Hello.
I appreciate your heart in wanting to help your sister. That is great.
We have a two year old son with CF.
My wife and I are Christians and the Bible was a great comfort to me. I was led
to read Psalm 139- that passage clearly says that God knows us all in great
detail while we are in the womb. It also says that He stitches each child
together with great care. It was no mistake that He took a recessive gene from
me and my wife and stitched them together to give my son CF. I do not know why
but I trust God's loving and providential hand.

This may be a help to your sister, to know that she and her husband are not
being punished by God nor is it just a matter of statistics and she drew the
unlucky straw. It is providence and He makes no mistakes.

Also, I would read books or articles on the subject to become more familiar with
the causes, symptoms and treatment of CF. I know my wife and I just need help
around the house, but we have no family to help us. Caring for a CF child takes
a lot of work but if you have other children it is even more work. Your offer to
help her with whatever she needs would be invaluable.

I hope this helps some.

Jeff


----- Original Message -----
From: happyday4me2000
To: cysticfibrosissupport@yahoogroups.com
Sent: 3/31/2005 2:25:50 PM
Subject: [Cystic Fibrosis Support] (unknown)



Ok, is this how this is done. If it is, I am wanting to know what I
can do to help my sister. Her 8mo. old son has been diagnosed w/ CF
and I am fairly ignorant on the subject. I have always been
the "fixer" in the family and now I'm not even sure how to help. She
is young and I think maybe a little overwhelmed by the situation and
with all the free advice advice coming from 1001 friends and
relatives. I just want to do and say the right thing so that she will
be open to my help over the long term. Does this make sense. I hope
I'm not wasting anyones time. I just care.




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[Non-text portions of this message have been removed]

You are not"wasting ones time", what you are doing is
a postive thing which is called positive attitude.
That is one element which you must pass on towards
your Sister. Positive thinking will really help  CF
patient, as well as their loved ones. There's a good
web site which I highly recommend....boomereaisan.com.
His 12 tear old Son has CF and in particluar, its a
site that's positive. I also have a 9 reay old boy
whit this horrible disease. however I would not "trade
him in" for a healthy young boy because he has a
special herat which God gave him. Hopefully the
aforementioned will help.

Best,
Glenn






--- happyday4me2000 <happyday4me2000@...> wrote:

>
> Ok, is this how this is done. If it is, I am wanting
> to know what I
> can do to help my sister. Her 8mo. old son has been
> diagnosed w/ CF
> and I am fairly ignorant on the subject. I have
> always been
> the "fixer" in the family and now I'm not even sure
> how to help. She
> is young and I think maybe a little overwhelmed by
> the situation and
> with all the free advice advice coming from 1001
> friends and
> relatives. I just want to do and say the right thing
> so that she will
> be open to my help over the long term. Does this
> make sense. I hope
> I'm not wasting anyones time. I just care.
>
>
>
>




__________________________________
Do you Yahoo!?
Yahoo! Personals - Better first dates. More second dates.
http://personals.yahoo.com

Ok, is this how this is done. If it is, I am wanting to know what I
can do to help my sister. Her 8mo. old son has been diagnosed w/ CF
and I am fairly ignorant on the subject. I have always been
the "fixer" in the family and now I'm not even sure how to help. She
is young and I think maybe a little overwhelmed by the situation and
with all the free advice advice coming from 1001 friends and
relatives. I just want to do and say the right thing so that she will
be open to my help over the long term. Does this make sense. I hope
I'm not wasting anyones time. I just care.

I have benefited myself and know many who have benefited from reducing food
and chemical allergies and sensitivities, which I believe to be quite common in
a wide range of chronic illnesses.  In some cases, they may be prominent, in
others they may play a more subtle role, but one might as well minimize all
possible sources of symptoms no matter what your illness.



Most people who have looked into the area of the “hidden” or hard-to-detect
food sensitivities don't realize that only 1 or 2 allergy/sensitivity blood
tests is often not enough.  I've had probably a dozen blood tests for food
allergies/sensitivities, of all the best sorts, and now realize that they do
little
good when your sensitivities are very widespread, and they can be misleading
even in those with only a few sensitivities.  I have found the at-home,
do-it-yourself free pulse testing allows one to fashion a diet with the least
allergens more effectively than the various blood tests and skin tests, since no
test detects all sensitivities and the reactions also tend to vary so much
depending on how much one has been recently eating a particular food.  So, over
many
years, and especially in the last 2 or 3 years, I have been improving on how
one can use the short cut and regular pulse tests to best advantage.  You can
read about it at no charge in articles at: www.members.aol.com/SynergyHN.
These articles are all provided as a public service and are not part of a money
making venture.



I went from a stage when I was constantly fighting weight gain (due to the
food cravings associated with the food allergies) to one where the food
sensitivities and allergies were so severe I became 30 lbs underweight. One can
have
reactions ranging from diarrhea to constipation, high or low blood pressure,
gastrointestinal or respiratory symptoms, depression or anxiety, muscle or joint
aches, heart arrhythmias and palpitations, migraines, attention problems
etc..-- the ranges of reactions are so varied. But the pulse test allows one to
fairly quickly identify one’s sensitivities.  I also found that my immune
function was improved through reducing these sensitivity reactions.

Two quick tests to get a sense as to whether one has food reactions are to
see if you have a different pulse rate when sitting than when standing.  Or you
can take your pulse after every meal, and before rising and going to bed, and
if it varies more than a few beats per minute over several days, it may
indicate you have food sensitivities (but is less likely to if your diet is very
constant).  It should be noted that if you are on beta blockers or a pacemaker,
these tests may not work, but other methods are available.

Hope this helps someone.  The Summaries of two articles are below.



Joyce Waterhouse, Ph.D.

see web site for more on my background



From Issue 5 of CISRA’s Synergy Health Newsletter  (see
www.members.aol.com/SynergyHN for complete articles, as well as others on this
topic and other
topics)
Food Allergy/Sensitivity:  The Pulse Test and Other Strategies
by J. C. Waterhouse, Ph.D.

(Disclaimer:  This material is intended for information only and is not
medical advice. Neither CISRA nor the editor receive funding from any doctor,
lab,
or manufacturer of any medication or associated products.)

     Summary    Many people have found that reducing food allergies,
sensitivities and intolerances has been helpful in reducing a wide range of
symptoms
and reducing exacerbations in many diseases in which the immune, endocrine or
nervous systems are involved (e.g., chronic fatigue syndrome, fibromyalgia,
migraines, asthma, inflammatory bowel disease, irritable bowel syndrome and
autoimmune illnesses, such as multiple sclerosis, lupus, and rheumatoid
arthritis).
This article focuses on food reactions, although reactions to inhaled
chemicals are also  important and will be touched on briefly.  Food
allergies/sensitivities/intolerances are often neglected because the reactions
may be complex
and variable, and involve multiple immune and non-immune mechanisms.  Only a
small proportion of people experience very obvious reactions, like an immediate
rash or anaphylactic reaction (IgE mediated, Type I reaction).  More common
and more difficult to detect are the delayed immune sensitivities (Types II, III
and IV) and the intolerances, such as lactose, gluten or fructose
intolerance, or problems due to lectins or oxalates.  Even the IgE mediated
reactions are
not always easy to identify and may include a late phase reaction.  Reactions
are not limited to proteins, but have been shown to occur when other
substances combine with proteins to form haptens.  Increases in intestinal
permeability due to a variety of causes can allow potentially allergenic
substances to
enter the blood stream.  (Note:  for convenience, allergy or allergen is meant
to include all types of IgE and non IgE reactions.)

     Unfortunately, many people do not realize that food and chemical
allergies/sensitivities/intolerances are contributing to or causing their
symptoms.
The phenomenon of masking, the multiplicity of mechanisms and tests, the
effects on systems other than the gastrointestinal tract and the changing level
of
sensitivity with exposure, all complicate the identification of food reactions.
  Some people try just one type of test and eliminate a few foods and believe
this is all they can do.  Many do benefit greatly in this way, especially if
the test is fairly comprehensive, like the ELISA/ACT test (covers 390 foods and
chemicals and Types II, III and IV sensitivities; a controlled study showed
that use of the test results led to a 30-50% symptom reduction in fibromyalgia
patients).  However, for others, an incomplete approach leads them to miss
many foods that cause reactions via a different mechanism and/or they develop
new
sensitivities to the foods that replace those they eliminated.  As a
consequence, there is an underestimation of the role of food reactions in many
illness.

