15 Yr Old Daughter-Positive ANA

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PainInFL
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Date Joined Aug 2007
Total Posts : 1428
   Posted 10/18/2007 6:12 AM (GMT -7)   
Hello,
 
I am a regular on the Lyme forum, because that is what I suffer from.  I suspected my daughter is infected and her Dr did a complete blood panel.
She was ANA positive, high protien, low T3, free.  She has several Lyme symptoms, except one I have not heard of.  Every so often (once a month or more), she has peeling skin on her palms.  Her palms are not red, they just peel.
I am going to have her tested for Lyme, but I know nothing about Lupus.  I know Lyme can mimic Lupus and have known some that have tested positive for Lyme with positive ANA tests.
She was actually bit by a tick 4 yrs ago and didn't find it to be significant until I was diagnosed, which was last month.  Around that time 4 yrs ago, she was very sick with flu like symptoms most of the winter.  I took her to the Dr and all they could say is she has a virus.  about a year later, she started to have behavioral problems and was dx with ADHD and Bipolar.  She was on meds for that for a year and a half.  I think she had heavy metal issues as well during that time as she had braces.  about 6 mos after the braces came off, her behavior improved drastically.  I do not believe she is bipolar.  Currently, she has started to have problems again concentrating, has extreme chemical sensitivity, joint & muscle pain, headaches, dizziness, chronic sore throats, vertigo, confusion, disturbed sleep, fatigue, occasional muscle twitches, and many other symptoms specific to Lyme.  We go back to the Dr tomorrow morning.
I know there are several overlapping conditions here, but I was hoping someone could shed some light on Lupus a bit.
 
When the ANA test was positive, the lab did a couple? SCL70 tests for Jo-1 and scleroderma, which were negative.
 
Any help or input would be greatly appreciated.
 
Thanks!
 
Anne
Dx-FMS 2006, CDC positive Lyme Disease 8/07, Ehrlichiosis-HME 9/07, Hypocortisolism, Cervical Cancer Survivor
Tx-Doxy, Tahitian Noni, Cat's Claw, Fentanyl, Percocet, Soma, Xanax, Protonix, Ambien and tons of vitamins and minerals!
 
 


CNSKris
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Date Joined May 2006
Total Posts : 236
   Posted 10/18/2007 6:59 AM (GMT -7)   

Has your daughter had an extensive work-up for Lupus?  I have central nervous system lupus.  Originally (for 10 years), I only had neurological signs like that of Lymes or MS.  After 10 years it started to attack my organs wherein the doctors finally started checking me out for Lupus.  Unfortunately, have a more severe form of the disease.  From what I understand most do not have it severe.  Those 10 years I had basically the same symptoms your daughter has.  There are many diseases apparantly that cause these symptoms, such as MS, Mathias Gravis (?spelling), Lymes, Lupus, etc.  I do know MS is very very similar to what your daughter is experiencing also and she should be worked-up for this also.  A spinal tap may help with a diagnosis of MS or CNS Lupus, so I would stress the importance of that test.  Also, MRI, EMG and EEG would be appropriate for this type of thing.  I also had neuropsychological testing done which may be helpful in your daughter's case.

I do wish you both the best.  These types of symptoms are very complicated and frustrating.  I hope you find your answer soon.  I hope this helps you some.  I will be happy to help out any way I can.  Best wishes - Kristin


 
  Dx:  Lupus CNS 11/2005; Current - Mitral valve sclerosis, MVP/regurg, dementia; GERD; vision loss, narcolepsy, RA, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 10/18/2007 7:07 AM (GMT -7)   
Oh wow Anne! Welcome to the forum.

Oh you must be at your wits end. Lupus all by itself is difficult to diagnose. You've certainly got a brain teaser.

One thing you might check . . . the positive ANA should indicate a pattern. Certain patterns are indicative of certain diseases . . . but not absolutely.

