posted
I did this radio interview and I am so upset at what this dr. says. I feel like it makes me look crazy and that it's all in my head. Please comment with thoughtful, intelligent thoughts/stories. I would greatly appreciate it!
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Bless your heart Larae! You did a great job...he comes off sounding like Wormser. He also sounds ridiculous saying neuro and heart problems can be cured in 10 days.
posted
Having our lives taken away and going into huge medical debt is just so much fun, isn't it?
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Yeah, I just didn't want to deal with the responsibility of being a functional member of society, so I thought I'd just make myself have a fever everyday, lose my ability to physically hold my head in an upright position all day, have a needle stuck in
my tail 2x/week, take handfuls and handfuls of supplements that make me want to vomit, lose my home, lose my job, watch my husband almost lose his leg (while on steroids)...because that's so much easier.
I just needed that placebo effect and I'd be fine.
droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
You sounded fine, just sick. This Dr. is terrible. I left a comment on the bottom and also a few reviews on vitals and healthgrades on him. He represents almost every Dr. I've been to.
posted
larae-you did a fine job and the Dr sounds utterly horrible. he reminds me so much of one infectious disease dr in particular that I saw who told me that at the age of 27 I was going through some "sort of strange delayed puberty type thing...you were a ballet dancer and those girls have screwed up systems...I have seen it time and time again...these tests are false positives...go live your life and stop WANTING TO BE SICK."
It is truly infuriating. Again Larae you did a good job and thanks for posting this. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Larae,
You are to be commended for your courage to speak up.
While I sure wish the report had also interviewed an ILADS LLMD, and also refute the IDSA speaker who was just plain wrong on so many counts . . .
your words were just fine. Just fine, indeed. You were clear and honest.
It's the IDSA doctor who sounded like he is choosing to ignore the complexities of lyme.
Yes, he clobbered you.
And, readers needed to hear that to get a grasp of reality.
[EDITING to clarify: so they know how they will likely be received by doctors when they approach the topic of lyme.]
Those who want to believe him may think you do not have lyme but that will be their educational loss (that could turn into personal loss).
Those who know you are correct, understand this is not just a lyme-ignorant doctor but one with great hostility, too.
Those who just don't know either way will likely read a bit more than they might have if they are faced with this in the future.
Sadly, as in the documentary "Under Our Skin" the IDSA doctor's treatment of the patient is important for others to hear.
They need to know that this is exactly how it is for us out there. And that it is just so very wrong.
I would hope the reporter would follow up with an ILADS doctor.
Other than that, as you interview stands, it speaks well for yourself, even if the editing was not in your favor and inclusiveness (of ILADS) was not there.
I know listeners will not see the comments but some posted fabulous links disputing the IDSA doctor's ignorant remarks.
Those precise links to precise articles speak volumes to validate your words.
Take care. -
[ 10-05-2012, 02:07 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thank you, Larae, for speaking out for all of us. I agree with the other posters, especially Keebler.
Posts: 331 | From West Coast | Registered: Jan 2012
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posted
I was particularly interested in your story because I lived in Nebraska for 8 years (Lincoln). I remember going with my husband while he went fishing at Lone Pine and saw several ticks climbing on a pack as we were loading stuff in the car! So possibly you were infected in Nebraska. We now live in another state that doesn't have Lyme Disease, Utah! Ha Ha
You did a great job portraying the reality of this disease. Thanks.
The doctor is horrible, typical ID doctor. I can't believe we face this when we are seeking a diagnosis! So sad the lies they spread. Placebo?!!
Posts: 312 | From Utah | Registered: Nov 2010
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You did a great job in this interview. I wouldn't feel bad about it one bit! The article was written to incite adverse opinions... and this dr comes off sounding uneducated.
Since the rates of infection are still low in Nebraska this article can be published with little negative press. What a shame though!
What will it take for some REAL CHANGE to take place in this country?
Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
Bravo! You did a great job & thank you for being our voice.
I feel myself turning more & more to the DARK SIDE when I hear idiots like that doctor.
What I really feel like doing is dosing him with ticks on a weekly basis. But don't fret, since Lyme disease does not exist in chronic form. He should be fine with 2 weeks of ABX!
Posts: 2087 | From NY | Registered: Oct 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Larae,
I wonder if you would be okay with use of this tread as a teaching moment, alongside the links for The Lyme Controversy detail
to help those new to lyme know what to expect from regular doctors and ID specialists, so to speak -- so they better understand the importance of seeking out a LLMD?
Had I actually heard a doctor like the one in your interview before I tried and tried, doctor after doctor . . . well, then, I could have avoided so much medical abuse.
We can tell newcomers all the reasons why but to actually hear it, really makes an impression. And the audience comments for that are excellent, too.
Are you comfortable with myself or others sharing this link as a learning tool? Think I did that last night but thought I should really ask before making a habit of it.
If you'd rather not, no explanation needed at all. It's a very personal thing, I'd think and you may not want to see it re-posted in a links set. -
[ 10-10-2012, 04:40 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
thank you so much for speaking out on behalf of all of us suffering from this horrendous illness!
if enough people share this stories, it will be impossible for this country to keep turning its head and choosing to ignore our suffering.
you did far better than i ever could, and i commend you. that doctor is just a jerk!
Posts: 442 | From usa | Registered: Oct 2010
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Larae, This doctor was so arrogant. I don't think there is anything you could have done differently. Thank you so much for sharing your story.
You have great credibility with your educational background and that will impress many people. You were young, ambitious, planning a wedding - and this ugly disease changed your life as you knew it. I am so sorry about the fire and your losses.
You are very brave and I can't thank you enough for trying to make a difference.
Posts: 2380 | From New England | Registered: Aug 2011
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posted
Larae You did great, the doctor is arrogant and does not have listening skills.
At best the doctor is under-educated or ignorant. At the worst, well we can only guess...maybe part of a well planned conspiracy?
What is so maddening is that he really never address why we are so sick because he says he can cure us so easily.
Is it that they dont believe in Chronic Lyme or they just ignore it?
Posts: 164 | From California | Registered: Aug 2009
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Tricky Tickey
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Member # 26546
posted
That doctor was hard to stomach. He's simply parroting what he's been taught by the IDSA gods.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- pooldog,
Why do IDSA doctors, especially IDSA Infectious Disease doctors, shun the very notion of lyme being beyond their "hard to get and easy to cure" doctrine?
They really just don't believe in the spirochete's longevity or power. I think they just have not even truly studied it to the degree that most ILADS-educated doctors have done, and continue to learn.
But the the IDSA voice boxes may know more than we think, stay quiet and make money from not acknowledging it.
IDSA is likely in bed with the pharmaceutical industry and the insurance industry. They all gain by letting those with lyme turn chronic and taking all kinds of Rx to address symptoms for life (but not address the cause).
Many IDSA governing members had financial interest in the vaccine a few years back (that turned out to be a disaster because of their ignorance). And they say it was pulled off the market due to poor sales when it was really that many GOT lyme from the vaccine.
Whether they know more than they will admit is an ongoing question but, mostly, they really think many are just faking it. Big Sigh. I've come across so many doctors who are just outraged at the patient.
From what I can tell, doctors are genuinely shocked at what my body has become. But they don't want to learn more.
They just want me out of their sight ASAP - with great judgement and some comment like I "ought to be able to do better" (with extremely few exceptions but then the non-abusive doctors still don't know WHAT to do and are just so perplexed they turn to looking past it). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- For anyone new to all this and still trying to get a regular doctor to help:
What ILADS is & WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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