     This article briefly discusses 4 reasons food
allergies/sensitivities/intolerances are often neglected and 5 reasons it is
important to detect and
eliminate or treat them.  Next, the article presents the pulse test, as
described
by Arthur Coca, M.D., as well as a shortcut version of the test and ways of
maximizing the test’s effectiveness.  Then follows a discussion of some other
methods, along with some of the experiences of the author from 15 years of
learning about and dealing with severe food sensitivities.  Among the ideas and
issues included are:  1. a brief outline of 8 types of food reactions, including
ideas on how to minimize problems with oxalate-containing foods,  2. the
elimination diet with food “challenge” testing, 3. the rotation diet and how
it
may be modified to reduce problems with “unmasking” that may intensify
symptoms,  4. how food cravings and other “withdrawal” symptoms may be used
to help
identify allergens, 5. a brief discussion of  immunotherapy,  6. the importance
of striving for maximal avoidance of allergens, including chemicals, to allow
the body to become less hypervigilant, 7. the potential role of microbes,
such as newly-identified Mycoplasma species, Entamoeba histolytica, Candida
albicans and certain viruses in creating a vicious cycle, in which microbes may
increase allergies and allergies may make it harder to eradicate microbes, 8.
other ways proposed to reduce reactions, such as guaifenesin and low
carbohydrate
diets for hypoglycemia, 9. survey results showing avoidance of problem foods
and chemicals being rated one of the  most successful treatments by chronic
fatigue syndrome patients, 10.  increased knowledge seems likely to increase
benefit for those who have not had as much success with allergy testing.  The
final section includes a Reference section and a Resource section, providing
lists of companies and organizations that offer products and services that may
be
of use in combating allergies.

     For those with moderate to severe sensitivities, the help of a physician,
preferably one trained by the American Academy of Environmental Medicine
(AAEM.com), is highly recommended.  However, it is the view of the author, that
even with the physician's assistance, do-it-yourself methods are a helpful, and
for some, an essential adjunct to achieve maximal health benefits.

Preview of article for Issue 8: 2004 Preview/Update on Food
Allergies/Sensitivities and the Pulse Test:  Withdrawal Reaction Mechanisms,
Overcoming
Resistance, New Pulse Test Tips and Some Other Methods
by J. C.  Waterhouse, Ph.D.

Overview.  This article provides a new preview/update of an article for the
next issue of CISRA’s Synergy Health Newsletter.  A number of subjects that
were not covered previously will be discussed, as well as some new techniques
and
strategies that I have found to be helpful in the last 2 years.  For a more
complete background, readers should refer to the article in Issue 5 on food
allergies/sensitivities/intolerances and the pulse test, including the Cautions
(Cautions reprinted below), as well as the 2002 food allergy/sensitivity
preview article  (see SynergyHN Home page). In this current preview/update, a
brief
scientific explanation of food allergy/sensitivity symptoms is provided,
including the probable cause of food allergy withdrawal symptoms.  This article
also covers how to overcome a resistance to this approach by recognizing the
role
of food addiction and how one can view dietary change as a challenge and
opportunity for greater health and empowerment that can accompany other
treatment
approaches.  There is also more detail regarding some methods that may help
those who have gotten rid of the worst allergens, but still may be able to go
further to maximize the benefit they can achieve and for those who are near
universal reactors.  There will be tips on the pulse test, as well as mention of
methods to use if one is unable to use the pulse test as an aid.  It is also
suggested that certain infectious causes may be behind extensive sensitivities
in some patients.  More information on these topics and more references have
been provided in other articles in CISRA’s Synergy Health Newsletter.  In this
brief preview, these articles will simply be referred to by the issue of the
newsletter in which they occur (see SynergyHN Home page for these previous
issues of the newsletter).


[Non-text portions of this message have been removed]

Well Tiffany I think any exercise and getting that heart rate up really
helps with airway clearance. There is something about jumping jacks,aerobics
and jumping on a trampoline that really get me going. My docs say that an
active person or children,like Robins son. Well we have to do a little more
for clearance, mostly because we are so fit. So if Robins son does track
which wow is very physical and then puts the vest on, well his body is
saying big whew this is cinchy. Persons with CF that are active are yes
usually healthier but sometimes it takes a little more effort to get us
coughing. As our bodies are just use to activity. I will never complain
about the vest because when I'm ill exercise well is very difficult, so I
need it. I don't feel it loosens near as well as CPT but we are all so
different. I do know when I have a bad infection and I feel like I am
drowning I have actually slept in my vest, very weird I know but it works. I
have to wedge the foot peddle under some furniture, hehe. Have a good day,
Lisa 43wcf

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

From: Tiffany Sharrow
Date: 03/10/05 08:59:59
To: Lisa Lee
Subject: Re: Forwarded by Return Path: Re: [CYSTIC-L] Coughing and the Vest

I know when my husban was a kid before they gave him the vest they used to
make him do jumping jacks before school and before bed. He used to use the
vest while he did his treatments it seemed to work well. but i will tell you
what if you have the vest use it i wish my husban would have of.


Lisa Lee <lisaannlee@...> wrote:


Hi Robin, the vest doesn't always work real fast. I have found that if
I
change the pressure and frequency that that sometimes helps. I use the
vest
but CPT or the acapella seem to work better for me. Sometimes hydration
plays a role in how loose we can get our mucus. If well hydrated I do
better
with getting it up, sometimes I just don't have anything in there but
can
still get myself to cough. I also have experimented with using my
nebulized
treatment with the vest and before the vest. Before works better for
me. To
be truthful just doing about 20 jumping jacks probably works better
than the
vest for me. If I can get my heart rate up and get the cough started
the
vest is much more efficient. After my shower is also a good time for
the
vest. I definitely feel it is important to keep up and continue with
all
therapy whether sick or not. As a teen I would say, I feel fine I don't
need
to do it. Well I know better know. Even though we all share a common
disease
we are all very unique in what works for us. I will substitue exercise
sometimes for the vest or CPT and I don't feel guilty about that as I
feel
the rewards with both. Keep him coughing, Lisa 43wcf

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

From: Robin Evans-Williams
Date: 03/08/05 11:10:09
To: CYSTIC-L@...
Subject: [CYSTIC-L] Coughing and the Vest

All this discussion about teaching children to cough has brought  up
another
question. After how many minutes of Vest and/or CPT  do you start to
see
results, i.e., sputum being coughed up?
My son does the Vest for 1/2 hour every morning, but it takes a good
15-20
minutes before stuff starts to happen. Just curious if this is usual..
Thanks!
Peace - Robin (mom of 16yowcf)

*-.,,.-**-.,,.-**-.,,.-**-.,,.-**-.,,.-**-.,,.-**-.,,.-**-.,,.-**-.,,.-*

   WARNING: Consult a trusted doctor before ANY change to your
treatment.

                             @}->- @}->- @}->-

   Visit us at Http://Cystic-L.org and see our extensive Handbook
on-line
   (contains much CF information, and references to other CF resources),
   the Photo Archives (people with CF, parents with CF, subscribers to
   Cystic-L, and a memorial page), the CF Shop, the world's largest
   cystic fibrosis bookstore (in the CF Shop), and much more!

                             @}->- @}->- @}->-

                            KNOWLEDGE IS POWER!

*-.,,.-**-.,,.-**-.,,.-**-.,,.-**-.,,.-**-.,,.-**-.,,.-**-.,,.-**-.,,.-*
..

*-.,,.-**-.,,.-**-.,,.-**-.,,.-**-.,,.-**-.,,.-**-.,,.-**-.,,.-**-.,,.-*

  WARNING: Consult a trusted doctor before ANY change to your treatment.

