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» LymeNet Flash » Questions and Discussion » General Support » MS Patient's Paranoia Enabled By Lyme Groups

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Author Topic: MS Patient's Paranoia Enabled By Lyme Groups
Tincup
Honored Contributor (10K+ posts)
Member # 5829

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See how they can easily blame patients and call them crazy?

Docs Say It's Not Lyme- It's MS.

And Lyme Groups Enabled Patient's Paranoia.

QUOTE- "Moreover, one of the main concerns of the patient was that Lyme Disease was the correct diagnosis as opposed to MS.

We also report the difficulty of treating and initiating successful follow-up for a patient whose paranoia is enabled by the opinions of certain health advocacy groups."


https://www.ncbi.nlm.nih.gov/pubmed/31302591

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www.DrJonesKids.org
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Posts: 20218 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

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-
Not just any lyme group, they say, but here - at LymeNet - "Lyme Disease Network" is named in the piece.

As I recall, no where in the "MS" threads does anyone say that MS is always caused by lyme or that any individual post has lyme -- unless maybe they posted extensive diagnostic features or such . . . yet, still, there is always - always -

the advice to seek out a doctor truly "literate" educated, experience with not just lyme but also other tick-borne infections for a PROPER ASSESSMENT.

That's what is urged. To see a true LLMD or LL ND for assessment, their wisdom and better testing.

In the tread posts, mostly, there are cautions to be sure that lyme is considered as the underlying cause of the symptoms. And other tick borne infections, too. No mention of that in the medical article, of course.

Also, I know that in all the MS threads here over the past dozen years or so, there have also been posts cautioning to consider various other factors such as nutrient deficiencies, or too much glutamine or glutamic acid,

diet toxicities such as with aspartame . . . and also environmental factors, etc.

Even one of the major MS groups now also even lists lyme as a major diagnostic point to first consider before jumping ahead to a diagnosis of MS.

That this occurred in the Canadian health system is also rather disturbing. It has IDSA written all over it (but then the "A" stand for Amercia -- and that is the whole continent, not just the USA).

The least the article authors could have done is explain that there - in fact - very good reason to consider lyme .

Rather, they call this kind of patient awareness and questioning now a psychiatric illness. Oh, my.

I feel so sorry for the person these doctors condemned, shamed and treated so terribly.
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Posts: 47816 | From Tranquil Tree House in my dreams | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Ann-Ohio
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I , too, am amazed that it was published by the NIH! I am going to see what www.canlyme.com says.

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Ann-OH

Posts: 640 | From Ohio | Registered: Aug 2014  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
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I'm not surprised.
It reminds me of one of my posts about internet trolls.
Courtesy of the NIH;

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/136410?#000000

A lot of people visit Lymenet everyday.
That's why it's so important to post the latest research, protect our LLMD'S and discredit false information.

Posts: 1769 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
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You all are so wonderful and full of great info. Thanks for all you do!! I smile.

I had a chance to read the whole article and it is much worse even than the abstract.

It is sickening!

They kept pushing the MS diagnosis on this lady and trying to also convince her male partner (husband/boyfriend- I forgot) she had MS and not Lyme.

Both of them thought it was Lyme and all info pointed to it.

Sad the docs can get away with this stuff.

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www.DrJonesKids.org
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www.LymeDoc.org

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dogmom2
LymeNet Contributor
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the diagnosis of ms literally means multiple sclerosis(plaques). No disease process is included in the diagnosis. I'm sure my MS was cause by lyme.
Posts: 857 | From northern california | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
GVS
LymeNet Contributor
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The dogmatic, rigid attitude about how to diagnose and treat Lyme by traditional docs is part of two bigger problems -- medical schools teaching doctors that they know all there is to know, and the cookbook medical attitude that one size fits all because everyone is identical.

There have been dozens of medical conditions that were regarded as the product of hypochondria in previous decades that are now recognized as legitimate today. Dozens.

When it comes to immune system problems, one size never has and never will fit all. The thing that gives one person their life back will put somebody else in bed.

Until traditional docs develop a more humble, flexible attitude toward patients in general and late stage Lyme patients in particular, the only rights people with Lyme can expect are those we demand and fight for.

GVS

Posts: 183 | From durham, nc | Registered: Oct 2016  |  IP: Logged | Report this post to a Moderator
   

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