Feeling very lupie today!

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nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 1/19/2010 12:06 PM (GMT -7)   
I'm typing this at work....my brain fog and vertigo are almost overwhelming today! And I have a beautiful butterfly rash as well.

I guess this is just a vent.

I was in the hospital last week with severe abdominal pain; they never really figured out what was causing it, and it's a lot better now. I was formally dx with chronic Lyme disease on Saturday....this on top of everything else!!! I will start antibiotic treatment this week.

I'm just not having a good month. shakehead
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


Lynnwood
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Date Joined May 2005
Total Posts : 7018
   Posted 1/19/2010 12:11 PM (GMT -7)   
I've been hospitalized with unknown but severe abdominal pain in the past -- not fun. That time they wanted to do exploratory surgery but I declined & it cleared up. Then again last year, so did the whole GI route -- they decided it was "intestinal cramping" and probably part of lupus. But then it went away again.

Crazy stuff. Hope the month gets better.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 1/19/2010 1:20 PM (GMT -7)   
Thanks Lynnwood....I know I'm in a grey, foggy, depressed mood right now, but I really appreciate this site and everyone in the forums. Sometimes you guys are the only people I can talk to; no one else understands.

Speaking of "cryptogenic" abdominal pain....another time I was in the hospital with abdominal pain that they couldn't figure out, a doctor casually mentioned that about 40% of the people admitted to hospitals with abdominal pain never do find out what caused it!

I just thought, "Great!"
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com

Post Edited (nasalady) : 1/19/2010 1:43:19 PM (GMT-7)


FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 1/19/2010 5:48 PM (GMT -7)   
Hope you feel better!
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Bactrim
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.


nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 1/19/2010 6:42 PM (GMT -7)   
Thank so much Fran!

I am feeling a little bit better this evening.... :)
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 1/19/2010 8:25 PM (GMT -7)   
Sorry to hear Lyme has been added to your list as well.  Do you have any idea how long since the onset?  And can I ask what test you had done that confirmed the diagnosis?  I didn't think they treated after a certain time period had passed.  I'm curious because it was one of the things I was tested for 6-7 yrs ago....which came back negative - but then heard the test they used  was unreliable. 
At any rate - I wish you good luck on the antibiotic therapy and hope you get to feeling better very soon!
Lucy
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; UCTD & osteoporosis 2007; celiac 2009
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn and lots of vitamins
 
 


nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 1/19/2010 8:58 PM (GMT -7)   
Thanks Lucy!

I think I've had Lyme disease for at least two years, maybe as long as six years. Yes, there are doctors that will treat Lyme no matter how long you've had it, because the longer you've had it usually the sicker you will be. But you're correct that it's much harder to treat if you've had it a long time, because within the first few weeks the spirochete moves from the bloodstream into the tissues.

If you were tested with the Lyme ELISA test, I've heard it's much less sensitive than the Western Blot test.

Take care,
JoAnn
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 1/20/2010 5:30 AM (GMT -7)   
Hey JoAnn

Wow, Lyme's Disease added to the list :(! I am sorry to hear that. My cousins wife was diagnosed with that last year and they suspect she had it for about 2 years. The wonderful news is she has responded great to antibiotics and is almost back to her old self.

I hope you have a better day today! :)

PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 1/20/2010 8:07 AM (GMT -7)   
JoAnn, you have a lot going on. I guess the good news is that they diagnosed the lyme disease and can treat it. The vertigo, is suspect, is the worst of all, and too bad they can't diagnose your stomach pain. No wonder you're depressed! I can't believe you can get through work feeling the way you do. Take care of yourself.

((((Hugs))))

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lyrica, tri-est, cymbalta,


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/20/2010 12:12 PM (GMT -7)   
Thanks so much Amy and Pat!

I'm on the hairy edge of deciding whether or not to keep working. I don't think I'm very effective anymore at work...lately I have managed to do the absolute minimum amount of work to justify my paycheck, but I've always been an overachiever in the past. I HATE having to just do the minimum because I'm sick!

I do have hopes of getting better with antibiotic treatement for Lyme diseaes. I know that Lyme can actually mimic various autoimmune diseases; it would be WONDERFUL if some of my AI diseases actually disappeaered after several months of antibiotics!

This is one of the things that keeps me working....the hope that at least some of my medical woes are temporary.

Thanks again for your support and encouragement....
(((hugs)))
JoAnn
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/20/2010 12:23 PM (GMT -7)   
lucysgd said...
And can I ask what test you had done that confirmed the diagnosis?