                             @}->- @}->- @}->-

  Visit us at Http://Cystic-L.org and see our extensive Handbook on-line
  (contains much CF information, and references to other CF resources),
  the Photo Archives (people with CF, parents with CF, subscribers to
  Cystic-L, and a memorial page), the CF Shop, the world's largest
  cystic fibrosis bookstore (in the CF Shop), and much more!

                             @}->- @}->- @}->-

                            KNOWLEDGE IS POWER!

*-.,,.-**-.,,.-**-.,,.-**-.,,.-**-.,,.-**-.,,.-**-.,,.-**-.,,.-**-.,,.-*



Do you Yahoo!?
Yahoo! Small Business - Try our new resources site!


[Non-text portions of this message have been removed]

--- In cysticfibrosissupport@yahoogroups.com, "who let the dogs out?"
<chris1h23@y...> wrote:
>
> This group is now going on its 3rd year,and have been active over the
> time the group been around..So if your disabled and looking for
> support and understand then this group is for you...There are devotee
> but only looking for people that see us as human being and not just a
> fetish thing..To join you MUST have information on profile to
> join..There is almost 1500 members now and the message board is
quite
> active....
>
>
>
> http://groups.yahoo.com/group/INTIMACYFORTHEDISABLED/

Just about sex alone...Its more in caring about each other
> This group is now going on its 3rd year,and have been active over the
> time the group been around..So if your disabled and looking for
> support and understand then this group is for you...There are devotee
> but only looking for people that see us as human being and not just a
> fetish thing..To join you MUST have information on profile to
> join..There is almost 1500 members now and the message board is
quite
> active....
>
>
>
> http://groups.yahoo.com/group/INTIMACYFORTHEDISABLED/

Hello.

My own background is in researching a number of chronic illnesses, including
those that involve problems with chronic infections, or have particularly
severe consequences from infections (more on my background may be found at:  <A
HREF="http://members.aol.com/SynergyHN/">
www.members.aol.com/SynergyHN</A> ).  I thought this group might be interested
in
something I have learned about regarding colds and flus that has been extremely
valuable for me and my family.  I become involved in this area because I have
suffered from CFS and Lyme Disease for many years.

Perhaps you might let me know if you think the information in the following
article might prove useful in your chronic condition, and if so, who else might
be interested in this, so I might contact them, or you might pass this
information along.

I have also written articles on food sensitivities and newer techniques for
identifying the hidden ones, which you can also see at the web site below.  Let
me know if you think this would also be of use in your chronic condition.

Sincerely,
Joyce Waterhouse, Ph.D.

Chronic Illness Support and Research Association (CISRA)
CISRA’s Synergy Health Newsletter (CSHN:  Dec. 2004)
Issue 7: Fourth Article
<A HREF="http://members.aol.com/SynergyHN/">www.members.aol.com/SynergyHN</A>

A Strategy for Completely Preventing Colds and Flus?
by J.C. Waterhouse, Ph.D.

Abstract

   This article hypothesizes that: 1. daily use of very low dose intranasal
and sublingual alpha interferon may be able to entirely prevent respiratory
viruses that cause colds and possibly flus and, 2. daily use of very small
amounts
of the homeopathic Boiron Oscillococcinum (TM)* may be useful for preventing
respiratory and gastrointestinal viruses. Some supporting background and case
studies are discussed as well.

Introduction

   For many people, colds and flus are an occasional inconvenience, but for
others they can be quite frequent, debilitating or even lead to life-threatening
complications.  The health of people with conditions such as chronic lung
inflammation, bronchitis, asthma, sarcoidosis, cystic fibrosis, diminished
cardiovascular capacity, ulcers, chronic diarrhea, inflammatory bowel disease,
immune suppression due to chemotherapy, transplants, autoimmune disease, chronic
fatigue syndrome, AIDS or other inherited or acquired immunosuppressive
disorders, all can be worsened by respiratory or gastrointestinal viruses and
their
complications.  In this article, two possible preventive measures are proposed
and supported with some case histories and suggestive scientific research.
Together, these inexpensive strategies may have the potential to prevent
virtually all colds and flus in many people, and if these early indications
prove to
be correct, this possibility is available, not far off in the future, but very
soon.

Very Low Dose Intranasal and Sublingual Alpha Interferon For Respiratory
Viruses

   Alpha interferon, a synthetic version of a naturally occurring human
cytokine, is used at high doses (1 to 5 million IU) by injection for certain
cancers
and hepatitis infections (1). There have been at least two placebo controlled
studies (2, 3) that showed that intranasal alpha interferon could reduce
colds by 39-88% when begun near the time of exposure. These studies used high
doses of alpha-2 interferon and were found to cause nasal irritation and
bleeding
in some patients.  At these high doses, there might also be the potential for
other side effects if continued for longer periods of time.  In hepatitis and
cancer, a wide array of side effects from high dose alpha interferon
injections can and do occur, and some patients need to reduce the dose or stop
treatment because of these side effects (e.g., neurotoxicity, lethargy,
neutropenia).

   Alpha interferon is known to have several means of helping the immune
system to combat viruses (reference 1, p. 1070-1). The body naturally produces
very
large amounts of alpha interferon in the first few days of a cold, and this
is very important during the early period of infection, before the immune
system has time to produce virus specific lymphocytes and antibodies. As will be
seen from the case history presented below, it may be that a very small amount
of alpha interferon, given ahead of time, may have dramatic preventive effects
if delivered to the cells that first encounter the virus in the nose and
throat. This case history suggests that a strategy using daily low doses of
intranasal and sublingual alpha interferon may be effective, relatively 
inexpensive
and have minimal, if any, side effects. The daily use may be an important
issue, since if one begins after viral exposure or first symptoms, it would
probably be less likely to be able to halt the viral infection.

Anecdotal Evidence of Prevention of Colds

   The first part of the strategy  is so far supported primarily by the
records of a single patient, but the research discussed above suggests that it
may
be valid enough to serve as a basis for further study.  The patient was ill
with chronic fatigue syndrome for over 18 years, and had averaged 0.88 colds per
month during the last 2 years.  Frequently, a known exposure to a cold of
another person was involved, and so it was fairly clear that this was not a
chronic allergy situation (the patient also has low IgE levels indicating low
allergy levels).  Between colds, the patient was not prone to significant
respiratory symptoms from other causes.

   Many  immune enhancing vitamins and supplements were tried by the patient
over the years, but the colds continued at a high rate. The previous year, the
colds even continued when alpha interferon was tried sublingually at doses up
to 1250 IU daily, though there may have been a reduction in frequency (see
below).  Interestingly, 10 years ago, in the same patient, the sublingual doses
alone were observed to be much more successful at preventing colds than they
were during this trial, suggesting responses may vary with immune status.

   When the patient was taking the sublingual alpha interferon alone, the
colds typically began in the nose, rather than the throat.  This observation
prompted the use of half of the dose sublingually and half the dose using a
nasal
spray.  The first time the nasal spray was tried, it was after the first few
hours of the cold, after some nasal symptoms of a cold had begun.  Under these
circumstances of delayed use of the nasal spray, before the new strategy of
daily treatment had begun, the alpha interferon did not succeed in preventing
the
cold from developing further.  The subsequent success of the daily use of the
intranasal and sublingual alpha interferon in preventing colds, as described
below, suggests how important it may be for it to be used prior to the first
symptoms.

   Initially, when this new strategy of daily sublingual and intranasal low
dose alpha interferon was tried, the dose of alpha interferon used was 500 IU
intranasally and 500 IU sublingually.  Since this approach of daily preventive
use was begun in June 2004, 6 months ago, the patient has not had a single new
cold or respiratory infection. Prior to this last 6 months, there was only two
times in the last 3 years in which this patient went even 2 months without a
cold.  Over time, lower doses were tried and still seem to be effective.  Over
the last 2 months, the dose has been decreased to 125 IU daily or even more
recently, on alternate days.  On at least 3 occasions, the patient has been
exposed to a cold and has not become ill.  Before this approach was begun, the
patient does not recall being exposed to a known cold in the last 10 years
without becoming infected (the patient keeps records of exposures to colds, as
well
as colds and other symptoms).

