Re: need help with culture results/Holly

[Guest guest]

Hi Holly,

If you can get to a store today, then you might want to pick up a bottle of tea

tree essential oil to tide you over until you can talk to

your regular doctor. I well understand your concern about S. maltophilia. I

freaked when I saw it in my son's culture in Jan. 2002, and

thank goodness we got rid of it -- but like your doctor, my son's doctor said he

wasn't going to treat it either! Both my son and I

wanted those bugs out of his lungs. That's when I really started heavily

researching magnesium. Since most bugs love an acidic host

(as does cancer), I wanted to find a way to raise the pH of my son's lungs

(making them more alkaline and less acidic). Magnesium is

an alkaline mineral that is the second most abundant cation in the cells, so

that was my target research.

And since the doctor wasn't going to prescribe an antibiotic or antifungal, I

decided a more natural approach. That's where the tea

tree oil comes into play. It's an all-round oil with antibacterial, antifungal,

antiparasitic, anti-yeast, and antiflammatory properties.

You can simmer some water in a clean pan on the stove or in the microwave, then

add a drop or two of the essential oil to the water

then hold it near her nose and let her breathe in the vapors. We hypothesize

that the tea tree oil inhalations -- along with taking

magnesium glycinate -- is how got rid of S. maltophilia and aspergillus.

And it's how his mucoid PA became sensitive to

aminoglycoside antibiotics for the first time (at last culture, he failed to

even grow mucoid PA, though the nonmucoid was still

present).

Whenever feels a change in his nasal discharge or sputum, he reaches for

the TTO and inhales it for a night or two. I do this too

when I feel a sinus infection brewing. If he's just got a stuffy nose, then he

inhales eucalyptus essential oil. Sometimes when I'm in a

hurry, I just open the bottle and take deep whiffs as I wave the bottle under my

nose. Some people have reported great results by

running a crockpot at night in their room (or kid's room) with the tea tree oil

in the water. One mom said the first night she did this, she

placed the bowl of steamy water by her 16-yr. old son's bed and he coughed up

huge globs or green gunk that night. She was so

happy because he'd not been able to get the gunk up before (he has a long

history of culturing aspergillus).

Research has shown that most sinus infections are fungal, not bacterial (though

some are bacterial). If your daughter has a

fungal-based sinus infection, the Zithromax won't kill it off, though because

Zithromax has anti-inflammatory properties, it will help the

CF-component.

You can also get nasal sprays that contain xylitol. (go to http://www.xlear.com

for more info). Preliminary research shows the

properties of xylitol prevent pseudomonas from attaching to the lining of lungs,

sinuses, etc. That's just a basic explanation because

I'm still caffeine-deprived this morning....). Many people who've started using

xylitol sprays daily have said they have fewer sinus flare

ups.

A couple years ago, research about sugars such as mannitol and xylitol broke the

news. Scientists in Denmark (I think it was there)

noted that kids who chewed gum containing xylitol (mannitol?) had less ear

infections. Shortly thereafter, Torsten told us that he'd

noticed Fiona's instances had decreased after she'd discovered the joys of

chewing gum. So now, I always look for chewing gum that

contains xylitol or mannitol (never aspartame -- that stuff is scary). I even

buy a few packs to put in my kids' Christmas stockings.

Sugar-less gum without aspartame is hard to locate, and it's more expensive, but

it is available. I think one type is Arm and Hammer's

chewing gum, usually found in the toothpaste section of stores, not on the

chewing gum aisle.

At age 2, I know your daughter is too young for chewing gum, but it's info to

tuck away for the future... and one mom told me she

found a xylitol spray on the store shelf after her daughter's ENT prescribed

nasal irrigations. You can buy xylitol in bulk from the above

web site to make your own sterile nasal wash -- a lot cheaper that way than

buying the bottles of ready-made.

Sorry this is rambly... just some thoughts. I know how scary it can be when

you're away from home and health changes. That's why

we always travel with our essential oils now. My son even carries them on the

plane if he has to fly somewhere.

Kim

> Thanks for the reply even if you were unsure if you should have sent it. I

> haven't recieved anything from anyone. She must have had a sinus infection

> because her snot was so thick and dark green and now there is less and it

> is more clear. I am more worried about pneumonia or something. She usually

> doesn't cough but she is coughing a little and it doesn't sound good. Every

> time she has had a cold it has turned into a lung problem.

>

> I was wondering about the steno maltophilia. Our cf doctor (we are looking

> for a new one) didn't tell us that she cultured the steno maltophilia until

> 6 months after the fact. He said that it doesn't need to be treated. How

> long has your daughter had it? Was she ever treated for it?

>

> Thanks for your help, Holly

>

>

> >From: " Morey " <brmorey@i...>

> >Reply-To: cfparents

> >To: <cfparents >

> >Subject: Re: need help with culture results

> >Date: Tue, 30 Dec 2003 18:24:18 -0800

> >

> >Holly,

> >I don't know if this is what you want to hear or not but if that was **me**

> >since you did say Kennedy is a little better I would just wait, and take

> >that culture report to her regular doctor when you get home. I have read

> >culture reports and the only thing I think it means is that this is not

> >MRSA. The staph seems to be resistant to just penicillin. I don't know if

> >zithromax would be helpful. As for the gram neg rods you may be right that

> >it is the steno maltophilia. My daughter has that also and we really don't

> >feel it gives her a lot of problems. I hestitate to send this advice as I

> >really don't know either but maybe it is better than nothing. I hope I

> >haven't just confused you further.

> >

> >love,

> >M

> >

> >

> >

> >