infections

December 7, 1999

C.Tab. wrote: Hi,

> And I tend to have low lymphocytes and high basophilles -and of course

> constant respritory infection.... Marcia, what helped the throat and

> glands for you?

>

> Christie

>

Hi Christie,

I remember having eosinophiles as a prob. back then I finally had my tonsils

out 3 years into my illness, they were totally rotted and literally exploded

when cut into which made my whole throat

and everything get so infected I couldn't even drink water! The sore throats

and fevers got better after that but the swollen glands did not until about 4

years later (7 years into the illness).

Looking back, I think at the 7 year mark I may have entered a different " phase "

of the illness and symptoms began to change. Instead of sleeping 10 to 20 hours

like the dead, I began having

problems sleeping at all (which still continue). Shortly thereafter I started

the FM symptoms of muscle/joint pain/stiffness/weakness. I no longer get tonsil

or throat infections which plagued me

constantly growing up and only get mild sore throats as a signal I'm doing too

much or taking too much Immunocal (can only take 1/3 pack without sore throats

and fever and sore glands). I have

taken all the vites/supplements which were " popular " at the time over these

years, am not really sure of any lasting effects of most of them, but think I

could be worse had I not taken these other

things. I've stayed totally away from abx., but if I got another acute

infection I would take them. I used to get a sinus infection once a year since

CFS till about the 7th year also, none

since........this pattern should tell us something.....I just don't know

WHAT!!!!!

Marcia

August 25, 2003

In a message dated 8/25/2003 5:38:25 PM Pacific Daylight Time,

silentfox00@... writes:

> infections and was diabetic before surgery she checked my

> blood it was 53...

Hi !

The first thing (in my opinion, only) would be to have a Hemoglobin A1C to

see exactly what your blood sugars are doing. The regular glucose monitoring

isn't the best test to see what is happening. I would ask Dr. Z for an order

for that before I go in! Just an idea...it never hurts to be safe.

Hugs and blessings, Ann

August 25, 2003

she checked my

> blood it was 53.........anyone out there have infection troubles

that have

> cleared up? If so please tell me what helped..Thanks in advance

> julie in woodlake

Geeze, Louise! 53 is low, girl.

Sorry, no help with infections. I seem to be doing as usual.

Marta

August 26, 2003

>

> Geeze, Louise! 53 is low, girl.

>

> Sorry, no help with infections. I seem to be doing as usual.