   To put this in context and adjust for the season of the year, the data from
this patient for the 3 previous years was examined for a total of 18 months
(June-November, 2001, 2002, 2003).  The rate of colds was 0.67 colds per month
for those 18 months, prior to the new approach.  If one excludes the data from
2003, during which the patient was taking 750 IU alpha interferon
sublingually and had only 2 colds, the rate of colds without any alpha
interferon would
have been 0.83 colds/month  (the lower rate of colds when taking the sublingual
alpha interferon suggests that it may have stopped some of the colds that
might have begun in the throat).  The sudden drop from a rate of 0.67-0.83
colds/month to a rate of 0.0 colds/month for 6 months coinciding with the use of
this new strategy is strongly suggestive of its effectiveness.

   Of course, more study is needed to verify this case history and also to
find out what doses might work best for various types of patients.  No side
effects, positive or negative, were experienced by the patient during the time
during which the alpha interferon was being used.  Only one other patient has
tried this approach so far, and for only 2 months.  This is not long enough to
tell clearly if it has been effective, since this second patient was not prone
to
frequent colds.  However, no side effects were experienced by this patient
either.

   The medical textbook, Harrison’s Principles of Internal Medicine, (1)
describes one of the mechanisms through which alpha interferon works as being
particularly able to counteract the strategy used by the influenza virus.  Also,
it
seems reasonable that, since alpha interferon has broad anti-viral
properties, daily use of these low doses might even help prevent serious
respiratory
viruses, like influenza, as well as SARS and bird flu.  However, this low a
dose,
administered in this way, would not be likely to be effective against viruses
that enter through routes other than through the respiratory system, such as
West Nile virus or gastrointestinal viruses.

Potential for Side Effects Appears Minimal

   Alpha interferon stimulates the TH1 branch of the immune system, and this
might be of concern for those with certain illnesses in which an increased TH1
immune response would be detrimental.  In many of these cases, high doses of
interferon could be harmful.  However, the doses being discussed here are very
small, orders of magnitude smaller than those used in cancer and hepatitis
(about 1/40,000th ), and it would seem unlikely that they would be harmful. The
doses discussed above for preventive use are also quite small relative to the
levels of alpha interferon which the body normally produces during the first
few days of viral infections.

   Also, it is likely that the effect of these very small doses is very
localized, since the somewhat higher dose of sublingual alpha interferon
mentioned
above (1250 IU) did not seem to affect the rate of infection of colds entering
through the nasal route or the rate of gastrointestinal virus infections. No
systemic effects were detected by the two patients who used it, even in the
case when 1250 IU was used sublingually.  It seems probable that far greater
systemic effects would be experienced by  a person not using this very low dose
alpha interferon who experienced repeated acute infections in which the body
produces very large amounts of alpha interferon.  And there would probably be
much greater potential for harm from a viral infection, particularly for
individuals with certain illnesses in which complications of infection might be
serious.

Obtaining Low Dose Interferon

   The alpha interferon in these very small doses was obtained via mail order
with a prescription through Catchings Pharmacy (800-356-1620, Amarillo,
Texas).  The alpha 2-interferon used for injections for cancer patients is
diluted
by the pharmacy and divided into 250 IU doses, which are then frozen and mailed
overnight.  The cost is reasonable, especially if the lower doses on
alternate days turn out to be more widely successful.  Individual doses can then
be
thawed in the refrigerator when needed, but seem to last for at least a few
weeks in the refrigerator when thawed.  One can purchase special nasal spray
bottles (Key pharmacy has a convenient small glass sprayer, 800-878-1322) or use
the empty container from an over-the-counter nasal spray.  Other pharmacies
could also do the dilution or may already do so, but I am currently only aware
of
Catchings Pharmacy as a source for these low doses of diluted alpha interferon.

   (Note on cold symptom reduction:  This author has written previously about
anecdotal experiences with a cold remedy that was quite successful in
relieving cold symptoms, especially if it was begun soon after the first
symptoms
appeared and was taken frequently (4).  However, it appears that, in very
susceptible people, colds still often become established, can be quite fatiguing
and
the remedy does not work equally well for everyone.  It does have the advantage
of being a non prescription option, though.  The product is Boericke and
Tafel’s Alpha CF (TM). It is widely available in health food and drug stores.)


Preventing Influenza and Gastrointestinal Virus Infections With Boiron
Oscillococcinum (TM)*

   This part of the prevention strategy is based on experiences with a
homeopathic medicine, Boiron Oscillococcinum (TM)*, in preventing influenza and
gastrointestinal virus infections. This use for prevention and the use for
gastrointestinal viruses has not yet been studied in a scientifically controlled
manner, nor are these uses endorsed in any way by the manufacturer due to this
lack
of research.  However, since the potential benefits are great, this author
believes that some anecdotal results are worth reporting, so as to encourage
controlled scientific studies in the future to evaluate its usefulness.

   Homeopathic remedies are more widely used in Europe than in the U.S.
However, the homeopathic approach, involving very small doses of substances, has
been increasingly studied and used in the U.S. in recent years (5). The Boiron
Oscillococcinum remedy is derived from duck hearts and livers, and through the
homeopathic method of dilution, is so dilute that the presence of molecules
from the duck would be wholly unsuspected by anyone using the remedy.  Boiron
Oscillococcinum is particularly dilute even according to homeopathic standards
(200C, the larger the number, the more dilute, in the homeopathic system).  The
only taste detectable is that of the base that contains lactose and sucrose.
For details on homeopathy, its theory, practice and controversies relating to
it, the reader is referred elsewhere (5, 6).

   For the purposes of this article, it is enough to know that Boiron
Oscillococcinum is regulated by the FDA as a drug, is sold over the counter, has
no
reported side effects and has been found by several controlled studies to be
better than placebo in reducing symptoms of the flu or flu-like illnesses (7, 8,
9, 10).  The usual recommended way of using it is to dissolve the entire
contents of one tube in the mouth, usually under the tongue, at the first sign
of
an influenza-type illness and repeat every 6 hours, up to 3 times a day for 3
days (see package for more details).  It is best to take it apart from meals
(i.e., leaving 15 minutes or more between the remedy and a meal), and in a mouth
free of strong flavors.

   In this article, the way in which the Oscillococcinum remedy is proposed to
be used is as an experimental prevention strategy for influenza, as well as
flu-like respiratory viruses, and gastrointestinal viruses. Although not
studied scientifically so far, Papp et al (10) mentions that for influenza-like
syndromes, it “is widely used in France as prophylaxis...” in addition to
therapy.  I will discuss the experiences of 3 patients in the U.S. who tried
using it
on a daily basis for prophylaxis.

Anecdotal Evidence

   Of the patients to be discussed here, the first patient, the same one
discussed in the most detail above, provides the strongest evidence for
prevention
of gastrointestinal viruses, since this patient was having frequent
gastrointestinal viral infections.  The illnesses were recorded by the patient
and were
usually characterized by diarrhea, nausea, fatigue and muscle aches. The
initiation of these infections were often tracked to an exposure to a person who
had a similar infection, and the type of contact was such that it was fairly
clear that there was an infectious virus involved and not a food borne bacterial
cause.

   During one of the periods when this patient was being exposed to a
household contact with a diarrheal illness, the patient began taking ½ tube of
Oscillococcinum daily in the hope of avoiding catching the illness.  For several
days, this seemed to work.  Then, when the patient ran out of the remedy, one
day’s dose was skipped, and the next day, the patient developed the diarrheal
illness.



