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In a message dated 6/6/99 10:52:09 PM Eastern Daylight Time, tab@...

writes:

<< Having serious breathing problems - >>

Christie, a lot of patients experience adult onset asthma. Has this been

ruled out. I know my daughter got it, too. Never had it when she was a

child. Asthma meds were a glorious help. She's no longer on them regularly,

but has an inhaler that's always with her and comes in handy a lot.

Gail

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Hi,

He just thinks all these weird things are infections. Wish I could take

the doxy, etc.

Going to Cleveland Clinic this month. Having serious breathing problems -

cannot move without getting really out of breath! I HOPE I am taken

seriously there! I mean that would be a change, wouldn't it? A miracle

actually!!!

Take care,

Christie

At 01:29 PM 6/6/99 -0700, you wrote:

>From: Michele Umbach <musharina73@...>

>

>Christie,

>

>I thought your new doc DID believe in CFS! Im so

>sorry to hear everything you are going through. What

>state do you live in? Maybe someone on the list knows

>of a doctor nearby who CAN help you.

>

>I know what you mean about brain fog. Ive been trying

>to fill out this SS App. and I just cant think! My

>Mom came over yesterday to help and it was just really

>pathetic. I was looking through some old papers I had

>written for school and its like I just cant think that

>same way anymore!!

>

>I hope things start turning around for you soon. Feel

>free to write to me personally if you need to vent!!

>

>--Michele U.

>

>Christie wrote:

>

> Well things are different! New Doc doesn't believe

>in

>autoimmune disease and has given me tetracycline

>antibotics which cause

>flares and have always upset my stomach greatly and

>immedialely. I take

>acidophollis, lomotil, eat lightly but cannot tolerate

>these drugs, and

>vver have! I'm so weak now that putting a load of

>laundry into washer

>makes me so weak, sweaty that I must recover for hours

>- this is

>absurd!

>Meanwhile today my 85yr mother cleaned out kitchen

>pantry and hauled

>stackes of magazines out of house! Now this is all

>wrong! And brain

>fog

>is actually getting worse! I don't think this is die

>off reaction.

>

>In addition, I'm on a heart moniter for 2 weeks, will

>have stress test

>and

>later in June I am going to Cleveland Clinic as I have

>too many things

>going wrong now. What I really need is a couple of

>adults willing to

>help,

>help in home -which I cannot afford and a 2nd phone

>line for computer

>as 4

>people use this one and we are not getting incoming

>calls - esp from

>DR's.

>My husband found my LEF products which I charged on my

>card and is

>angry -

>says this isn't proven medicine. This from person who

>won't let me

>have

>perscription money. I want my body back! I NEED to

>earn money to

>survive!

>

>

>

>

>

>_________________________________________________________

>

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  • 3 months later...

In a message dated 9/18/99 8:28:26 PM Pacific Daylight Time, tab@...

writes:

<< ny little thing can tire me - I drove to an afternoon conference today and

am exhausted! And I have to do a overnight and full day next weekend!

Thanks for your concern,

Christie >>

Hey Christie: Boy, do I know what you mean...I used to be such a jock. Now

a late night until 10pm is a feat for me. xo Shell

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Hi

These things happen to all lists I have been on at one time or another.

Such people need to be ignored or banned. PLEASE do not worry- We will

not be shut down!! People can pose as docs, and docs can make threats, but

they cannot shut us down. We have a right to discuss what we wish and will

continue to do so. So do not worry, we have onelist behind us as well as

the law. So far, nothing has happened here, but if it does, it will be

taken care of. Let's take a deep breath and continue with business as

usual! If you have concerns, PLease post them to list or to me.

Take care,

CHrisite

At 01:56 AM 9/22/99 EDT, you wrote:

>From: AdAgensee@...

>

>Christie...what is everyone talking about. Is there some stalker on our

list

>or something???? thats scary. xo Shell

>

>>This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

>

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  • 3 months later...

