Help! Can anyone help explain these tests?

Hi all. I'm a 52 YO female, with many and varied symptoms. I've never really talked to my doc much about my problems as they normally come and go, although some last longer than others. Once I opened up at my physical I got a stern lecture about holding back things... I love my PC Doc. Anyway, after hearing my list of complaints he suspects Lupus. He ran an ANA With Cascade test and I have the results, but have no idea what I'm looking at. I've scoured the internet looking for answers, but it's all so confusing!!! I know the only person that can diagnose me is a doctor, and I do have a rheumatologist appointment July 9th, which sounds forever away to me. Plus after reading about people having doctor visits for (sometimes) years before a diagnosis.... yeeks! I'm not a big fan of doctors and run-arounds, so I'm dreading the process I'm afraid I'm about to go through.
I have many symptoms, joint pain which is at times extreme, swelling of my hands and feet, swelling of my ankles, memory and concentration problems which is totally unlike me, fatigue and near zero energy, had a bout of UTI's that finally ceased, intolerance to heat, the sun wears me out and drains me completely however doesn't seem to cause rashes, blurry and double vision, MRI results showing brain plaque in my arteries, headaches, bronchitis/pneumonia at least once a year, and an overall sense of feeling like poo. Symptoms come and go. I've always felt like a hypochondriac complaining to my hubby and adult daughter to the point I try to hold it in and not let them know how bad it sometimes is. They're very understanding, very supportive, but I feel like a total whiny butt.
I got my results back and am wondering if anyone else has had results similar or can explain what they mean or what they THINK they mean. Again, I realize no one can diagnose me except a doctor, but any input I could gain from you who have been through this would be soooo greatly appreciated.
Here are my results, for what it's worth...

Antinuclear Ab Reflex Cascade

ANA Direct POSITIVE ABNORMAL

Anti-DNA (DS) Ab Qn. <1 (Norm 0 - 9)

Smith Antibodies <0.2 AI (Norm 0.0 - 0.9)

Smith/RNP Antibodies <0.2 AI (Norm 0.0 - 0.9)

Antichromatin Antibodies <0.2 AI (Norm 0.0 - 0.9)

RNP ANTIBODIES 6.6 HIGH AI (Norm 0.0 - 0.9)

After this follows a list of Autoimmune Diseases with percentages that make no sense to me.

Can anyone please help? I'm ready for my appointment, have a list of every ache, pain, symptom and what have you and am just wanting them to tell me that I'm not crazy. In fact, I honestly think I'd feel relieved knowing I'm justified in my complaints! lol

Please, someone????

Blessings and Goodwill,
Becky

No, there's no numbers listed anywhere other than the ones I put in my post. At first all they gave me was the percentages and a call from the doctors office telling me the results were abnormal and he was referring me out to a rheumatologist. I actually went by the lab today and asked for a more detailed printout. Maybe now I need to go back and ask for the numbers you mentioned? Is there a specific name for those numbers?
I did the 4/11 test (online) and hit 7 of them.

Guess I'll wait until the 9th and start the process with the rheumatologist.

Thank you Becky20, that makes more sense to me. My doctors office has a lab in their offices, and nowhere on the printout is there an ANA titer number or anything about a pattern. I'm going to call and see if they have more information that just didn't print on to what they gave me. Most likely I'll have to wait for the rheumatologist to run their own set of test.
I appreciate the help!!!

Just because you have a positive ANA does not mean you have Lupus! Stay calm and keep breathing! It means you might have some sort of auto-immune disease. Lupus or other auto-immune disease is diagnosed by symptoms, where +ANA is just one of several possible symptoms. Blood work is no more important than symptoms with these kinds of diseases.

Check out Lupus 101, there is a somewhat lengthy post talking about ANA and what it means and doesn't mean, and what the pattern (speckled, homogenous, peripheral, rim, nucleolar, etc) can indicate.

Let us know if you have specific questions after reading that!

Is your finger & hip pain muscular or in the joints? Actually, either kind of pain can be from Lupus or an auto-immune disease. Sometimes we can get a bit of relief by making sure we are drinking enough water (to help wash out toxins) and soaking in warm Epsom salt water. An anti-inflammatory like ibuprofen is more likely to help than a pain-killer like acetaminophen.

