5 ms·

There's a lot of discussion of "inflammation" in this thread, but does this mean anything other than "feeling bad" in practice? It seems C-reactive protein (CRP

There's a lot of discussion of "inflammation" in this thread, but does this mean anything other than "feeling bad" in practice? It seems C-reactive protein (CRP) is the main biomarker for inflammation. Do people get tested for CRP to diagnose their triggers? I don't think I've ever been tested for it. Will a typical GP give you a CRP test if you ask for one?

nowandlater 6y ago
I see it in my lipid panel (there's heart disease risk in my family) so that may be one way to get it. But INAD and welcome other comments on how to ask for this; it may just be my gp.
treeman79 6y ago
At some point “feeling bad” turns into organ damage. CRP, is limited value test. In general my blood work is great, yet I have lots of internal damage. It’s just not progressed enough to show up on typical blood tests. Various antigen tests can pick up on it.
- dualthro 6y ago
  Which kind of antigen tests? I have had a CRP test that wasn't really indicative of any problems. I would love to be able to get a doctor to agree with me that there is something wrong.
- nojs 6y ago
  Could you explain in some more detail how you know you have lots of internal damage?
  - treeman79 6y ago
    Various Ultrasounds, cat scans. I basically don’t sweat. Tears are very rare. I cried for first child born, I didn’t for second, even though I felt the same. Was an early symptom. But felt bad for years. In case of pancreases, I got pancreatitis. Turned out that was an early sign of Sjogrens. At that point ultrasound was clean. Years later, Now it shows damage.
stonecraftwolf 6y ago
Not all autoimmune conditions show up in bloodwork, and sometimes they only show up when they’ve progressed to the point of organ damage. Typically this lack of positive tests is used to invalidate the experience of people with those conditions (usually women). This often seems to come from the implicit assumption that we know all the physiological markers and mechanisms of autoimmune disease, when nothing could be further from the truth. We know very little, and how a patient feels matters.
- aksss 6y ago
  I’ve met people with “all the markers but one” and thus never get a neat diagnosis of a known disease, and it’s very devastating to live with that kind of an unknown where doctors have so few answers or cures (not that they have all that much more with known AI diseases, but it’s more comforting to be bucketized than most people know). For lack of better solutions they can get put on daily prednisone for months (or years!) which causes a wholly different set of health challenges to manage the first. It can be very hard for folks walking homeless through a desert of autoimmune knowledge. Often my advice is, “what would you do if you had that last marker? Adopt a lifestyle as if you did: watch your food intake, do gentle but regular exercise, get plenty of sleep, reduce mental and physical stress, avoid excess (sun, drink, food, etc).” I’ve yet to meet anyone with a neat diagnosis that wants to be on immunosuppressive drugs, so even these folks must strive to manage their disease through disciplined lifestyle changes. I also understand the need for doctors to be measured in their diagnosis, so I don’t begrudge them for following protocols established for disease qualification. I don’t think of it as invalidating experiences of patients (though it can feel that way to patients) but everyone is aware of those that want a diagnosed health problem, and to a more frequent extent, those that want a tidy answer to their experiences even if there isn’t one. Denying a diagnosis of a known disease is not denying a diagnosis at all.
  - treeman79 6y ago
    Lost a year due to this. Had to push hard for further testing. Plus just trying the treatment. Had a big positive response. If I hadn’t pushed they would have just had me come in once a year to “check”. One of the factors that got me a diagnosis.
aksss 6y ago
You don’t need to ask a GP for blood work, just order it online and go to the lab, then get your results via the lab’s portal (e.g. Quest). I’m not sure these tests are good for diagnosing triggers though, compared to quarterly or biannual management of a disease (to make sure you’re not headed off the rails). The range for CRP, for instance, is relatively broad. What’s serious is when you’re exceeding the reference high. In these cases (like maxed out SED rate) chronic inflammation is a thing and more than “feeling bad”. It does lasting damage so the quicker you can respond to it the better, and IME that kind of inflammation sneaks up on a person and often goes undiagnosed until other downstream problems start to present themselves. There’s a bit of fashion to talking about “cytokine storms” and inflammation that is partly healthy to be aware of (and interesting to the seriously curious) but also a lot of faddish health nuttery lately. Be careful of the snake oil salesmen out there, folks. Diets, supplements, exercise equipment, OTC meds, are as often nets to harvest disposable income more than they are serious approaches to managing disease. For people suffering autoimmune disorders, much can be done with simple balanced diets and regular low stress body weight exercising. The key is avoiding things like excessive drinking, high mental stress levels, sleep dep. All the good advice for Puritan living that really applies to all of us, just that they have far, far lower tolerances for deviation. Response to NSAIDs may indicate what you’re fighting but if you’re there you’ve already failed upstream from where you are now. Chronic NSAID use isn’t all that great either but is often an unavoidable supplement for those trying to hold a normal career these days. This kind of internal feedback loop is more cost effective and probably more accurate for behavior correction than looking at daily blood work.
- dsizzle 6y ago
  Do you think SED rate is better than CRP then? It doesn't seem like I've had that test either. I have hypothyroidism, which can be autoimmune related, but no doctor has ever suggested either test, nor mentioned inflammation. I get TSH tested every 6 months though, and sometimes have to adjust Synthroid. I've asked about the causes of these fluctuations and doctors basically just shrug. I have no theory for it either.
  - treeman79 6y ago

nowandlater 6y ago

I see it in my lipid panel (there's heart disease risk in my family) so that may be one way to get it. But INAD and welcome other comments on how to ask for this; it may just be my gp.