>

> Marta

~~~~~~~~~~~~~~~~~~

Marta...Yep 53 is low it was at about 2:30 she asked what I had eaten

and I releized I hadn't eaten anything yet..The joys of D.S...I had

been real busy yesterday and just didn't have time to eat...actually

I don't eat hardly anything during the day..But evening is my

problem..lol I blame that on my anti-depressant(elavil)

in woodlake

April 28, 2004

In a message dated 4/28/2004 2:46:51 PM Eastern Daylight Time, dale@...

writes:

Janet, I get really tired of typing in that title, but it really, really

helps. I would like to help you, but I'm an old lady who forgets who is

who and what diagnosis is what. So.... before I try to tackle this,

please tell me what your daughter's diagnosis is and whether she gets

IVIG.

I'm so sorry about the title:(

Brittany's diagnosis is no IGA and IGG subclass 2 is low. So i was told it's

CVID.

He hasn't started her on IVIG. But I have a feeling it will end up that way.

We are still in experimental stages. We just found a great Dr. a few months

ago, so I have hope. He gave her the pheunomia vax. to test her. He said it

also might help her. We go back to see him in a few weeks.

Is the rash and discharge following antibiotics. She may have a yeast

infection that's caused by the antibiotic destroying her normal flora.

You will need to talk to your doctor about it.

No, it's before starting antibiotics. She is already on Diflucan daily for

Candida problems though. She also has toe nail fungus that won't go away.

Thank you soooo much for the info:) That is alot of good info and you

expained why so well. I will do the things suggested. Anything I can do to help

her

I will do.

Janet

April 28, 2004

from Dale, Mom to Katy, CVID, age 19

Janet, I get really tired of typing in that title, but it really, really

helps. I would like to help you, but I'm an old lady who forgets who is

who and what diagnosis is what. So.... before I try to tackle this,

please tell me what your daughter's diagnosis is and whether she gets

IVIG.

One of the basic problems of not having enough B-cells (IgG, IgA, IgM)

is that the body doesn't build protective antibodies for a particular

germ. In a normal immune system, if the body is exposed to a germ. The

body looks that germ over really, really well and destroys it. Then, it

makes an entire fleet of antibodies against that germ so that if at

anytime in the future it encounters that germ -- it unleashes the full

army of protection that is already there. Without working B cells,

when a germ enters the body, the body looks that germ over really,

really well and destroys it if all the other components of the immune

system are available -- but there's no army to unleash. Without B-cells

an army is never prepared. So, it treats every germ as a stranger and

a first time visitor which is very tiring for the immune system.

When you give IVIG, what you are giving her is someone else's already

prepared army. They just infuse that into your daughter's system at

regular intervals so that she has a standing army prepared against most

common germs. That really gives her immune system a rest and lets her

be healthier for awhile.

So, you are exactly right that she is catching the same germ over and

over and over. There's several things you can do -- they are ALL

aggravating and time consuming. One is changing bed sheets more often

especially during illness. Changing pillow slips. Put her toothbrush

in the dishwasher or nuke it in the microwave or buy her a new one more

often. Don't let her use a towel or washcloth that she's already used.

Hand washing to the max. Bleach or Lysol every handle and knob. But,

all of this is just " helpful " -- it won't prevent what is happening --

just maybe spread it out a little.

Is the rash and discharge following antibiotics. She may have a yeast

infection that's caused by the antibiotic destroying her normal flora.

You will need to talk to your doctor about it.

Please let me know her diagnosis and treatment and maybe I can be more

specific.

In His service,

Dale

BBsmart2@... wrote:

>I don't remember if I asked this before. Brittany gets the same infection

>over and over again. Then it's an infection of another kind over and over

again.

>I find it very strange.

>

April 28, 2004

Dale,

Thanks so much. Yes, you defiantly helped me to feel better. Hearing about

how well katy is doing is very encouraging. In collage and living in a dorm,

that is great:) So, how does she like collage? Is the IVIG what made all this

posable for her?

Sincerely,

Janet

April 28, 2004

In a message dated 4/28/04 2:58:48 PM Pacific Daylight Time, BBsmart2@...

writes:

Is the rash and discharge following antibiotics. She may have a yeast

infection that's caused by the antibiotic destroying her normal flora.

You will need to talk to your doctor about it.

Hi Everyone,

I'm just going to throw in my two cents. Very often, yeast coincides with

bacterial infections--especially vaginal infections. Unless both are treated

at the same time, they may not clear up. This is a problem especially for

