MRSA questions

[Guest guest]

Dear Group,

I'm new to this list, as a woman with CF who has not

yet reached parenthood. I have a question to impose on

the group. When a CF individual has MRSA is there any

hope of eradicating it completely from his or her

lungs? What is the prevalence of MRSA amongst the CF

population? Can infected individuals continue to

pursue a nursing career? Must this also be given up?

Earnestly waiting and hoping to receive some replies.

Thank you.

Mindy

______________________________________________________________________

Post your free ad now! http://personals.yahoo.ca

[Guest guest]

My daughter, 7w/cf cultured for MRSA. Her doctor told us that she has to have

two clean cultures before she is considered clean. She has cultured for MRSA

for the last 2 years. A lot of nurses and doctors and people who work in

nursing homes and are healthy carry MRSA and don't even know it.

Lynette

Mom to Traci 7w/cf and 11w/ocf

[Guest guest]

Dear Mindy,

I cant answer many of those questions as I don't have CF . My granddaughter

does, (she is 19) doing well in college.

As far a removing completely CF from the lungs..---at the present time I

know that the only way that is possible is a lung TX. Remove it surgically

: Many have done this & done VERY well . You will hear from them here &

see many posts on TX as well. there are even lists that deal with that issue

as the major focal point. Check them out also.

There are so very many folks who have CF that have gone into the medical

field ....I don't personally know if that is the best to do --with cross

infection. BUT--so very many have chosen fields where they were able to

adjust to that -and still get a job done well. I even have several friends

that are surgeons. & some are Researchers.......living to ripe old ages

too.

MOTHERHOOD....YES, MANY have given birth & are doing well ....some have also

given birth & it has really lowered their health quite a bit. perhaps if it

was one child......?? But we really don't know . Docs generally----not

all---- BUT, they will try to suggest you become a mom or dad thru other

means.

I wish you all the best in the world & look forward to seeing you on line

again.

LOVE & HUGS,

GrandmoMBEV

MRSA questions

Dear Group,

I'm new to this list, as a woman with CF who has not

yet reached parenthood. I have a question to impose on

the group. When a CF individual has MRSA is there any

hope of eradicating it completely from his or her

lungs? What is the prevalence of MRSA amongst the CF

population? Can infected individuals continue to

pursue a nursing career? Must this also be given up?

Earnestly waiting and hoping to receive some replies.

Thank you.

Mindy

______________________________________________________________________

Post your free ad now! http://personals.yahoo.ca

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

[Guest guest]

Hi Mindy,

Tea tree oil is effective against gram negative organisms such as

pseudomonas while Manuka oil works against gram positive organisms

such as staph. Both oils are good against fungus, bacteria, parasites,

and yeast such as candida.

Here's our experience with tea tree oil. On Dec. 30, 2001 my son had

a sputum culture taken. We got the results January 18, 2002 and it

showed light to moderate growth of Stenotrophomonas maltophilia and

aspergillus fumigatus.

I freaked out of course, because he'd never cultured these before, and

I thought it was odd that both showed up at the same time. His doctor

wasn't concerned, nor did he want to treat either organism. He said

the counts weren't that high, even though they were low to moderate

growth.

Neither my son nor I were content with that approach. My son was

really concerned and wanted those bugs out of his lungs (me too!), so

we agreed to do our own research. Actually, due to his college

schedule, HE agreed that I would research while he would act as guinea

pig.

A couple weeks later, armed with new information, my son started

inhaling tea tree oil (*not* in a nebulizer!) and taking magnesium

supplements. We also added some other things that are generally

missing in the CF picture, and made some dietary modifications.

His health quickly and steadily got better, even his roommates

noticed. A couple months later, he sustained an ankle injury playing

basketball, so while getting the ankle x-rayed, we asked the ER docs

to do a sputum culture because I was curious what would show up. You

should have seen the looks on the doctor's faces. I think they

couldn't believe he had CF, and his inflammation was so low at the

time that he could barely cough, let alone produce sputum.