Hi Lucy,

I didn't notice this question the first time I answered you....sorry, my brain is not functioning very well rightnow! sad

I first had the Lyme ELISA test which was positive. So then I called Igenex labs and asked them to send me a Western Blot test kit. I did this because I had read that most labs use the CDC criteria for a positive or negative Western Blot, but Igenex is one of the few labs in the country to use the more up-to-date criteria for positives or negatives. So when I got the test kit I took it to my primary doctor and she ordered the labs to be done (has to be a doctor's order with the proper diagnosis code) and got my blood drawn there at her office and packaged it all up. My husband took it to FedEx and sent it off.

Sure enough, I had a positive Western Blot (both IgM and IgG), but it was only positive by the newer criteria, not the old CDC criteria. So if I had had this test done the way most doctors would do it, the results would have been negative.

Hope this helps!
JoAnn
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 1/20/2010 4:31 PM (GMT -7)   
(((( JoAnn)))) praying you are feeling better. Wouldn't it be great if the anti biotic got rid of some of your symptoms, I know that would be a relief. I know what you mean about the work situation. I saw my rheumy Friday and she suggested I cut back to 4 days a week, so will start that next week. I sure hope it makes a difference in the way I feel.

Keep us updated on how you are feeling. :-)
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid and Tramadol (as needed) and magic mouthwash ( as needed for mouth sores)


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 1/20/2010 9:22 PM (GMT -7)   

Hi JoAnn - Thank you for that specific info on the testing process for Lyme.  I did have the ELISA done (via PCP) about 5 or 6 years ago, which was negative.  My current rheumy told me 3 yrs ago that there wasn't a good lab anymore for testing and it became a moot issue w/ her.  I guess I should have persisted (and found my spine). 

If I did contract Lyme - I'm sure it would have been with the onset of all my troubles in 1997 - and the little bit of research I did do a few years later, didn't speak very positively about effective treatment for "chronic lyme".  Perhaps things have changed?

The darndest thing is that when I got so sick in '97 and the docs couldn't seem to figure out what the source was, my mother begged me to get tested for Lyme disease.  I probably mentioned it to my doctor - but it didn't go anywhere - and even I thought it was a bit "out there".  Anyway, a million years ago when I was pregnant, my mother announced she was going to insure me with Lloyd's of London ..... apparently there was something about a twin policy....if purchased early on with no indicators for twins, and you ended up having twins - Lloyds of London would pay for everything.   My husband and I didn't have health insurance at the time.  There were no indicators and absolutely no reason to consider the possibility of twins.  My mother is a class A worrier and we all kind of laughed at her and she never went through with it.  And then...you guessed it....twins!!!

Now, why do you suppose I didn't listen to her in '97!? confused shakehead confused   I'm still kicking myself for being such a dunderhead.  Lesson is....always listen to your mother.  Especially if she has a track record to back her upyeah

I am seeing a new rheumy in March.  I wonder if it's even worth bringing up at this point?

Good Luck, JoAnn - it would be fantastic if the treatment resolved even just some of your issues!!!  Keeping fingers crossed and keep us posted!

Lucy

 

 


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; UCTD & osteoporosis 2007; celiac 2009
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn and lots of vitamins
 
 


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/20/2010 10:58 PM (GMT -7)   
jhmom said...
(((( JoAnn)))) praying you are feeling better. Wouldn't it be great if the anti biotic got rid of some of your symptoms, I know that would be a relief. I know what you mean about the work situation. I saw my rheumy Friday and she suggested I cut back to 4 days a week, so will start that next week. I sure hope it makes a difference in the way I feel.

Keep us updated on how you are feeling. :-)


Dear Stacie,

Thanks so much for your prayers, I am feeling better this evening. I started the antibiotic for the Lyme disease today....I'm excited by the possibility of getting even a little bit better!

I'm so glad you're able to cut back a little at work! I'll be praying that you find some relief from your symptoms as well.

((((hugs))))
JoAnn
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/20/2010 11:07 PM (GMT -7)   
Hi Lucy,

Wow, that's quite a story about Lloyd's of London and the twins! LOL!

As to whether or not you should bring up Lyme disease to your new rheumy, I'd say it couldn't hurt anything at this point. But you're right, treating chronic Lyme is hard, and the Lyme community recommends that you find a Lyme-Literate doctor, usually abbreviated LLMD. The Lyme disease forum here can help you try to find one close to you, if you like.

Remember, always listen to your mother....and she said to get tested for Lyme disease! wink

I hope all goes well for you with your new rheumy!

JoAnn
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


confusedinalabama
New Member


Date Joined Jan 2010
Total Posts : 2
   Posted 1/22/2010 8:06 AM (GMT -7)   
Hi, I'm new to the forum and was just diagnosed yesterday with M.S. or CNS lupus.  Was diagnosed 4 years ago with lupus but now is affecting my brain.
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