Good News - Bad News - my turn for blood test results

[Deanna in CO]

Hi all,

I saw my doctor's nurse practitioner last week because I have had swollen glands for at least several weeks, and pain in my right side. (The pain feels like what I get from my hiatal hernia, only on the other side and mostly in my back.). She diagnosed me with lymphadenitis (essentially inflammation/infection of the lymph nodes) and costochondritis (inflammation/infection of the cartilage where it connects to the ribs), and ordered a whole bunch of blood tests and prescribed clindamycin (which I have not yet taken as I was waiting for the blood tests to see whether there was any sign of infection).

The blood tests came back with good and bad news. First the good:

1) The CBC, metabolic panel, white blood cell count, liver function tests and sed rate all came back perfectly normal. So I don't appear to have any infection and hopefully can avoid the antibiotic.

2) My vitamin D, which was only 36 in April though I was taking 6000 IU per day, jumped to 89! (I've been taking 10000 IU per day since the last test two months ago - apparently that was enough!) For those who know about this kind of thing, does this mean I should cut back some? And if so, any thoughts on how much?

Now the bad: my ANA was positive - speckled pattern, titer 1:160. A positive result automatically triggers further testing for lupus, Sjogren's syndrome, and a couple of other things. Those tests aren't back yet and the doctor's office doesn't know for sure how long they will take. From reason here, it would appear this isn't a huge concern, especially since it's obvious I have significant inflammation, between my asthma flare a couple of weeks ago, my still-not-in-remission-though-much-improved MC, my swollen lymph nodes and pain in my side, and so on. I assume there is a possibility I may end up with a referral to a rheumatologist.

Any thoughts on all this? Anything I should be aware of or ask for? (I am thinking I should ask for a CRP test - it's the one thing I still haven't had done and I think it will make sense in light of my positive ANA in particular.). Also how often do you think I should have some of these tests repeated? Every 6 months? Once a year? My doctor's office is pretty cooperative within the limits of what Kaiser will allow - they've done a lot of testing for me over the past few months and I don't want to ask them for more frequent testing than I need. But if I can give them solid reasons behind what I'm asking for, they'll generally do it.

Thanks for sticking with all this! :-)

Deanna

[Fish2575]

Hi Deanna,

I am sure someone more qualified will answer your post, but since I saw this I thought I would offer you some reassurance and my limited knowledge. I have Lupus, and my ANA is 1:640, so in light of that, yours is relatively low. (it goes 1:160, 1:320, 1:640 and on I guess) I believe the Antinuclear Antibody (ANA) simply means that your body is attacking its own cells and it seems to me that this could be positive because of microscopic colitis. I get my ANA drawn once a year by the Rheumatologist. I hope someone gives you a better answer, but hoping a little encouragement helps!

Susie

[tex]

Hi Deanna,

You can probably drop back down to 5,000 or 6,000 IU of vitamin D per day (especially now that summer is here), and then fine tune the dosage after you redo the test the next time you order some blood tests. How high do you want your blood level to be as a steady-state goal? That goal will determine the supplement rate that is needed.

With a normal sed rate, as Susie mentioned, I wouldn't get too excited about the development of additional autoimmune issues. IMO, your results simply mean that the potential is there, but there are various ways to minimize the risk. I truly believe that diet is the first line of defense against the development of AI diseases, and you are already controlling your diet, so you are already taking the best steps you can, to minimize the risk. And your normal sed rate verifies that not much is going on in the inflammation department.

With a positive ANA, you will probably be referred to a rheumatologist, but please don't let him or her stampede you into taking treatments that aren't actually justified. Let your body be your guide. That applies to the frequency/timing of tests, as well -- if you're having significant issues, then more frequent tests are probably in order. Without an increase in symptoms, tests are probably a low priority item.

Tex

[Deanna in CO]

Tex,

Thank you. I will cut back some on the vitamin D, though I want to keep my level high. I'm not an outdoorsy person - I don't enjoy gardening or hiking or really even picnicking - so I depend on supplementing vitamin D.