those of us with less than stellar immune systems.

Sandi--Mom to , age 11. Immune Deficiency, Tetrology of Fallot,

Pulmonary Valve transplant, Mitral Valve stenosis, chronic sinusitis, chronic

ear

infections, asthma, severe allergies, GERD, possible Tethered Cord Syndrome.

April 28, 2004

In a message dated 4/28/2004 8:34:11 PM Eastern Daylight Time,

sassykay59@... writes:

Very often, yeast coincides with

bacterial infections--especially vaginal infections. Unless both are treated

at the same time, they may not clear up. This is a problem especially for

those of us with less than stellar immune systems.

He has her on Diflucan everday. So she is being treated at the same time.

Janet

April 28, 2004

In a message dated 4/28/2004 9:26:52 PM Eastern Daylight Time, dale@...

writes:

When I toured the Bayer facility last month I actually got tears in my

eyes thinking about the men and women who work long shifts just so my

daughter can have a almost normal life.

Dale,

As I am reading Katy's story I am in tears. Thank you for taking the time to

tell me about her. I am so HAPPY for her and your family. Katy has came a LONG

way. I can just picture her doing all the things you told me. What a

blessing! I know I could never handle this without Prayer. That's how I have the

power

to go on even when I think I don't.

Thanks,

Janet

April 28, 2004

from Dale, Mom to Katy, CVID, age 19

Janet, just don't knock yourself out with housekeeping stuff. There's

only so much good it will do -- but it does help to have SOMETHING you

can do. I had not thought of the toothbrush thing until someone in the

group mentioned it. Her diagnosis exactly fits what you are describing

-- just catching the same thing over and over. Thankfully, IVIG is now

available to help our little ones. It really will help to get all those

crazy things brought under control. Katy had fungus all over her. We

treated and treated and treated -- but now that she's on IVIG she

occasionally gets a spot or two -- treats it and it goes away. I hope

the testing goes well and that you get a full and complete picture of

what is going on -- then......you can start making real progress in

getting her healthy.

I went through that phase of being germ-phobic, but now, we've relaxed

back into normal human filth!!!! I remember when her room was

absolutely bare -- all of her stuffed toys were in plastic bags so that

I could clean, clean, clean!!!! Please don't go that crazy -- now you

should see (NO!!!!) the way she lives in the dorm! The only thing

she's still really picky about is her food. She wants to know that it's

fresh, hasn't been left out on the counter, etc. she avoids salad bars

and buffets, and is scared of her school cafeteria because she sees the

same things being served the next day. So, she has a microwave and

frig in the dorm and does a lot of her own cooking.

Hope that helps.

In His service,

Dale

BBsmart2@... wrote:

>

>Brittany's diagnosis is no IGA and IGG subclass 2 is low. So i was told it's

>CVID.

>He hasn't started her on IVIG.

>

April 28, 2004

from Dale, Mom to Katy, CVID, age 19

BBsmart2@... wrote:

>Dale,

>Thanks so much. Yes, you defiantly helped me to feel better. Hearing about

>how well katy is doing is very encouraging. In collage and living in a dorm,

>that is great:) So, how does she like collage? Is the IVIG what made all this

>posable for her?

>

IVIG and a lot of prayer!!! The year that Katy was diagnosed, she had

had 40 days of constant ear infections causing her ear drums to rupture

about once a week. It was totally not responding to antibiotics. She

had a sinus infection that was not responding to antibiotics. We'd been

treating it for 3 or 4 months. She had toe infections -- her toes

decided they didn't like her nails touching them!!! She had fungus all

over her chest and neck and bottom, yeast in the vagina. Her gut was so

raw she had nothing but watery, explosive diarrhea for 2 years. She

often was so bloated you could visibly see it. And she belched and

" passed " gas constantly (not a fun way to make or keep friends at age

11-13). She quit her gymnastics after a year of suffering and falling

farther and farther behind her team. She lost all the skills that she

had gained and had difficulty walking more than just from the house to

the car. We didn't shop because by the time she walked from the car to

the store, she was exhausted. I was already home educating her, but

even that came to a halt because she quit being able to retain

information. I would read to her and she would comprehend the reading

-- but the next day -- she couldn't recall what we'd read. She had

severe headaches and couldn't tolerate reading -- so I read everything

to her to try to keep her up with her age group. She tried dance

classes, but only made two classes out of that year. Most days, I sat

and rocked her on my lap while she tried not to cry because crying made

her head hurt worse. Her joints hurt, her muscles would go into

" charley horse " spasms. She was one miserable little cookie.