Ten days later the culture came back negative for S. maltophilia and

negative for aspergillus -- AND his mucoid PA came back sensitive to

all antibiotics for the first time ever. At his last sputum culture

(Dec. 2002) he even failed to grow mucoid PA.

So, Amen to tea tree oil... and especially magnesium!

A New Zealand company called Coast Biologicals produces a pure organic

manuka oil. But they have also developed a specific concentration of

manuka called Fraction 1. They also have an oil called Lema oil, which

is a combo of tea tree and this Fraction 1 Manuka oil. This makes the

oil broad spectrum against gram pos and gram neg organisms.

Over a year ago I read a study showing manuka oil's effectiveness

against MRSA, and I shared the info with another CF group I belong to.

One of the mom's wrote to Coast Bio and they generously sent her 10

free sample bottles of the Fraction Manuka oil and she shared it with

the group. None of us (knock wood) cultures MRSA, but we keep it in

our CF arsenal, just in case.

The oils from Coast Bio are inexpensive weapons, especially compared

to prescription meds. Lema oil is only $10.30 USD and that includes

shipping from New Zealand to the US. Here's web address if you're

interested in learning more: http://www.coastbio.co.nz/manuka.htm

Now, funny thing about MRSA. I know a young woman who cultures it. She

feels she got it from a hospital she used to go to before moving to

the Chicago area (which is where we are). Anyway, every time this

young woman has to go into the hospital, they put her in a regular

room KNOWING that she consistenly cultures MRSA. Then, about three

days later, her sputum culture comes back showing, of course, MRSA.

And that's when they move her into isolation and start practicing

standard isolation glove and gown procedures.

This is a huge, well-known, beautiful teaching hospital in downtown

Chicago. I'm thinking if MRSA is so contagious, and knowing most

hospital workers aren't all that diligent about handwashing, why on

earth wouldn't they practice safeguards from Day 1 of this woman's

admission knowing she consistently cultures this?

And of course, this makes me less trusting should my son ever need

hospitalization. If he does, I can just see me standing at the door

with a bucket of water laced with tea tree oil ready to hose down

every nurse, doctor, respiratory therapist, and food server who comes

into the room!

Anyway, even if you erradicate your MRSA now, that doesn't guarantee

you won't pick it up again -- along with other bugs -- once you go

into the nursing profession.

This is why my son keeps tea tree and manuka on hand. He usually gets

worn down from traveling on airplanes, so he takes his oils with him.

You can open up the bottle and wave it under your nose or put a couple

drops on a cotton ball and seal the cotton ball in a Baggie, then open

it up to take a whiff throughout the day.

When my son was treating the S. maltophilia and aspergillus, he boiled

water, poured it into a glass bowl, then added a couple drops tea tree

oil and inhaled the vapors for about 5 minutes or until the vapors

cooled. He did this about three nights a week.

I know a mom who tried this with her 11-yr. old daughter after

reading about my son's success with it. She said her daughter had

cultured aspergillus for years, but after three weeks of tea tree

inhalations three times a week, her daughter finally got a culture

showing no more aspergillus.

But I think most of us on the other CF list agree that it's a combo of

using the oils and supplelmenting magnesium, because magnesium

deficiency is what makes the lungs too acidic. And most bacteria and

fungus love that acidic environment.

Kim

Mom to 24 with cf and asthma and 20 1/2 asthma no CF

> Dear Group,

>

> I'm new to this list, as a woman with CF who has not

> yet reached parenthood. I have a question to impose on

> the group. When a CF individual has MRSA is there any

> hope of eradicating it completely from his or her

> lungs? What is the prevalence of MRSA amongst the CF

> population? Can infected individuals continue to

> pursue a nursing career? Must this also be given up?

> Earnestly waiting and hoping to receive some replies.

> Thank you.

>

> Mindy

[Guest guest]

Not to sound too ignorant but what is MRSA? Please help still learning.