I also appreciate the advice about the testing. I wouldn't have asked for this testing except for the swollen glands and the pain in my side/back. As I read the symptoms for most of the other disorders, I don't see evidence that I have any of them except perhaps Sjogren's syndrome. The new tests (triggered by the elevated ANA) should rule that in or out. (Of course all the smoke in Colorado right now doesn't help my eyes one bit!)

Anyway, your counsel is always welcome. I don't know if Kaiser's doctors will refer me to a rheumatologist unless these additional tests are positive anyway, but if they do, I will definitely avoid taking anything unless I'm sure I need it. I've already decided not to take the Clindamycin for now.

Thanks again!

Deanna

[tex]

Deanna,

As you are aware, if those tests should come back positive, that could trump most of what we've been discussing here, but hopefully that won't happen.

I agree, smoke really does a number on my eyes, also.

You're most welcome,
Tex

[Fish2575]

One thought about that. I have found all of my lupus symptoms are tied to my gut, and I think there is a lot of theories about that now. So it is reasonable to think that healing the gut may stop the autoimmunity in other areas of the body. Keep us posted as to what you find out.

[Zizzle]

Hi Deanna,
I've been in your shoes...for quite some time, and I'm living proof that a +ANA is not something to stress over most of the time (I wish my level was 1:160!!). My ANA has been between 1:640 and 1:1280 and speckled for 7 years. I was referred to a rheumatologist after a post-partum skin rash prompted the ANA test. I was positive for a few other antibodies, but not a slam dunk for any specific AI disease. I went 5 years and one normal pregnancy with no follow-up, but finally got rechecked after the MC diagnosis. I've never had an elevated CRP, and my SED rate was normal until this year. I am convinced my GF/DF diet has helped keep the AI symptoms under control.

My PCP was checking my ANA, RF and ASMA antibodies (the only positive ones) every 6 months, plus a SED rate, CBC, Vit D and B12 level, and chem panel (for liver function). Last year, we agreed I could switch to only once per year. However, this year, a new rash emerged, similar to my rash of 7 years ago, and I was off to a rheumatologist again. I've been diagnosed with Undifferentiated Connective Tissue Disease. My rheumy said 25% of his patients are like me - with no specific AI disease, and mild, often non-specific symptoms. He said people like me can stay in this limbo forever, and can be helped by eating gluten-free. He also said the longer you can go without developing a defined AI disease, the less likely you are to ever develop one. Of course I don't know where MC fits into all of this, since my rheumy and dermatologist barely acknowledge it!

Now I seem to be slipping towards Amyopathic Dermatomyositis (patchy skin inflammation), and again, I hope I can stay in relatively-disease-free limbo. This will require sun avoidance.

Regarding your Vit D level, if it were me, I would aim to have it below 60, so I would decrease the supplement. I take 4,000 IU/day (when I remember it!) and my levels are in the 30s after an initial level of 17 two years ago.

Good luck with the follow-up tests and please keep us posted.

[Fish2575]

Zizzle,

I got skin prickles when I read your story! Almost identical to mine.....I have to say, I have been in the sun the last 3 days with no problem, and it has only been since I started taking Histame! I think my rash and sun sensitivity which got me the Lupus diagnosis were all histamine related. I didn't have any rashes for the last 7 years and mine just popped up again. I started taking Histame and it has already gone away. Now that I am getting the histamine in my gut under control I can be in the sun again! I highly recommend trying the histame if you haven't already. Isn't it so weird how pregnancy does this to us. My stuff all started right after I had my first child.

They originally classified me as UCD too, but when my C3 and C4 were low they reclassified as Lupus.

Deanna, All that to say, I am doing pretty well too! Hopes and prayers for the best results on your tests!

[Zizzle]

Wow, Fish! And I thought Jenny was my long-lost autoimmune twin! We have to compare notes!! I've never come across a story even remotely similar to mine. Everyone has a defined disease and lots of meds to show for it. I'm trying to remain drug free. My parents now think I'm a hypochondriac, but these rashes and the MC diet are a constant reminder of something brewing below the surface.