Here is a quote from one of Lynnwood's posts:

___________________
"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."
___________________

I think you might benefit from reading through the posts in Lupus Resources. There is a link at the end of my signature. We have compiled quite a bit there and it includes some good info on preparing for a Dr visit.

One big suggestion, when her hands are peeling . . . take pictures of various stages of that. If she has any skin rashes or mouth/nose sores, take pictures. You can bring these with you to the Dr appt . . as they never seem to be active when we have our Dr. visits. Lots more tips in the Lupus Resource topic.

I don't know how to read all the other blood work. I look it up as it applies to myself or someone else and then promptly forget how it fits. www.Labtestsonline.org has some basic info on lots of blood work.

I hope you'll keep us posted.

Blessings!

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
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Date Joined Aug 2007
Total Posts : 1428
   Posted 10/18/2007 8:21 AM (GMT -7)   
Thanks to both of you!

I did get a copy of her labs a week ago so I could do research. I have learned a lot about labs from having to figure out the Lyme Disease for myself. I am just so confused right now. My daughter has not had any workup whatsoever for Lupus, just the positive ANA. I was going to go straight for the Western Blot Lyme test and I still probably will first and then do whatever the Dr recommends after that to rule out all other possibilites. I was just very confused about her peeling hands and about 6 mos ago, she got a rash inside her elbows, knees and other areas which do not get much air. The Dr put her on Bactrim, a methylpred pack and hydroxyz. I honestly don't think it did much good as it did not go away until a week or so after the meds were gone.

I appreciate your quick response. I will keep researching.

Thanks!

Anne
Dx-FMS 2006, CDC positive Lyme Disease 8/07, Ehrlichiosis-HME 9/07, Hypocortisolism, Cervical Cancer Survivor
Tx-Doxy, Tahitian Noni, Cat's Claw, Fentanyl, Percocet, Soma, Xanax, Protonix, Ambien and tons of vitamins and minerals!
 
 


PainInFL
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Date Joined Aug 2007
Total Posts : 1428
   Posted 10/18/2007 8:28 AM (GMT -7)   
One thing I forgot to mention...

I know Lyme and Lupus are both diseases that mimic many others. I have two other daughters as well who also have some symptoms of Lyme. This is just so stressful considering what I am going through right now.

Is Lupus a hereditary condition? There has been some proof that mothers can pass Lyme to their unborn child.

Thanks again!
Dx-FMS 2006, CDC positive Lyme Disease 8/07, Ehrlichiosis-HME 9/07, Hypocortisolism, Cervical Cancer Survivor
Tx-Doxy, Tahitian Noni, Cat's Claw, Fentanyl, Percocet, Soma, Xanax, Protonix, Ambien and tons of vitamins and minerals!
 
 


PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 10/18/2007 8:49 AM (GMT -7)   
Anne,

Welcome to the forum. You daughter is really suffering and I can just imagine how awful and frustrated you must feel. My 20 year old daughter also has a positive ANA and renaud's but absolutely no other symptoms and acts and feels as healthy as a horse. And yet I still worry about her. Sounds just like a mother, right? What kind of doctors has your daughter seen? I hope you get her into a good rheumatologist and I know you'll keep digging till you find some answers. Many if not most of us have gone from one doctor to another in an attempt to find one who'll take the time and effort to get some answers for us.

There is evidence that lupus is passed from mother to daughter. My mom had lupus and so do I. I pray my daughter never comes down with it.

Take care of yourself. You don't mention how you're doing but I can just imagine the stress this puts on you.

Hang in there,

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


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4392
   Posted 10/18/2007 9:51 AM (GMT -7)   
Just chiming in with a couple more things to rule out: Thyroid problems, and gluten intolerance. Both can cause many of the symptoms you listed. I hope the doctors are able to figure out what's going on.

Take care,
-Razzle
Gluten & Sulfite Sensitivity, Multiple Food & Inhalant Allergies, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD (Lupus?), Osteoporosis, Anemia, malabsorption/malnutrition, etc.
Meds:  Pulmicort, Claritin, Injectable Vitamin B12, Herbs, Nutritional Supplements, Essential Oils, Homeopathy.


CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 10/18/2007 11:36 AM (GMT -7)   
Wow, I never heard of an entire family with Lymes before. Kind of scary to imagine. The woods are bad where I live too. Could there be a history of any types of autoimmune diseases in your family tree? In answer to your question...Yes, in many cases lupus and/or other autoimmune diseases do run in the family. For me it is my grandfather and cousin on my mother's side. Also they believe my daughter has lupus. She is famous for those rashes that you cannot treat with anything. Stomach, dry areas and the butterfly rashes for her as well as CFS/epstein barr, liver, psych and neuro problems. So far her ANAs are negative though.

I would agree with testing for lymes first since it sounds likely. Let us know how it all works out - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - Mitral valve sclerosis, MVP/regurg, dementia; GERD; vision loss, narcolepsy, RA, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


PainInFL
Veteran Member


Date Joined Aug 2007
Total Posts : 1428
   Posted 10/18/2007 2:24 PM (GMT -7)   
I really appreciate all the valuable info!

No family history of any autoimmune diseases. I will have all checked for sure if the Lyme comes back negative. The whole reason I started this crusade is because there has been some evidence where Lyme can be transmitted through the placenta and I would have most likely been infected at that time. My 15 yr old was first on the list to be tested since she has several symptoms and she was also bitten by a tick here in Florida. Our wooded lot next door is full of them (yuck!). You would be surprised how many entire families are infected-especially in the highest risk areas. It's a really scary disease. I myself have severe symptoms as well as severe cortisol levels (.5 and less ALL DAY long).

I know that is a different topic for a different forum. I will keep you posted though even if she does in fact have Lyme, and if you don't mind, I may check in from time to time with questions on recommendations/tests/referrals the Dr recommends. She is currently seeing a GP.

Thanks again for all your wonderful help and support!

Anne
Dx-FMS 2006, CDC positive Lyme Disease 8/07, Ehrlichiosis-HME 9/07, Hypocortisolism, Cervical Cancer Survivor
Tx-Doxy, Tahitian Noni, Cat's Claw, Fentanyl, Percocet, Soma, Xanax, Protonix, Ambien and tons of vitamins and minerals!
 
 


PainInFL
Veteran Member


Date Joined Aug 2007
Total Posts : 1428
   Posted 10/22/2007 3:31 AM (GMT -7)   
Just wanted to give you all an update...

The Dr. highly suspects Lyme is causing her symptoms and thyroid issue. She prescribed a low dose of Syntharoid and we are moving forwarded with Lyme testing this week.

Thanks for all of your suggestions and support. I will keep you posted as to how her test results come out.

Thanks!

Anne
Dx-FMS 2006, CDC positive Lyme Disease 8/07, Ehrlichiosis-HME 9/07, Hypocortisolism, Cervical Cancer Survivor
Tx-Doxy, Tahitian Noni, Cat's Claw, Fentanyl, Percocet, Soma, Xanax, Protonix, Ambien and tons of vitamins and minerals!
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/22/2007 4:49 AM (GMT -7)   
Hi Anne . . . . I hope the Lyme's is a better dx than lupus. It would seem that there's a good chance for a full recovery . . . but I don't know much about lyme's. I wonder if the lyme's is causing the thyroid stuff and maybe that will disappear too, when the Lyme's is treated.

Glad the doc is on the ball with 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


PainInFL
Veteran Member


Date Joined Aug 2007
Total Posts : 1428
   Posted 12/17/2007 10:51 PM (GMT -7)   
Hi Everyone,

Just wanted to let you all know that my daughter has a very positive Lyme test through Igenex Labs in CA and is starting treatment soon.

My Lyme Doctor strongly suspects I passed it to her while pregnant or breastfeeding and then we believe she was reinfected by the tick bite in 2003 as her symptoms got worse after that. He also said it is very common for Lyme patients to have a positive ANA.