Marie mom of 3 youngest 5mo wcf

[Guest guest]

Hi,

MRSA is Methicillin Resistant Staph Aureus, has cultured it and now

isnt allowed anywhere in the hospital when admitted without being gowned and

gloved, quite a task for a little guy so we just stay in his room.

The regular antibiotics dont work on this so, at least, is put on

Vancomycin when he needs a tune up. He has also been on oral bactrim for it if

memory serves me right.

Hope this helps, it isnt technical.

, mommy of 4, almost 4 wCF

[Guest guest]

Hey, Marcia... It's so good to hear from you again! Do you know that

every time I think of Barbi, I think of you and Ben? I remember the

night before Barbi died and how you were there online, sending me info

to send to Doug. I don't think I ever told you just how much strength

I drew from you that night, how much hope I had that she'd pull

through, and I didn't feel so alone late that night because it felt

like you were right there with me.

So, I can't ever separate her memory without thinking of you, and

hoping you and your family are doing well.

Anyway, about the magnesium -- and I (and now many others) use

Solgar's magnesium amino acid chelate. That's what it says on the

front of the bottle. The back label lists it as magnesium glycinate,

and it also contains a bit of calcium.

I chose this product after a lot of careful research. Solgar is a

trusted company. And in this particular product, Solgar uses chelated

minerals produced by Albion Labs. Albion chelated (bound) magnesium to

the amino acid, glycine. Amino acids are very small, so binding a

mineral to an amino acid makes it easier to sneak it across cell

membranes.

Other companies offer chelated mineral, but some don't tell you what

they chelated the mineral to, and I've learned to be pretty picky I

guess. Also, apparently this is a tricky process and easy to

breakdown, but Albion patented their process and the mineral stays

stable.

Albion Labs is a good company. The founder (a pharmacist) has a very

impressive history -- he's actually the guy who created protein drinks

during WWII, which helped save the lives of many GI's recovering from

their wounds. So if you use Ensure or Boost, you can thank Dr. Harvey

Ashmead.

When I started on magnesium (end of January 2002), I started

taking it too. We both started with magnesium chloride, then later I

switched to magnesium citrate and to magnesium gluconate. But it

wasn't until I started using magnesium glycinate that I saw a huge

difference for me. Really huge -- within 48 hours the impact was

amazing. So you can tell why I'm sold.

saw faster results, right from the beginning when he was on

magnesium chloride. But we think it's because was so magnesium

deficient that his body just grabbed on to the magnesium like a

dehyrated camel in the a Desert! We both started using Solgar's

magnesium glycinate at the same time (August 2002) and he continues

doing so well (knock wood!). In fact, he recently bought a bike and

has ridden it downtown to work a few times. In two days he logged 22

miles!

It's often hard to find Solgar magnesium glycinate. If you have a

Whole Foods store near you, they carry it, but usually only the small

bottles, not the large bottles. An online site for ordering the large

bottles (250-ct.) is http://www.houseofnutrition.com/m1.html

is absolutely sold on tea tree essential oil. He has also used

lavender essential oil in the past. Lavender eases inflammation and is

a nice relaxant when you're stressed, so sometimes he'd put a pot of

water on the stove to boil, then turn off the water and add a couple

drops lavender oil and let it scent his kitchen while studying for

finals.

He also likes eucalyptus essential oil. That's the oil he started

using before tea tree. But a woman with CF in her 30's who has used

essential oils a lot, told me that her Chinese doctor told her that

people with CF shouldn't use eucalpytus for longer than 3 days at a

time because it can cause " heat. " I think in Chinese terminology, heat

is inflammation. So, uses eucalyptus sparingly, only when nose

is stuffy because the scent opens him up. but eucalyptus also has nice

antimicrobial properties.

Tea tree is just an all-round great thing -- fights fungus, bacteria,

viruses, parasites, yeast. once put a drop on a Q-tip and zapped

a zit with it. Overnight the zit just disappeared.

