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» LymeNet Flash » Questions and Discussion » General Support » I Have CHRONIC Lyme Disease

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Author Topic: I Have CHRONIC Lyme Disease
Tincup
Honored Contributor (10K+ posts)
Member # 5829

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We are starting a movement away from the IDSA/CDC and need your help please.

https://sites.google.com/view/marylandlyme/chronic-lyme/i-have-chronic-lyme-disease?fbclid=IwAR1hUP-OFDl4jUNbhqebtCIJYl1KrtIU7H_VfjKdZ5epISig2vxYqnFBE8I

Although I now know what Facebook is, I am still way behind in my knowledge of social media.

Hoping everyone can pick this up and share it to get the word out.

I have CHRONIC Lyme Disease!

[group hug]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20246 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
duncan
LymeNet Contributor
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I'm not sure this is actually moving away from the IDSA/CDC - it may be more like playing their game.

Why not just say you have late stage Lyme? You wouldn't say you have chronic syphilis. You'd say you have tertiary or late stage syphilis. Similar story with Bb.

Late stage is accurate.

Want to be more accurate? For many of us, we have late stage Lyme refractory to abx.

I'm not sure this is the battle we need to fight; we have so many as it is.

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LisaK
Frequent Contributor (1K+ posts)
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I had a dr tell me the other day that nothing wrong with me is related to me having lyme 20 years ago. he said the "quacks" just want my money.
Yet, he had nothing to say or do to help my 100 symptoms.

I think it would def. help to get people to actually THINK about chronic lyme.

--------------------
"The difference between stupidity and genius is that genius has its limits."

Posts: 3275 | From Eastern USA | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
duncan
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With a level playing field, I would agree. Lyme that persists for a long time by definition is chronic. There should be no problem with saying your infection is chronic.

But we do not have a level playing field. The label of chronic Lyme has been poisoned. It has been mischaracterized as a non-disease. It has a brand, and the brand is sullied.

This is not fair. It is not right. It is, however, where we are.

On principle, we should fight this mischaracterization. I am concerned, however, that is an uphill battle that we may have already lost.

So why butt our heads against the wall? Why not just call is late stage, just as we would its cousin spirochetal disease?

There is little debate about late stage Lyme refractory to treatment: It exists. The question is with what frequency.

I get it, though. Sometimes you have to fight for principle.

I'm just afraid this is a contrived front that they want us in.

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LisaK
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the general public doesn't think late stage lyme is common. they think "late stage= death or almost death" and this isn't always the case is it?

I rarely use the word chronic because most people don't even know what that means really, or I use it sometimes when people describe another chronic condition- I will say "I am chronic too" so they can relate and know they can trust me with their truths - BUT

that is only with people that have already experienced chronic illness. [Smile]
for most it is simply like having allergies - if you never had them you just cannot relate. just like back pain or tooth troubles, right?

but the actual reality is that chronic is real. I would LOVE for it to be used widely and for people to be educated what it really means.

When I am describing why I can't do this or that, I generally tell people that I am sorry I can't keep up becasue I have brain damage from Lyme disease. THAT always always always gets there attention. (except drs of course) [Roll Eyes]

So from here on in after I open with that I am giong to make an effort to make sure I add in the term "chronic".

--------------------
"The difference between stupidity and genius is that genius has its limits."

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Ann-Ohio
LymeNet Contributor
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A good journal article on Chronic Lyme disease
https://thescipub.com/pdf/10.3844/ajidsp.2018.1.44

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Ann-OH

Posts: 686 | From Ohio | Registered: Aug 2014  |  IP: Logged | Report this post to a Moderator
   

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