[Fish2575]

Zizzle,

Isn't that so funny....how can someone see a rash on your arm and think it is all in your head? I did want to say that I was "sun-free" for the last 7 years, and I found a lot of good sun protective clothing that I thought I would share. The North Face and Patagonia both have sun protective shirts and pants that are stylish and help with the sun. I bought a pair of sun gloves and a hat from Coolibar that I don't leave home without. They also have zip up swim shirt that I wear in the water. It is such a pain, but I always scan any outdoor location and make sure to find the shade. I do think it is possible that all of the rashes and sun sensitivity are related to what is going on in the gut. I went without the Histame for two weeks because I ran out, and the rash came back on my elbow and I couldn't be in the sun without itching. All is well now that I have been back on it for two weeks! I know we are all different, but it sure is nice to be able to feel like someone else understands!

Susie

[Zizzle]

Susie,
I just bought a tankini from Lands End with a 3/4 sleeve zip up SPF rashgoard to wear over it. The derm thinks I'm OK to get some sun on my legs, since I have no reactions below chest height. I'm a couple rashes short of having all the signs of Amyopathic Dermatomyositis. All I'm missing is red elbows and knees, and the heliotrope rash on the eyelids. I do get blood-red dots on the eyelids that come and go.

I recently read that DM patients get acetic acid (vinegar) compresses in the hospital to treat the rash. I've been wondering why it would help? My biopsy showed leukocyte infiltration of the skin (much like the LC in my gut!), and I wonder whether my immune system is attacking some bacteria residing on my skin. Maybe the vinegar kills or alters the bacterial make-up on the skin???

I just read this abstract which more closely explains my version of the "hygeine hypothesis" -- that we are all too clean. It's not that we don't have enough bacteria and viruses around us, it's that we lack biodiversity of them in urban areas. That's why farm kids don't get allergies. They are exposed to a greater variety of flora. I think I need to go roll around in organic manure to get recolonized with something else!! Maybe do compresses with fermented foodstuff?

http://www.pnas.org/content/109/21/8334 ... source=mfr

Abstract
Rapidly declining biodiversity may be a contributing factor to another global megatrend—the rapidly increasing prevalence of allergies and other chronic inflammatory diseases among urban populations worldwide. According to the “biodiversity hypothesis,” reduced contact of people with natural environmental features and biodiversity may adversely affect the human commensal microbiota and its immunomodulatory capacity. Analyzing atopic sensitization (i.e., allergic disposition) in a random sample of adolescents living in a heterogeneous region of 100 × 150 km, we show that environmental biodiversity in the surroundings of the study subjects’ homes influenced the composition of the bacterial classes on their skin. Compared with healthy individuals, atopic individuals had lower environmental biodiversity in the surroundings of their homes and significantly lower generic diversity of gammaproteobacteria on their skin. The functional role of the Gram-negative gammaproteobacteria is supported by in vitro measurements of expression of IL-10, a key anti-inflammatory cytokine in immunologic tolerance, in peripheral blood mononuclear cells. In healthy, but not in atopic, individuals, IL-10 expression was positively correlated with the abundance of the gammaproteobacterial genus Acinetobacter on the skin. These results raise fundamental questions about the consequences of biodiversity loss for both allergic conditions and public health in general.

[tex]

It's not that we don't have enough bacteria and viruses around us, it's that we lack biodiversity of them in urban areas. That's why farm kids don't get allergies.

As a bona fide "ignernt ol' farm boy", I have to respectfully disagree with that theory. Having grown up on a farm, and having lived there most of my life, unrestrained exposure to allergens certainly didn't work for me. I played in the dirt constantly, stomped around barefoot in livestock manure of every description, drank creek water, had to be wormed when I was a few years old, etc.

And yet, I had asthma so bad that when I was 11, I would have died one night if the local doctor hadn't been willing to come out at 2 o'clock in the morning to give me a cortisone shot so that I could breathe again. I was already turning blue. I've had hay fever most of my life (the only time I didn't have it was when my MC was active and my immune system was obviously focusing on it). My hay fever is triggered by virtually any yellow pollen, both in the fall and in the spring, and also by mold, year-around. Fortunately the asthma let up when I reached my 20s, but the hay fever became much worse.