Contrast that to now. She's learned CardioKickboxing and uses a

punching bag to take care of her agression! She not only relearned

those 2 years of school that she lost -- but graduated high school in 4

years picking up 36 credits from a local junior college. She's now at

college and doing well. She gets her IVIG every 28 days in the dorm

from a home-health care nurse. She still has chronic sinusitis, but

usually only one sinus infection a year and it responds well to

antibiotics. She hasn't had her yearly ear infection yet -- but.....

they also respond to antibiotics. She walks 4 or 5 miles to the

nearest thrift store to buy clothes and is not only going to college,

but also working at a Renassaince Fair on the weekends. Yes, I'd say

that IVIG made a pretty major difference in her life. She still has a

sensitive gut, but eats anything she wants. She doesn't have any muscle

cramps or aches or that kind of stuff except when her IVIG dosage got

too low for her body weight.

When I toured the Bayer facility last month I actually got tears in my

eyes thinking about the men and women who work long shifts just so my

daughter can have a almost normal life.

She will tell you that the only thing that she fears about this disease

is if she can't get IVIG. Without IVIG, her life was essentially over

as far as doing anything fun. But, with it -- who know????????

Enough -- I've got to get busy.

God has been very, very good to us and carried us through those very

hard times, just as He'll carry you.

In His service,

Dale

April 29, 2004

In a message dated 4/28/04 6:48:46 PM Pacific Daylight Time, BBsmart2@...

writes:

He has her on Diflucan everday. So she is being treated at the same time.

Hi Janet,

Has she been on Diflucan and antibiotics at the same time?? Also, has the

Doc tested her for both yeast and bacterial infection?

Sandi--Mom to , age 11. Immune Deficiency, Tetrology of Fallot,

Pulmonary Valve transplant, Mitral Valve stenosis, chronic sinusitis, chronic

ear

infections, asthma, severe allergies, GERD, possible Tethered Cord Syndrome.

April 29, 2004

In a message dated 4/29/2004 6:45:05 PM Eastern Daylight Time,

sassykay59@... writes:

Has she been on Diflucan and antibiotics at the same time?? Also, has the

Doc tested her for both yeast and bacterial infection?

Hi, Sandi,

Yes, she is on both at the same time. She is on diflucan everyday. Not just

when needed.

She was diagnosed with chronic mucoc..... (not spelled right) candida.

Janet

July 1, 2005

Your Not whining!!! Been wondering what you have been up too... Take a Calgon day and let the worries be washed away! ) Now Leave the Nose alone and let it Heal !!! ) Have missed ya!

Love and

((( Painfree Hugs )))

Mom

I've been reading the messages but not replying. I've been very busy helping my family, and I am sure paying for it now. My brother is home from the Air Force, and I'm happy he is home. He was sent home for having a panic attack, dehydration, and (I believe) mild dyslexia. They screamed at him for doing things backwards. I have my own personal feelings about this, but perhaps it is for the best. I'm not sure if I told you guys about my nosebleed. If not, here is the story. I had a nosebleed that I couldn't stop. It was going for four hours, and I decided to go to the ER. They packed my nose a few times (kept packing it, taking that one out and using larger packing) and the last one was quite painful. I got impatient and took it out after a few days, and the bleeding had stopped. but now, I have infections running around in my head. (that sounds funny lol) I have some facial paralysis and some nerve involvement, as I have a nerve that is twitching making the left side of my face droop for a short period of time. (only during the twitching) I think it is also in my sinuses and jaw now, and of course my lymph nodes. This is becoming the most pain-in-the-butt nosebleed I've ever had. My doctor is *once again* on vacation (she goes on vacation every few weeks) so I put myself on antibiotics. So, enough of my whining, how is everyone else?

Hugs,

"We teach people how to treat us." - Unknown

May 16, 2006

Thinking about it. Yes you are right. Animals go in and they have things done. Most do not get all the good meds humans do yet they do great. Humans get lots of infections. Tis an interesting thing to think about.

From: "Margaret" <zztinau@...>Reply-Joint Replacement To: <Joint Replacement >Subject: infectionsDate: Wed, 17 May 2006 07:09:29 +1000Story time:My niece is a theatre nurse in a busy city hospital. Before going to uni to train as a nurse she was actually an animal hospital nurse.She laughs at the contrast between the two jobs:In the human hospital the staff are fanatical about everything being sterile in the operating theatre, yet infections happen more often that people would really like to hear about.In the animal hospital no attempt was made to have things sterile just clean as you would your kitchen. She says she has never heard of an infection in one of her animal patients.I remember it was the same thing when I was nursing. We used to do experimental surgery on goats. Now their infection rate wasn't as good as my neice, but the infection rate was far lower for the goats than the humans.So is it the species or the technique that is causing the problem?Aussie MargaretRTHR 1990 revised 2004Send instant messages to your online friends http://au.messenger.

