So Confused About Immune System Stuff

[Racer]

I keep reading threads on immune, autoimmune, etc. Googling, googling, then more googling, yet I just cant wrap my mind around it. Can someone point me to the basics?

I spent the last couple days at the hospital. First I went in for a seizure, was released and ended up going back because I developed EXTREMELY painful urination. They got a urine sample and it ended up being positive for a UTI. Evidently a guy getting a UTI is "extremely rare". They gave me a prescription for ciprofloxacin. I was also supposed to start antibiotics for intestinal bacterial overgrowth, so hopefully the ciprofloxacin takes care of both. I feel so extremely sick, like the flu x10, no fever yet, so they shoved me out the door.

So how many infections does it take before a person starts to question if something is wrong with the immune system?

[corina]

I'm sorry you're struggling Racer. And I don't have any answers for you. My son had a UTI at age 8 and was immediately sent to hospital for further investigation. They didn't find anything wrong (thank goodness) and the ab did their job. Hope it helps you to know that you're not alone.

[looneymom]

Hi Racer,

The immune stuff is confusing. However, if you suspect this is a problem, I would try to find a true immunologist that would listen to your concerns. These types of doctors are not easy to find. My son has just seen one and she did shed some light on some things. However, it did not explain other symptoms. I am waiting on the results of a PANDAS test.

Have you had any testing done in this area? If you have an md that will check the basics, that would give you a start. Have you considered MCAS? This can be an underlying cause of POTS. This is an area that my son is going to be checked for next.

Hope you are feeling better. If you like cranberry juice, this seems to help with the pain. Don't give up. Stay on top of your doctors and request some testing. Doctors are more likely to do the testing if the infections are happening quite often. However, if your doctor is not responding very well, you may need to see a new doctor.

Rachel

[Zap]

Frequent infections should in theory lead to immune testing - if the doctors are watching the incidence.

Have you had Immunoglobulins checked? This is one of the ways to test for immunodeficiency. Low Ig can be a gateway to IVIg - which is one of the ways to medically work at low immunity - but only if there are definitive low results. A regular blood panel will show white cell counts - which can also be another indicator of immune related issues - but it can also just indicate a current infection.

An Immune Complex Panel tests for things like autoimmunity - at least the more prevalent types like Rheumatoid Arthritis, Lupus, Sjogren's, scleroderma.

Also have to mention the natural immune modulators too - garlic and oil of oregano are two BIG ones. Using these types of things will help a weakened immune system.

One other comment - your gut bacteria ARE your immune system - so keep in mind that imbalances there can also be part of the cause for immune issues.

[Racer]

I have had numerous "complete blood count" and "comprehensive metabolic panel"? I had always thought they checked everything in one blood test! When dr's were talking to me about "blood tests" or "labs" I thought that included immune system. So it looks like I have not had the proper testing done?

UGH *@%unbleavable! I should have had this testing done a decade ago! I get viral or bacterial infections many times a year and it looks like dr's have always been misleading me convincing me that everything was fine!

Seriously, in the past ten years I have had bronchitis twice, pneumonia, sinus infections, ear infections, viral skin rashes, flu viruses twice a flu season, and now sibo and my second experience with a UTI. During my childhood strep throat was my infection of choice. Sickness happens with enough frequency that friends make comments. I have always told them "blood tests looked fine, immune system looks okay".

So if I count viral infections also, this will be number 5 for this year (3 viral 2 bacterial). I think it might be a good idea to get a flu shot this year.

[Katybug]

Complete blood count and metabolic panel are very basic tests. Immune system testing is much more comprehensive and thorough. I'm on my phone right now but I know there was a thread that someone else started asking for all the immune tests that should be run. I'll see if I can find it tonight or tomorrow.... .unless someone else know where it is and can easily link it for you.

[Racer]

Is this the thread?

http://forums.dinet.org/index.php?/topic/23548-immune-system-testing/?hl=%2Bimmune+%2Bsystem+%2Btesting

Yeah, I have not had any of those tests.

[Katybug]

Yup. That's the link.

[Confusedguy]

My diagnosis is Autoimmune Dystautonomia. What I have learned is when they talk about the immune system for me it's about how many systems within my body are having issues. I have Gilbert Syndrome (Liver issue), Thyroid, Viteligo, and testosterone. All these are immune system problems which link me to Autoimmune issues. Every 3 weeks i go to the hospital for 5 hours, for 2 days for plasmapheris. This is when they remove your Plasma and replace it with Albumin.

Now I am never sick with the flu, infections, colds or anything like that so I have no real "immune" system issues. My issues are Autonomic/neurological in nature.

Not sure that helps you at all.

[Racer]

Thanks!

Is a "allergist/immunologist" the proper doctor to go to? Waiting to see what my doctor says

[Katybug]

Yes...make sure the one you go too is strong on the immunology part....not just allergies.

[Racer]

Well my PCP has been so useless. I have tried calling them four times in the last two days, they never return calls, and totally ignored my problems this time. The message left was "we have never heard of your bowel problem... continue to take your antibiotics with a meal, and discontinue the use of the laxatives... follow up at your next appointment". I am on a liquid diet and my GI dr has me on the laxatives because without them I clog solid! Did they ever even read my history. On top of the usual, I am having chest pain and shortness of breath (unusual for me). My next appointment is Nov?! No referrals, nothing... I seriously don't understand why I am being treated like this, I must be doing something wrong. I keep getting the idea that if I was to die, they feel they did the minimum required to help me so they would have a clear conscience. I am so frustrated I could cry

Sorry I keep venting, just dont have any other way to let my emotions out

[davecom]

Racer, don't worry - about whether you're doing something wrong at least. Chances are that you are NOT doing anything wrong. This is just how we treat the chronically ill in 2013. We do the minimum and cross our fingers.