Last summer when it was really hot and humid here, I bought a bar of

tea tree soap. He loved the scent, and I just felt better him using it

during weather that seems to promote fungal growth. I know moms

who put tea tree and orange essential oil into spray bottles of water

and use it to disinfect kitchen and bathroom countertops instead of

using commercial products.

You can also find tea tree shampoos and toothpastes. Word of caution,

be sure to keep all essential oils out of the hands of little ones.

You can put a few drops of tea tree oil in bath water, but watch very

carefully so little ones do *not* drink the bath water or splash in

eyes. I've been giving my dog a weekly tea tree rinse after

shampooing to help kill this skin yeast he has. I can really see a

difference.

Look for essential oils that say " pure " -- organic oils are always

nice, especially if you're using them for inhaling. Avoid oils in

plastic bottles, only buy glass bottles, preferably dark glass as it

protects the oil from light.

I think has some oils on her web site. But I don't remember if

she carries tea tree oil. Right now, I'm on a hunt for some

leptospermum petersonii essential oil. It's called " lemon scented tea

tree oil, " though it's from the manuka family. And studies I just read

tonight show it has a higher killing effect than standard tea tree or

manuka.

If any Aussies know where to find this LSTTO, please let me know!

Kim

--- " Marcia Monico " <mks65roses@w...> wrote:

Kim,

This is all SO interesting. What magnesium supplement do you use?

Are there certain things to look for in a magnesium supplement when

purchasing one for a child with CF? Ben cultures MRSA (has for quite

some time), so I am also very interested in learning more about the

Manuka oil.

Marcia

[Guest guest]

Marcia, you're right about Barbi. Did you watch the ABC program

tonight that featured , a young woman who died not long after her

lung transplant? She reminded me so much of Barbi, the same zest and

humor. Barbi never lost that sense of humor; she kept it going.

I'm sorry to hear about Ben's cough. You know, just last night a woman

in her 40's wrote to me that she'd recently tried tea tree oil and

now she's sold on it. She said she added a couple drops to a bowl of

hot, steamy water and started inhaling the vapors, and she said soon

all this green gunk loosened from her sinuses and she was able to

cough up some green gunk from her lungs. She said she couldn't believe

the difference. A mom of a high schooler told me the same thing. Her

son cultures ABPA (I think I have those initials right! I always seem

to get them turned around!) She said the first night she put a pan of

hot water with tea tree oil in it next to his bed, and he coughed up

the most vile green gunk. She was so pleased!

Tea tree oil has anti-inflammatory properties, and I remembered this

just a little while ago. I'm suddenly having a sneezing fit -- I don't

know what I'm allergic to but I couldn't stop sneezing and my nose and

eyes were watering. When this happens my chest usually gets tight, but

the sneezing is the worst part because it's really violent sneezing!

I'd already gulped two benedryl but was desperate for fast relief, so

I got my bottle of tea tree oil and started waving it under my nose

while trying to take deep breaths. I thought it probably wouldn't help

but I was desperate. Well, imagine my surprise when immediately my

nose calmed down and my chest opened up.

Now, darn it. Thanks to the benedryl, once they kick in I won't wake

up until next week!

I have to admit that when I first decided to take the leap of faith

to have try using the essential oils, I was really nervous and

cautious. I told him to please be sure one of his roommates was home

the first time he tried it because I'm just really cautious about

allergic reactions to all meds, whether they're prescription or

alternative. But he's done just fine and his roomies sort of like the

scents too. insists the only thing he's allergic to is green

beans (he's not, he just detests them!).

If you can't find tea tree oil locally (though you should) let me know

and I'll be happy to send you a bottle. We bought ours at Whole Foods,

but I know they have them in health food stores and I've seen it in

some drug stores.

Kim

--- " Marcia Monico " <mks65roses@w...> wrote:

Thank you, Kim. We are doing fine. Barbi's memory seems to live on

just as she lived. . .always helping to remind us of each other. . .

helping us to reach out and care for each other.

