This is a letter from our nurse addressing the MRSA scare that has been rampant in the community at large, and felt specifically by our PIDD people.

October 29, 2007

Dear PIDD Community,

Recently in the news there have been many stories about the spread of the Methicillin Resistant Staphylococcus Aureus  (MRSA) bacteria.  As a member of the PIDD community I would like to share some information about this bacteria with you.

Staph bacteria are normally found on the skin or in the nose of about 1/3 of the population.  These bacteria are usually harmless unless they enter the body through a cut or other wound and usually only cause minor skin problems in healthy people.  But for people with weakened immune systems, an ordinary staph infection can cause serious illness.

Staph infections generally start as small red bumps that may look like a pimple or boil.  Some can be mistaken for spider bites.  Sometimes, the bacteria remain on the skin, but they can turn into deep abscesses.

MRSA can be spread from one infected person to another.  This can be done through a hospital-acquired infection, or through a community-acquired infection.  The stories currently in the news concern those that have been infected through a community spread-school, gyms, etc.   People who participate in contact sports have shown a spread of this infection.

There are several ways to prevent the spread of MRSA.  The easiest way to prevent the spread of MRSA is frequent, thorough hand washing.  If you cannot wash your hands, use hand sanitizer with at least 62% alcohol.  Do not share sports uniforms, equipment, towels or razors.  Wash gym and athletic clothing after each wearing.  Use clothing or a towel between your skin and shared equipment such as weight-training benches.   Keep cuts and abrasions clean and covered until completely healed.

If you have a cut or insect bite that looks infected, see your doctor.  Vancomycin is still the antibiotic of choice to treat MRSA and should be started as soon as the diagnosis is confirmed. 

Most importantly, if you have questions or are concerned about this topic, call and speak with your immunologist.  I have already done so for my daughter as she is in school and participating in sports. I feel much more reassured now.  As always, if I can answer any questions for you, please don’t hesitate to call.  Good luck and stay well!!

Sincerely,

Carol Ernst, RN

Director Consumer Advocacy PIDD

BioRx

1-800-559-3173

Remember the Headaches and What If’s post?   Followed by the information on SIBO, or bacterial overgrowth?  I got hit with the one, two punch.  I started antibiotics for the sinus infection and  re-activated my SIBO- the horrid tummy aches that keep me up at night.

I had to have another test for it last week, and sure enough- it’s flared up again.  I’m taking probiotics as well as the antibiotics for the tummy.

This seems to be a vicious cycle.  Have you experienced anything like this?   I’m beginning to think this might be fairly common for PIDD patients since I’ve heard of it so often of late.  It makes me not want to take an antibiotic whenever I get a sinus or upper respiratory infection because I know what will follow.   So, once again- should we, or shouldn’t we?  Back to the What If’s.

It seems that no matter how well we take care of ourselves,  just when we think we are on top of the world, BAM- we are off balance once again.   Such is life with PIDD.

Just in case you did not read the comments from Dr. Bonilla of Children’s Hospital Boston and Harvard Medical School on my last post, please read  below.

His post will help us make informed decisions about whether or not we want to take probiotics.

“I must disagree with the comment of the GI doctor mentioned above. For most PID patients, one or a few parts of the immune system are impaired, but others work perfectly well. Normal gut bacteria are important for intestinal health, whether you have PID or not. Whenever the balance of bacteria is disturbed due to infection, medication, or other illness, probiotics can help restore the balance. Probiotic supplements aren’t necessary for everyone all the time, they will NOT “boost” immune function, but they can improve intestinal health, in general, for anyone, even someone with PID. They can’t hurt, try it, and see if you feel better”. Dr. F. A. Bonilla

There has been much discussion lately regarding the use of probiotics for PIDD patients.   The results seem to be different for our patient population than they are for the general population.  I do know that my GI doctor told me that a PIDD patient can’t differentiate between good and bad bacteria- so save your money.   But, my alternative health practitioner has also told me that whenever I take an antibiotic, I should take probiotics during and for a week afterward to neutralize the effects of the drugs.   So, I do.   I want to share some medical information that I’ve received regarding this discussion.

This first one is from an article on Medscape called

Probiotics and Prebiotics in Gastrointestinal Disorders

I have taken the following directly from the article

Effects on Systemic Immunity

Oral administration of probiotics has been shown to result in altered immunity at distant mucosal sites, including the female genital tract, the respiratory tract, the skin, and the nasal passages. Specific strains of Bifidobacterium and Lactobacillus appear to be promising in the treatment and/or prevention of eczema/dermatitis in infants and children.  It is interesting to note that in these studies, supplementation with the probiotic did not appear to alter bacterial numbers in the colon. This suggests that these results are owing to altered immunity rather than altered colonization.

Authors

Richard N. Fedorak, Karen L. Madsen

I also have another article to cite  - it is:

Pathophysiology and Medical/Nutritional Consequences of Small Intestinal Bacterial Overgrowth

By Janet Yang, MD and Mark Pimentel, MD, FRCP(C)

 Adjunctive Treatments

“Patients whose symptoms are refractory to conventional treatment may benefit from adjunctive treatments such as supplementation with non-pathogenic strains of bacteria to enhance endogenous protective mechanisms (probiotic therapy).   Probiotic bacteria, such as specific strains of lactobacilli and bifidobacteria, have been examined as possible methods for controlling or eliminating the growth of pathogenic bacterial, viral and fungal organisms.   Lactobacillus sp very greatly in their ability to protect the mucosa from injury produced by other organisms.  It is important to use only those species that have been documented efficacy in intestinal conditions, such as L rhamnosus and L plantarum 299V.

Their role in bacterial overgrowth is unproven”.

So, as you can see- the jury is still out on whether or not to take probiotics.  If you have had success with them, I would continue to use them at your own discretion.

If you are wondering if they are working -  I might save my money.

I will continue to monitor this topic since it is very important to PIDD patients.   I know I’ve personally struggled with the decision to take or not to take for several years nows.

Ok- so now I’ve had a headache for let’s say- 2 months running.

I feel really good otherwise.   But if I touch my forehead, or my eye area- I have pain.   Sometimes, it hurts when I don’t touch.   Do I, or do I not, have a sinus infection?  Should I, or should I not, start my meds?

This is just one of the many questions that plague PIDD patients on a regular basis.   If I have a sinus infection, and I don’t start the meds, it may turn into an upper respiratory infection.   Then what?   I can’t fight that very well.   But, I don’t want to start my meds if I don’t have to cuz then I’ll get a really bad tummy ache, and it will probably lead to another fungal uprising!!!

What kind of life is this?

Well, it’s my life and your lives and these are our everyday decisions.  Our everyday challenges.  This seems so minor, and yet, is it?

 I’m off to another evening of warm compresses on my forehead, and tomorrow another day of acupuncture to try and  get my sinus’ to drain.

If it doesn’t start working soon, I will have no choice.

That’s where we all stand on every day issues.

We have no choice.  We have to take good care of ourselves, and be our own advocates.

We can’t run to the doctor at every slip and slide, we have to learn to manage our health in the big picture.   Are we remembering to do our nasal irrigation to hopefully prevent a sinus infection?   Are we keeping the nasal passage moist, and not allowing it to dry out and crack and potentially allow bacteria to enter?   Are we remembering to NOT shake hands during the upcoming cold and flu season?   Wash our hands at every chance?

What else do we need to remember? 

Ad infinitum.