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peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 10/26/2007 10:02 AM (GMT -7)   
was just checking in to see how you're all doing. Some of you may remember me and some not.

I was diagnosed with Lupus last April and was posting on this board. But moved over to the Lyme board.
My lupus diagnosis never sat right with me so I went and got tested for Lyme and I do in fact have Lyme.
That's why when I took the Plaq months ago, I had the most horrible reaction.
I'm starting treatment soon. 
I just wanted to say Hi and see how you all were doing?
 
Jen

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 10/26/2007 10:42 AM (GMT -7)   
Hi Jen,

Of course I remember you. While I'm so glad you have lupus, I hate to hear about your lyme diagnosis. What will your treatment be? How have you been doing? As you can tell, we have lots of new folks here, and some of us old timers.

I've been feeling a little better and am trying an elimination diet and am working with a naturopath who's teaching me, among other things, to eliminate processed and packaged food from my diet. And I'm very involved in my knitting and have been asked to write up and sell a pattern for some bags I designed. I haven't been as active here as I have been but this forum will always be a part of my life. I'm so glad you came back to say hi. We've missed you. I'm sure others here will be happy to catch up with you.

Let us know how you've been feeling. Good luck with the lyme treatment!

Love,

Pat
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 10/26/2007 2:10 PM (GMT -7)   
Jen, I remember you well and am glad to hear from you again. I think your case is a perfect example of making sure that you listen to your gut instinct about what is going on with you and making sure you continue to get things checked if you don't think the docs have it right. Both lyme and lupus mimic so many other diseases that they are pretty tricky to diagnose.

I really hope your treatment for lyme works well for you and that you get some real relief. What kind of testing did you get to show you had lyme? I'm asking because we may get my son tested and I know that some of the tests are more accurate than others.

I've had the usual ups and downs with lupus - some days I feel pretty good and some days are pretty rough. I've had a super busy and stressful week so I'm not feeling great now, but I think if I rest up for a few days I'll start feeling better again.

Let us know how the lyme treatment works for you. Take care and thanks for the update.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 10/26/2007 7:56 PM (GMT -7)   
PattyLatty said...
Hi Jen,

Of course I remember you. While I'm so glad you have lupus, I hate to hear about your lyme diagnosis. What will your treatment be? How have you been doing? As you can tell, we have lots of new folks here, and some of us old timers.

I've been feeling a little better and am trying an elimination diet and am working with a naturopath who's teaching me, among other things, to eliminate processed and packaged food from my diet. And I'm very involved in my knitting and have been asked to write up and sell a pattern for some bags I designed. I haven't been as active here as I have been but this forum will always be a part of my life. I'm so glad you came back to say hi. We've missed you. I'm sure others here will be happy to catch up with you.

Let us know how you've been feeling. Good luck with the lyme treatment!

Love,

Pat

Hi Pat.....changing your diet is a great move. I did that 13 yrs ago when I first got sick. It made a huge difference.
My Lyme dr thinks lyme symptoms are less severe b/c I change my diet and worked out a lot.
Keep that up, you'll be so glad you did.
My Rheum is not ruling out lupus until I'm treated and "cured" from lyme. But it would be odd to have both.
I'm also going to see an ND in 2 weeks. I will treat the lyme with antibiotics and natural meds.
The treatment is brutal. Months of zithromax, Doxy (Vibramycin) and Flagyl. I was hoping to treat it 100% natural, but owe to myself to try some meds also.
The Lyme dr I saw was in the US (I'm in Canada and there are no Lyme literate dr's here) so she gave me all the scripts and info and I have to get a dr here to treat me. That is the hard part b/c no dr really want to prescribe what another dr would give
But my rheum is on board.
Actually, you guys will find this interesting. He is going to ask his other Lupus patients if they want to get checked for lyme. All the info I sent him and all the info I told him about says he is now questioning his diagnosis of other patients.
May prove to be false, but worth a shot I guess.
I've been doing ok. Ups and downs. Having a rough time with fatigue and depression. You know how the story goes.
Thanks for the luck.....I'll keep you guys posted.

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/26/2007 8:01 PM (GMT -7)   
Hey Peacesoul . . . good for your rheumy!! YES! If a couple simple blood tests will rule out Lyme . . . it should be standard practice with symptoms so like lupus. Thanks for the update! It would be FANTASTIC if the Lyme meds cured you and NO lupus!!! I know it is still a long road, but hopefully you won't need ANYONE on HW every again!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 10/26/2007 8:08 PM (GMT -7)   
hippimom2 said...
Jen, I remember you well and am glad to hear from you again. I think your case is a perfect example of making sure that you listen to your gut instinct about what is going on with you and making sure you continue to get things checked if you don't think the docs have it right. Both lyme and lupus mimic so many other diseases that they are pretty tricky to diagnose.

