lymed out

my quest to getting these suckas out!

I have no words.

So, I have been on 5 weeks and 1 day of doxycycline after this happened on July 1, 2014. 200 mg 2x a day for what is considered to be an “acute infection”. It was ok the first couple of weeks, then…. lots of nausea, two barfing episodes – not fun while putting my 7 year old to bed and trying to hide the fact that I was vomiting in between. Stomach cramps, severe headaches, shooting pains in head, drunk feeling, loss of appetite, fatigue… it’s all coming back. Not sure what this means. Perhaps I was stirring the pot? Mind you I am also back on the Chinese Manure Tea, so all this stuff in my system is definitely killing something. Well the good news is that that only lasted about a week and then some.

My appointment to see the Infectious Disease doc came 29 days after the bullseye. I really did not want to go because I had heard all the stories on the Internet regarding ID docs. But the only reason I went was to see the results of my Elisa test.

Well good news, it came out negative. And for 2 reasons.
a) It was a Canadian test.
b) It was too early to tell because I took the blood test the day after the bulls eye rash (not long enough for my system to build antibodies).

So I got retested again yesterday. Results to follow.

So in the first appointment, we went into the history of my Lyme since it was on file and I really didn’t want to go there. I would have much rather been doing this. I was asked how I was first diagnosed and I said it was through Igenex. Yada Yada Yada.

So basically here are some of the pointers I have been told by this ID doctor who was a recent med school graduate. I am sure this pretty much sums up what Lyme means in Canada.

  • Lyme does not occur in the area where I live. (which is funny because “something” bit me across from my house. I know of 2 other people in my area who also has Lyme  + 3 recent dogs)
  • Igenex has a “different agenda” because all of their tests comes out “positive”.
  • Canadian lyme testing is 100% accurate.
  • I need to make sure my symptoms are not something else and that I am not lumping it into lyme. Oh wait. Did I mention I had a camera shoved up my butt already? oh ya, what about the blood from my arm re-injected back into my spine?
  • I said in a very nice and polite way to please google Dr. Richard Horowitz, leading Lyme physician in the US who has successfully treated more than 12,000 patients. But I was cut short. I was told we could sit there and argue points forever and lets just rest that we have a difference of opinion and lets not bring politics in.
  • Babesia, Bartonella and Lyme are all different and one cannot be infected by all 3.
  • The US lab doesn’t share their findings or ways of testing to Canada so that is why the hesitation in believing that the lab is legit.
  • Ticks are only in the bottom eastern part, like NY, however due to climate, they are migrating north.
  • Patients are put on 21 days of doxycycline 100 mg twice a day for all infection. That’s it. Nothing else. Did I mention that’s the dose that you also use to treat acne?
  • All patients get better within the 21 days.
  • They have never seen anyone with a Neuroborreliosis infection.
  • Not all Bulls Eye = Lyme (I think this is true right?)
  • Clinical diagnosis for Lyme? Heresy!
  • Patients would much rather get Lyme than C Diff. (don’t even ask me how the conversation went there)

While I completely respected the ID doctor and we had a very pleasant conversation, at most times, I just nodded my head. There was genuine concern for my well being, and it was their job to make sure that they didn’t miss anything. I am thankful for that.

HOWEVER, I am so very tired of this. I am sure you all are too. I don’t want to fight for this. I don’t want my life to consist of convincing doctors about the presence of Chronic Lyme, scouring the internet for explanation of symptoms, and living in fear. Unless there is a massive outbreak like SARS, or West Nile, nothing significant will be done. They are raising an army of doctors who believe in nothing else but the above mentioned points. Frankly, unless one of them goes through what each and everyone of us go through each day, they will never understand. And even if they do, the fight for this is so big, that it will take more than a lifetime to see any change.

This is not to discredit all the people that ARE fighting for Lyme. I thank each and everyone of you that have stood the fight.

Don’t give up you all say! Well, I not, I’m just choosing my focus elsewhere.

There is another Healer.
{new blog coming soon}


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11 thoughts on “I have no words.

  1. I had lyme last fall … am doing much better … also in Canada. Got 5 weeks of doxycycline four weeks after the bite. No positive test … not even a positive biopsy. Also did 6 months+ of the Cowden Protocol for Lyme (out of Florida) on the suggestion of my naturopath. I hear you about the foggy brain!++++

    Apparently, Elizabeth May, leader of the Green Party, passed a non-partisan bill in parliament recently (after much lobbying) to start to deal with lyme disease. Thought you might be interested … and just in case you hadn’t heard.

    • Hi Elli,

      Are you still on medication? What dosage did you get for the doxycycline? Was your lyme a single tickbite or years of not knowing what was happening?

    • I got what I thought was a spider bite and after a couple of weeks started breaking out in a rash (more burning than itching) … which I thought was poison ivy … tried prednisone and antihistamines but they made no difference … after 4 weeks, had the bulls eye rash around some of my rash spots and was diagnosed then. I don’t remember the dosage … probably a basic amount. I just went to emergency. Within 48 hours, my rash started to clear up, etc., etc.

    • I am just finishing up the Cowden Protocol from Nutragenix … did it full-time for six months and am finishing up the herbs now until they are gone.

    • how did that go?

  2. Heather on said:

    You just recited my appointment with an ID dr a few wks ago, at the Cleveland Clinic, USA. Only instead of C-Diff, it was AIDS she kept referring to…WHAT?!?!
    US ID dors don’t recognize Igenex either, but yet I got a call from the CDC, asking where I may have contracted Lyme. In my eyes, a call from CDC asking ? for their population, statistics, yada yada…means that they recognized my Igenex test. The ID dr said there was no way, the CDC duznt recognize Igenex & someone lied to me! Um…ok!
    I have video of a few live blood cell analysis I’ve had done thru a VERY trustworthy/knowledgable naturopath. It’s clear as day that SOMETHING is swimming thru my blood!!! There’s no denying that!!! When asked if she would like to just look at the video & tell me what she thought…NO WAY, not a chance!!! Huh!!
    I’m with you on the frustration front honey…

  3. Seriously?!!! lOL. Sounds like a joke but unfortunately he is completely brainwashed with irrelevant information. How sad. Saving grace is you know better!

  4. Robin on said:

    Well that was totally predictable. They all sound like that down here too. Even at the most prestigious places like NIH, etc. Sorry that you had to sit through that nonsense. Take care and beware of ticks and dumb docs.

  5. Sorry you had to go through one more demoralizing, humiliating appointment to learn that even young doctors are caught up in old cliches. I am sure you were having huge die off and that is why you got so sick. I have not been blogging and took a very long break from Facebook to focus on me and not get involved in the science, politics or sadness of Lyme and it’s destructiveness. I started seeing a therapist last year (not my first time, believe me), that deal with clients with chronic illness. She has seen me feeling great, crawling in to her, crying and now I am back feeling better than I have in the last 7 months. This is due to being back on high dose meds. She has allowed me to remove myself from all the negativity that is on social media, the need to advocate as there are plenty of people healthier that are doing this and to just feel terrible when I do. Accept it, don’t wallow in it, but be true to myself and stop feeling like I have to protect everyone around me. Guilt and not be true to yourself puts a huge weight on you. You have been through hell and back more than most should in 10 lifetimes. You know when you look at your child that you feel the truest sense of love there is – start to recognize the other emotions and feelings and heed them. This is what you deserve.

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

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