treeman79 6y ago

At some point “feeling bad” turns into organ damage. CRP, is limited value test. In general my blood work is great, yet I have lots of internal damage. It’s just not progressed enough to show up on typical blood tests. Various antigen tests can pick up on it.

dualthro 6y ago
Which kind of antigen tests? I have had a CRP test that wasn't really indicative of any problems. I would love to be able to get a doctor to agree with me that there is something wrong.
nojs 6y ago
Could you explain in some more detail how you know you have lots of internal damage?
- treeman79 6y ago
  Various Ultrasounds, cat scans. I basically don’t sweat. Tears are very rare. I cried for first child born, I didn’t for second, even though I felt the same. Was an early symptom. But felt bad for years. In case of pancreases, I got pancreatitis. Turned out that was an early sign of Sjogrens. At that point ultrasound was clean. Years later, Now it shows damage.

stonecraftwolf 6y ago

Not all autoimmune conditions show up in bloodwork, and sometimes they only show up when they’ve progressed to the point of organ damage. Typically this lack of positive tests is used to invalidate the experience of people with those conditions (usually women). This often seems to come from the implicit assumption that we know all the physiological markers and mechanisms of autoimmune disease, when nothing could be further from the truth. We know very little, and how a patient feels matters.

aksss 6y ago
I’ve met people with “all the markers but one” and thus never get a neat diagnosis of a known disease, and it’s very devastating to live with that kind of an unknown where doctors have so few answers or cures (not that they have all that much more with known AI diseases, but it’s more comforting to be bucketized than most people know). For lack of better solutions they can get put on daily prednisone for months (or years!) which causes a wholly different set of health challenges to manage the first. It can be very hard for folks walking homeless through a desert of autoimmune knowledge. Often my advice is, “what would you do if you had that last marker? Adopt a lifestyle as if you did: watch your food intake, do gentle but regular exercise, get plenty of sleep, reduce mental and physical stress, avoid excess (sun, drink, food, etc).” I’ve yet to meet anyone with a neat diagnosis that wants to be on immunosuppressive drugs, so even these folks must strive to manage their disease through disciplined lifestyle changes. I also understand the need for doctors to be measured in their diagnosis, so I don’t begrudge them for following protocols established for disease qualification. I don’t think of it as invalidating experiences of patients (though it can feel that way to patients) but everyone is aware of those that want a diagnosed health problem, and to a more frequent extent, those that want a tidy answer to their experiences even if there isn’t one. Denying a diagnosis of a known disease is not denying a diagnosis at all.
- treeman79 6y ago
  Lost a year due to this. Had to push hard for further testing. Plus just trying the treatment. Had a big positive response. If I hadn’t pushed they would have just had me come in once a year to “check”. One of the factors that got me a diagnosis.

aksss 6y ago

You don’t need to ask a GP for blood work, just order it online and go to the lab, then get your results via the lab’s portal (e.g. Quest). I’m not sure these tests are good for diagnosing triggers though, compared to quarterly or biannual management of a disease (to make sure you’re not headed off the rails). The range for CRP, for instance, is relatively broad. What’s serious is when you’re exceeding the reference high. In these cases (like maxed out SED rate) chronic inflammation is a thing and more than “feeling bad”. It does lasting damage so the quicker you can respond to it the better, and IME that kind of inflammation sneaks up on a person and often goes undiagnosed until other downstream problems start to present themselves. There’s a bit of fashion to talking about “cytokine storms” and inflammation that is partly healthy to be aware of (and interesting to the seriously curious) but also a lot of faddish health nuttery lately. Be careful of the snake oil salesmen out there, folks. Diets, supplements, exercise equipment, OTC meds, are as often nets to harvest disposable income more than they are serious approaches to managing disease. For people suffering autoimmune disorders, much can be done with simple balanced diets and regular low stress body weight exercising. The key is avoiding things like excessive drinking, high mental stress levels, sleep dep. All the good advice for Puritan living that really applies to all of us, just that they have far, far lower tolerances for deviation. Response to NSAIDs may indicate what you’re fighting but if you’re there you’ve already failed upstream from where you are now. Chronic NSAID use isn’t all that great either but is often an unavoidable supplement for those trying to hold a normal career these days. This kind of internal feedback loop is more cost effective and probably more accurate for behavior correction than looking at daily blood work.

dsizzle 6y ago
Do you think SED rate is better than CRP then? It doesn't seem like I've had that test either. I have hypothyroidism, which can be autoimmune related, but no doctor has ever suggested either test, nor mentioned inflammation. I get TSH tested every 6 months though, and sometimes have to adjust Synthroid. I've asked about the causes of these fluctuations and doctors basically just shrug. I have no theory for it either.
- treeman79 6y ago