Immune System Testing

[looneymom]

What test are used to determine if the immune system is not working properly? I know this is a loaded question. I know that the basic cbc panel is ran but I'm asking about more specific test that could point toward this problem. When my son visited our family doctor the other day, he asked if he was going to be seen by an immunologist. I do know that our cardiologist is checking in to that but I was wondering if there were some test that could be run before we headed in this direction. As I have said before our cardiologist looks at everything I send his way. We are leaving no stone unturned at this point. The doctors think that

my son should have already been able to at least get back on his feet and walk by now. So if anyone knows of an unusual underlying cause for POTS started by an immune system problem, please clue me in. My son's shaking and tremors have come back with vengeance.

[jpjd59]

Looneymom:

My daughter's immunologist ran many blood tests (17 vials of blood!!!). I can't remember everything that was tested but I know the doctor tested for specific viruses (HHV-6 and EBV) and also NK cell function. Of course, they also ran the CBC panel (which always comes back normal).

I think it is great that your son has a doctor that is willing to leave no stone unturned. Good luck!

Pam

[anna]

One test is a vaccine challenge test, a friend of mine is having this test done to see if she has a PIDD.

http://ainotes.wikispaces.com/file/view/Use+and+interpretation+of+diagnostic+vaccination+in+PID+-+JACI+2012.pdf

[arizona girl]

Hi loo,

Well I have common variable immune deficiency (cvid) and just posted about it in the fever post. The master test to check your immune systems is a test call "the total quantitative immunoglobulin test". Not all immunologist are created equal many are just allergists. Try to find one that has an infusion center are orders ivig. They will know how to do the right tests. This website has a great deal of info about these illnesses and can refer you to a physician in your area http://primaryimmune.org, a sub igg panel and igd, ige, may also be added and well help determine if allergies or other issues are involved.

Sometimes on your cbc the ig/ratio test will be slightly out of range, so I'd go back and check that on the old cbc's. Mine had been elevated just slightly on and off for years.

The seizure type shakes you've been witnessing, though others here also have them are not typical of pots. POTs simply means a rise in heart rate on standing, that's it. Certainly, symptoms when supine are not orthostatic symptoms which pots is. Often pots is a symptom along with other symptoms of some other illness. In my case my rise in bp/hr as I'm hyper w/elevated norepi on standing, was a result of my small fiber nerves being attacked by autoimmune disease, of which I have three. The ones I have often show up with cvid. As my neuro said the "causes of pots can be endless, lets rule out what we can." Also when you have cvid common autoantibodies that will point to an autoimmune disease, will not show up, which is also why one can't produce a normal fever. The immune system can not mount a proper defense.

Another type of physician that may be helpful to you is a neuro who specializes in autoimmune neuromuscular disease. They can be hard to find but are worth seeing. It is very good you and your doctor are looking outside the box. When I saw Dr. Grubb, he expressed his concern that often once a diagnosis of pots is made, that his patients then blame all there symptoms on pots. "It worries me as they could have something more serious like cancer."

[arizona girl]

Thanks Anna, I forgot that one the vaccine challenge will be done after the total quants are done.

[looneymom]

Keep it coming. My son will see the cardiologist tomorrow. I do know that my son has trouble with low blood pressure. About two weeks ago the cardiologist cut my son's midodrine down to half. He could not maintain. Needless to say he's back on his regular dose. We need answers. I have gone back on the dinet forum to look at old post on immune system testing. I'm on page 2 still but worth the reading. Thanks for all the response.

[Guest Alex]

autoantibodies (ANA, ENA pannel)

complements

immunoglobulines (IgG, IgE, IgM, IgA)

triptase

Alex

[Guest Alex]

http://www.scotblood.co.uk/about-us/publications.aspx

if you go down the page you'll find a link to a document called immunology handbook - it's the 7th entry under information for clinicians.

it describes the most common tests (I assume), how they are used, how the results are reported, and how to interpret the results

[Katybug]

Here's the list of all the initial tests my immunologist ran:

ESR, WESTERGREN

C-REACTIVE PROTEIN

IGA

IGG

IGM

IGE

Pneumonia and Tetanus vaccine challenge (tetanus test is called TETANUS ANTITOXOID AB)

%CD3 (MATURE T CELLS)

ABSOLUTE CD3+ CELLS

%CD16 + CD56 (NATURAL KILLER CELLS)

ABSOLUTE NK CELLS (CD16 + CD56 + CELLS)

%CD4 (HELPER CELLS)

ABSOLUTE CD4+ CELLS

%CD8 (SUPPRESSOR T CELLS)