>Well, I spoke too soon! My computer totally crashed after I sent out that

>card! Wouldn't even turn on! It is now at the computer hospital

>for at least a week, and I am suffering net withdrawal.

So far so good here in land, though I may jinx myself by saying so. Our

PC is only 1 year old and seems to be happy. Stayed up to see in the new

century, year,..... got up at 7am to make a necessary phone call and went

back to bed til nearly 10am. Now my sleep cycle is all whacked out and

needing readjustment when the kids go back to school Monday. (Their

schedules too for that matter! The oldest has been up later than me most

nights.) Hang in there Christie!

-Theresa

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Hi,

Thank goodness for 2nd computer here! My computer was only year old too,

and it is still under warrenty, whew! But all my info is gone now, of

course. Decided paper is best backup! Would you mind sending me info

on Holiday Inn Wellness meeting? (SO glad you wrote!) I do want to

attend this. Yes, YK2 didn't happen at least so far! Think my

computer was just plain sick with virus.

Take care,

CHrisite

>From: " Theresa Romani " <tromani@...>

>

>>Well, I spoke too soon! My computer totally crashed after I sent out that

>>card! Wouldn't even turn on! It is now at the computer hospital

>>for at least a week, and I am suffering net withdrawal.

>

>

>So far so good here in land, though I may jinx myself by saying so. Our

>PC is only 1 year old and seems to be happy. Stayed up to see in the new

>century, year,..... got up at 7am to make a necessary phone call and went

>back to bed til nearly 10am. Now my sleep cycle is all whacked out and

>needing readjustment when the kids go back to school Monday. (Their

>schedules too for that matter! The oldest has been up later than me most

>nights.) Hang in there Christie!

>

> -Theresa

>

>>This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

>

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  • 3 months later...
Guest guest

I in no way way attempted to boot anyone off!!!

Good grief!! I never thought you were doing that at all!

-----------

How could you even suggest that from my posting???

I didn't! At least I sure didn't mean to!

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

Please see this as it was written and not take such a defensive and slanted

attitude. I am pointing out that this treatment has been proclaimed over,

an over, an over, an over, an over. If some want to continue to do this;

over, an over, an over, an over an over - than do we need another list

delegated to Cheney treatment?? If you are freaked by this - then this is

your opinion.

>

>This particular list; onelist is for ALL experimental

treatments - not exclusively Cheney's. Expressively running his treatments

in the ground is not favorable to all - even though it is to you.

Treatment discussions go in cycles. It was interferon, cheney, whey, abx's,

etc.

Actually CHeneys stuff is beyond me because I can't afford him, but I keep

an open mind about these CFS docs. As I said, all I got from CFS doc here

who trained under cheney was an empty bank account. But at least info is

here and we can choose to try it or not. Yes, this list is for all

treatments, reaearch and anyone can bring in a new topic.

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

>I do not mean to fuse your temper - just stating my opinion. Please try and

not take these postings so very personal or attacking. They are certainly

not meant to be.

>Shari

I'm not mad, silly! It's just that the responses to your post were getting

heated and I didn't want bashing. And I really have been waiting to hear a

cheney post from you!

I am glad you are back, and can we make up?? And can I still come to visit

you if I need interferon? Please????

Take care,

Christie

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Guest guest

Hi, I am a new member and also have a very slow learning curve.

I am grateful for the repetition, much is new to me and I do hope

that Cheney's treatments continue to be included in the discussion.

I have so much to process and consider. I am ever grateful for

the support. L

> I in no way way attempted to boot anyone off!!! How could you even

>suggest that from my posting??? Please see this as it was written and

>not take such a defensive and slanted attitude. I am pointing out that

>this treatment has been proclaimed over, an over, an over, an over, an

>over. If some want to continue to do this; over, an over, an over, an

>over an over - than do we need another list delegated to Cheney

>treatment?? If you are freaked by this - then this is your opinion.

>This particular list; onelist is for ALL

>experimental treatments - not exclusively Cheney's. Expressively running

>his treatments in the ground is not favorable to all - even though it is

>to you. I do not mean to fuse your temper - just stating my opinion.

