Multiple Infections

[NMPotsie]

Another newbie question here. In my defense, I did search for this first to avoid bothering you but there were many hits with infection and I couldn't find what I was looking for

I am concerned that I am have had multiple, recurring infections in the last few years. I had two lengthy bouts of MRSA in 09, which is when it all started, and then always seem to be fighting a cold or infection of some sort (sinus, throat, respiratory, etc.). Was in ER Memorial weekend for kidney infection, strep infection on my tonsils almost a month to the day after the kidney thing. Antibiotics make me sick and I have strong negative reactions to most of them, so I'd like to head this off.

I have two questions I guess: is this normal with POTS, and if so, why? I can't seem to find a clear answer to why these issues with my brain/heart/etc. would open me up to infections.

Secondly, is there anything anyone does to prevent it? I guess it would require an answer to the first question. I was taking 1000mg of Vit C a day until my doctor said it is too hard on my kidneys. One doc suggested Alpha Lipoic Acid as it helps the C work better, but I don't really understand why.

For the record, though my white count is always high with these infections (19+), it is normal at other times (9) and I don't have any other disorders that could seem to be causing this (though they suspect MCAS, but I don't know if there's a connection).

[HyperPOTS8]

Have you had your serum immunoglobins tested? Also what is you WBC differential when you are not infected? Ie absolute lymph count, absolute neutrophil count, etc?

[arizona girl]

Hi, my pots is caused by a number of conditions one of them being a primary immune deficiency called CVID/hypogammaglobulinemia. I was having infections with those kind of elevations in WBC. The test I had that uncovered this was called a total quantitative immunoglobulin. It test your global IGG, IGA, IGM. Other tests are igg sub panel, IGD, IGE and a vaccine challenge test.

If you go to primaryimmune.org you can read about the different primary immune diseases and they offer a referral source for doctors in your area. Usually they are immunologist not allergist who treat immune disease and hematologists. I'm being treated by a neurologist who specializes in autoimmune neurological diseases. I do have small fiber neuropathy as well and several autoimmune diseases.

By the way my antibiotic of choice which keeps me from having to go to hosptial for iv antibiotics is called a rocephine shot. Last infection took 2 or 3 shots over a week and I normalized. Your lucky you at least know where your infections are we have yet to pin point mine and assume it is my gi track.

I am on a treatment that replaces my defective immune system it is called IVIG and I have only had two mild infections since starting it.

[NMPotsie]

Hyper my absolute count looks like this: neuts 5.62, lymphs 2.51, monos .55, eos .14, basos .04 when not infected. Mayo tested my IgG, IgA and IgA Ab (?--says tissue transglut). All indicate negative. What does this tell you?

AZ girl thank you for that information. It's funny because I'm so used to infections that I know I'm getting one before symptoms show up in many cases and the doctor checks me and sure enough that white count is high and then the symptoms show up shortly thereafter. Usually my infections are visible; with MRSA it was skin lesions and eventually an issue in my nose, but the respiratory stuff is difficulty swallowing, coughing, and lymph nodes like golf balls in my necks.

Considering that those Ig tests were normal, would you pursue the testing you mentioned? I will do so if there is a chance it might help.

[NMPotsie]

Also, no idea if this helps, but I tested postive for antiparietal antibodies when seeking out the cause of my B12 issues.

[arizona girl]

I would suggest you go to the primaryimmune.org website and read there. If you think you fit they have a physician referral program. You want a doctor that knows and treats these kind of conditions. Hard to say exactly what tests mayo gave you from what you posted. They can check igg for specific disease types and you may have been normal for that one particular disease.

The correct test will say "total quantitative immunoglobulins" and will have numbers for igg, iga and igm. I certainly don't think it would hurt to pursue further testing with the right doctor with the amount of infections you are getting. Some one who screens for primary immune diseases. It wouldn't hurt to have the tests done when you are actually fighting an active infection. It appears my tqi's tank with an infection on board.

I see you have anemia, pretty sure the antipartietal antibodies are related to that condition. I'm guessing you already have a hematologist managing that? If you do that doctor may be able to pursue the immunoglobulin and elevated wbc issues. I'd make sure they treat that condition first though. If they treat it then they will know how to test for immune issues. IVIG is the primary way to treat most immune deficiencies. Also blood disorders are often found with CVID as well as some other autoimmune diseases. Dr. Charlotte cunningham rundel is the primary researcher in this area if you google her, her research papers are published on the net.

BTW do you run fevers with your infections?

[NMPotsie]

Again, thank you, that's very helpful. I will look at the website and Dr. Rundel's info. I didn't have that particular test that you describe, so I'll bring it up. Yes, I run low fevers but my body temp runs low normally (96.8-97.5) so when I have a fever the doctors don't treat it as such because it will be 98.8 or 99 which they don't see as "high." With the kidney infection it was 104.3, so that was clearly a fever. I can tell I have symptoms of fever, though, at the lower number. When I get a virus I get very high fevers like 103+; I'll even spike a fever with allergies at times.

[arizona girl]

The reason I asked about the fevers, was because in my case, I was running a very low grade fever on and off for years. The highest it ever got was 100.2 with a rip roaring infection and ruptured colon.

The ability to run a robust fever is a sign that the immune system is fighting of something and working. So sounds like yours is a bit of a mixed bag. I agree with you most doctors don't think a low grade fever is anything to worry about. Which may be true unless your immune system isn't working right. Since starting my ivig treatment I haven't had any fevers at all.

It will be interesting to see what you find out, keep us posted.

[RichGotsPots]

I have low iGg subclass 2 which means I'm prone to infections especially of the lungs. Im not sure if I had this def before pots but I never got pnemonia until I had pots, so I suspect they are related. So far I have some supplements like baby doses of zinc throughout the date and if I feel sick some olive leaf, oregeno, garlic and spirilina....