ABSOLUTE CD8+ CELLS

HELPER/SUPPRESSOR RATIO

%CD19 (B CELLS)

ABSOLUTE CD19+ CELLS

ABSOLUTE LYMPHOCYTES

IGG SUBTYPES 1-4

IGG TOTAL

[Katybug]

Oh...we also did:

C3a

C4a

C5a

C3d

These are Complement tests and can indicate inflammation in your body but do not directly diagnose a specific disease. (Although it can prove some sort of inflammatory process is going on. )

[Chaos]

http://chronicfatigue.stanford.edu/infections/

This is the link to the Stanford University website where they list the possible infections that they think are related to CFS. Since there is so much overlap between CFS and POTS (in fact POTS is just ONE symptom needed to meet the criteria for ME/CFS) and since so many of us became ill with POTS after contracting a viral or bacterial infection, you may be interested in checking this one out.

When you open the link, there is a grey box on the left hand side listing the various infections (e.g Herpes Viruses, etc). If you click on each one it will go into more details about them and give you an option to click on the experts who are studying them and why they think they are linked to the disease, ideas for testing, treatments etc.

CFS is a terrible name for the disease and it's gotten a lot of bad press so a lot of people don't want to look into it as a possible diagnosis. I know I didn't. But when you do, you'll see that there is serious neurological (including autonomic side of the neuro system), endocrine, immune and GI damage being done by this disease. Sounds a lot like what many of us are calling POTS, no??? Personally I think it's all just one big spectrum of the same disorder, influenced in part by people's underlying genetic predispostition and gender as to how it expresses itself once it occurs.

There is a lot of exciting research going on in both arenas these days, so here's hoping something is going to break soon that will help us out. By keeping an eye out in both fields it may help you see it if it occurs.

If nothing else, the link may help you know which tests for viruses etc to ask your doctor to check for. There is another link from Martin A Lerner MD that I'm still trying to find again where he gives practitioners ideas for what values he thinks are important to treat and what he uses to treat the various viruses with. He's one of the pioneers in this area as he had the disease himself and treated himself back into relative health using anti-virals etc.

[Gemma]

For some reason I cant open the link. It gives me error . Can you post it again please. Thanks.

[Chaos]

http://chronicfatigue.stanford.edu/

Sorry! Hopefully this one will work. This is the general Stanford University CFS site. So from here you'll need to click on the tab for INFECTIONS first and then click on the individual ones like I mentioned before. If it doesn't work just Google " Standford CFS website " and you should be able to get it.

[looneymom]

It works. Thanks for the information.

[looneymom]

Bump up Post

[DeGenesis]

CFS is a terrible name for the disease and it's gotten a lot of bad press so a lot of people don't want to look into it as a possible diagnosis. I know I didn't. But when you do, you'll see that there is serious neurological (including autonomic side of the neuro system), endocrine, immune and GI damage being done by this disease. Sounds a lot like what many of us are calling POTS, no??? Personally I think it's all just one big spectrum of the same disorder, influenced in part by people's underlying genetic predispostition and gender as to how it expresses itself once it occurs.

I realize this is a very old thread, but this really hits the nail on the head. A lot of chronic, complex, multifactorial illnesses like POTS, CFS/ME and GWI (Yes, I went there.) seems to start in the same way:

- Genetic predisposition - EDS for example.

- Environmental stress - emotional, chemical, bad diet, stress from school, work, family etc., overuse of stimulants and alcohol to cope, physical trauma, car accident, surgery, TBI, etc. I know the "environmental stress" idea is controversial, but not all stressors are self-induced, and it's far cry from saying that someone caused their own illness, and even farther from saying that they are perpetuating it. In fact, in many of these situations the participant has no control. Exposure to insecticides, for example.

- Followed by the tipping point, or the straw that broke the camels back, if you will. It is almost always an infection of some kind. Even a simple ear infection will do.

Then the immune system goes haywire.

[lewis]

Thanks for posting this!

[Friedbrain]

Adrenal insufficiency. I've had many episodes of intense all-over body shaking that were called all sorts of names, incl probable seizures in the er because that was an easy go-to answer with no thinking involved because I have a seizure disorder. But I was in the er last week for this, and the doc said she thought it was related to my old diagnosis of adrenal insufficiency (ie an adrenal crisis) and treated me w fluids and high dose solimedrol. Ta da all better. <sound of pieces falling into place> I've been told I'm very complex, which I believe. The autonomic nervous system and adrenal glands interact so you can imagine the chaos if both are wonky. But I'm doing better with a re-increase in my daily cortef. A GOOD endocrinologist, not a rheum, makes this diagnosis though. (Can be autoimmune-primary; but mine is secondary)