My skin is allergic to contact with virtually any plants. If I don't wear a long-sleeve shirt and full-length jeans and boots, any contact with most plants will result in not only an immediate, extremely itchy rash, but also large red welts (wales). In fact, on many occasions when I was weeding grain fields, and sweating like a pig for hours, the perspiration would apparently carry the allergens through my shirt, because after a session of that sort, my ribcage, back, and belly would be covered by huge, red, itchy welts, that would take at least half a day to fade away. At the time, it never occurred to me that they might mean anything -- they were just a nuisance.

IOW, I may not have a prize-winning set of allergies, but my collection is not exactly shabby, either. I am certainly qualified to contradict claims that "farm kids don't get allergies". I have a hunch that research articles promoting the concept of "inadequate biodiversity" are based on "creative" data selection. There's a lot of that going around in medical research circles these days, mostly by folks who didn't grow up on a farm.

Tex

[Zizzle]

Then again, Tex,

when I was weeding grain fields

You were living and working on grain fields, not kale plantations. Your allergies may have been the result of grain and gluten sensitivity from day 1, no? Perhaps you would have done better on a fruit or vegetable farm? Then again, all the herbicides and pesticides in the surrounding farmlands may have played a role in your sensitivities. I believe most of the research compares city kids to Amish kids, who have a distinctly different set of genetics, and usually grow foods and animals in an environmentally-friendly way. Not to mention they don't eat processed foods, get plenty of exercise and sun, are breastfed, etc, etc, etc, etc.

So I guess there is no comparison. But I do think urban dwellers are too sourrounded by human bacteria and viruses, and not enough animal and vegetable bugs. Then again, that's how we get swine and bird flu, deer ticks, etc. So I don't know the answer... We're just screwed.

[tex]

So I guess there is no comparison.

It appears that you are confused, or perhaps disillusioned. I wish I were as young as you seem to think I am, but unfortunately a lot of water has passed under my bridge. When I was a kid, I was the equivalent of an Amish kid today. We used no herbicides, nor pesticides in grainfields -- those didn't come until I was in my 20s. When I was a kid, most farm work except plowing, was done by hand. In those days, we grew food and animals in the same way that the Amish do today (yes, early on, we used horses for plow and wagon power). The smell of sweaty horses pulling a wagon leaves an indelible imprint in one's brain, because scents leave the strongest memories. That's a memory that's foreign to about 99.9% of the people living in this country today.

Note that people who are gluten-sensitive can safely eat wheat plants without a reaction, as long as they do not eat the grain of a mature plant. Celiacs can also rub wheat plants on their skin without fear of developing dermatitis herpetiformis. Conversely, I have never had a skin reaction to any grains themselves (only the growing plants are a problem). I can immerse my bare arms in wheat seed or any other grain, with absolutely no ill effect (in fact, I do it with some regularity, because I have a grain-cleaning facility -- skin contact is never a problem). It's living corn plants, grain sorghum, and vegetable crops, that abuse my hide. If I pick fruit or vegetables I even get a rash on my hands, so it's an even stronger reaction than the reaction caused by grain plants (so growing fruit and vegetables rather than grain certainly would not provide any benefits for me).

As a kid, I ate a minimum of processed foods (we grew at least 90 to 95% of our food, or better, and we did all our own processing). If you had grown up on a farm, you would recognize the phrase "plenty of exercise" as a ridiculous joke, for a farm kid. Working from daylight to dark, 6 days per week, provides "plenty of exercise", and plenty of sun exposure. Yes, I was breastfed, etc., etc., etc.

So I repeat, that theory comparing farm kids to city kids doesn't hold water. It's fabricated by Johnny-come-latelys who don't have the foggiest idea of what life was actually like on the farm back in those days. They're just flailing around fishing for answers, but they don't know where to look, so they carefully pick and choose their data to get the results they need to reach the conclusions that they want to confirm. It's mostly pseudo-science.

Tex

[amberlink09]

Hey Deanna,

This is strange, because that happened to me twice last year. I had it first on my chest and then on my side. My urgent care doc suggested costochondritis as well, but the second time it happened I went to my regular doc and she said it was shingles minus the rash.

At that time I was also seeing an immunologist who was worried about lupus, and they found that I also had the 1:160 ANA but my sed rate was fine, so she decided that we are going to just make sure we keep testing the ANA every 3-6 months to make sure it's not going up.