   After this experience, the above patient began using the Oscillococcinum
every day, and gradually decreased the amount used until only a few pellets were
used each day.  From the time the daily use of the Oscillococcinum remedy
began, the patient abruptly stopped having these gastrointestinal flus.  Twice,
other family members had infections, one involving diarrhea, the other
involving vomiting, and in neither case did the patient get sick.  This
resistance to
a known exposure to a gastrointestinal illness had never occurred during the
past 15 years, according to this patient. The recorded average rate of
gastrointestinal illnesses was 0.5 per month during the 3 previous years during
the
same seasons of the year (June-November).  In contrast, since the daily doses of
Oscillococcinum have begun, 6 months have gone by without the patient
experiencing a single one of these illnesses.

   A second patient has had a more limited experience that also supports this
effect.  This patient was having diarrheal illnesses of probable viral origin
during the previous 2 years at a rate of 0.38 per month (records show the
seasonal rate for July to November in the previous 2 years was 0.3).  Since he
began a daily small dose of Boiron Oscillococcinum, he has had no more diarrheal
illnesses for 5 months from July-November of 2004.

   For a third person, the data is even more limited because of the shorter
term records, but still supportive of this preventive effect.  This patient had
two severe stomach flus within a 3 month period before beginning
Oscillococcinum.  During the following 4 months, while taking Oscillococcinum
almost daily,
no gastrointestinal or other flus have occurred.  No side effects have been
experienced by any of the patients from the daily use of the Oscillococcinum.

Dosage Issues For Boiron Oscillococcinum

   There is a widespread belief that harm will come of using homeopathic
remedies on a daily basis.  This comes from experiences of the use of
“nosode”
remedies, the most common type.  These nosode remedies are very small doses of a
substance that in larger amounts, have the potential to cause the sort of
symptoms that the small doses of it are meant to treat.  In contrast,
Oscillococcinum is a “sarcode” remedy, and this caution does not apply (11).
Sarcode
remedies come from healthy tissue or a health promoting substance that the
patient may be deficient in, and daily dosing is considered to be safe.  So, the
fact that Boiron Oscillococcinum is a sarcode remedy, supports the experiences
of
the above patients, and the view that there is no reason at this time to
believe that daily use could be harmful (though it should be remembered that
this
is not the type of use that the manufacturer recommends nor the FDA has
approved, due to lack of research).

   Some may find that alternate day or less frequent doses might work.
However, the anecdote given above, with the patient being exposed to an illness
and
getting sick immediately after skipping one day of the Boiron Oscillococcinum,
might suggest there is the potential that it might not always work if less
than daily doses are used.  Increasing the dosage frequency when one knows one
is being exposed is an option, however, often one is exposed before one can
possibly know.  One of the studies of Oscillococcinum showed a better result in
flu symptom reduction, the sooner the remedy was begun (10). This indirectly
might be viewed as tending to support the idea presented here that daily use may
be better, since this ensures the early use of the remedy in the course of an
exposure to a virus, as well as prior to exposure.  But it should be
repeated, that this is not the view of the researchers or the manufacturers,
since
there are no controlled studies regarding daily use for prevention.

   The best amount to use each day is uncertain, but it seems to make sense,
on general principles, to use the least amount that is effective. For some,
cost might be a problem if larger doses were taken daily.  Taking a few pellets
each day means each vial will last as long as 2 weeks or more.  The experiences
of the above patients, was that 2-10 pellets daily was sufficient, but
further research is necessary.  In order to maximize the effect of the smaller
dose,
it might be helpful to have the pellets remain dissolving in the mouth for
some time (e.g., 10-15 minutes), and be sure not to eat or drink anything other
than water very near the time one takes it. It may be that some people might
require larger doses than others, or even twice daily doses, due to coexisting
conditions or the general state of their immune system.

Relevance for Influenza, Colds and Other Influenza-like Illnesses

   Since these observations were made between June and November, it is
unlikely that the above patients were exposed to influenza. However, it might be
supposed, based on the popular use of Oscillococcinum for prophylaxis in France
mentioned above, that it may work in the same way for the prevention of
influenza as it has for gastointestinal flus, as discussed here. It may be that
Oscillococcinum works against flu-like illnesses because birds, like ducks, are
susceptible to the same illnesses and there is some factor transferred via this
duck-derived remedy.  In this case, since West Nile virus and bird flu are also
found in birds, one might speculate that there might be some protection from
those viruses.  Of course, this is purely theoretical and one should still take
other precautions to protect oneself from West Nile virus and other viruses.

   It should also be mentioned that an experience of the first patient using
Oscillococcinum for prevention as described above suggests that the protective
effect of Boiron Oscillococcinum does not apply to colds, since this patient
got a cold when on daily Oscillococcinum alone. Thus, although the manner in
which Oscillococcinum works is unknown, the observation that it did not protect
against a cold might be a clue to its mechanism of action.  It supports the
view that it does not work by a general upregulation of the immune system so
that all viruses are protected against, but rather, Oscillococcinum only works
against certain types of viruses.  Perhaps, this occurs in a manner somewhat
similar to a vaccination.  Of course, its means of action must differ
significantly from standard vaccination, for several reasons, including the
apparent need
for frequent doses in order to prevent the illnesses observed here.

Conclusions

   For those who are healthy and who only occasionally have a cold or flu,
daily or alternate day use of a preventive remedy is probably unnecessary.
However, healthy people might decide to use the preventive remedies when a
contact
is ill or during certain seasons of the year, or when an upcoming event makes
their staying well especially important.

   But for those who have frequent colds or flus, or who may suffer severe
consequences from them due to other medical conditions, this information has
great potential, if research bears it out.  The reduction in suffering due to
the
illnesses and their complications, not to mention the economic savings due to
lost work, could be enormous.  Readers, especially doctors, researchers, or
patients with  careful records of their illnesses and other factors, who try
either or both of these approaches, are encouraged to send accounts of their
experiences to the Editor (PO Box 70166, Pasadena, CA or email:
jcwat101@...).
  Perhaps these can be compiled and used as a basis to encourage scientific
studies of these strategies in the future.

   It should be remembered that the remedies may tend to work less well under
some circumstances, such as when the user is under stressful or sleep-deprived
conditions.  However, in the cases discussed here, there were periods of at
least moderate stress and occasional mild sleep deprivation, and the patients
still did not get sick when the appropriate preventative strategy was being
used.

   Based on this limited anecdotal data, neither preventive strategy alone
seems to be sufficient to protect against colds and flus of all types.  It may
be
that for some patients the optimal strategy would be to use both the very low
dose sublingual and intranasal alpha interferon and the Boiron
Oscillococcinum. The patient with chronic fatigue syndrome described above,
who’s
experiences were most extensive, used both preventive strategies during the
majority of
the past 6 months and found no problem with combining the two approaches. It
is possible that since both approaches theoretically could protect against the
most serious influenza-like infections, that this combination approach will be
doubly protective against these more serious illnesses.  However, until more
data verifies their effectiveness, patients using these new strategies should
probably also use standard prevention methods for influenza and other viruses,
when available.  And despite what would seem to be a low potential for harm,
research is needed to be certain that the benefits outweigh any unforeseen
side effects in various patient groups.

References

(1) Fauci, AS, and others, editors: 1997. Harrison’s Principles of Internal
Medicine.  McGraw Hill.
(2) Hayden FG, Albrecht JK, Kaiser DL, Gwaltney JM Jr: Prevention of natural
colds by contact prophylaxis with intranasal alpha 2-interferon. N Engl J Med
1986;314:71–5.

(3) Douglas RM, Moore BW, Miles HB, et al: Prophylactic efficacy of
intranasal alpha 2-interferon against rhinovirus infections in the family
setting. N
Engl J Med 1986;314:65–70.

(4) Waterhouse, JC:  A Cold Remedy that Really Works? CISRA’s Synergy Health
Newsletter, Update #2, January 10, 2000, Chronic Illness Support and Research
Association, P.O. Box 70166, Pasadena, CA (www.members.aol.com/SynergyHN)
(5) Locke, A: The Family Guide to Homeopathy: Symptoms and Natural Solutions.
1989. Prentice Hall Press, New York, NY.

(6) www.boiron.com and the studies referred to at the site.

(7) Casanova, P. et al. The evaluation of 100 randomized observations of
oscillococcinum/placebo in the influenza syndrome, Manuscript available from
Boiron. 1983.