Thank you all so much for all of your support and best wishes to all of you in your treatment. If I can tell you just one thing here with these diseases being so similar, don't rule out anything if you do not have a definitive diagnosis! At least we are now going to get her the proper treatment instead of having major anxiety as to what's going on.

Happy Holidays Everyone!

Anne
Dx-FMS 2006, CDC positive LD 8/07, Ehrlichiosis-HME 9/07, Bart 12/07, POTS, Diabetes Insipiidus, Addison's Disease, Cervical Cancer Survivor. Infected as a teenager 20 yrs ago and probably reinfected in 2004.
Current Tx: 4g Rocephin 5 days on/2 days off, pulsing 1500 mg Flagyl, 1000 mg Zithromax/600mg Rifampin, Urso Forte, Coumadin, Dexamethasone, DDAVP, Questran, Fentanyl, Percocet, Soma, Xanax, Lunesta 
 
 


PainInFL
Veteran Member


Date Joined Aug 2007
Total Posts : 1428
   Posted 3/2/2008 2:10 AM (GMT -7)   
Update...

My daughter is doing great on antibiotics now. We had a few bumps in the road when she was allergic to one of the meds. She is starting her third month of treatment. I am in my 8th month. Sadly, my other two daughters have tested highly positive and will be starting treatment soon. They too got infected from me during pregnancy/breastfeeding. I feel terrible but I cannot change the past, but I can do my best to ensure they get the best treatment and nip this thing in the bud so they don't end up like me. Hopefully, they will both respond as well and as quickly as Karisa has.

I had a major setback right after my last post that may be of interest to you or someone you know. I have a PICC line and use Heparin. There was a major recall in the product from a company called Sierra Pre-Filled as it was contaminated with a gram negative bacteria called Serratia Marcescens. I was one of 13 people in the two FL Panhandle counties that got sick. I was extremely ill and could have died from it but made it through and my final culture came up negative a few weeks ago. It was quite the scare. Needless to say, I have found an excellent lawyer. I still have bad side effects from the infection. It was the last thing I needed!
Since that recall, there has been another from a company called Baxter. So, if you know anyone that uses Heparin (typically cancer, leukemia, lyme, anyone with an IV that does infusions at home) please pass the word. There has been several deaths and many people who are already chronically ill becoming sicker. Very Sad!

I hope you all are doing well. If I every come across anyone that has or suspects they have Lupus, I will send them your way. You are all such a great bunch of people!

Take Care,

Anne~
Dx-LD, Ehrlichia, Bart, Addison's Disease, Diabetes Insipidus, POTS, LD since 1988.
Tx-Doxy 9-11/07.  Pulsed Rocephin/Flagyl/Rifampin/Zith 11/07-1/08. Infected by contaminated Heparin Syringes with Serratia 12/07.  Current Tx-Rocephin 2g 2x day/5 days week & 1500mh Alinia daily.  Teenage daughters infected from placental/breastfeeding transmission,  one in treatment, one starting tx in March, one  waiting on Igenex test results.
 Co Moderator for Lyme Disease Forum


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 3/2/2008 6:49 AM (GMT -7)   
Hello PainInFL.
I was reading your post I'm glad you found the right treatment for your daughter. Hope your other children will do just as well. You had some rough months wish you and your family good things to come. [img]/community/emoticons/smile.gif[/img]

Post Edited By Moderator (Lynnwood) : 3/2/2008 8:23:59 AM (GMT-7)


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 3/2/2008 2:26 PM (GMT -7)   
Hi Anne,

Oh my!! You've had it really rough . . . and with sick children to boot. (((((((Anne))))))

Thanks for the heads up on the heparin and Picc lines. I'll make a new topic to try and alert members who may be affected.

I'm glad you are finally starting to feel better.

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


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 3/2/2008 2:27 PM (GMT -7)   
I'm really sorry to hear that you were affected by the bacteria and got so sick - that must have been really scary. I'm also to hear about your other children, but I am hoping that treatment will help and that you will all start feeling better. 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; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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