Facial rash is very common, try to avoid the sun, and even florescent lights. Exhaustion - ie sleeping what seems like forever and still being tired - is also common. Try to eat healthy, maybe avoid sugars & carbs too close to bedtime, get a little exercise, even just walking to the mailbox, drink plenty of water - make sure the bedroom is dark, quiet and cool. These are just little things that sometimes help while we are waiting for diagnosis and/or meds to help us out.

Try not to worry while you wait for the rheumatologist appointment. These are very difficult diseases to understand and diagnose, and unfortunately they present differently in every patient. Even a rheumy often takes months to make a diagnosis and partially diagnoses based on a bit of trial-and-error by seeing which medications give us relief.

I'm sorry, you don't sound like I've been able to help much with the confusion. I hate that you say you'll go away and not bother anyone anymore - is there something specific I can help you with? You aren't a bother at all, but it seems perhaps we aren't communicating well. I'd like to be helpful....

I understand your cooling issues. I live in Northeast Georgia and I can't take this heatwave. During the day my AC is going full tilt and I'm sitting in a room with a large fan blowing on high with a ceiling fan spinning away. And I'm still hot!

Yes Yes Yes!!! Oh I feel so much better knowing it's not "hormones" like first suggested. I had to have a radical hysterectomy in my early 30's so I knew it wasn't menopause, or at least didn't think so. I've never been one to "argue" with a doctor, but must admit I've left their offices on many occasions thinking they were full of poo. I know my body, what's normal, what's not... Always had EXTREMELY low blood pressure (CCU for 2 weeks because of it) and now all of a sudden my BP has went up to the "low" high range. Not normal for me, not at all. Not sure if that's related to this or not?
I've not bought my husband an electric blanket for fear it'll get pushed over onto my side, lol. But he sure hunkers down into the covers. I've offered to sleep in the guest room but he doesn't want that.
Yes, my sleep is a lot of the times not quality, even though it's quantity. Makes for afternoon naps or lethargy. My rash on my face is more prominent today, but not ANYTHING like I've seen in some of the pictures on the Internet.
Yesterday afternoon my fingers were so painful I couldn't stand it any longer and went to my PC. He had a look and immediately ordered a shot of prednisone and then gave me 7 days worth (50mg per day) and I took the first dose last night. I can report that already it's helped, they're still a little stiff, but not nearly as painful.
Thank you thank you thank you for letting me vent and whine. Easier to do with y'all than with my family/friends for some reason.

Have a wonderful day!!!

Blessings,
Becky

Prednisone is probably helping the hip as well. Prednisone usually ramps people UP, so if you can take it in the morning you'll be better off - it'll keep you awake. Otherwise, by day 7 at 50 mg you won't be sleeping at all!!

Hi sb8880,

I actually saw your question posted in the Lupus forum as I was getting ready to click on the Lyme forum. I have Lyme, have had it for 30 years although I only finally got a diagnosis in fall of 2014. I have had most of your symptoms at one point or another, as well as multitudes of misdiagnoses. The top 5 misdiagnoses for someone who really has Lyme (and I've had many of these only to learn that I actually don't) are: Chronic Fatigue, Fibromyalgia, Lupus, Chronic Migraine, a Mental Health issue, and MS.

I am in no way suggesting you don't have Lupus! I just wanted to echo what member Rajaenchen said above: it's really good to try to eliminate every other possibility before embracing your diagnosis. As Lynnwood suggested, Doctors are still learning about these mysterious diseases too. There really are many autoimmune diseases that look just like lyme, or lupus. It's important they learn about every single one of your symptoms to help them make a diagnosis. Blood tests can't always tell the whole story, although they can help.

You may want to ask for a Lyme test as well at your appointment, if you haven't already. (But they are notorious for coming back as a false negative: as many as 50-60% of all Lyme tests that should show a positive come back negative because of their poor design.) The only trustworthy labs are Stonybrook and IGeneX, in my own long- and drawn-out experience. I got many many negative tests from other junky but well-reputed labs until the two above finally got it right. You can learn lots about that in the "New to Lyme" thread at the top of the Lyme forum.

On a separate note: please know that you are NOT a hypochondriac! This is a word that most of us with chronic illnesses have heard our whole lives/entire illness--from doctors, family members, friends. You KNOW your body and you know something is not right. Don't worry about being too pushy with doctors! It is YOUR life and YOUR health, you are right to question and challenge until you get answers. And most of us on all of these boards understand & welcome 'whining'--this is a hard road to travel. This is what most of us have had to learn the hard way.... I hope all goes well at your next appointment, that you get clear answers, and that you can start your road to healing!

