lymed out

my quest to getting these suckas out!

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.

 

 

 

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4 thoughts on “Infuriated. Frusterated. Rant.

  1. This sounds soooo similar to the NHS in the UK. My GP dismissed me having lyme from the offset because I didn’t have the rash. Then when I showed her positive test results I’d got done privately (From Igenex) she said ‘oh’ and now wants me to have MORE tests with the NHS to ‘confirm’ the positive result I already have. I’m having treatment privately because my health is too important to leave in the hands of the NHS who have no clue. People spend £3,000 on a wedding day, I’m spending it on giving myself the best chance of having a normal healthy-ish life.

  2. Amen Sista! I spent $20,000 CDN on my wedding! I never even thought about that.

  3. I wholeheartedly agree with the points you raise! I was sent to a Canadian infectious disease doctor when my Igenex results came back to my family doctor. The ID doctor told me that I don’t have Lyme, that these U.S. labs ‘move the bar’ so that their tests are more sensitive, and that is why there are positive results. The neurologist I saw took a look at my Igenex results and said, “Oh, is this from one of those labs where they ALL come back positive?” Not only is the medical community uninformed about Lyme, but there is a HUGE bias against U.S. for-profit labs. Take Lymed out’s advice and run the other way. If you get any IND or positive bands back, find a U.S. LLMD immediately and let them evaluate you. Do some internet reasearch to understand how to properly interpret your western blot.

  4. Great post. I agree totally with keeping the Lyme talk to a minimum. I think doctors think “here’s another paranoid whackjob in my office ………” [unfortunately]. Great advice and I think doctors do respond well to ruling things out and that’s sometimes the only way to get things done.

    always love hearing from you — take care. 🙂

Foggy brain or not, I would love to hear from you!

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