(8) Casanova, P. Gerard, R. A study of the therapeutic action of
oscillococcinum in influenzal syndromes. Manuscript available from Boiron. 1985.

(9) Ferley, JP, Zmirou D, D’Adhemar, Balducci, F: A controlled evaluation of
a homeopathic preparation in the treatment of influenza-like syndromes. Br. J.
Clin. Pharmac. 1989;27:329-335.
(10) Papp R, Schuback G, Beck E, Burkard G, Bengel J, Lehrl S, Belon P.
Oscillococcinum in patients with influenza-like syndromes:  A placebo-controlled
double-blind evaluation. Br. Homeopathic J. 1998;87:69-76.

(11) Dr. B. Brewitt, researcher on the use of homeopathic doses of growth
hormone (www.biomedcomm.com); describing daily use of sarcode remedies on
“Your
Own Health and Fitness” Radio Program, see kpfa.org’s radio archives.



*Oscillococcinum is a registered trademark of Boiron Inc., Newton Square,
Pennsylvania.





(Disclaimer:  This material is intended for information only and is not
medical advice. Neither CISRA nor the author receive funding from any doctor,
lab
or manufacturer of any medication or associated products.)

You are encouraged to forward this email to others who you think might be
interested in the information.  Anyone who would like to begin or stop receiving
CISRA’s free email updates and newsletters, should send their request to
jcwat101@.... Also send any email address changes to jcwat101@...


All issues of the newsletter, as well as updates and previews are available
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HREF="http://members.aol.com/SynergyHN/">www.members.aol.com/SynergyHN</A>.  For
those who would like to
receive copies of the newsletter by regular mail, see information on the web
site for how to subscribe to the newsletter or order back issues.




[Non-text portions of this message have been removed]

I'm so glad to hear your son is doing that well! I have had ups and
downs too, but there always seems to be a light at the end of the
tunnel. Last year in November my lung functions were down to 72%. After
a round of strong antibiotics and about a month of rehab I was up to
102%! It was a great accomplishment for me. I have slipped back down to
89% since this November but the sinus surgery I had yesterday (which I
have discovered is easier the second time) should help improve that. I
will be praying that your son's health continues to improve! And Samie
don't give up hope on your brother I am praying for him! I've been there
and back before



-----Original Message-----
From: Tammy Lynn [mailto:daisymaisysue@...]
Sent: Tuesday, March 01, 2005 5:49 PM
To: cysticfibrosissupport@yahoogroups.com
Subject: Re: [Cystic Fibrosis Support] New Here



Hi Samie. My son has had pneumonia many, many times. He is only 11 but
we have known about the cf since he was 3. At one point his lung
function was only 54%, that was a couple of years ago. He went into the
hospital again and has steadily improved. We just went to clinic last
week and his capacity is now at 98%. We have brought him home many times
on iv antibiotics and gotten him through the tough times. One thing I
have learned is try and not worry to much, and take it a day at a time.
Hopefully your brother will be just fine but not knowing his
circumstances all I can do is wish your brother well and a speedy
recovery. I know it is hard but try and be strong for his sake. CF sucks
but its not a death sentance anymore. Hope and pray.

Samantha <oompaloompa0813@...> wrote:
Hello everyon.  I am Samie.  My brother is 17 and has Cystic
Fibrosis.  He is currently in the hospital, and I am getting scared
this is his final time.  Can anyone tell me how to tell if a kid with
CF has Pneumonia?  My brother's temperature, with Motrin, is
102...and he almost passed out with his PFTs.  He is on oxygen.




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[Non-text portions of this message have been removed]






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[Non-text portions of this message have been removed]

Everyone you are e-mailing understands your situation completely. Just pray
and good things will happen.


[Non-text portions of this message have been removed]

My brother almost past out during the PFTs...we don't know what the
current lung functions are.  All we know is that last time, when he
was as well as he could get, his trapping was in the 70s, and his
functions in the 60s or 70s.  The nurse told my brother(jason) just
to stop trying...then emergency oxygen was called when he
got...lightheaded?  I guess you would call it.  He is my baby
brother, so I worry about him.  I want to have my wedding
before...you know.  I am only 18...does anyone else know the hell it
is to be in this kind of family?


--- In cysticfibrosissupport@yahoogroups.com, Tammy Lynn
<daisymaisysue@y...> wrote:
> Hi Samie. My son has had pneumonia many, many times. He is only 11
but we have known about the cf since he was 3. At one point his lung
function was only 54%, that was a couple of years ago. He went into
the hospital again and has steadily improved. We just went to clinic
last week and his capacity is now at 98%. We have brought him home
many times on iv antibiotics and gotten him through the tough times.
One thing I have learned is try and not worry to much, and take it a
day at a time. Hopefully your brother will be just fine but not
knowing his circumstances all I can do is wish your brother well and
a speedy recovery. I know it is hard but try and be strong for his
sake. CF sucks but its not a death sentance anymore. Hope and pray.
>
> Samantha <oompaloompa0813@y...> wrote:
> Hello everyon.  I am Samie.  My brother is 17 and has Cystic
> Fibrosis.  He is currently in the hospital, and I am getting scared
> this is his final time.  Can anyone tell me how to tell if a kid
with
> CF has Pneumonia?  My brother's temperature, with Motrin, is
> 102...and he almost passed out with his PFTs.  He is on oxygen.
>
>
>
>
> Yahoo! Groups SponsorADVERTISEMENT
>
>
> ---------------------------------
> Yahoo! Groups Links
>
>    To visit your group on the web, go to:
> http://groups.yahoo.com/group/cysticfibrosissupport/
>
>    To unsubscribe from this group, send an email to:
> cysticfibrosissupport-unsubscribe@yahoogroups.com
>
>    Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.
>
>
>
>
> ---------------------------------
> Do you Yahoo!?
>  Yahoo! Sports -  Sign up for Fantasy Baseball.
>
> [Non-text portions of this message have been removed]

Hi Samie. My son has had pneumonia many, many times. He is only 11 but we have
known about the cf since he was 3. At one point his lung function was only 54%,
that was a couple of years ago. He went into the hospital again and has steadily
improved. We just went to clinic last week and his capacity is now at 98%. We
have brought him home many times on iv antibiotics and gotten him through the
tough times. One thing I have learned is try and not worry to much, and take it
a day at a time. Hopefully your brother will be just fine but not knowing his
circumstances all I can do is wish your brother well and a speedy recovery. I
know it is hard but try and be strong for his sake. CF sucks but its not a death
sentance anymore. Hope and pray.

Samantha <oompaloompa0813@...> wrote:
Hello everyon.  I am Samie.  My brother is 17 and has Cystic
Fibrosis.  He is currently in the hospital, and I am getting scared
this is his final time.  Can anyone tell me how to tell if a kid with
CF has Pneumonia?  My brother's temperature, with Motrin, is
102...and he almost passed out with his PFTs.  He is on oxygen.




Yahoo! Groups SponsorADVERTISEMENT


---------------------------------
Yahoo! Groups Links

    To visit your group on the web, go to:
http://groups.yahoo.com/group/cysticfibrosissupport/

    To unsubscribe from this group, send an email to:
cysticfibrosissupport-unsubscribe@yahoogroups.com

    Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.




---------------------------------
Do you Yahoo!?
  Yahoo! Sports -  Sign up for Fantasy Baseball.

[Non-text portions of this message have been removed]

My Daughter who is 3 was in the  hospital last  year with  pneumonia and came
out fine. She was in VERY bad shape when we bought her in and  her pulsox was
barely hitting the 90's. Her fever was clean over 102. If I am  correct CF
people develop Pneumonia fairly regularly as that is the result of  the mucus
being built up in the lungs and developing infection. I am a new  parent to this
though only a couple of years and there will be many more people  with far
more knowledge to me who will answer this for you. Good Luck and we  will pray
for your Brother.