I really hope your treatment for lyme works well for you and that you get some real relief. What kind of testing did you get to show you had lyme? I'm asking because we may get my son tested and I know that some of the tests are more accurate than others.

I've had the usual ups and downs with lupus - some days I feel pretty good and some days are pretty rough. I've had a super busy and stressful week so I'm not feeling great now, but I think if I rest up for a few days I'll start feeling better again.

Let us know how the lyme treatment works for you. Take care and thanks for the update.

Hi :-)
yeah I always felt uncomfortable about the lupus diagnosis. I heard of lyme and when I researched it to death, I figured I owed to myself to get tested.
Testing in very faulty. There is the Elisa test which is the common test give for lyme. But it's not very specific. Most people, even with full blown lyme, test negative.
I sent my blood off to Igenex in Cali. They are a lab that does only tick born illness. I paid a lot of money but it was worth it.
I also did the Elisa here in canada just to see. That came back negative.
The test from Igenex game back CDC negative but showed so many bands for lyme that the LLMD (Lyme literate dr) said it was a sure sign I had lyme. The CDC requires many bands to be + before they give u a + result.
Many ppl who have been cdc negative have started meds, retested and they came back full blown CDC +.
The bacteria for lyme is so tricky.
I only just saw the LLMd this past monday. This dr also had lyme and her dr's told her for 2 yrs, she was nuts. She finally found a dr to take her seriously and she was tested at Igenex and was +. She is now symptom free.
She says I have 90% of the lyme symptoms as well. This is why that plaq took me for a loop, I was herxing on it. Herxing being when the abx kill the bacteria, they become toxic and the toxics are overworking the liver, but it means it's working.
 
I spoke with a women who was diagnosed with Lupus 6 yrs ago and was tested for lyme. She was +, treated and now she's been symptom free for many years. I swear, all the unknown illnesses scare me.
Also many MS patients have been shown to have lyme and not ms.
One day there should be a reliable test for lyme and everyone should be tested. It really does mimic so many other illnesses.
 
You keep your chin up..........keep healthy, eat well and never give up.
I'm really happy you ladies are hanging in there
 
:-)
 
Jen

peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 10/26/2007 8:13 PM (GMT -7)   
AlwaysRosie said...
Hey Peacesoul . . . good for your rheumy!! YES! If a couple simple blood tests will rule out Lyme . . . it should be standard practice with symptoms so like lupus. Thanks for the update! It would be FANTASTIC if the Lyme meds cured you and NO lupus!!! I know it is still a long road, but hopefully you won't need ANYONE on HW every again!!

Blessings!

Hi, thanks so much.
You know, lyme is the fastest growing infectious disease (after HIV) and there is no wide spread proper testing. It's just insane.
At first my rheum was an arrogant jerk, but with enough emails and info, he was totally willing to work with me.
He is also going to work directly with my LLMD. I am very grateful.
It will be a long road, but it's been 13 yrs already so I am ready for more....bring it on ;-)hahha!
 
I will always need HW :-)
 
Blessings to you

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/26/2007 8:17 PM (GMT -7)   
13 years!!!!!!!!!! OH NO! All that time you were never properly dx'd??? Hey people out there . . . make sure you are proactive with your health care . . . no one knows more about you than you do!!! (and no one cares more either).

So glad you are finally on track to see an end to this.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 10/26/2007 9:14 PM (GMT -7)   
Hi Jen, Lyme disease huh? I'm glad they figured it out. I actually saw you were on here the other night and was trying to figure out where you were at. My rheumy and doctor are fighting over what is wrong with me. one says PBC and one says lupus. I just say Lord heal me so I don't have to deal with this crap anymore. Shoot it's enough to make ya crazy.
Yes please keep us updated on how you are doing. I'm so glad you stopped by.
Love ya
carol
God Bless
Lupus like symptoms, with pbc symptoms,but of course that is subject to change in a moments notice! End Stage COPD w/CHF, Cervical Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 3x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 10/27/2007 1:46 PM (GMT -7)   
okie said...
Hi Jen, Lyme disease huh? I'm glad they figured it out. I actually saw you were on here the other night and was trying to figure out where you were at. My rheumy and doctor are fighting over what is wrong with me. one says PBC and one says lupus. I just say Lord heal me so I don't have to deal with this crap anymore. Shoot it's enough to make ya crazy.
Yes please keep us updated on how you are doing. I'm so glad you stopped by.
Love ya
carol

Hey Carol.....:-)
Correction; they did not figure it out, I did!....hahah!
You mean your dr's are not sure you have lupus?
 
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