May 16, 2006

Well folks, trust Margaret to hit us with a curly question, but it certainly started me thinking of all sorts of things to do with animal hygiene ... have you ever visited a pet food factory? Hygiene is found wanting I can assure you.

My "top of the head" answer to Margaret is that homo sapiens has a weaker immune system because we have been artificially shielded from acquiring immunities.

Aussie

Story time:My niece is a theatre nurse in a busy city hospital. Before going to uni to train as a nurse she was actually an animal hospital nurse.She laughs at the contrast between the two jobs:In the human hospital the staff are fanatical about everything being sterile in the operating theatre, yet infections happen more often that people would really like to hear about.In the animal hospital no attempt was made to have things sterile just clean as you would your kitchen. She says she has never heard of an infection in one of her animal patients.I remember it was the same thing when I was nursing. We used to do experimental surgery on goats. Now their infection rate wasn't as good as my neice, but the infection rate was far lower for the goats than the humans.So is it the species or the technique that is causing the problem?Aussie MargaretRTHR 1990 revised 2004Send instant messages to your online friends http://au.messenger.

May 17, 2006

I agree with your statement about the sheltered or insulated situation we

have gotten

ourselves into. I do think it is a western culture thing. My point of view is

this. I am the son

of an army familly as a result we lived all over the world when I was growing

up. We had the

standard injections before we traveled but I was exposed to bugs and such living

in the far

east and europe. Later with I was an adult I traveled to Mexico. Well you all

know the stories

of what you can get in Mexico. I was with a number of people. Most got sick

but I did not.

We were careful but still it happoned. Point is, those that had never been

outside of the US

came down with the runs. I realize that this is no scientific study but I am

conviced that there

is something to it.

I am not willing to test my idea against the bugs in a hospital however because

I also believe

they have mutated and are very dangerous.

Don

June 1, 2006

I find it disturbing that almost everyone still believes that

infections are " secondary " to our illness.

It's like saying the disease TB is secondary to people's weak immune

systems.

I'm accused of being vocal. But that's because it's hard to get

people to listen. (and I wish those who do listen would post here,

rather than writing me privately).

I'm also very disturbed by people claiming that " there are too many

infections to test for " . This is not only lazy, misleading,

irritating and wrong, it's also, I believe, a great disservice to

patients and can lead to great harm. The fact is, we don't routinely

get tested for ANY infections. Especially the simple yet obvious

(and cheap) ones like Staph, strep and pseudomonas.

I know several microbiologists who can tell you exactly how easy it

is to test and identify organisms. First you put the sample in the

petri dish and watch to see what grows profusely. You'll be able to

identify the culprit from that. No special techniques needed. Then

you put some antimicrobial discs in the dish, and see which ones

push the growth back. Then you treat with said antimicrobials, then

you retest, adjust the drug and retreat until ALL organisms and

symptoms are gone. Then, if symptoms are not completely gone, you

can dig for stealthier organisms, but I bet you'll be surprised at

how infrequently that will be necessary.

This used to be routine, until money became more important than

patients. Now the only patients that get this care routinely are

pets and farm animals.

penny

>

> I do find it disturbing that some people are implying that

treatment

> of infections is the final goal of treatment for CFS, both

necessary

> and sufficient for a cure. We will from time to time have

infections,

> just like non-PWCs. We may even be predisposed to or more

susceptible

> to certain infections because of our CFS. and infections may cause

> further matabolic or other problems and symptoms some of twhich

may

> oerlap with what are usually thought of a 'CFS' symptoms. But

> treatment of the infections is pretty much just like treatment for

> any other confounding, secondary or residual condition. We will

still

> have CFS (and the continuing susceptibility to more infections

> possibly) when we are through with that. If we didn't, we wouldn't

be

> considered people with CFS in the first place.

>

June 1, 2006

Penny, I did write to you back channel asking whether you

