killer and ultimately nobody cares except for you. You will only get worse if you do not seek treatment. Claim your health back. Think about all those times you had to fix your car and paid $500 here and there. This is your LIFE! Not some car. [end tough love here]


You are negative, now what?
Lyme is all about symptoms. Just because you are negative does not mean that you don’t have Lyme. Lyme is mostly a clinical diagnosis based off your symptoms. There are many co-infection associated with Lyme. The IgeneX test is testing for antibodies. Depending on when you were bit, sometimes the antibodies haven’t shown up yet. Some patients are given something called a “Lyme Challenge” to “enhance” results of the Western Blot. What this means is that you are either given anti-biotics or herbal anti-microbials (as my homeopath gave to me) to take for a set number of days and then test for the Western Blot. I did the anti-microbial Lyme Challenge using Teasel Root and Cat’s Claw. I suggest that you seek an LLMD regardless to get treatment.

I had my 5 year old tested with IgeneX and his results came out Indeterminant (IND). This means that he may have been “exposed”. However he shows no symptoms. Nada. None. So do I treat him? No. Only treat if he has symptoms. Read more on this story here. And then I got my husband tested as well. Read more on that here.

my useless canadian testing


One of the stipulations of being treated by the LLMD was that I was to do Monthly Blood Labs to monitor my system. These are:

  • CBC – Complete Blood Count
  • AST – Liver Function
  • ALT – Liver Function
  • BUN – Kidney Function
  • CREATININE – Kidney Function
  • Amylase – Pancreas (when on Mepron or Malarone Antibiotics)

I dreaded going to Dr. Gollum to ask for the 12x blood labs that were required. I had even contemplated on going to my son’s pediatrician. But I knew that wouldn’t work. So off to Dr. Gollum I went.

He is a very nice and gentle man, however he doesn’t believe that I have Lyme even after the positive result from IgeneX. He thinks that the Canadian tests are right and that “perhaps the lab IgeneX in California is wrong.” I replied in the most non condescending way that Canadian Lyme tests are highly inaccurate. I can’t really blame him because he is just not educated in this area. I’m glad though that he did requisition the monthly labs for me for the next 6 months.

HOWEVER, he re-iterated the fact that I don’t have a fever or a rash and asked me what symptoms I had. I mentioned to him of the recent arthritic like pain in my hands and knuckles and knees. I didn’t even bother wasting my breath with the fever or rash comment. He said again that the Lyme diagnosis is fishy and wanted to refer me to a Rheumatoid Specialist. My eyes at this point most likely rolled to the back of my head, and I wanted to take my hands and strangle his neck and shake him and say “WHAT IS WRONG WITH YOU!!!”.

Obviously, I didn’t do that. I sat there and smiled and said “Ok, yes please refer me to yet another person who will think I am crazy or better yet diagnose me with rheumatoid arthritis and prescribe me more useless medication.”

I went out of his office with some more blood labs requisitions, this time for Rheumatoid Factor and so on. The next day, I went to get my blood drawn. “Um excuse me Miss, this test isn’t covered by OHIP. It will be $50” said the Nurse. Um Ok great. So now I am literally PAYING $50 dollars to Public Health to prove to my family doctor that I don’t have arthritis.

So the phone just rings and it’s Dr. Gollum’s office. “Hi, your Rheumatoid Specialist appointment is in July”. I’m like, “Um, ya, that’s like4 months from now.” I guess my case isn’t that big a deal for him. And I know this because his receptionist says that he reviews each case before booking an appointment.

Anyways back to the original post topic, here’s the evidence of the Canadian test vs the IgeneX California test.

Canadian Test below. The Babesia Antibody was cancelled. The Bartonella had no evidence of serologic infection. The rest for some reason are pending and even a month later, the results have not arrived. I’m not even sure if there was an Elisa test performed here.

IgeneX test below. Positive by IgeneX, but negative by CDC. 2 LLMD’s + a Lyme Holistic Practitioner confirmed that these positive bands I had are specific to Lyme and that I do have a current infection.

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