PLDS still ain't a thing

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Eiren
Regular Member


Date Joined Aug 2017
Total Posts : 58
   Posted 2/7/2018 3:14 AM (GMT -6)   
So a few days ago I posted in another thread about fitting PLDS to a T and joking about "Fibromyalgia Type 2." So get this, I went to see another rheumy the other day because my GP and I were concerned about my ability to get tendinitis at the drop of a hat and wanted to rule out progressive and bad things.

The rheumy was nice enough. Ordered more blood work. Prescribed me a pain reliever. And said that if the blood work didn't point to any progressive and bad things, I would have an official diagnosis of...wait for it....fibromyalgia. eyes

How I feel right now can match how fibro is diagnosed, I can see that. But still, I fit PLDS to a T. But that still ain't a thing, apparently.

But fibro is a real diagnosis, so I guess I'll take it. And sit myself quietly in the controversial camp of Lyme "causing" fibro. turn

I'm going to still do herbal treatment, don't worry. Not seeing an LLMD right now because I know I have(had) Lyme and not interested in doing a lot of antibiotics right now. I'm spending the $$$ on ordering supplements instead and doing self-care.

But yeah, if I can't get PLDS in my medical file no one can. Seriously. This is crazy.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32619
   Posted 2/7/2018 4:28 AM (GMT -6)   
Are you talking about PTLDS?
Post treatment Lyme disease syndrome?

That isn’t a “label” you want - CDC use that term/label when someone has treated Lyme Disease inadequately for a few weeks (standard for non Lyme lit docs) and still has leftover symptoms - it is given that label - no more treatment is recommended and you are left with the symptoms.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Eiren
Regular Member


Date Joined Aug 2017
Total Posts : 58
   Posted 2/7/2018 7:17 AM (GMT -6)   
Yes.

PTLDS and PLDS is used pretty interchangeably in the literature.

My point in the other thread is that people who have many of the same complaints we have, but can't point to a cause, get a label and treatment, and the ability to get school and work accommodations. Not a cure, no, but management and support. Whereas we are left with absolutely nothing if our blood work no longer indicates an acute infection.

PLDS fits me to a T. But even with the "Patient had Lyme!" info clearly in my medical file, I get a diagnosis of Fibromyalgia.

And then if you look up the literature on PLDS the researchers blather about how confirmed-PLDS is super rare and so on and therefore there's no use in developing treatment protocols. Yep, sure is rare, especially when doctors won't indicate patients who clearly have it. Funny, that.

I'd just be happy with mainstream medicine indicating PLDS as a chronic syndrome just like fibro. Instead, fibro is still being used as a dumping ground for things doctors can't explain. And fibro people don't like that very much, ya' know?

Even if the management protocols mainstream medicine offers me for "fibro" are the same as they would be for PLDS, the fact of the matter is that I have PLDS, and shunting me over to fibromyalgia just so my health problems can be "real" is pretty absurd.

Lapis_29
Veteran Member


Date Joined Sep 2017
Total Posts : 844
   Posted 2/7/2018 10:05 AM (GMT -6)   
dmso works fantastic for tendonitis

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 36310
   Posted 2/7/2018 12:47 PM (GMT -6)   
I think with what you are facing, taking matters into your own hands is the best thing you can do. Read up on how to approach your specific infections, and keep asking questions!! Lyme patients are getting an Herbal education a lot of times, due to this exact thing. I'm so sorry that you too are caught up in this!

And, I agree with you on the whole 'Fibro' diagnosis! It's the only diagnosis I could get (besides chronic EBV) from mainstream doctors for 40 years.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/
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