Which immune tests to get?

[SOC]

Been through a bad month :In bed:, so please forgive me if I'm not clear or am asking for info already available. I've been trying to read some relevant threads, but the necessary cognitive function isn't there to process it all. :headache:

Neither daughter nor I have had immune function tests. I think that is the next step for us (probably long overdue, actually), but our current specialist doesn't do them. I'd love to see Dr Klimas, but we simply can't afford it. I'm hoping to get some immune function tests done locally and perhaps see if we can get a local immunologist interested enough to try to help. Our local mega medical monopoly has not been at all helpful so far with ME, but if I can convince them to run immune tests we might get somewhere.

What immune tests should I ask for? I'm assuming NK cell function is critical. Is asking for a "NK cell function" test sufficient or do I need to be more specific? Are there any other tests that would be useful in documenting a serious immune problem? We can assume my PCP is completely ignorant about this. My best hope is to freak her out enough with test results to get her to refer us to an immunologist.

What are the best papers/references to convince the PCP that these tests are appropriate? The is a mega medical practice that follows the CDC line slavishly about ME, so they might require convincing that immune tests are appropriate for ME patients.

Wish I didn't feel like crap and could do this research on my own. Seems like this latest setback has affected me in ways others haven't. :sad: While I don't feel fluish, like I have in past relapses, my energy/endurance/stamina has crashed, I need to sleep a lot more, and for some reason I'm having mood issues I've never had before. Those may be related to a large drop in cognitive function. Since most of my cognitive issues had cleared up, losing cognitive function again -- even if it's only temporary -- is perhaps more disturbing than it used to be. A bit too Flowers for Algernon for my taste.

I think this particular relapse has a 3-fold cause -- some sort of GI illness (my GI system is usually like cast iron -- it never gives me problems), followed by a trip to see Dr L (7 hours drive each way. Recently I've been doing fine with it, but this time-- just coming off the GI thing -- was harder), and the flu shot I got at Dr L's office (usually I do okay with them, just a minor increase in symptoms for a week or two).

I'm getting pretty confident we've beat back the HHV-6 and EBV, but I strongly suspect we have immune function problems still to deal with. I'm wondering if my current problem is more immune than viral-related which is why it feels a bit different than previous relapses.

 

[floydguy]

Been through a bad month :In bed:, so please forgive me if I'm not clear or am asking for info already available. I've been trying to read some relevant threads, but the necessary cognitive function isn't there to process it all. :headache:

Neither daughter nor I have had immune function tests. I think that is the next step for us (probably long overdue, actually), but our current specialist doesn't do them. I'd love to see Dr Klimas, but we simply can't afford it. I'm hoping to get some immune function tests done locally and perhaps see if we can get a local immunologist interested enough to try to help. Our local mega medical monopoly has not been at all helpful so far with ME, but if I can convince them to run immune tests we might get somewhere.

What immune tests should I ask for? I'm assuming NK cell function is critical. Is asking for a "NK cell function" test sufficient or do I need to be more specific? Are there any other tests that would be useful in documenting a serious immune problem? We can assume my PCP is completely ignorant about this. My best hope is to freak her out enough with test results to get her to refer us to an immunologist.

What are the best papers/references to convince the PCP that these tests are appropriate? The is a mega medical practice that follows the CDC line slavishly about ME, so they might require convincing that immune tests are appropriate for ME patients.

Wish I didn't feel like crap and could do this research on my own. Seems like this latest setback has affected me in ways others haven't. :sad: While I don't feel fluish, like I have in past relapses, my energy/endurance/stamina has crashed, I need to sleep a lot more, and for some reason I'm having mood issues I've never had before. Those may be related to a large drop in cognitive function. Since most of my cognitive issues had cleared up, losing cognitive function again -- even if it's only temporary -- is perhaps more disturbing than it used to be. A bit too Flowers for Algernon for my taste.

