Re: Digest Number 81

March 23, 1999

Aloha, Everyone,

Just a few thoughts--I haven't read all of the recent lists, so excuse me if

I've missed something.

I have been wondering for some time about many of the same things

Clements thinks about. why do we all have the same, yet different symptoms?

I have wondered how many people have followed my pattern--CFS symptoms

first, followed years later by a lessening of those symptoms and the

development of the Fibro symptoms?

I had all the flu symptoms, including severe fatigue and headaches, etc.,

but not the joint/muscle pain. That seemed to come on gradually. I noticed

that I would be stiff and sore after sitting on the floor and trying to get

up, for instance. And then it rather suddenly got much worse, so that I

couldn't ignore it anymore.

I never seem to get colds, regular 'flus, sore throats, etc. anymore (the

last was a strep throat 2 years ago). I do still have headaches, but not as

often or as bad. The fatigue is not as bone-crushing--I'm just tired.

More like 's NMH symptoms. The cognitive problems vary--some days my

mind feels clear, others foggy. Also, when the pain is moderate, I seem to

have more energy. The less pain, the less energy, until the pain gets

severe, of course. which is also weird.

One person mentioned the film " Lorenzo's Oil " . I don't find that so

frightening as I do hopeful. I often wonder why I can't figure out what

causes this disease, having had it for more than 20 years, the way the

couple in " Lorenzo " did.....

odds and ends: my finger nails are very strong, never any ridges, rarely

break and grow very fast, just like my mother's, who is healthy. But I have

lost most of my fingerprints...and I always have the uvular crescent,

although it gets brighter when I feel sicker.

I found " Mike's " letter about his wife and marriage really touching. what a

lovely couple. It's really rough with this disease to stay married. They

should start a counseling service for the rest of us!

Sorry this is so long.

Love and prayers,

Teeza

I am going to see if the doctor will let me try interferon--then we can

compare notes. I'm a guinea pig already, anyway!

April 26, 1999

In a message dated 4/26/99 12:02:14 AM Pacific Daylight Time,

onelist writes:

<< > From: Roman <ChrisRoman@...>

> >>

Chris--You are a delightful poet and an inspiration to all of those wonderful

parents out there who are struggling to help their children. Take one day at

a time. Note the positives in the day and don't dwell on the negatives.

Most things pass, only to be replaced with new problems, as well as joys.

Just remind yourself that you are doing the best that you can--you are

keeping yourself informed, you have made yourself a part of a support

network, and hopefully, you are making time for yourself and your spouse.

Hang in there.

--Dr. Barbara Freedman

June 27, 1999

cheryl wrote about pestidies and their connection to:

include brain cancer,neurological disorders, immune

system dysfunction,asthma, allergies, infertility,

child behavioral disorders including learning

disabilities,mental retardation, hyperactivity,

and ADD.

=======

i read this list as i have cfids and mcs, because i

noted that dr. klimas, who my internist respects, was

working with dr. goldberg on mat. i learn from y'all

and my chronic immune activation started as an adult.

i mentioned earlier using cromolyn sodium to

cut down histamine release, i was unclear what

i used it for, it was not for food, i follow

a fanatic diet without gluten etc.. instead

cromolyn sodium seems to calm down a bit the

chemical exposures when i get inadvertently hit.

regarding pesticides: they are my worst symptom

trigger, causing swollen glands, killer sore,

throat, ear pain, exhaustion and total brain fog.

herbicides pack an extra punch, throwing in

diarrhea and migraine as well. total torture.

whether this causes a problem or helps perpetuate

it, varies of course by individual, but i think it

makes sense to avoid pesticides, including herbicides,

for those of us with besieged immune systems.

I attended the LDA conference on endocrine

disruption on february 24, 1999 in atlanta.

i learned how endocrine disruption has major

effects on brain development in the fetus,

in part by messing up the thyroid. a tape

was made by vanderbilt university and my

env. group, and it is available from my

env. group for $30 for 6 hours of talks.

contact me if you are interested.

please avoid pesticides because they

are biocides and affect humans too!

nancy mcfadden, nashville tennessee

mcs/cfids 70% recovered,

looking for the last 30%

June 28, 1999

Hi ,

Although my son is now a patient of Dr. Goldbergs,

we were previously working with environmental

medicine. My son does have a previous diagnosis

of MCS. We still have environmental accomodations

as part of his IEP, because he has such extreme

reactions. The worst for him is pesticides and

solvents, which make him extremely angry and out

of control. I have found that his tolerance is

improving after adding the kutapressin to his

treatment. The infections play a major role in

his ability to tolerate unavoidable exposures.

