It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lupus Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 11-25-2007, 07:35 PM   #1
Junior Member
(female)
 
Join Date: Sep 2007
Location: Upstate NY
Posts: 28
selfdiagnosed HB User
So is this it? Do I finally have the answer?

Hi guys!
Well, my name says it all...selfdiagnosed!! Not really though
I did "self diagnose" Lyme disease this summer. Now that I have had over 3 months of antibiotics, I am no better. My rheumie says that any longer on the antibiotics would be considered quackery!

I thought I had found all of my answers in the Lyme diagnosis. But, henceforth, this isn't so.

Here is what happened when I started the Lyme treatment. I developed a blood clot in the arm where I was receiving the IV medications. Then they moved the IV to the other arm, and I developed a second clot! So, this led me to the hematologist who put me on coumadin until he can test me in April for the reasons why I clotted.

I then did my research and learned about Hughes syndrome. Also decided to take a trip down memory lane and see all the specialists again to see if anyone could pinpoint why I keep having the symptoms.

Neuro doc said not something they can find. So I headed to the Rheumie. There I got the battery of bloodwork - and here is what she found:

ANA "mildly" positive (not sure what that means)
Lupus Anticoagulant positive
aCL positive
Vitamin D "way too low" at 20 (doc said should be up over 32)
I can't remember any others...

Anyway, she started me on the plaquenil 1x per day for a few weeks and then I am to start taking it twice per day. She said it will take a while to feel better. How long?? Anyone know??

I didn't get a straight "you have lupus" or anything like that. So, I am wondering is that it? She mentioned that I do have the sjogrens (sp??) and to ask the eye doc to write me for Restasis drops.

 
Sponsors Lightbulb
   
Old 11-25-2007, 07:37 PM   #2
Junior Member
(female)
 
Join Date: Sep 2007
Location: Upstate NY
Posts: 28
selfdiagnosed HB User
Re: So is this it? Do I finally have the answer?

Forgot to add:
I am female, 30 yrs old.
Symptoms began just after baby #1 was born, got better when I was preggo again with #2 and then got worse again after he was born! They were both 4 weeks premature after a lot of bedrest for preterm labor.

Last edited by selfdiagnosed; 11-25-2007 at 07:37 PM.

 
Old 11-25-2007, 08:14 PM   #3
Facilitator
(female)
 
Join Date: Feb 2004
Posts: 4,960
VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: So is this it? Do I finally have the answer?

Hi. From your rheumie's comment about Sjogren's, it *may* be that you tested positive for the anti-Ro autoantibody, which attacks cell cytoplasm. FYI, anti-Ro can be positive in lupus &/or in Sjogren's syndrome. (I was positive for it, too, but I have just lupus, not Sjogren's.) You could ask you dr., and also ask for a copy of your test results for your files.

If you are positive for anti-Ro, you may be especially photosensitive; thus you might want to ask your dr. about sun precautions.

"Mildly positive" ANA probably just means it was positive but not wildly high. ANA fluctuates but is not a very good gauge of disease activity, per Dr. Wallace in his book.

Plaquenil can take as much as 3-4 months to kick in *fully*, but you could feel meaningful improvement more quickly than that. (I certainly did.)

My vitamin D & folate levels were also low before Dx, but those improved steadily, too. Anemia of this type is apparently common with inflammatory diseases.

If you want to read, two excellent lupus authors are Dr. Daniel Wallace & Dr. Robert Lahita. Their books are in most libraries & bookstores.

I'm really glad you got yourself to this point & that life gets better for you from this point on. Let us know how things are going, when you can, OK? Sending my best, Vee

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
TMJ and ear fullness - how to fix this? ctrl-alt-del TMJ Disorder -TemporoMandibular Joint 48 10-07-2009 03:33 PM
Just wondering if this is normal following L5/S1 fusion???? kyma3 Back Problems 21 06-05-2008 11:10 PM
please someone answer this for me harmony06 Bipolar Disorder 8 03-17-2008 02:35 PM
I finally have my answer LATW Multiple Sclerosis 8 02-20-2008 06:39 PM
Anyone else experience this that can help? (long) thadude06 Heart Disorders 5 08-14-2007 07:46 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



VeeJ (173), ladybud (43), AngelicBrat (16), luca689 (7), ksp (6), neveragain444 (6), luvinmusiq (5), brooklyngirl (4), Daisygrace (4), AgedFlowerChild (3)

Site Wide Totals

teteri66 (1180), MSJayhawk (1013), Apollo123 (909), Titchou (856), janewhite1 (823), Gabriel (763), ladybud (755), midwest1 (671), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 08:30 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!