To be tested for PID is pretty easy. They first take blood from you in order to draw a baseline. Then they give you both a tetanus and a pneumonia shot. You have to wait a month, go back in and then have bloodwork redrawn. What they're looking for is if your body has developed antibodies to both the tetanus and pneumonia shots. Depending upon one's immune system, the bloodwork may come back normal or it may come back showing a deficiency of some type in your immune system.
Think of PID as being on a continuum....some are very sick with it (extreme case is the bubble boy) and others can function pretty normally, even working and continuing a normal life just by taking their medication. Treatment is immuneglobulin replacement. Is actually getting other people's antibodies to make up for what your own body doesn't make.
You can get it two ways, IV (IVIG) or subcuatenous (SCIG). I do it SCIG so I can do it at home, to myself. Those who get it IV usually go to an outpatient infusion center every 3-4 weeks to get their dose. Some choose IVIG because it's done and over with once every 3-4 weeks, others choose SCIG because it gives one more freedom and for a lot us us, has less side effects than IVIG. When you get into IVIG administration you have to watch for infusing too fast, etc.
Because of the side effects I'm getting from the SCIG (which is wierd 'cuz no one on the PID forum has side effects from SCIG...hence the reason most people push their doctors to switch them from the IVIG method to SCIG as soon as possible) I do it daily. Takes me about 3 hrs. every morning to give myself the medicine as I have to infuse at a slow rate. Most people who do it SCIG do it 1-2 times a week and get it over with in about an hour or so.
The hallmark for having PID is recurring respiratory infections (sinuses and/or lungs) that don't go away with treatment. However, a lot of us have other wierd anomalies. Seems most of us with PID have problems with bad fatigue, many have thyroid/endocrine issues, and a lot of us have been told we have fibromyalgia (however, we think it's more of an inflammation issue in the muscles rather than actual fibromalygia, but you know how easy it is to get diagnosed with fibromalygia when they don't know what's actually going on with you).
Should you decide to get tested, MAKE SURE it's an immunologist who's experienced with PID. Just 'cuz one's an immunologist doesn't mean he/she is up on PID. They may think they are, but most are not.
If you go to the Primary Immune Deficiency Foundation's website (www.primaryimmune.org)
there's a lot of information there and they can help you find an immuno. in your area that can test you. Unfortunately, just as I've been reading here on the CF forum, not all of us are happy with our immunologists. It can be very frustrating working with any doctor, regardless of his/her area of expertise, and immunologists are the same as any other speciality...some are really good and some leave you wanting to ring their necks.
Think of PID as being on a continuum....some are very sick with it (extreme case is the bubble boy) and others can function pretty normally, even working and continuing a normal life just by taking their medication. Treatment is immuneglobulin replacement. Is actually getting other people's antibodies to make up for what your own body doesn't make.
You can get it two ways, IV (IVIG) or subcuatenous (SCIG). I do it SCIG so I can do it at home, to myself. Those who get it IV usually go to an outpatient infusion center every 3-4 weeks to get their dose. Some choose IVIG because it's done and over with once every 3-4 weeks, others choose SCIG because it gives one more freedom and for a lot us us, has less side effects than IVIG. When you get into IVIG administration you have to watch for infusing too fast, etc.
Because of the side effects I'm getting from the SCIG (which is wierd 'cuz no one on the PID forum has side effects from SCIG...hence the reason most people push their doctors to switch them from the IVIG method to SCIG as soon as possible) I do it daily. Takes me about 3 hrs. every morning to give myself the medicine as I have to infuse at a slow rate. Most people who do it SCIG do it 1-2 times a week and get it over with in about an hour or so.
The hallmark for having PID is recurring respiratory infections (sinuses and/or lungs) that don't go away with treatment. However, a lot of us have other wierd anomalies. Seems most of us with PID have problems with bad fatigue, many have thyroid/endocrine issues, and a lot of us have been told we have fibromyalgia (however, we think it's more of an inflammation issue in the muscles rather than actual fibromalygia, but you know how easy it is to get diagnosed with fibromalygia when they don't know what's actually going on with you).
Should you decide to get tested, MAKE SURE it's an immunologist who's experienced with PID. Just 'cuz one's an immunologist doesn't mean he/she is up on PID. They may think they are, but most are not.
If you go to the Primary Immune Deficiency Foundation's website (www.primaryimmune.org)
there's a lot of information there and they can help you find an immuno. in your area that can test you. Unfortunately, just as I've been reading here on the CF forum, not all of us are happy with our immunologists. It can be very frustrating working with any doctor, regardless of his/her area of expertise, and immunologists are the same as any other speciality...some are really good and some leave you wanting to ring their necks.