I really appreciate the information you sent me. Ben's last culture

showed an " i " , which I guess means it is intermediate to becoming

resistant to the Gentamycin we have used in the past. Since we don't

want to risk the resistance, we are trying some other treatments. He

is coughing quite a bit right now. He is on Keflex, in hopes it will

give it a hit. Maybe trying some of these supplements will help.

[Guest guest]

Hi Vicki,

Personally, I decided to go with Solgar's Amino Acid Chelate

(magnesium glycinate) because this product contains Albion's magnesium

chelate. Not all of Solgar's products contain Albion's minerals, but

this one does.

There are some other companies out there that also use Albion's

chelated minerals, but again, these companies may not use them in all

of their products. You know when you're getting Albion's chelated

minerals because it will state in on the label.

Albion has a web page listing the names and web sites of companies

that use Albion's chelated minerals: http://www.albionlabs.com/

When you get to Albion's site, click on " Human Products " then click on

" Locate Products. "

But again, you have to read, read, read the ingredient labels to be

sure the product you chose does in fact contain Albion chelates.

The best price I've found for Solgar's chelated magnesium is at

http://www.houseofnutrition.com/m1.html You can get a 250-ct. bottle

of 100 mg. tablets for $12.30.

You want the product shown on the top left or top right of the page.

The photo doesn't show you the back label, and the front label doesn't

say " magnesium glycinate, " but this is the one you want.

If you're into doing your own searching, then I recommend going to

some of those company web sites listed on Albion's page and start

reading product labels. You'll see what I mean about some of the

products not containing Albion -- or some products might use some of

Albion chelated minerals but not all of them.

For example, companies might put Albion's chelated iron, copper,

and zinc in their multivitamin/mineral but not use Albion's

chelated calcium or magnesium, instead choosing a cheaper form of

calcium and magnesium. It's really maddening and it basically boils

down to company cost issues.

(Bev, one of the things I wanted to discuss with Lois whether she

could get this Solgar product at a better price.)

Additionally, here's a helpful page for people who are just starting

out and want to learn more about magnesium:

http://www.krispin.com/magnes.html

Unfortunately, it's not very professional looking, which is too bad

because that hurts credibility. However, Krispin is a certified

nutritionist, and her information is very sound.

Pay special attention to the information under the sections entitled,

" Formula to Calculate Magnesium Daily Requirement " and " How to Take

Magnesium and What Kind of Magnesium to Take, and " Basic Guidelines. "

Remember though, when Krispin says " ideal " body weight, that's what

she means. Not current body weight, but the body weight ideal for your

height and age. Also, for people with health " issues " she advocates

using the higher dosing number: 4.5 mg. per pound of " ideal " body

weight.

She says this calculation shouldn't be used for children but when I

compared her figures to the USDA RDA's, and knowing the malabsorption

issues and stressors and medications involved in CF, I don't think her

numbers are out of line.

***Important reminder*** Don't take magnesium or multivitamin/minerals

supplements containing magnesium at the same time that you take

antibiotics. You need to space these apart so the ingredients don't

compete with each other (the magnesium will bind to the same receptor

site on the cell, making antibiotics up to 50% ineffective).

Safe rule of thumb: you can take mineral supplements no closer than

two hours *after* antibiotics, not before.

If the only oral antibiotic you're currently taking is Zithromax, then

you might get in the habit of taking your minerals in the a.m.,

Zithromax in the p.m. The body does better getting it's vitamins and

minerals early in the day, anyway.

If you're on IV antibiotics, it's very important to supplement

magnesium but again, you really have to watch the timing of doses.

And don't take magnesium supplements if you have any type of kidney

disorder without first discussing it with your nephrologist.

Kim

--- " Chandler " <Chandlerfamily@p...> wrote:

Hi Kim,

I have been on this list for a few weeks now and have been reading

all the e-mails about Magnesium. I would like to start my children on

it and actually myself as well.

I read that you suggested using Albion's, but I was wondering where

I can purchase that from and what is the exact name of it. Can you

recommend a dose?

Thank you so much, this information is priceless!

