Update on Lyme Board Member w/15yr old daughter & positive ANA

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PainInFL
Veteran Member


Date Joined Aug 2007
Total Posts : 1428
   Posted 11/9/2007 9:47 PM (GMT -7)   
Hi Everyone!
 
Sorry I faded away a bit, I have been sick and also trying to get to the bottom of my daughters illness.  Her Lyme test was borderline (still waiting on another one) and her ANA is still positive, we are waiting on the exact titer.  She does have many LD symptoms, but as we all know that mimics other ilnesses and vice/versa.  My question is with Lupus, what's the normal titer for it, or is there even one.  She was negative for SCL70/Scleroderma (sp?) so I am still unsure.  When we do get her titer back, I am sure our PCP will put in the referral to a specialist.
She will be seeing a LLMD in December unless we find something else in the meantime. 
Her latest symptoms have been shakiness, palor, and chest pains.  She has about 30 other symptoms on top of that.
 
Thanks!
 
Anne
Dx-FMS 2006, CDC positive LD 8/07, Ehrlichiosis-HME 9/07, Hypocortisolism (Addison's Disease), Cervical Cancer Survivor. Probably infected with Lyme since a teenager 20 yrs ago.
Tx-Doxy, Tahitian Noni, Cat's Claw from Sept-Nov 07
Fentanyl, Percocet, Soma, Xanax, Protonix, Melatonin.
Currently only on Diflucan and pain meds to prepare for IV
 
 


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 11/10/2007 8:12 AM (GMT -7)   
Hi Anne, I really do know how frustrating all of this is - we are going through something similar with my 10 yr old son. He's had joint pain and fatigue for several years and we are still trying figure out if it's juvenile arthritis, a lupus like disease, a reactive arthritis or something else all together. I hope that some of these specialists can shed some light on what is going on with your daughter. My son has a positive ANA once in a while but it is usually a fairly low titer.

Hang in there and let us know if you have any other questions.
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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Co-Moderator: Lupus and CFS Forums



PainInFL
Veteran Member


Date Joined Aug 2007
Total Posts : 1428
   Posted 11/10/2007 8:52 AM (GMT -7)   
Hi hippimom!

I am so sorry your sone has been ill too. I hope you get to the bottom of it soon. I hope you do not rule out Lyme in his workups of tests. The regular labs aren't sensitive enough. You have to go through Igenex in CA or Central FL Research in FL. I wouldn't wish this horrific disease on my worst enemy.
I am hoping we will know soon on my daughter. I will let you know what the outcome is.

Thanks for your supoort!

Anne
Dx-FMS 2006, CDC positive LD 8/07, Ehrlichiosis-HME 9/07, Hypocortisolism (Addison's Disease), Cervical Cancer Survivor. Probably infected with Lyme since a teenager 20 yrs ago.
Tx-Doxy, Tahitian Noni, Cat's Claw from Sept-Nov 07
Fentanyl, Percocet, Soma, Xanax, Protonix, Melatonin.
Currently only on Diflucan and pain meds to prepare for IV
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/10/2007 10:12 AM (GMT -7)   
Hi Anne,

When you have a positive ANA, there is also a pattern associated with it. That pattern 'can' give the doctor a clue as to what Auto-immune issue they might be facing. There is a post about that in the topic "Lupus Resources". Link in my signature. I believe Lynnwood posted it.

Beyond the pattern, they can do more bloodwork work for other anti-______ titers (fill in the blank with many blood tests they do).

Hope this helps.

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


PainInFL
Veteran Member


Date Joined Aug 2007
Total Posts : 1428
   Posted 11/10/2007 11:25 AM (GMT -7)   
Thanks Rosie!

That's what we are waiting on, the titer along with the pattern. Can you tell me besides Lupus, what other automimmune diseases or on the pattern? MS, ALS, CFS, FMS...?

Waiting is brutal!
Dx-FMS 2006, CDC positive LD 8/07, Ehrlichiosis-HME 9/07, Hypocortisolism (Addison's Disease), Cervical Cancer Survivor. Probably infected with Lyme since a teenager 20 yrs ago.
Tx-Doxy, Tahitian Noni, Cat's Claw from Sept-Nov 07
Fentanyl, Percocet, Soma, Xanax, Protonix, Melatonin.
Currently only on Diflucan and pain meds to prepare for IV
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/10/2007 9:05 PM (GMT -7)   
Anne . . . the link I gave you above says this:

Lynnwood said...
More specific info on what your ANA test might mean:

The homogeneous (smooth) pattern is found in a variety of connective tissue diseases as well as in patients taking particular drugs such as certain anti-arrhythmics, anti-convulsants or anti-hypertensives. This pattern is also the pattern that is most commonly seen in healthy individuals who have positive ANA tests.

The speckled pattern is found in SLE and other connective tissue diseases, while the peripheral (or rim) pattern is found almost exclusively in SLE. The nucleolar pattern is found primarily in patients who have scleroderma.

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


PainInFL
Veteran Member


Date Joined Aug 2007
Total Posts : 1428
   Posted 12/5/2007 3:33 PM (GMT -7)   
Just wanted to thank you all for all the support and information you all have provided.
My daughter has had workups, etc since I last posted and all were negative or normal. Her ANA titer was positive at 1:40 but all other further testing was negative/normal.
She has been diagnosed with Lyme Disease and Mitral Valve Prolapse. She had an echocardiogram today and I have not seen one done before so it's a little scary. Hopefully it's not a serious problem for her.
All of her other abnormal labs are a result of the Lyme.
We are going to start treatment after the holidays as she will be going to visit family up in WI after Christmas and can't do IV up there.

My Dr. feels fairly certain due to her history that I passed the Lyme to her while pregnant or breastfeeding. She was also bitten by a tick 4 yrs ago so possibly reinfected at that time which sent her in a downward spiral.

It is very overwhelming but the only thing I know to do at this point is close my eyes and plow forward, right? Gotta do what you gotta do!!!

Happy Holidays Everyone & Thanks Again!

Anne
Dx-FMS 2006, CDC positive LD 8/07, Ehrlichiosis-HME 9/07, Addison's Disease, Cervical Cancer Survivor. Probably infected with Lyme since a teenager 20 yrs ago.
Tx-Doxy, Tahitian Noni, Cat's Claw, from Sept-Nov 07.
Current: 4g Rocephin 5 days on/2 days off, 1500 mg Flagyl, Urso Forte, Coumadin, Dexamethasone, Fentanyl, Percocet, Soma, Xanax, Protonix, Melatonin or whatever else works for sleep!
 
 
 

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