I think this particular relapse has a 3-fold cause -- some sort of GI illness (my GI system is usually like cast iron -- it never gives me problems), followed by a trip to see Dr L (7 hours drive each way. Recently I've been doing fine with it, but this time-- just coming off the GI thing -- was harder), and the flu shot I got at Dr L's office (usually I do okay with them, just a minor increase in symptoms for a week or two).

I'm getting pretty confident we've beat back the HHV-6 and EBV, but I strongly suspect we have immune function problems still to deal with. I'm wondering if my current problem is more immune than viral-related which is why it feels a bit different than previous relapses.

Hi SOC,

Unfortunately, my advice would be to save your pennies and see somebody like Klimas when you can afford it. I spent a lot of time trying to cajole my PCP into doing immune testing. The end result was frustration, a waste of time and money. My general take is that even if you convince them to run some tests, they might not be the "right" ones and might drive incorrect conclusions.

The NKC function/activity test seems to be really tricky and few probably have a good handle on it. The cytokine testing also seems tricky. I wouldn't want to depend on my local monopoly to run these tests.

Best of luck.

Andrew

 

[SOC]

Hi SOC,

Unfortunately, my advice would be to save your pennies and see somebody like Klimas when you can afford it. I spent a lot of time trying to cajole my PCP into doing immune testing. The end result was frustration, a waste of time and money. My general take is that even if you convince them to run some tests, they might not be the "right" ones and might drive incorrect conclusions.

The NKC function/activity test seems to be really tricky and few probably have a good handle on it. The cytokine testing also seems tricky. I wouldn't want to depend on my local monopoly to run these tests.

Best of luck.

Andrew

Thanks, Andrew. That's very likely true, although depressing. Apparently our PCPs can't get a grip on this thing at all. All the critical testing needed to get referred to a specialist is too tricky for the average PCP to interpret. **sigh** Oh well. I'll start saving my pennies.

 

[undcvr]

NKC function assay is probably a good test to get. It gives you a baseline of where you are from time to time. It is a mainstream test enuf that most commercial labs carry it and is paid for by most insurances, if it is free why not.

Sorry to hear that you are having a tough time now. Which part of the country are you in ? I am in the NE and since the cold snap in Sept I have been feeling run down too like I am always fighting something. It is definitely related to the cold here.

Having said that I have gotten a flu shot and added Tamiflu and Doxy to what I take daily. It has definitely helped but not gotten rid of everything yet.

 

[Andrew]

I was in urgent care and asked the doc there to order lymphocyte subsets. So he ordered the most complete one he had access too. It included NK cells. He wrote in his report that some lymphocytes are below normal. But this doesn't do me any good. Nobody cares. My lymphocyte pattern is not in their book of illnesses. It is not low enough to be considered catastrophic. And so I don't pursue it. Because my PCP can refer me all over the place, but if the specialist is a cookbook doctor, my test results have no significance. CFS is not in the book.

But, it is nice to have those test results, because maybe a future doctor will want to run the same tests and compare.

 

[heapsreal]

I was in urgent care and asked the doc there to order lymphocyte subsets. So he ordered the most complete one he had access too. It included NK cells. He wrote in his report that some lymphocytes are below normal. But this doesn't do me any good. Nobody cares. My lymphocyte pattern is not in their book of illnesses. It is not low enough to be considered catastrophic. And so I don't pursue it. Because my PCP can refer me all over the place, but if the specialist is a cookbook doctor, my test results have no significance. CFS is not in the book.

But, it is nice to have those test results, because maybe a future doctor will want to run the same tests and compare.

Lymphocyte sub sets is good evidence for you that if high your immune system is activated and if low your immune system is run down, and yes most docs have no idea but abnormalities with these tests are common with cfs, plus it gives u some validation too. I also found these numbers improved with my antivirals , so i found it a good test to help me my treatments were working. An intergrative doctor maybe more helpful with cfs treatments.

cheers!!!