knew of any doctors testing for the infections I expect I

have.

You didn't have an answer for me. It makes me crazy not

knowing where to go for help or whether or not I'll be well

enough to go for that help if it's a long distance from

home.

Your posts tend to put me in a state of despair. I am not

lazy; I am sick.

I appreciate your posts, but please temper your comments.

You wrote: " This used to be routine, until money became more

important than

> patients. Now the only patients that get this care

> routinely are

> pets and farm animals. "

I have often wished that I could be my daughter's dog. Many

of us are doing the best we can. In many cases you are

preaching to the choir.

I cannot get any testing where I live. I no longer bring my

doctors research painstakingly put together. They ignore it

or get angry. After 16 years of this kind of treatment,

what would you recommend I do? I'm listening, both ears

wide open.

I keep trying supplements but usually I'm unable to tolerate

them. You caught me on a rough morning and your post put me

over the top.

Kathy J. F.

----- Original Message -----

From: " penny " <pennyhoule@...>

>I find it disturbing that almost everyone still believes

>that

> infections are " secondary " to our illness.

>

> It's like saying the disease TB is secondary to people's

> weak immune

> systems.

>

> I'm accused of being vocal. But that's because it's hard

> to get

> people to listen. (and I wish those who do listen would

> post here,

> rather than writing me privately).

>

> I'm also very disturbed by people claiming that " there are

> too many

> infections to test for " . This is not only lazy,

> misleading,

> irritating and wrong, it's also, I believe, a great

> disservice to

> patients and can lead to great harm. The fact is, we don't

> routinely

> get tested for ANY infections. Especially the simple yet

> obvious

> (and cheap) ones like Staph, strep and pseudomonas.

>

> I know several microbiologists who can tell you exactly

> how easy it

> is to test and identify organisms. First you put the

> sample in the

> petri dish and watch to see what grows profusely. You'll

> be able to

> identify the culprit from that. No special techniques

> needed. Then

> you put some antimicrobial discs in the dish, and see

> which ones

> push the growth back. Then you treat with said

> antimicrobials, then

> you retest, adjust the drug and retreat until ALL

> organisms and

> symptoms are gone. Then, if symptoms are not completely

> gone, you

> can dig for stealthier organisms, but I bet you'll be

> surprised at

> how infrequently that will be necessary.

>

> This used to be routine, until money became more important

> than

> patients. Now the only patients that get this care

> routinely are

> pets and farm animals.

>

> penny

>

June 1, 2006

Penny,

>I'm accused of being vocal. But that's because it's hard to get

>people to listen. (and I wish those who do listen would post here,

>rather than writing me privately).

Here is a once vocal now not very vocal member of I & I chiming in to give you

my full support. I have been ill for 25 years (sudden onset, although I can

trace back some things back to the time I was a baby) and I believe that

infections are at the very CORE of my illness. And BTW, I don't need to " listen "

as I have known ever since I became ill that my illness was caused by

infection(s), in my case Lyme being one of the culprits, as I had loads of

exposure and a beautiful EM rash.

Basically I agree with everything you say here, Penny, the microbiologists could

identify far, far more than they do if only they'd just .... DO IT!!

The only problem I have with what you and Tony say, is how do you get the RIGHT

tissue sample unto the damned plate/slide?

Some slow growing bugs are hard to identify, and are not plentiful in blood for

eg. and are often found in deep tissues and in variant forms. But this does not

agree with Tony, who can only get his mind around things HE can SEE under HIS

scope, the rest does not exist!!!

Once you've got the right sample they should be able to carry out the necessary

culturing and testing against abx, and for the less " culturable " organisms,

there are now molecular techniques that can be used but that rarely are.

I think that even if doctors were willing to test properly, some bugs would

still be fastidious or near impossible to grow.

What gets to me is that researchers are paid to amuse themselves with molecular

techniques (PCRs) to identify rickettsiae in Egyptian mommies' teeth for eg, but

hardly anyone wants to use these same techniques to find pathogens in sick live

people!

I don't post because I get tired of the constant abuse from Tony, I am tired of

Tony claiming to be the only person to seriously think that we have serious

infections. I've been thinking the very same thing for at least 25 years!!!

In my case, I practise trial an error with my abx and the only things that

REALLY work is the imidazoles and mefloquine aka Lariam (anti-malarial).

Nelly

Re: Infections