[Non-text portions of this message have been removed]

Hello everyon.  I am Samie.  My brother is 17 and has Cystic
Fibrosis.  He is currently in the hospital, and I am getting scared
this is his final time.  Can anyone tell me how to tell if a kid with
CF has Pneumonia?  My brother's temperature, with Motrin, is
102...and he almost passed out with his PFTs.  He is on oxygen.

Hi everyone,

I'm the owner of a new Yahoo! group celebrating people who have
various illnesses and conditions, their lives and their achievements.
My new group will have a special focus on the people behind the
condition and their lives. We will cover all people who have a
disability or simply have a different appearance to other people. This
group is also intended to be an educational group with the aim of
reducing discrimination and encouraging acceptance of these people.

The problem is that I don't know of a single website specialising in
providing news about people with different conditions etc and I
wondered if anyone here could help me?

I also wondered if anyone here would like to give us an insight into
what it is like to have cystic fibrosis/know someone with cystic
fibrosis and
help educate the general public who might not join a specialist group
like this?

If you can help in anyway, please visit us at:

http://health.groups.yahoo.com/group/Friends_of_Precious_People/

I will also be delighted to link back to this group :)

Chris: Owner Friends of Precious People.

Hello Everyone,

I just wanted to announce the launch of  "Jonathan's Candle". It is
being released today by White Lily Candles. All profit on the candle
will go towards Jonathan's Fund for a new Liver.

You can order the candle by going to www.JonathanArchieFund.com and
clicking on the link on the main page. The candle is under Helping
Hands.

It is a quality soy candle, color is Purple, and the scent is grape
in an 8 oz jelly jar. There is a 2-week delivery; this is due to the
fact that all candles are poured when ordered.

Jon is a grape a'holic.

Please drop by and take a look. And pass the info around to everyone
you know

Hello!
There are so many groups for CF now. I recognize some of the names I
see here....Grandma Bev, Ron HELLO!
I am writing to give the link for my website for CF Organizers. The
site is
www.thelittleacorn.net

My daughter Paige has CF and I created the journals for her, and then
others...The Little Acorn grew from there!

Thanks guys!
Erin
Mom to Paige 5 wcf, and KM 10 wocf, and owner of The Little Acorn
journals for CF, and others.
www.thelittleacorn.net
thelittleacorn1@...

This group is not going on its 3rd year,and have been active over the
time the group been around..So if your disabled and looking for
support and understand then this group is for you...There are devotee
but only looking for people that see us as human being and not just a
fetish thing..To join you MUST have information on profile to
join...thanks




http://groups.yahoo.com/group/INTIMACYFORTHEDISABLED/

Grandmom Bev is also on Cystic-L.  What is Cystic-L?  It's an Email
Community!  It's a Website!

####################################################

CYSTIC-L is a free email service dedicated to the exchange of information
and support specific to cystic fibrosis. Since 1994, CYSTIC-L has been
sharing both casual banter about the varied impact that CF has on our
lives, as well as technical and medical information exchanges that help us
to overcome the more unpleasant factors that this silly little gene imposes
upon us.  There are over 600 list subscribers sending a total of around
20-60 messages per day; a digest option is available which compiles
messages and distributes them periodically during the day. Members include
people with CF and those who share their lives: medical professionals,
scientists, researchers, parents, grandparents, spouses, siblings, friends
and significant others.

To give us a try send the following line in the *body* of an email to
LISTSERV@...

SUBSCRIBE CYSTIC-L Your-first-name Your-last-name

Note: Listserv will send you a confirmation request for every command you
send to it.   Your command will not take effect unless you respond to the
confirmation request (so be sure to wait a couple of minutes to receive and
respond to the confirmation request).

#######################################################

Ok, so you know about the vibrant on-line community available on the
Cystic-L mailing list.  But are you taking advantage of the OTHER FREE
BENEFITS available to Cystic-L subscribers?  Are you using *these* resources:

       The Cystic-L Archives - all messages from our beginning in 1994 right
up to the message distributed just a second ago!  Sure, you can browse the
messages chronologically by date, but why not use the powerful search
engine?  Searches can easily be made not only on keywords in the body of
messages, but also on address of sender; before, after, or between
specified dates; keywords in the Subject line of messages -- or any
combination of these items!!!!

       The Cystic-L Handbook - a HUGE amount of information distilled from
Cystic-L posts, arranged by subject.  Not only medical stuff, but how-to
tips, CF humor, and lots of pointers to additional sources of
information.  Don't stop at the first Table of Contents - keep drilling
down, this is a very DEEP well of material!

       The CF Shop - CF-related merchandise (no, not medicines and
equipment!) - it shows you what's available and where to get it.  The
bookstore in the CF Shop contains the largest list of CF books anywhere
(some with reviews/comments by Cystic-L subscribers, some written by
Cystic-L subscribers).

       The Cystic-L Photo Archives - 3 main sections: the largest section
called "CF Community", "Parents With CF" (that's right -- they have CF
*and* they have children!), and "Memorials to Those We've Lost".  Be sure
to click on the thumbnail photos to see larger photos and more details
about the person!

       Want Research News?  How about constantly updated newswire stories
about CF?  Or maybe you want cystic fibrosis news from current medical and
healthcare journals?  You can get it all with a click!

Entrance to each of these resources (and more!) is available with a single
click on the Cystic-L homepage.  How do you get to the homepage?  Just type
the secret password into your browser and you're there!  [Huh?  You don't
know the password?  Sure you do!!!  It's: Cystic-L -- that's all, just type
Cystic-L then hit the ENTER key, and your browser will take you there!]

At 08:48 PM 11/30/04 -0800, you wrote:

>Hi Nicole,
>
>Your talking about GrandMOMBev, she is on cfparents group.
>
>
>Robin A, IL

--
Check out the CYSTIC-L Homepage at http://www.Cystic-L.org
________________________________________________________________________
Ron Trueworthy . . . . . Your CYSTIC-L Host . . . . . . Ron@...

Hi Nicole,

Your talking about GrandMOMBev, she is on cfparents group.


Robin A, IL

---------------------------------
Do you Yahoo!?
  The all-new My Yahoo! � Get yours free!

[Non-text portions of this message have been removed]

I was On a group Like this a few years back and was wondering if
there was a nice lady from Florida in this Group I forgot her name
but she was a grandma and Very nice!Oh I think it was Bev, Bev was
her name is she here!I have a 8 year old son with Cf. I also Have a
12 year old son and 10 year old daughter both healthy.well ihope to
be learning more about this group and maybe making some friends along
the way.talk soon from Nikki

Thank you Caryn,

Kelly


Caryn Silliman <ilive4candytoo@...> wrote:
When I was 3 I was diagnosed with celiac Disease and I followed the diet
for about 6 months but it didn't' help and CF was the next thing I was
tested for. I had the same symptoms, coughing fits and light colored
smelly stools, you should look into CF some more. Hope that helps!

caryn





-----Original Message-----
From: kellykebby [mailto:kellykebby@...]
Sent: Friday, November 19, 2004 2:10 AM
To: cysticfibrosissupport@yahoogroups.com
Subject: [Cystic Fibrosis Support] hi, question




Hi, I was wondering. My four year old son has allergies and gets
hives, has a cough often, sometimes to the point of throwing up. I
know he is allergic to dust but he also has salty tasting sweat and
he quite often has light colored stool. I am thinking that maybe he
has cystic fibrosis. What should I do now? He is a very good size,
not undernourished. Please help. I am confused.

Also, those of you with CF? Have you tried eliminating the five most
allergenic foods in the US? Wheat, corn, milk, tomatoes, and eggs?
Some of the symptoms of CF seem to mimic Celiac Disease. Have any of
you ever tried the Gerson therapy? (diet). I know they say CF is a
genetic disease, but perhaps what people are getting is a genetic
intolerance of certain foods.

Please respond about my son. If you can let me know the main symptoms
I can see if he has them. Thank you, Kelly in Pa.