 

[undcvr]

I agree, get it done anyway. Maybe at some point in future someone will be able to make more sense of it but get it done and some history on it. Btw SOC have you tried black pepper ? I take 1/4 tsp 2X a day and it has directly removed some of my CFS symptoms. I can take stimulants and SSRIs at low doses now without crashing from them. It really does help some.

Black Pepper stimulates liver detox enzymes that for most pple with CFS our livers are generally sluggish. Maybe liver makes those pathways run at somewhere closer to normal but it does help. It helps with digestion as well and this is something that bothers most of us too.

 

[Francelle]

In anyone's experience, are Immunologists better/more informed at ordering these kind of tests than GP's?

 

[heapsreal]

Not in my experience, i would look for an intergrative practioner as they have more experience in treating cfs then immunologists.

 

[shiso]

I agree with both "save your money" and "do it if you can for future reference." I've had NK cell function test 3 times in my 3 plus years sick, and each time it's been abysmally low, regardless of relative improvement or worsening of my overall condition. It is a piece of data I have that shows something is wrong, but I've never received any suggestions of related treatment. Also once got an "IL" (cytokine?) panel done and had abnormal numbers, but again, I don't have access to an immunologist that knows about ME so it's never led to any treatment.

 

[SOC]

NKC function assay is probably a good test to get. It gives you a baseline of where you are from time to time. It is a mainstream test enuf that most commercial labs carry it and is paid for by most insurances, if it is free why not.

Sorry to hear that you are having a tough time now. Which part of the country are you in ? I am in the NE and since the cold snap in Sept I have been feeling run down too like I am always fighting something. It is definitely related to the cold here.

Having said that I have gotten a flu shot and added Tamiflu and Doxy to what I take daily. It has definitely helped but not gotten rid of everything yet.

I'm in the Midwest. The weather was still nice here when I hit the skids. I always seem to have a bad bout this time of year -- I don't know why. Or maybe I do. With school starting, I probably get more viral exposures from the kids I tutor or my daughter bringing stuff home from college. Hubby travels more this time of year, too.

I don't seem to be pulling out of this one. Bleah. Probably a good time to get immune function test, though. Sounds like the NKC function assay shouldn't be that hard to get. Even if I can't get the doc to do anything with it, it would be a good reference point. I want to start ldn soon, so it would be good to have a baseline of some kind.

 

[SOC]

I agree, get it done anyway. Maybe at some point in future someone will be able to make more sense of it but get it done and some history on it. Btw SOC have you tried black pepper ? I take 1/4 tsp 2X a day and it has directly removed some of my CFS symptoms. I can take stimulants and SSRIs at low doses now without crashing from them. It really does help some.

Black Pepper stimulates liver detox enzymes that for most pple with CFS our livers are generally sluggish. Maybe liver makes those pathways run at somewhere closer to normal but it does help. It helps with digestion as well and this is something that bothers most of us too.

Black pepper is part of some other supplements, I believe, but not at much as you take. I'm fortunate that my chemical sensitivities have cleared up and I don't (usually) have GI issues. I do take silymarin, but I don't know if it's as helpful as black pepper.

Ugh. I'd SO brain-foggy these days.

 

[SOC]

Not in my experience, i would look for an intergrative practioner as they have more experience in treating cfs then immunologists.

Sadly, there's not an integrative physician within a couple of hours of here. At least not one I can find by usual methods. My best hope (and it's a small one) is that I can take the lab results and Dr Klimas' publications to an immunologist here and stir up some interest. Admittedly a feeble hope.... Meanwhile, I'll save my pennies to go see Dr K.

 

[heapsreal]

Sadly, there's not an integrative physician within a couple of hours of here. At least not one I can find by usual methods. My best hope (and it's a small one) is that I can take the lab results and Dr Klimas' publications to an immunologist here and stir up some interest. Admittedly a feeble hope.... Meanwhile, I'll save my pennies to go see Dr K.

Some docs do phone and email consults but most generally want to see you first up, worth a shot.

cheers!!!