Best,

MauHawaii

You are so welcome. I almost didn't answer because I don't want to steer you down a wrong path or make anyone angry on this Lupus forum! It's just that I had no answers until I found this HealingWell site so I'm trying to help others the way I've been helped. I hear you, there have been sooo many lifestyle changes: I also can't handle the sun/heat anymore. So tough in summer. :( And AMEN to your comments about a universal blood test!!! I've heard there are actually a couple in development. Fingers crossed!

Your PC (who sounds great) or Rheumy can draw the blood for you and send in to either lab. Stonybrook accepts insurance but you have to ask your PC if s/he will work with Stonybrook, as your doc probably already has another lab that they work with. Stonybrook used to have a state-of-the-art lyme research lab so they were the go-to lab for these tests and got much better results than other labs. But they no longer have that research lab, from my understanding... Your doc can contact them, or you can. They still do the basic lyme test. That's how I got my first positive test (CDC results below).

IGenex does not accept insurance, and their basic Lyme test is $200: you can then submit the receipt to your insurance for reimbursement. As far as Lymies go, IGeneX is the gold standard we look to for diagnosis. And even they can't make the diagnosis sometimes... Call IGeneX at 800.832.3200 or 650.424.1191 and someone will answer right away. They will mail you the kit for free to take to your doc with the forms to have the blood drawn. A doc must send it back to them--you can't do that part yourself.

Sometimes docs unfamiliar with Lyme aren't comfortable working with IGeneX lab (due to false rumors that IGeneX tests 'always' come back positive or that the lab isn't reputable), in which case you can go to any local clinic or hospital to have the blood drawn & sent back. IGeneX has a better result rate for those of us who actually have Lyme because they use a much more sophisticated and thorough testing procedure than all other labs in the US. That's how I got my second positive test result (below in my signature) that was much more detailed than my Stonybrook result.. It will take 3 weeks to get your results from them.

Well, I don't want to hijack your thread here all about Lyme so please feel free to check out that forum as well, if it's not too overwhelming. Or, email me anytime if you have more questions or just want to connect.

Maui

Hello sb8880

I have been through many of the same tests you have. Have many many of the same aches/pains and issues going on as well. After 12 vials of blood from the Rheumy, I had an abnormality in the cardiolipin Antibody and she wanted it re run in 12 weeks to see what it turns out as. In the mean time she diagnosis me with Fibro (I hate that diagnosis just as much as you do)

In the mean time through out all of this, I met a gal who has chronic Lyme disease. She begged with me to get tested (the correct way with Igenex in Ca and not the normal lyme test from your clinic as they are at least 60% false negatives) Well I found the money (as it is out of pocket) and I had the test done. I am positive for Lyme, in fact I have chronic Lyme disease, which means I have had it for quite some time, yet my body was fighting it (not winning yet fighting it) until I had a massive cervical spine surgery last June 2014. That surgery put me over the edge and ALL my symptoms multiplied by 10. Since that surgery and going down hill fast, I have doctor/specialist jumped and even had 6 trips to the Mayo Clinic. Nobody would say anything is wrong with me! I felt like I was losing my mind.

Well, after finally getting the results back from Igenex and showing that I am positive for Lyme (and btw, I was tested for Lyme by my primary Dr. and that test came back negative) I am now seeing a Lyme Literate MD (LLMD) these are medical doctors who basically are putting their license on the line every time they write a prescription for a diagnosis of chronic Lyme as the CDC does not believe chronic Lyme exists! Just Lyme and they say 3 weeks of antibiotics and you are good to go. That is not the case, especially with me. My LLMD told me that I am so chronic that I will need to be treated for a minimum of 3 years for this Lyme (ever changing medications, some antibiotics and some natropath) Well 2 weeks ago I started my antibiotics and I am doing exactly what the Lyme community says I would be doing and that is herxing (the lyme bacteria dies off and your body gets ill from the dead bacteria in it, so one needs to be sure to detox to rid your body of the dead cells) That is another story and can be read on the Lyme blogs and such.

Anyway, what I am getting at, is I highly suggest you get tested to Lyme disease. Even if you don't ever recall getting bitten by a tick. I pray you are negative unlike me, but when I read all your posts, I swear I am reading about myself.

Good luck, and keep us posted

Charliebug

Humm. Might want to get a second opinion from another rheumy, this one sounds a little ... "unusual" in her conclusions.