When at his worst, he cannot even be around a

child with laundry soap and fabric softener fumes

on their clothes, let alone adults with perfume

products on.

Cheryl

March 21, 2000

CK:

Then I wonder why the Doc prescribed this for ?? He asked us what would

we like to see in as far as improving behaviors, and we said we'd like

to see the repetitive stuff and his acitivity calm

down...interesting......everyone here says that won't help....I thought a

drug as strong as this one should help with that.....and the sleeping all

night is supposed to happen too.

This is really interesting stuff to ask the Doc tomorrow.....thanks, guys!

March 21, 2000

MB:

Oh, don't worry about keeping a log...both me and 's teacher keep a daily

record.....the first thing I look at is the spiral notebook in 's

backpack telling me what kind of day he had....I, in turn, write back to

teach telling her what kind of evening WE HAD....and so on and so forth....

Yeah, it's true that kids especially boys, and with AD/HD, behave better with

Dad than Mom.....in the little booklet we were handed at the doc's office

when was first diagnosed, it even said it in there....I quickly gave to

DH and pointed it out to him.....

I guess I'm just the impatient type....when you've been trying all diff. meds

for over a year and nothing works, you can lose your faith real

quickly.....and I " ve got two of 's brothers to try to give attention

too.....we can't all be focused on just ....although we always are,

because of his behaviors!

Thanks, also, to Joan, and everyone else for their advice and

comments....will let you know what Doc says tomorrow.

March 21, 2000

.....and I " ve got two of 's brothers to try to give attention

too.....we can't all be focused on just ....although we always are,

because of his behaviors!

,

I certainly understand this. We have 5, including Matt. Before he was

diagnosed, I remember thinking that if we dont' get his behavior under

control, I may look at foster care for him. I had 4 other children to

raise, and he took 200% of my time. (and my energy, and he was only 4).

One more plug for Naltrexone-----it has helped greatly with repetitive

behavior-but once again, it allows us to do things that help. As it was

explained to me-the behavior causes a release of opiods-more pleasurable

and stronger than an orgasm- and nothing we could do externally could be

stronger, more pleasurable, or more negative than the positive, response

of that opiod rush. So, the naltrexone blocks the chemical rush, and

more behavior modification stuff can take place.

Keep us updated.

S

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March 21, 2000

> Then I wonder why the Doc prescribed this for

Some of Ian's repetitive behaviors have gone, but not all. For that we have

the zoloft, but even that's not working.

Sometimes the doctor will prescribe to see what will happen. No one can

really predict for sure.

CK,

Mom to Ian (2/89),

(9/90),

and Rose (6/94)

March 23, 2000

Dear Jelena:

It is very difficult for both the patient and spouse during these

times. I do not have any specific statistics, but the divorce rate, per

HCV couple has been shown to be higher then the general public. I am

sure there are other members that can also attest to this.

From my own experiences, (my wife has the HCV), it has been

difficult for both of us. You are never sure when to do more, and when

to do less. I also know the patient, because they are feeling the

medications, and also the physical and emotional problems of the HCV,

also have ups and downs. Both of you are living lives that are being

dictated to by an illness.

Speaking for myself, I know that, when I want to do something, I

have to see how my wife is feeling. I also know that when she can not

sleep, I am also kept awake. When my wife has nausea, I don't know

whether to give sympathy, which may only focus more on her illness when

she is already feeling bad. If you don't help, then you can also be the

villain.

If we go out to eat, although she may tell me to choose, I do not

know what she can tolerate, or wants. If I want to plan something for a

week ahead, it is a problem because I do not know how she'll feel. She

even complains that we do not have sex enough, (something I share), but

then she forgets that during the times we could have, she fell asleep,

was not feeling well, having her period, back pain, and many other

things that always creep up. If someone were to count how many times in

a month or 2 months we have had sexual relations, it might not be even

once because of various different reasons.

Add to that the normal aspects of depression that come from the

medications and disease, and you have a period that will tax any

relationship. At one time, ( I am putting this on the medications), she

even asked me if I was having an affair. The answer is a definite no,

but, because of all the illness, medications, etc., you lose track of

time, and, while the question itself hurt, there was no validity to it.

Some of these issues are also seen when people have cancer and

receive chemotherapy, and in the HIV community. I am sure many others

can relate and tell their own stories, but, there is probably a common

thread in all.

Just remember that you are both going through difficult times that

will hopefully pass in the future. It just requires more understanding,

and support, but appears to be a normal problem whenever there is this

kind of illness to a family member. You are definitely not alone. I also

hope some others share with you what they have seen, and I wish you, and

your husband to be, the best. Marty

March 23, 2000