lymed out

my quest to getting these suckas out!

Archive for the tag “elisa test”

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.

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.

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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