>Please try and not take these postings so very personal or attacking.

>They are certainly not meant to be. Shari

>

>

>

>

>This list is intended for patients to share personal experiences with each

>other, not to give medical advice. If you are interested in any treatment

>discussed here, please consult your doctor.

>

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  • 1 month later...
Guest guest

Christie,

I know we end up with so many malfunctioning body systems it's hard to

determine the source. What we are doing now seems to be working better than

other approaches we have tried. I have just tried to get by the best I can

with my thyroid meds(hashimoto's) and some adderall. I've tried to hold off

on insurance for me until I can get some things paid off. Plus I'm hoping

to get in the trials which would not require ins. or $$.

Thankfully I have a very supportive hubby, who has gone along with

everything. At one point we were all on neutralizing allergy shots. Then my

younger son (10yo) was seeing another Environmental Dr. doing homeopathy,

nutritional therapy, NAET, etc. My 10yo also had alot of tests run like

one's from Great Plains, Immunoscience(?) urine analysis, hair analysis,

test for mycoplasma. Then he was treated by a ND with hydrotherapy,

nutritional, homeopathy. I also tried some of the various chiropractic

treatments. Then I took him to a psychiatrist who worked with psychotropic

meds and believed if you corrected the brain the immune system would

normalize. I did many things that were either not covered by insurance or

were not covered very well.

At this point I'm more concerned about my boys since their brains are still

developing. The effects from this illness being untreated would be much

more devastating to them than to me. Plus I am concerned about working my

poor hubby to death.:)

My 10yo's OCD appears to be just one more symptom related to the immune

dysregulation. It fit's the description for PANDAS.(I'm just not sure if

strep is the trigger) Last year after trying the psychotropic drugs he had

handwashing, anxiety, extreme night-time fear, severe oppositional behavior,

deterioration in handwriting, etc. With these problems on top of the

original, you can imagine what dealing with this was doing to my health. So

when he is doing better it does help me some.

Cheryl

>

> It's Christie from CFSx list. With this history with you and you

children

> have you considered seeing a metabolic doc or one who specializes in

> genetics? After being dx'ed with CFS, then lupus and lyme, now it looks

> like a disease of the mitochrondria, and my kids have same troubles as me.

> I know what you mean about money, but you need tx too - to care for

them!

> What kind of tx are your boys getting? Are B vit and Co-Q10 among them?

>

> I am going through this awful struggle with my son who also has OCD and

with

> me as nothing really has helped. I took this list over to try to help

find

> answers - and both lyme and mito diseases have been dx'ed in people here

> when before it was CFS - which can be so many things! Please let me know

> how you and your sons are doing. Thank you.... CHrisite

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  • 8 months later...
  • 4 years later...

Hi Florie,

Just wanted to say it takes a few weeks or more for your body to fully adjust to

the medication. Lexapro has been a godsend for me. I've been taking it for

several years now (at a lower dose now). I had depression since I was a child.

I had a major depression at 8 years old after my family and I made a major move.

I also had major depression while going through a divorce from my first husband

and after my father died. It's helped me feel " normal " and live a pretty normal

life, (except for some PMDD). Be patient and give your body some time to

adjust. I have also previously taken Wellbutrin and could not tolerate it.

Lexapro has been different and positive for me.

Christie

Christie, I thought Lexapro has only been available since lke 2001? Larissa

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  • 9 months later...
Guest guest

Christie.Is it AIH that your husband has? Or which liver disease? We are

better able to help you if we know which one your husband has. And, welcome to

the group.this is the first step to more knowledge. I have a question.......is

your husband seeing a hepatologist or a basic gastro? He needs a liver

specialist. I also want to tell you that you need to have copies of ALL his

blood labs to keep in a folder. It is important that you two always know what

is going on.i......t is not in his best interest to just go along with whatever

the doc says.be informed ............, Joanne Cathcart Moderator (PBC

Post Tx)

Jj Cathcart

jjcathcart@...

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