Vicki

mom to Micaela 6 wcf, Wyatt 5 wcf & Maggie 2 wcf

[Guest guest]

Hi Deb,

I don't know if kidney stones mean the kidneys aren't functioning

well, or whether there's just a build up of calcium (I think kidney

stones are primarily calicum formation, arent' they?).

As example, my brother-in-law has healthy kidneys and normal, healthy

kidney function, but a few years ago he developed a kidney stone. It's

gone now (but I don't remember what they did to get rid of it).

The reason for caution if you have malfunctioning kidneys is because

about 20% of blood Mg is filtered through the kidneys, and about

50-60% of that is reabsorbed via the Loop of Henle in the kidneys. If

kidneys aren't functioning properly, Mg could accumulate in the

kidneys (about 40% magnesium is excreted in urine).

So that's the reason to use caution if you have kidney problems, your

Mg levels could get too high.

Kim

> Does kidney stones consider a kidney disorder? Deb A

[Guest guest]

Hi Vicki,

You're welcome, and I hope you (and any others) will keep me informed

over the coming months. By the way, has your daughter had a recent

sputum culture and PFT? It would be interesting to see if these change

after she begins taking magnesium.

I've collected several anecdotal accounts so far, but would like

more to include in the information that a certain doctor requested.

Word-of-mouth is he's very interested, and if all this makes sense to

him, he said he'd take it to the CFF to get them to include routine

magnesium testing as part of standard CF care.

Not that I put stock in blood magnesium testing, remember, but it's a

start! If the blood tests do come back low, then at least deficiency

is confirmed. But even if they come back in-range, the person could

still be deficient.

Kim

--- " Chandler " <Chandlerfamily@p...> wrote:

> Thank you Kim for all the info.....I really appreciate it!

>

> Vicki

[Guest guest]

Hi Marcia,

Aura Cacia is the brand of tea tree oil and I have. I see you

got the BIG bottle. Just for future info, I keep checking web

prices of various things, and House of Nutrition beats most prices --

unless someone else is having a huge sale.

http://www.houseofnutrition.com

As for the type of magnesium you asked about, no, I wouldn't get that

one; though it's made by Solgar, they didn't use chelated minerals in

this product. Here's the ingredient list for the one you asked about:

Calcium (as calcium carbonate, calcium citrate, calcium gluconate),

magnesium (as magnesium oxide, magnesium citrate, magnesium

gluconate)

Notice the first (and therefore most abundant) calcium they list is

calcium carbonate, which can be very constipating to some people --

but what's worse is that it's not absorbed as well as other forms of

calcium (that's what they use in TUMS).

The first (therefore most abundant) form of magnesium on the list is

magnesium oxide, which is a magnesium salt. Mg ox is the least

bioavailable of all types and generally causes loose stools or

diahrrea in high doses.

Not too many places (either web or stores) carry Solgar's Magnesium

glycinate. But that's the one you want.

The front label will say " Pure Amino Acid Chelated Magnesium " (the

words 'chelated magnesium' are in big, bold black letters).

The back label will list ingredients: Calcium (as dicalcium

phosphate), Magnesium (as magnesium glycinate amino acid chelate).

There's also a tiny bit of naturally occuring iron and sodium.

One way to be sure it's the right product is to alway look on the

label for Albion Lab's patent number. That way you know the company

bought their minerals from Albion.

Also, in case you didn't catch a recent post, Bev's Pharmacy in

Florida will soon be carrying this Solgar magnesium glycinate (Uh,

oh... I hope Lois ordered the right type. She's gone this week so I

can't double check with her.)

Good luck with the tea tree oil. I'm trying to get some lemon scented

tea tree oil, which is supposedly better for MRSA, so I'll keep you in

mind.

Kim

--- " Marcia Monico " <mks65roses@w...> wrote:

Kim,

Would you check and see if this magnesium would be a good one for

Ben?

http://www.mothernature.com/shop/detail.cfm/sku/42779

This is the tea tree oil I ordered:

http://www.mothernature.com/shop/detail.cfm/sku/50830