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[Non-text portions of this message have been removed]


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    Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



[Non-text portions of this message have been removed]

When I was 3 I was diagnosed with celiac Disease and I followed the diet
for about 6 months but it didn't' help and CF was the next thing I was
tested for. I had the same symptoms, coughing fits and light colored
smelly stools, you should look into CF some more. Hope that helps!

caryn





-----Original Message-----
From: kellykebby [mailto:kellykebby@...]
Sent: Friday, November 19, 2004 2:10 AM
To: cysticfibrosissupport@yahoogroups.com
Subject: [Cystic Fibrosis Support] hi, question




Hi, I was wondering. My four year old son has allergies and gets
hives, has a cough often, sometimes to the point of throwing up. I
know he is allergic to dust but he also has salty tasting sweat and
he quite often has light colored stool. I am thinking that maybe he
has cystic fibrosis. What should I do now? He is a very good size,
not undernourished. Please help. I am confused.

Also, those of you with CF? Have you tried eliminating the five most
allergenic foods in the US? Wheat, corn, milk, tomatoes, and eggs?
Some of the symptoms of CF seem to mimic Celiac Disease. Have any of
you ever tried the Gerson therapy? (diet). I know they say CF is a
genetic disease, but perhaps what people are getting is a genetic
intolerance of certain foods.

Please respond about my son. If you can let me know the main symptoms
I can see if he has them. Thank you, Kelly in Pa.








Yahoo! Groups Sponsor



ADVERTISEMENT

<http://us.ard.yahoo.com/SIG=12c9a672c/M=298184.5584357.6650215.3001176/
D=grphealth/S=1705061659:HM/EXP=1100934641/A=2434971/R=0/SIG=11eeoolb0/*
http:/www.netflix.com/Default?mqso=60185400> click here



<http://us.adserver.yahoo.com/l?M=298184.5584357.6650215.3001176/D=grphe
alth/S=:HM/A=2434971/rand=211897976>



   _____

Yahoo! Groups Links

*         To visit your group on the web, go to:
http://groups.yahoo.com/group/cysticfibrosissupport/


*         To unsubscribe from this group, send an email to:
cysticfibrosissupport-unsubscribe@yahoogroups.com
<mailto:cysticfibrosissupport-unsubscribe@yahoogroups.com?subject=Unsubs
cribe>


*         Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service <http://docs.yahoo.com/info/terms/> .



[Non-text portions of this message have been removed]

Hi, I was wondering. My four year old son has allergies and gets
hives, has a cough often, sometimes to the point of throwing up. I
know he is allergic to dust but he also has salty tasting sweat and
he quite often has light colored stool. I am thinking that maybe he
has cystic fibrosis. What should I do now? He is a very good size,
not undernourished. Please help. I am confused.

Also, those of you with CF? Have you tried eliminating the five most
allergenic foods in the US? Wheat, corn, milk, tomatoes, and eggs?
Some of the symptoms of CF seem to mimic Celiac Disease. Have any of
you ever tried the Gerson therapy? (diet). I know they say CF is a
genetic disease, but perhaps what people are getting is a genetic
intolerance of certain foods.

Please respond about my son. If you can let me know the main symptoms
I can see if he has them. Thank you, Kelly in Pa.

I am an 18 yofwcf, and I wasn't diagnosed until I was 17, last year. They
couldn't get enough sweat for the sweat test 5 different times for me, and I was
  diagnosed through an ambry genetic test.

~ Alyssa

~ aLizA chAnNa ~

"all the world is a narrow  bridge. the important thing is not to be afraid!"
~ rebbe nachman of  bratslav

"if i am not for myself, who will be for me? if i am only  for myself, what
am i? and if not now, when?" ~ pirke  avos


[Non-text portions of this message have been removed]

I don't think there is any specific amount of time that you have to wait
between tests.  I would say if they try it a second time and it does not work,
that you tell them to do a blood test instead.  They can diagnose with a blood
test also.  Good luck!
Heather


[Non-text portions of this message have been removed]

Hi My boy (5yrs) had a sweat tested yesterday and they couldn't get enough sweat
and they tested him twice that day. Did anyone else have that happen to them?
How long did you have to wait to retest? Did they get enough the second time? We
live almost 2hrs away from the only hospital where it can be done so I was so
upset when they couldn't enough. I just wanted this done and over with and now
it seems like it will drag out. Thanks. Kim Ann
ktwirls@...<mailto:ktwirls@...>


[Non-text portions of this message have been removed]

Hi there.  I have been a member for a while but thought instead of
simply "lurking", I would actually post something.

On one of our first dates, Robert told me that he loved me but he
knew as soon as he told me something, he knew he would lose me but he
just couldn't tell me.  Then he said, well, I have a disease.  I told
him not to worry, I already knew he had asthma and diabetes and I
could deal with that, no problem.  Then he told me he had a fatal
disease.  All I could think of was AIDS because at that time, that
was the big thing.  So I held my breath and asked him if I or anyone
else could "catch it" from him.  He laughed and said no.  I told him
that in that case, no problem, we'll deal with it.  Later that night,
I finally got him to tell me he had CF.  I was so relieved it wasn't
AIDS that all I could do is hug him and tell him we would deal with
it.  As soon as I got home that night, I opened up the encyclopedia
to see what CF really was and I really freaked out.  Of course, the
encyclopedia was really old and was using old information.  It
indicated that it was a childhood disease, etc. etc.  So I called
Robert and told him what I found and he laughed at me!  Then, he
explained more to me and also explained that they had lost his only
sister when he was only 6 and she was 8 from CF.  From then on out, I
have strived to find out more and more about CF.

We too no longer take life for granted.  When Robert and I first met,
he could do just about anything he wanted.  Now, he can only do about
� of it and it really drives him crazy.  He is so used to be
independent and he is having such a rough time depending on others
for help (especially me).

He is on the list at Johns Hopkins in Baltimore, MD for a double lung
transplant and he is on IVs about every 3 months.  When we first met,
he went into the hospital twice a year for "tune-ups".  I always
thought that was so funny but it really is like a tune-up for a
vehicle!  Now, he does IVs at home and even goes to work with them
and does yard work.  He uses the IV balls that fit into his pants or
jacket pocket or he wears a "fanny pack" and has the IV go right up
his sleeve.

I enjoy being a part of this list because I have found that it is so
much better knowing you are not alone in what you are going through
and have lots of new ideas on who is doing what and how you might
want to try something different (with your doctor's OK, of course).

As you can see, I could go on and on but I'll sign off now � I was
just so excited that I had SOOOO much in common with Shan and Kel
(and probably lots of others out there!)

I am happy to provide other info like what kinds of procedures, meds,
daily routine Robert has etc etc�.

Tammy (28 non-Cfer), wife to Robert (35 Cfer) since 1997 but together
since 1994 and mom to Jessica (adopted at birth, age 4)

Hi,
    I am a 22 yr old w/CF. I am currently getting my Masters is
genetic counseling. For those of you who aren't familiar with
genetic counseling, it is a combination of therapy and genetics. For
example, relatives of those with CF may see a genetic counselor
before pregnancy to get carrier testing. Anyway, one of the other
girls in the program is doing her thesis on CF and interpersonal
relationships, and she is looking for people approx. between 20-30
to participate in the study. It would entail a one hour, in person,
interview. If anyone would be willing/interested in participating be
e mail me @ mar_md@...
    THanks!
        Mar

Kerry,

Have you had your son tested yet? You really need a blood test as sweat tests
are inconclusive. God America needs to review it's health policy. In Australia
your son would've been tested immediately no matter where he lives and we have
some pretty remote areas. I don't think people really understand what it's like
to live in a remote area until they come and live in Australia's outback/desert
communities. I think it's appalling that you have had to wait so long for a
diagnosis. It's more than appalling, it's medically negligent. You fight to get
a blood test for you son because he only has you and the sooner he is diagnosed,
the sooner he can get proper treatment. And handing out enzymes without getting
an immediate diagnosis. What kind of hare-brained doctor does that? I think it's
a disgrace but it is by no means your fault. The system has failed you Kerry and
it's failed your little boy. Let us know how things turn out won't you?
Jo




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[Non-text portions of this message have been removed]