Dr. Cordas/viral TX

April 23, 1999

Dear Dr. Cordas,

I would also like to welcome you to this list and echo the appreciation

others have shared that you are willing to go that extra mile for your

patients, and have the integrity to treat all of us who are so ill with

dignity and respect. It is good for my soul (and body too) to learn about

physicians like yourself.

I am very interested in your protocal for treating viruses aggressively and

am wondering if there is a way you might be willing to share more about

which antivirals you use and how much success you are finding, either with

myself, or possibly also with my doctor. I have tested with very high HHV6

levels (Igg and Igm) and mycoplasma incognitus and am wondering about

stealth viruses but do not know if there is currently a way to get tested

for them. i have had high CMV titers in the past. I have moderately severe

cognitive problems and lots of neurological symptoms.

I understand that you may not feel comfortable sharing this information on

this site, but thought I'd at least ask. if there is another way for me to

discuss this with you I would greatly appreciate it. I live near Seattle WA

and would be willing to pay you for a phone consult.

All the best,

Beth

April 25, 1999

I have personally helped stabilize and improve about 50 to 60% of my CFIDS

patients with either agressive anticandida or antiviral treatments. Sometimes

both are required. I don't use antibiotics

for this disorder though I have found some Lyme disease cases who thought they

were CFIDS victims and they need antibiotics. Remember, if you have lupus

(refeering now to another post I read today)

then you can't say it overlaps with fibromyalgia or CFIDS. A true lupus patient

excludes the diagnosis of CFIDS and primary FM by definition.)

GAILRONDA@... wrote:

> From: GAILRONDA@...

>

> Steve, while there have been many patients who have seen some improvement

> with antibiotics, none have gotten *well* and there were many who had no

> benefit at all. We're funding Drs. Constance Knox and Carrigan for an

> in-vitro trial to try and find something to work against HHV-6A. We wouldn't

> have to do this if there was an effective method known and, with spinal fluid

> testing, it seems to be in the huge majority of CFS patients.

> Gail

>

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> 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.

April 25, 1999

Some folks with multple sensitivities resemple CFIDS and are misdiagnosed. They

do better to work with a honest environmental specialist

, T. wrote:

> From: " , T. " <S@...>

>

> Do you believe that anti-viral are always the best way to go. I test high

> for EBV but I have never really benefited from anti viral. Valtrex did

> nothing, gamma goblin made me sick, as did interferon. I tend to by into the

> notion that my problem stems from an over active immune system -- although I

> confess that I am no expert. I have responded to increased doses of

> antihistamine (lasted until the weather got warm) and I do get relief from

> prednisone -- although I pay for it latter.

>

> I had HS purpura as a kid and a lot of trouble with sore throats. Now it

> seems like I have the most CFS trouble during the allergy season but the

> allergy symptom themselves are well contain with normal allergy meds.,

>

> Well thanks for your interest

>

> Steve

>

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> Our scaleable system is the most reliable free e-mail service on the Internet!

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> 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.

April 26, 1999

In a message dated 4/26/99 12:20:27 AM Central Daylight Time,

sco338@... writes:

> Remember, if you have lupus (refeering now to another post I read today)

> then you can't say it overlaps with fibromyalgia or CFIDS. A true lupus

> patient excludes the diagnosis of CFIDS and primary FM by definition.)

i'm not sure i understand this. are you saying that a person cannot have

both lupus and CFIDS or FMS? does this get back to the part in the

definition of CFIDS where it says that tests must be done to rule out other

causes for fatigue? i guess i have a problem with this, because it seems

that symptoms like NMH and trigger points in the muscles aren't caused by

lupus. it seems that something else is going on. i have had CFIDS and FMS

for 8 years but last year i developed severe swelling in my thumb....x-rays

showed bone erosion and the diagnosis was psoriatic arthritis, a type of

inflammatory arthritis. does this diagnosis mean that i no longer

technically have CFIDS and that all my problems are supposed to be attributed

to the arthritis now? just curious....

April 26, 1999

Fibromyagia comes in three varieties. The most common is secondary to trauma,

disc disease, arthritis in your neck or back. These are not true fibromyalgia

which is a diffuse disease affecting the

upper body and the lower body. They are more commonly referred to as myofacial

pain syndromes. Next is secondary fibromyalgia due to rheumatoid arthritis,

scleroderma, lupus, polymyositis,

sjorgren's disease etc. Last is primary fibromyalgia when all of these other

problems are intellgently eliminated. Chronic fatigue problems are extremely

common with lupus. The latter is often

missed for years. Low ANA's are common with CFIDS and are nothing to be afraid

of. Higher titers (1:320 or more) should be reviewed by a rheumatologist. My

opinion nothing more.

TheFez062@... wrote:

> From: TheFez062@...

>

> In a message dated 4/26/99 12:20:27 AM Central Daylight Time,

> sco338@... writes:

>

> > Remember, if you have lupus (refeering now to another post I read today)

> > then you can't say it overlaps with fibromyalgia or CFIDS. A true lupus

> > patient excludes the diagnosis of CFIDS and primary FM by definition.)

>

> i'm not sure i understand this. are you saying that a person cannot have

> both lupus and CFIDS or FMS? does this get back to the part in the

> definition of CFIDS where it says that tests must be done to rule out other

> causes for fatigue? i guess i have a problem with this, because it seems

> that symptoms like NMH and trigger points in the muscles aren't caused by

> lupus. it seems that something else is going on. i have had CFIDS and FMS

> for 8 years but last year i developed severe swelling in my thumb....x-rays

> showed bone erosion and the diagnosis was psoriatic arthritis, a type of

> inflammatory arthritis. does this diagnosis mean that i no longer

> technically have CFIDS and that all my problems are supposed to be attributed

> to the arthritis now? just curious....

>

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> ------------------------------------------------------------------------

> 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.

April 26, 1999

Psoriatic arthritis can make you hurt and feel bad but you can have CFIDS with

it.